History

Saturday, May 23, 2009 2:03 PM CDT

Have you ever been at a loss for words? Have you shared something with someone and observed a shocked, speechless expression? That has been happening frequently in our lives at present. It has been a few weeks since I’ve updated our journal and several of our friends have asked if things are ok. In all honestly, the truth is that is not the case, at least not consistently. Since you’ve come into our lives and blessed us with your friendship and support, through the good and the bad, it’s time to share some of what has been happening. May times during various trials we’ve faced even several fights for our lives, be it the girls, Tom’s or mine, we’re convinced Jesus is the same yesterday, today and tomorrow. People and circumstances may cause disappointment but Jesus has never failed us. The God we love, our Jesus and his word are alive and close to our hearts. On this weekend of “Remembrance and reflection” it is clear that whatever we've needed, God has provided--in abundance.

This Monday has been designated as the day to celebrate Memorial Day. A day we are called to remember the tremendous sacrifices of the men and women who fought, suffered, and often died, during the formation of our Nation and to preserve our freedom. I believe it is also good to remember the great statesmen who founded our country – men like Washington, Hamilton and others who believed in God and the Bible and prayed as they planned. When the Declaration of Independence was signed, those men pledged their lives, property and sacred honor as they gained liberty for our Nation. Some lost their homes, some lost their lives, but none lost their sacred honor. I’m also, remembering the scientists who believed in God seeking to honor Him in their research. Men like Pasteur, Fleming, Curie and others. Yet, for many, Memorial Day is just another Holiday, a day for pleasure and enjoyable family activities, rather than a day of thankfulness and prayer. “Memorial” is used in the Bible in Exodus 3:15 “and God said unto Moses…this is my memorial unto all generations”. Also, Psalms 135:13 “Thy name, O Lord, endureth forever, and thy memorial, O Lord, throughout all generations.”

God has a specific journey for each one of us. He alone knows what that journey will be. If all we are grumbling at how hard life is we tend to miss the deeper lessons He wants to teach us. A portion of the journey God has chosen for our family includes a mom (mom) living with significant chronic illness and two daughters living life to the fullest with significant, progressive neuromuscular disease that affect most aspects of their lives.

For our family, so many of our recent concerns seem to be at a standstill. Prayer requests:
* Annalies and Kristen: complete recovery from the respiratory infections that they have (which are lingering). The gyne related surgery still needs to be coordinated and scheduled between Children’s and Froedtert. Comprehensive scheduling of follow up and new consultation appointments throughout July and August for both girls needs to be completed.
* Kristen: patience and understanding as she starts several new subjects toward completion of her diploma.
* Josh and Dawn: their baby is developing well and the baby continues to appear healthy, finances to pay the expenses related to their baby. Josh and Dawn have to come to terms with the limited family medical history we have available to them since Josh’s adoption was “closed”.
* Tom: patience as he helps care for his Mother given the changes in her memory and general attitude.
* Joanne: reduction in symptoms of a respiratory infection and secondary lupus flare (thanks for sharing girls)
* Family: reduction in financial stress related to high cost of utilities, gas, additional prescription (not covered by insurance)and medical related travel. Safety when traveling for medical care and to and from work (increased gang warfare in areas of drive to and from work). Job protection since U of C may be reducing the workforce in June or July. The IRS is finally acknowledging receipt of our 2005 medical receipts (still hasn’t acknowledged receipt of the 2006 receipts). 2005 has been assigned to “an agent”. Praying for swift acceptance of the medical bills and receipts, with full resolution and return of the monies we have already repaid for 2005 and continue to repay for 2006.

Tom, Annalies, Kristen, Josh and I have been discouraged more times than I can remember. God has always faithfully picked us up, encouraging us in some way, often through your friendship and prayer. Throughout every twist, turn and trial He has been faithful. Our challenges may not have disappeared but we have been given the courage and strength to move forward. The choices are few. We can either go through life with or without God growing closer to Him or angrier at Him. This life is difficult enough. We don’t want to learn lessons repeatedly because we didn’t get it the first time. Then our prayer is, "Lord, don't let us fail to learn what it is you are trying to teach us. We don't want to have to do this again, please, not again."

Similar to the perilous and uncertain times in the course of history, we confront similar challenges today. The economy is continuing downward, jobs are lost everyday with almost sure promises of more people losing their jobs. Foreclosures on homes are continuing and new diseases are emerging. These times are definitely uncertain. We don't know what is ahead of us in our chaotic world of change. But we do know when our hope and confidence is in God; the winds of change will not blow us over or cause us to wither.

We have all experienced things in life that we wish we could skip right over. Maybe others are finding themselves in a similar position at present. Reflecting back over the difficult things that have happened in our lives, those very things have made us stronger, individually and as a family. With each new trial that comes our way we are stronger and continue to grow stronger than before. Our prayer for you is that in these uncertain times we will each be drawn closer to God, so that we might be a source of encouragement and hope to those who live with uncertainty in their lives. We want to flourish in whatever circumstances we find ourselves in.

The United States has seen God do miraculous things. In a relatively small time span our country has become one of the greatest nations in the world. Given the burdens and stresses of current times it is easy to diminish the memory of those who have gone before us, it is easy to forget. Not only do I desire to honor those who have died in service to our country, but also those who lived for the Lord (especially my mom), and those whose ministry helps guide us through our personal difficult journeys daily. The parents, teachers, pastors, physicians and friends deserve to be remembered and honored as in the future we will have a Great Homecoming. Rudyard Kipling said it best, “Lord God of Hosts, be with us yet lest we forget, lest we forget.”

Remembering....

Wednesday, April 29, 2009 0:00 AM CDT

"Two are better than one, because they have a good return for their work: If one falls down, his friend can help him up." - Ecclesiastes 4:9-10

The past few weeks were humdingers. Time just seemed to fly by and everyday I thought I would post on my journal...and nothing felt comfortable within my heart to post about. It's hard for me to go this long without providing an update of some sort; but to be honest, the past few weeks has been tremendously difficult. Today is a new day and I am so glad. I had trouble putting my finger on what God would have me take from all that has transpired and what to share. I am still not completely sure that I know, but I felt like a new journal entry was long overdue. It’s been too long. I received quite a few emails and calls asking how thinks have been going and when I would update. Thank you all for caring and being a part of our journey. It warms our hearts that so many of you share this with us. I typically don’t post until the words come to me and I have a feeling of peace about what and/or how to post. Sometimes it takes a while, like now. But when the words and thoughts come, they usually come in a rush. So with out further adieu…

Given I’m a person who values my space and quiet time; there have been times in my life when I have had to remind myself of the joys of friendship. If you are similar to me, you may find yourself actually having to put yourself in situations where friendships have a greater chance of being sparked, such as in internet groups of mutual interest, clubs and organizations. Sometimes a friend is right under your nose all along, but you were too busy or unaware to see! That potential friend may now be in the form of a fellow employee, a nice neighbor or the parent of the child in the doctors’ office waiting room. Other times it’s good to spend time alone with our own thoughts, but time spent with a friend is also profitable, even to our spiritual welfare. Friends can recharge us and help pick us up when we are feeling low, and those friends who share your love of God can also help pull us from temptation or destruction when they are caring enough to encourage you toward righteousness.

A true friend, and the gift of friendship, is a blessing from God. Friendship is in itself, is a form of love, and love in any godly form is a gift from the Lord! Today, if there is a special friend who has made a positive difference in your life, won't you consider dropping them a note to let them know how special they are, and how much you appreciate their attention and affection? While you are at it, won't you also consider the ultimate friendship, which is a relationship with God!

Shhhh.....do you hear that?? That is the sound of me losing my mind! I have to laugh otherwise I would be crying all of the time. Let me get you up to speed....projected minivan repairs $4800 (for a minivan with almost 100,000 miles values at less than $5,000) leading to a decision to trade the vehicle for a newer road worthy model and additional monthly payments, travel to both Milwaukee and Cleveland for medial care $120 gas and $480 hotels plus meals on the road, additional $2,400 IRS repayment pending ongoing audit with a request to pay an additional $9,000 within two weeks (have to speak with our accountant about this! YESTERDAY..... Tom’s minivan light indicating a problem with the oil/engine warning light came on. The metabolic specialists have modified a number of prescriptions for both girls and added many new medications none of which are covered by insurance or Medicaid totaling an additional outgo of $450/month! (Now, I know that is a minimal thing in the grand scheme of things, but it is just the principal of the matter!!) AAAAAAHHHHHHHHHH.....there that feels better. As several friends recently reminded me....at least I have a job and a terrific family. So my friends’ thank you for reminding me what is important.

On the medical front: We are in the throes of a partial transition to the adult side of medicine for both girls now. And the transition of doctor's when the children reach adulthood for several subspecialists has been a nightmare, in part, because of the attitude of some that they know everything and parents know nothing. It's bad enough we deal with our children being sick, and then we have to fight tooth and nail to get doctor's to understand you truly know what you are talking about even though you are not a doctor.

It is truly one of our current nightmares. The gist of everything is that the misunderstandings and lack of advocacy worsen, along with NO coordination of care, the inability to obtain consult notes, lab reports, etc., failure to communicate not only with us but with other physicians, NO follow through, and failure of the physicians, their offices, medical records, etc. to provide the letters and/or documentation required to maintain home care services, Medicaid waivers, i.e. the list is long. Almost everything has fallen into my lap to figure out a way to get everything that we need. Our situation is already very difficult given we have two teens/young adults that have a chronic, progressive multi-organ system involved illness (who happen to be technology dependent) so this was just one more layer of multiple, complex challenges. Multiple challenges and obstacles are pretty much thrown in our path every time we try working hard to create a smooth, functional, SAFE transition.

Medically speaking, things are very much up in the air for many of the subspecialty practices. We have lots of frustrations, lots of confusion and lots of discussions. It would be refreshing to talk to someone who could brainstorm with us that could actually be proactive and successful in paving the way for appropriate care for individuals with multiple medical issues. There is so much medical confusion going on.....nobody knows what to do, how to proceed, and/or has a willingness to assist in getting all of the required departments/physicians to function as a “team”. Many (almost all) prefer we go elsewhere (CHW) for some sort of medical management of the mito disease which for us is like banging our heads against a wall because we know there is no other place better to send us that knows about mito and how it impacts each daughter individually and how extensive the organ system involvement is and how complex the management is. I feel like the girls are a ping pong ball right now being tossed back and forth....nobody wanting to take responsibility for actually critically thinking through things with me and figuring things out. Why am I having so much trouble finding doctors who are willing to do this for me and the girls (working together with the other physicians)???!! I try SO hard to advocate for them and yet I still don’t have a good leader for our team on the adult side of medicine. Not even beginning to consider the need for coordination of care, issues related to travel, insurance, Medicaid, etc.

The same frustrations and concerns I had regarding transition last year are still present, actually worse since 1) trying to deal with additional organ system involvement and 2) trying UNSUCCESSFULLY to have four different surgical procedures, between the two girls, completed at Froedtert. I am too frustrated to get into some of the conversations and things that have occurred over the past months. Misconceptions and lack of advocacy continue to occur. I’m so tired of being told there needs are too great or you’ll have to get and give the platelets (or medications), you’ll have to do ALL of the postoperative care, monitoring, intervention, assessment, etc. I am and want to be the mother to my daughters, not their nurse and pseudo-physician as well.

To be fair, Dr. Peltier (Neurology) has been superb, thinks outside of the box and has repeatedly tried unsuccessfully to advocate for my girls. She openly said during their last clinic visit that my girls are, by far, the most complex patients she has ever cared for. She also said a number of patients with other dystrophies continue to receive much of their care at CHW because too many physicians have failed to meet their medical needs with disastrous results. Her one comment truly “hit home”. The gist of it was, “if it wasn’t for the superb care they have received at CHW they would not be alive today, sitting here in my office.” Electrophysiology has also been superb. But, even that physician (along with anesthesia) asked to perform Kristen last surgery at Froedtert with her admission and postop care at CHW. GI identified a problem with Annalies, referred her for surgical intervention and then the surgeon at Froedtert refused to treat because she was “too complex”. Did the GI doc then go to bat for her? NO.

The adult medical teams in Illinois are worse. Most have either refused to provide care to the affected adults (and often children), admitted the patients to psych believing their medical issues had no medical basis or refused to provide treatment as “there is no effective treatment” so “go home and die quietly” (not acceptable in my book).

I have heard very mixed reviews for the young adult patients (or their parents) that have tried to transition from hematology and pulmonary medicine. Many continue to receive at least a part of their care from physicians at CHW. Given most of those patients don’t have needs as great as my daughters; it is no wonder that we are having such a hard time. Kristen is now the oldest surviving young adult with CCHS cared for in Wisconsin. The two that were older both passed away after unsuccessful attempts at transition to the adult side of medicine. Is it any wonder that I’m quite concerned??? My girls may have mito but mito doesn't have them.

Annalies is finally recovering from the surgery to repair her hip. She’s dealt with her share of unanticipated complications, but throughout the past week it has become obvious that this surgery has been successful. Dr. Lyon saw her for a post op check yesterday and was quite surprised and impressed at how we’ll she is doing and is finally admitting that the injury to her hip last August was probably responsible for all of the pain and inability to sit, walk, or bend that she experienced. Yes, her back does have herniated discs, but those are not responsible for the symptoms. Dr. Lyon said he can honestly say, now, that retrospectively he is glad his peers convinced him that the surgical repair was indicated and should be done without further delay.

Gynecology has finally come to understand why Critical Care and Neurology all feel hormone therapy and the related risk of stroke is not an option for Annalies or Kristen (it’s taken a year). So, Dr. A has finally agreed to proceed with an endometrial ablation for both girls on May 19th. He wanted to do the surgery at Froedtert, but those issues I referred to above were quite unnerving to both Internal Medicine and Anesthesia. So the procedures have been moved to CHW which gives Annalies, Kristen and me a sense of relief and comfort. Praying the procedures will be successful and with decreased bleeding, some of the bone marrow issues Hematology has been monitoring will improve. Dawn will be traveling with us to Milwaukee to assist with monitoring both girls after they are discharged.

Dr. Cohen, the neurometabolic specialist at Cleveland Clinic saw both girls last week. He made significant modifications in their “mito cocktail” as he determined that their metabolic methyl pathway is defective causing the inability to metabolize folate, and B12 resulting in something quite rare called pipecolic academia and increased encephalopathy (not good). He also started Kristen on an essential fatty acid replacement as her levels are quite low from either malnutrition or malabsorption.

Kristen is waiting for a consultation with a Nephrologist. A problem with her kidney function was identified using home monitoring, and verified by the Urologist at Froedtert. He requested a referral at Froedtert, yet no physician was willing to accept the referral (from either Urology or Internal Medicine). So, now we are waiting for a formal consult with one of the Nephrologists at CHW that follows a number of children with mitochondrial disease that also have signs/symptoms of renal involvement. The initial consult was suggested in February. It’s almost May and we are still waiting.

Dawn’s pregnancy is progressing well. Her due date keeps changing, but hopefully a healthy baby will be added to our family late in November or early in December. Josh and Dawn are quite happy with their growing baby. They can now see limbs and a beating heart on the ultrasounds.

Honestly, as I write and reflect on all that has transpired throughout our journey recently, I have a smile on my face. :) It may seem like the basis for a movie but it truly has shaped me into the woman and friend I am today! Fiercely loyal and genuinely grateful for a smiling face and a warm welcome!! I still find myself wary of "stepping on toes" and tend to cautiously enter situations, especially regarding caring for medically fragile children, with great sensitivity. Sadly, even as an adult, I have still found people (although fewer and far-between) who have "issues" with me or with our family... In retrospect, that's all part of being human. I would love to be able to please everyone and avoid conflict at all costs but sadly, it just doesn't happen that way all the time. I am blessed to say, with all confidence and joy that whenever I have prayed for friends, prayed that God would send just the right person into my life, into our lives. He has been SO FAITHFUL in doing just that. There may have had a few along the road of life who have not responded to me (or us) favorably but, for every stinker out there, we have made HUNDREDS of amazing, encouraging, fabulous friendships for which we are so very grateful!!!!

This has been a very unique, bittersweet journey and we are still, at times, trying to understand our own thoughts and related emotions about it. We continue to have a very long road ahead of us. I have shared with others before that sometimes we feel oppressed, discouraged, and somewhat confused about why our girls, our family, has to confront so many challenges in order for good things to happen......that God would use us in mighty ways..... And if you followed our journey you know that we do our best to praise God NO MATTER WHAT the news was for that day or what we as a family or any of us individually have to endure.

This continues to be a journey, and I have full confidence in the fact that God continues to be very present, even in the days that are hard. To Him be the glory. So, if you are reading this, we want to THANK YOU for your GIFT of friendship in our lives. We are blessed beyond words to have been touched by you in one way or another... God has been so faithful to me, to US, to have given us the ability to fellowship with one another and it is SWEET. If you focus on being thankful, it's sure hard to dwell on the disappointments of the day, right! We are GLAD and we love you!!! The message you leave in our guestbook, Facebook messages, email and calls mean the world to us and make our days brighter.:) Though we all grow weary and stressed at times the Lord is our strength and we still have great peace as we rest in His shadow. Your prayers and support are greatly appreciated.

Sunday, April 5, 2009 11:10 AM CDT

Easter: A Hope Transfusion
by Charles R. Swindoll
Revelation 1:17-18

Easter and hope are synonymous. That special day never arrives without its refreshing reminder that there is life beyond this one. True life. Eternal life. Glorious life. Those who live on what we might call "the outskirts of hope" need a transfusion. Easter gives it.

I think of all those who are battling the dread disease of cancer. Talk about people living on "the outskirts." They fight the gallant battle, endure the horrible reactions of chemotherapy, and anxiously await the results of the next checkup.

And then there are those who still grieve over the loss of a mate, a child, a parent, or a friend. Death has come like a ruthless thief, snatching away a treasured presence, leaving only memories. What is missing?

Hope. Hope has died. There is nothing like Easter to bring hope back to life. Easter has its own anthems. Easter has its own Scriptures. And Easter has its own proclamation: "He is not here, for He has risen, just as He said" (Matthew 28:6).

When Christians gather in houses of worship and lift their voices in praise to the risen Redeemer, the demonic hosts of hell and their damnable prince of darkness are temporarily paralyzed.

When pastors stand and declare the unshakable, undeniable facts of Jesus's bodily resurrection and the assurance of ours as well, the empty message of skeptics and cynics is momentarily silenced.

Our illnesses don't seem nearly so final.
Our fears fade and lose their grip.
Our grief over those who have gone on is diminished.
Our desire to press on in spite of the obstacles is rejuvenated.

Our identity as Christians is strengthened as we stand in the lengthening shadows of saints down through the centuries, who have always answered back in antiphonal voice: "He is risen, indeed!"

A hope transfusion awaits us. It happens every year on Easter Sunday.

Alleluia! Jesus lives, and so shall we!

The Easter feeling does not end. It signals a new beginning, of nature, spring, and brand new life, and friendship, peace, and giving. The spirit of Easter is all about Hope, love, and joyful living. ~Author Unknown~

Phone calls and e-mails from sweet friends have beckoned me this evening to finally sit down and write an update. I am sorry I have been so bad about this. I know that I get so anxious when I haven't heard from someone or seen an update in a while but when it comes to me I don't think about it. I was forced to find a better balance between my "update" time and actually getting caring for my family, but it's also come at the price of not letting my prayer warriors know what is going on with our family and also not being able to reach out to others who may be struggling and keeping in touch with those who have traveled the road with us. Know that there is not a day that goes by that I do not pray for all of our sweet friends and their families and what is going on with them now. Also know that if you have reached out to us and we haven't returned the communication, you are in my heart and in my prayers.

Easter is later this week, and its timing is perfect as our tulips are abundant and ready to bloom, in all their colorful glory, defiantly standing tall despite the blustery winds that streak around corners with surprising force. The birds have returned and I see green grass under dead leaves along the fence. Life is returning to the community. Although, there is only the hope of real spring at the moment... faith that after the cold and dark of winter... spring always arrives. We're experiencing a typical Chicago April with gorgeous weather for a few days and then a return to cold, damp and SNOW. Today started out very chilly but by early afternoon, we were shedding our jackets and enjoying the warmth. A cool down is in the near future but each time the temperatures fall, they don't fall quite as much as before. That is always a good sign. I am so ready for sunshine and warmth. I must say, this touch of early spring weather is lovely for a recovery from a winter of confinement. Some fresh air, the birds... and a touch of light spring cleaning later. What a wonderful time of the year. I love this time of year. After being cooped up in the house all winter long it's so nice to see blooming flowers and budding trees and the grass turning green again. Spring time is wonderful. I think it's so fitting that along with springtime comes new life! What seemed to be dead looking for so many months suddenly shows signs of life! It's a refreshing time of year isn't it?
Everything seems new and fresh again.

Spring is my favorite time of the year and Easter is my favorite holiday. I love how my garden comes to life. I love Easter bunnies, the wonder of the Cross, and the awesome power of the resurrection. I like to think about what that day must have been like. What were Mary and the other Mary feeling when they realized the One they loved was living once again. Wow.... I wandered around my garden this weekend searching for renewal and refreshment. New life abounds all around. I like to think about how the earth comes alive with new life at the very season our Savior resurrected and gave us new life. Surely God planned it that way. With spring in the air, I'm especially drawn to the fresh colors and elements of nature. Yesterday, Josh and Dawn stopped by to visit. During their visit with us they shared that they will be welcoming a new baby into their lives and ours! A new baby is one of the most precious miracles of life. They give us a reason to live and need to be treated with the utmost amount of care. A life which we will hopefully be able to watch grow through the years.

These past few months may have been the most difficult for us. Then again, they may seem like the most difficult because they are the most fresh in my mind. Annalies is recovering from her recent orthopedic surgery. This is the second surgery she has had in two months and, by far, has the most difficult recovery. We were also informed, by Urology, that Kristen's kidney function is showing clear signs that mitochondrial disease is now impacting this organ system. Hopefully, Dr. Rice will recommend a consultation with a Nephrologist that is knowledgeable in CCHS, mitochondrial disease and renal dysfunction. The Urologist on the "adult side of medicine" can think of no physician that is knowledgeable enough to assist in this matter. Tomorrow morning we travel back to Wisconsin (actually we may leave today based on the snow storm that is approaching the Midwest) for another consult with a gynecologist to discuss the options available to treat excessive bleeding associated with each daughter's respective mitochondrial disease related bleeding disorders. All of their physicians rejected his initial recommendation based on the high risk of strokes. Tomorrow promises to be interesting.

This past winter has not been characterized by joy or victory. What may not be evident to anyone but me, however, is the fact that HOPE has been there every step of the way. It is HOPE alone that has pulled me through. Christ faced my sin and separation from His Father in order to give me that HOPE. When the Bible talks about HOPE, it is not exactly what we know as hope today. Biblical HOPE is not looking forward to something and wanting it to happen but doubting whether it will happen. The HOPE that Christ offers us is a confident, doctrinally founded belief that God will do as He has promised. It is this HOPE that has seen me through some very hard times, times without feeling any joy or sense of victory. Dark days with a constant undercurrent of HOPE: my confident belief that God has brought us to this place for a purpose and that He will bring us through, the knowledge that someday we will be free from our own willful choices. This too shall pass.
And so, this week we will celebrate the resurrection, worshiping as a family. The truths of those beautiful old songs find their way straight to that raw place in me that is still struggling and not quite through yet. I may be less joyful this year, but I will be more thankful than ever: Christ's HOPE is certainly real to me today.

What does Easter mean to you? When I was a child I thought Easter was only about the Easter Bunny. Much like I thought that Christmas was only about Santa Clause. We'd dye and color those boiled eggs and place them out for the Easter bunny to hide before us kids went to bed the night before Easter. We couldn't sleep just thinking about maybe catching a glimpse of the Easter Bunny coming into the house and leaving us baskets of candy and goodies and taking the time to hide those eggs we boiled and colored. Then when we'd finally wake up early Easter morning, we'd run to the living room and see what the Easter Bunny Brought us! The rest of the day was a time of family reunions and lots of food and hiding and hunting Easter eggs all day long. It was great!

It wasn't till many years later that I learned what Easter was all about. After being disappointed at realizing and knowing that the Easter Bunny was all a lie... I was even more surprised to know the true meaning of Easter. For many years even after learning that the Easter Bunny wasn't real, I still never heard the true Easter story till much later in life. I mean I knew it had something to do with Jesus, but I really never knew what? I knew it was a religious holiday, but I never knew why or how? You see, unless you are raised in the church or able to attend once in a while, you just don't know! Easter is what you see in the stores, or what you are told. It's very easy to get caught up in the commercial side of the holidays isn't it?

You know, I look forward to the days when my grandchild will be old enough to come over on Easter and enjoy a fun time with family coloring Easter eggs and hunting eggs all day long. But I also look forward to taking him/her to church and answering all his/her questions when he/she wants to know what Easter is really all about. I can't wait to tell him/her about Jesus. My hope for our grandchild is that he/she will give his/her heart to Jesus and make Him her Savior. Then he or she will know that from that day forward the wonderful sacrifice and gift that Jesus gave us that first Easter Morning. Then when looking at the blooming plants and budding trees and green grass our grandchild will know that his/her life is the same way. They will never die, but have eternal life through Christ Jesus her Lord.

There's nothing wrong with having fun as a child and enjoying the games of Easter, but what a shame if we go through life and miss the true meaning of Easter. I have been celebrating Easter since I was a little kid. Most of my early memories are of spring mornings, baskets full of candy and new "hand-me-down" dresses, eating ham at Grandma's and spending time with our extended family. I also remember Easter morning worship in church and how the church would have communion in remembrance of our Savior had risen from the dead.

It was always a special morning but it wasnï¿½t until I was 17 years old that I really understood the magnitude of the meaning, for me and for all humanity. As a matter of fact, now at well over 50 I am still yearning to better comprehend this most profound event of all cosmic history! It is well stated in "The Gospel Song" -

"Holy God, in love, became
Perfect man to bear my blame
On the cross he took my sin
By his death I live again"

"Jesus our Lord, who was delivered up for our trespasses and raised for our justification."
Rom. 4:24b-25 (ESV)

A message so simple that a child can understand but so profound that not even the most gifted theologian can fully grasp its significance!

I would be remiss if I failed to say how incredibly, unbelievably blown away we've been by all the comments and emails and Facebook messages and cards we've received. You have no idea just how much of a blessing you all are to this family. Seriously--I'm not just saying this. The wisdom and the love in your words and actions is just... overwhelming. Knowing how many people are kneeling at the throne of grace for us gets us through some of the hardest times. Thank you, one and all.

May you enjoy all the blessings of Easter but most of all, may you stand in awe of Jesus Christ, Risen Savior and Lord, and your forgiveness and new life in Him today!

He Is Risen! Happy Easter

Saturday, February 21, 2009 11:51 AM CST

I almost do not even know where to begin. I do not want to write a book, but the last few weeks (especially the past week) have been so crazy. The roller coaster of life has brought us a wide variety of emotions! We are united as a family and continue to put all our trust in the Lord. Whether in paradise or in the toughest storm... we will praise Him! Let me start off with my devotional verse for the week.

“And we know that for those who love God, all things work together for good, for those who are called according to his purpose.” Romans 8:28 (ESV)

People like to quote this verse when things "go wrong". Some people see it as everything that happens will be good. Well, the last week has been really rough, but we seem to be managing. God truly has blessed us!! I know all the prayers are working because we can feel God's arms around us and hear His voice saying "I am in control; nothing happens that I don't allow. I am with you—“

Romans 8:28 is one of those verses that can easily be misunderstood and/or wrongly interpreted. What does the verse not say? It does not say everything that happens will be good. It does not say that. All things that happen in life work together for good. It’s not the same thing. Some things that happen in life are great. We can see the blessing in them right off. Some things are painful, traumatic, or sorrowful, and we rely on God to know what he’s doing and see us through. Most days fall into the category of ordinary. They just get lumped into the pile of just another day. But God uses every event - good, bad, and whatever - to our ultimate benefit. I believe Romans 8:28 is something like baking biscuits.

Maybe you have to be from the South for this analogy to work or learned to bake at your mother’s knees, like me. If not, you can go into McDonald’s and use your imagination. Biscuits start with flour. My mom used self-rising flour, but it doesn’t matter. I would never go into the kitchen, take a big handful of flour, and stuff it into my mouth. It would turn into a doughy paste and ugh… Flour is no good for snacking on. Grandma probably cooked with lard, but I use Crisco (vegetable shortening. Again, no one takes a big tablespoon full of that and washes down their flour with it. I’ve never liked buttermilk either, but some people do. My mother has been known to us milk too old to drink, but not exactly spoiled yet, and put that in biscuit batter. While mixing all these ingredients, the oven has been preheating to 400 degrees. You or I would not last too long at 400 degrees Fahrenheit, but it does wonders for biscuits. All of these components, disgusting on their own, when put together and baked in the oven for only a few minutes, produce big, fluffy, flaky buttermilk biscuits. A hot biscuit almost slices itself into, and butter melts into one in seconds. I could eat a dozen.

Romans 8:28 is like that. Each single event, taken individually, may not look like much. It could be awful. But God works them together, like Mom’s biscuits in the oven, to produce growth, blessing, and bring his purpose in our lives. Paul says that now we see through a glass darkly. We don’t always understand what it is that God is doing in us at the time. But we trust him to do a good work in us.

The events this week, in our home, have been many. We learned late last week that the IRS has sent notification to my employer to garnish wages. We had not been notified. This was in response to an audit of medical bills to which we had responded last April. What we didn’t know was that our records were received but never processed or audited so to their computer system it was as if we failed to respond. Our accountant intervened and all of the requested records have been resent and the levy has been reversed pending review. At least our accountant now has an actual name and direct point of contact. We have been told the IRB is often ruthless to those of the middle class, so we will see how this finally resolves. Our accountant said we should continue to pray for an understanding, tenderhearted agent that is willing and open to learning about the girls underlying disease and the extent of their medically necessary care and extreme needs.

The Orthopedic surgeon called. He will be scheduling surgery to evaluate and repair the tear and abnormal bones in Annalies’ hip. Critical Care is working to arrange for gynecology to do the additional surgery that has been suggested at the same time. Hematology is aware and will order the blood products needed before and during those procedures. We have made all of the changes the Sleep Lab doctors suggested to Annalies ventilator parameters (increased pressures). The Neuro-urologist also called and he has ordered additional studies to evaluate the extent of the damage Kristen’s kidneys have developed related to her mitochondrial disease. Hematology also called and requested Kristen is seen in March for follow up based on several recent lab results. She has a bone marrow biopsy just over a year ago because of concerns that the mitochondria in her bone marrow aren’t allowing it to function well. So, we return to Milwaukee March 12 for a number of clinic visits. No date for Annalies’ surgery has been set so I doubt that will be scheduled for that time. It seems we’ve been traveling to and from Milwaukee quite a bit since last August. We are working with the Metabolic Geneticist to “tweak” both girls mitochondrial cocktail as the recent evaluation with a GI malabsorption specialist identified a number of deficiencies. Tom’s mom is continuing to cough and intermittently struggles to breathe when lying down. Her physicians are still deciding if this is related to a virus or heart failure. I have been struggling with a mild lupus flare affecting both my joints and breathing with all of the added stress. Praying next week will be somewhat better, i.e. less pain, joint stiffness and easier breathing.

On the employment front: I learned Monday that my job has been maintained “for now”. U of C will evaluate their financial position in May and June. At that time administration will determine if additional positions will be abolished in July. My boss did grant two administrative days so I can give a presentation in Madison Wisconsin late in April. We are considering spending an extra day at the Wisconsin Dells, as a family including Josh and Dawn, for everyone’s mental health. Our finances remain very tight and limited (especially since the IRS may still determine that they want partial repayment of our 2005/2006 refund) but everyone’s mental health needs a break with some relaxation and the opportunity to “get away from it all” for a day.

These are several things I have been reminded of this past week that I learned during my life: 1) we can choose to accept the word of man or the Word of God. Man thinks in statistics and scientific facts. God thinks only in truth based on perfect love, endless possibility, and infinite protection (and a whole heck of a lot of wisdom, but I tend to make lists in threes). 2) While we make the mistake of looking and waiting for the huge, obvious miracles during a crisis, we miss the precious little miracles that fill our lives every day. There were so many little miracles that I have to track them! My point is this: If we look only for what is typically defined as a miracle, we would miss all of the miracles God had worked for our good. 3) God is always there. We invited Him to every step of this journey, and He always came. 4) Gratitude saves lives, and I don't just mean my children’s and mine! I have found something to be grateful for in every single step of this journey. I look for the good (well, for the God) in everything. Sometimes it takes a while before I remember to do it, but it has become easier with practice...and now, it is a habit. And when I am grateful, I smile. I am happy. It shows...in the hospital, in the clinics, while at work...I am grateful. I smile. I am happy. And, boy, when people want to know why, do I have a lot to share about who they are seeing in me! 5) I am human. We are human. I have frailties and weaknesses and occasional moments of negative thoughts. But, I have learned, thankfully, that for every negative thought my mind can create, there is a Bible verse that can capture that thought and transform it to truth. I'm glad I'm human. It allows me the opportunity to refocus to my relationship with God.

You know, we have a lot of people partnering with us on our team: doctors, nurses, ward clerks, technicians, physical and occupational therapists, social workers, sisters and brothers from church, friends near and far...lots of people who have helped us on this journey. Then there is the Captain, the One Who calls all the shots, the One I/we turn to before, during, and after every situation that arises. He is right beside me/us, running, sometimes pushing, often carrying, always there. He's the only one on my team who doesn't send me a bill!

Sometimes, life just happens. No matter how well we have planned, hoped and prayed, it just seems to keep moving in a direction that we do NOT want or expect. I often feel overwhelmed life. Don’t get me wrong, I love my husband and children dearly. When it comes down to it and I get very honest though, there are certain parts that are making life difficult at the moment. I know I’m not alone. Thankfully I understand that God knows the ultimate plan for my life. My plan … well, my plan is anything but perfect. My plan is mortal and fallible. My plan will get me nowhere.

Just as we are grateful to the docs, nurses, and medical team in Milwaukee ….and we are grateful to each one of you who lifted our family up during very dark times and called for God to sustain us. We are so grateful that we all serve a God that doesn’t deal in reality...but in grace.

Prayer for today: Father, I appreciate your promise to work out all things in my life, both good and bad, for my good. I ask, dear Father, for faith to believe this promise is true during painful and difficult times. I ask for patience, O God, to hang on to my convictions when trying times persist. I believe your promise, dear LORD, and look forward to what you will eventually make of me when you are finished with your work. In Jesus' mighty name I pray. Amen

So that's it for now--keep us in your prayers as we learn to deal with the "wait and see" part of this. But at least we can "wait on the Lord" and He will give us strength to "mount up on wings as eagles". We praise God for His mercy and His strength--and for praying family and friends. Again, thank you.

Sunday, February 15, 2009 0:11 AM CST

Update with prayer request Tuesday February 17th

I met with our accountant yesterday. He (Burt), Tom and I, first and foremost, ask that you please pray that Burt, our accountant, can actually speak with an understanding, tenderhearted individual at the IRS. It appears that all of the documents requested for our audit were submitted by our accountant to the IRS office in Atlanta last April. He isn’t certain but believes our documents were neglected, overlooked or lost. He will try again tomorrow to actually speak with someone and see if all of the documents can be resent and actually be reviewed and considered. Neither our accountant nor we heard anything until last Friday and that notification was one of wage garnishment. If not we are facing wage garnishment next week. He will be requesting that the garnishment action be reversed until everything is reviewed and there is, hopefully, a ruling in our favor. Valid, qualifying receipts of well over $100,000 in medical expenses were submitted. Everyone involved believe only God can open the eyes, hearts and minds of those conducting the audit.

In the midst of this we are thankful that my job has been protected through the recent layoffs at U of C (my boss said at least for now). We are very thankful that Orthopedic Surgery has determined a surgical plan to repair the tear in Annalies’ hip soon and she is completing her recovery from her recent abdominal surgery and the blood products she required (6 units of platelets) were available.

As I've been reading some Caringbridge pages recently and listening to the concerns and burdens of some friends, my heart has been heavy. I have one friend in particular who seems to be taking hit after hit. She has become life's punching bag and every time she tries to stand another blow sends her flying and its hard knock after hard knock. Attacks from boxing gloves seem to steal the air they (and we) breathe. The past week or so, our family has been facing similar, daunting challenges.

I try to be completely transparent and honest for those who want nothing more than to “relate” or “pass along encouraging words” so that you may peek inside our world, if not for just but a moment and hopefully see the impact your words of encouragement may have on our broken, tired souls. Enduring a trial for over 19 years has provided many opportunities for us to hear words better left unspoken by those who only have our best interest at heart. Many very sincere people want to somehow feel they can relate to the path we are walking. I have often spoken with family and close friends who are also enduring trials of various degrees that have all expressed at one time or another, the “sting” of words spoken to them from a sincere heart.

Please know that it is with a sincere and fragile heart that I broach this topic as I try and share with you perspective from a “different world”, our world. These words, “a different world” were choose because they best sum up what heavy laden trial goers feel they are when enduring such times. Recently, I had several discussions with my girls (and several close friends) for where I am going with all this.

I've always enjoyed fairy tales. A story of a handsome Prince. A beautiful Princess. Love sought. Romance. Purity. A time when just holding hands awakened feelings deep within. Eyes meet. Heart beats quicken. Pulses race. The unfolding of dreams. Simplicity. Royalty marrying commoner. Identities hidden. Position denied. Glass slippers cherished. Authenticity embraced. Honesty rewarded. Love found. The famous last words, "And they all lived happily ever after". I'm so thankful for their happiness, but the greater point is that they lived.

Often, I wish I could crawl inside the pages of the fairy tales. Life wasn't perfect. Hardships were everywhere. Damsels were in distress. Dragons needed slaying. Robin Hoods stole from the rich to give to the poor. Wicked witches poisoned apples and evil step-mothers imprisoned step-daughters. Yet, even within all the heartache, there was passion, passion to live and love. Where is the Cinderella of our day? Women who rise from adversity because they have been rescued from a life of slavery by the King of Kings? To borrow a title from Robert Munsch, sadly, too much of life is lived as the “Paper Bag Princess”. Circumstances steal our joy. Dragons smash our dreams and breathe fire to consume us. Our castles tumble. Breathing becomes our existence. Routine fills our day and joy is hard to come by.

This past week we were in Milwaukee for back to back daily clinic visits and/or testing for both Annalies and Kristen. When we left home Sunday, I had lots of anxiety. U of C announced that there would be massive layoffs Monday. The news broadcasts in Wisconsin showed the exodus. Honestly, I’m still anxious as I won’t know until I return to work Monday if I still have gainful employment. The clinic visits elicited a mix of “good news” and “not so good” news. Annalies is recovering well from her recent surgery and the pathology clearly showed that the surgery was necessary. The Orthopedic surgeons finally reviewed her MRI films and determined a treatment plan. But, they called our house and left a message to schedule an appointment in Milwaukee to discuss the plan (while we were in Milwaukee). Her sleep study showed that ventilator parameter changes were necessary immediately, rather than after the study can be “officially read”. Major adjustments (increases) were made to both girls mitochondrial cocktail in hopes of slowing the disease progression that we are seeing which has been confirmed by recent studies. Kristen’s kidney function has been intermittently abnormal when checked at home. A more formal study several weeks ago was “normal”. The studies completed last week show there are definite abnormalities which require further evaluation. Again, the phone call requesting the additional studies was left on home voice mail while we were still in Milwaukee. Dr. Rice completed the forms so Kristen should be able to attend family ventilator camp in June (funds permitting). The new Internist that met with the girls has agreed to follow them and assist in obtaining the records we need to maintain their homecare waivers. The big blow for the week was coming home to a letter from the IRS stating wages will be garnished because their audit hasn’t been completed. All of our documents were submitted months ago. Our accountant will follow up on Monday but he couldn’t promise a speedy resolution when dealing with the IRS. We clearly need God’s intervention as this situation is far bigger than we are. We have NO reserve after paying all of our monthly medical expenses, including lots of frequent, prolonged out of State travel requiring lodging, meals, gas, etc. And, now, definite return to Milwaukee quickly for additional clinic visits, studies and, likely, surgery to repair Annalies’ hip. Adding to our distress, Tom’s mom has not been doing well medically and has had two recent trips to the hospital without improvement.

Those of us with tired and broken hearts know the intent of kindness as you reach out to us. Please try and understand that sharing a similar sad story is not a source of encouragement to us nor is it uplifting! We are struggling significantly with no end in sight. Cliché’s like, “God never gives us more than we can handle”... I believe that God does allow for the un-thinkable, the un-do-able and the un-wanted all at the same time! All the while He stretches us so thin, we feel as though we are hanging on by our fingernails and feel as though we are drowning! Then, when we call upon Him... sometimes He is silent and we experience the depths of despair and at the same time know that He has not abandon nor forsaken us!

It is during these fluxes in the trial that we cling to the safety of our home. We pull the blinds down, turn off the ringers and muffle the dog and kids as a knock sounds at the front door. It is here that we reach out only to those we know have walked or are walking in the midst of a storm. Why, a common bond and nothing more. Not exact in trial, as God has given us each our own unique hand picked one, but a common bond does exists and provides comfort in only the way a suffering saint can offer. Crying is easier with another who suffers, allowing ourselves to laugh with another who suffers is easier because we know that it is not a sign of dismissing our trial nor does it say that we are all better now, but that it is a release, for but a moment with one that understands our sometimes demented humor. Confiding in another that suffers also offers a support that can not be described. There are so many emotions, feelings, thoughts and actions that we go through as we try and stay above the water that only a suffering saint once again can truly respond with, “I understand”.

I know your hearts ache for those close to those of us enduring storms of all kinds, so I wanted to offer a few important points to reflect on to prepare your hearts as you talk with them or us.

* Words are wonderful, but please remember it is important to understand that you can not fix trials with them.
* The simple words, “I love you”, “I am praying for you” or “I am so sorry, I know you’re hurting” offer so much more than you could imagine! Proverbs 15:23 “A man finds joy in giving an apt reply – and how good is a timely word!” Ecclesiastes 10:12 "Words from a wise man’s mouth are gracious, but a fool is consumed by his own lips.” Proverbs 16:24 "Pleasant words are a honeycomb, sweet to the soul and healing to the bones.”
* To Love a broken heart through their trial is following Galatians 6:2 “Carry each other’s burdens, and in this way you will fulfill the law of Christ.” Notice this verse does not contain a time limit!! Please be sensitive in that we all grieve and handle hardships differently. Some bounce back quickly & others are slow to heal! Ask yourself if you can really commit to Galatians 6:2. Can you offer to commit to pray for them, for us, our family, for a year? Can send a note in the mail, post an email message or leave a message in our guestbook as these are so uplifting and usually come at just the right time!

I feel as though I could go on and on, but do not want to overwhelm. It is my heart to give a brief insight into “a different world” of the suffering soul. I pray I have not offended any readers... this was not the purpose of this post. I also pray that if you are on the outside looking in, that this would be received well. Proverbs 27:17 says, “As Iron sharpens iron, so one man sharpens another."

Life is meant to be lived. Christ came to give us not just life, but life to the full (John 10:10). Waking up every morning needs to overwhelm us with unexplainable delight. God has given us one more day. The Creator of the Universe meets with us a new each morning. Our Prince has rescued us. Royalty has married commoner. Vows pierced on a wooden cross. Promises were made. Sin is forgiven. We've been clothed in gowns of righteousness. A tiara of salvation adorns our head. The Kingdom is my royal inheritance. The Prince finds me lovely. I'm His choice for the first dance at the Grand Ball. His Hand is offered. I place my hand, my life, my trust in His.

Cliche, pat answers and scriptures seem hard to give and even tougher to receive. We know every Bible passage that comes to mind at these times. The knowing is not the difficulty. Finding the truth in them is the struggle when circumstances attempt to hide their validity. When every day just waking up is the victory even though another day brings bigger challenges and the blankets present a better invitation than the hours stretching ahead.

Right now, no matter which direction we turn, the world looks bleak. We are survivors sitting among the ruins. Storms have brought devastation and the winds are still blowing. I wish we could be whisked away for 24 hours where life couldn't touch us...where we could forget every concern and burden that is pressing in on our hearts. I know it wouldn't change our circumstances, but just briefly I would like to remember what was and what good is to come rather than what is. I know God is able and I'm praying that He will show Himself mighty.

Thank you from the bottom of my heart for storming heaven on our behalf! GOD BLESS EACH of you who has left a message, prayed, and just loved us through this difficult week! Please pray for me, for us, to have peace as we wait for Monday, we can’t speed up time, nor do we want to. We just want peace and tranquility as we wait to hear the answers on the formal decisions regarding the IRS, finances, employment and the physician “plans” regarding up coming testing and treatment for our precious children.

"A bruised reed He will not break, and a smoldering wick He will not snuff out." Isaiah 42:3

Saturday, January 31, 2009 10:20 PM CST

Looking ahead to February, we don't know what the month will bring, but we can be sure, God is faithful. His mercies will be new every morning of every day of the new month. There's power in the day when you start it with faith in God and a commitment to perseverance. This evening we stand on the hinge between two months-January and February. Looking back on January for a moment, there were some pretty significant peaks and valleys in our lives. I’m looking forward to the month most often associated with love.

So now Faith, Hope and Love abide, these three, but the greatest of these is Love. 1 Corinthians 13:13 As 1 Corinthians 13:13 says Faith, hope and love abide, they go together, they work in tandem but the greatest of these is love. Love is the foundation of it all. It’s the foundation of faith and hope. Faith and Hope cannot exist without love.

Faith ~ 1. confidence or trust in a person or thing: faith in another's ability. 2. belief that is not based on proof: He had faith that the hypothesis would be substantiated by fact. 3. belief in God or in the doctrines or teachings of religion: the firm faith of the Pilgrims. Faith is the assurance of things hoped for. What is hope? What does it mean to have hope? Do things have to be hard, difficult, stressful, and bleak to have hope? Is Hope a way of life, a way of being and way of living by faith? Is hope naive? Is it innocent? Is hope unrealistic and impractical?

Hope is a beautiful word that brings with it the feeling of anticipation. It’s a desire for all things to work out in our own lives and in the lives of the people around us. Hope is a mindset that says when it comes to others and myself I choose to believe that things will work together for good. A popular use of the word "hope" expresses a mere wish that "everything will probably turn out all right." This popular use of the word "hope" is usually in reference to expectations of fleshly things. "Hope" is an "output" of a process God sets in motion in the lives of those who are dedicated to Him. It is not a full and final realization of God's spiritual promises. But it is received through the working of a God-driven process that deems God's promises "as good as done." It is the "output" of a process involving the interaction of "faith" and "love."

This word "love," represented in the New Testament by the Greek noun "agape" is not the common word we hear thrown around loosely to express human personal preference. It is an attribute of God so pervasive in His righteous makeup that the Biblical writer was inspired to declare "God is love”. First it’s Christ’s love for us, accepting His love for us, embracing it, living out of His love for us. That love is the love that He is waiting for us to accept, embrace and receive. That is the starting place for faith and hope to be active in our heart. When we reconcile that we do not deserve His love and realize that grace is something we receive not because we feel it but because it’s a free gift being given to us for the salvation of our souls then we will position ourselves to walk in faith and hope for the things we face.

The truth is we all will experience pain. Sometimes this pain comes from the hurt of others, sometimes it’s from our own lack of wisdom and other times there is no rhyme or reason. No matter what we see in front of us Faith knows that things will work out. It doesn’t make the trial any easier but it allows our focus to be on Jesus and not obsessing about the circumstance. We must deal with the reality of the situation while knowing that we are not alone. We do not fight alone and when we come through the other side we know who is responsible. We know that God fights on our behalf.

A week ago Annalies has surgery to remove her gallbladder which was inflamed and full of stones. She also had a study to determine how much damage her hip sustained when she fell last August. Prior to those procedures she received 6 donor units of platelets. She was sure that this surgery and test were the miracle that God had for her: healing, recovery, firm diagnosis. She was so excited, so faith filled, so full of hope. Now, a week later, she is still recovering from surgery, the bleeding afterward, and the Mito energy brown out that the physical and emotional stress created. Monday morning I had a little talk with God. I had an honest prayer time asking Him why I could not see what He promised us. I couldn’t understand why I (or Annalies) couldn’t see anything happening. She is in pain; she and I were full of worry and disappointment. Couple that with learning that the internal damage to her hip is worse than anticipated and the physicians still haven’t decided on a plan of treatment. I received Annalies' MR Arthrogram report on Friday. In addition to the labrum tear, she has a CAM femoral acetabular impingement. And, the lab reports received from Cleveland Clinic last week indicate that the extent of the mitochondrial disease and dysfunction the girls both have is far worse than they had thought.

U of C will begin the employee layoffs this week. As a family, we are praying that my position is one that has been protected and spared. We return to Milwaukee the week of the 9th for extensive clinic visits. Lodging and finances are a big concern. We have arranged to stay at a hotel that offers a discount (it is still quite expensive). We did so because the hospitality house where we have normally stayed while in Milwaukee called. They are FULL with a long wait list and will NOT have a room available any time soon. That decision weighs heavily on our minds, as the other option is less expensive but it's definitely not an option at present (and may not be for the foreseeable future). The girls are anxious in regards to the upcoming testing, results and recommendations. We know multiple surgical procedures are pending for both girls later this winter or spring. Additionally, Tom’s mom was moved back to her home from the nursing home, but her physical and emotional health has significantly declined. Each of Tom’s brother’s asked for emergency contact information and details of our medical travels. The next two weeks will be filled with faith, fear and lots of bold prayers.

Throughout the past week, I’ve been reminded me of Hebrews 11:1. What is faith? This entire journey God has been asking me to have faith. To believe that He can do what He promised, even if that doesn’t look the way we hoped it would. Believe that he is who he says he is and that does not change because of what I see. Faith is not faith unless there is something hoped for that I cannot yet see.

I want to really understand what God wants of me, of us, so I took some key words from that scripture and I wrote this. If you are in need of anything, if you need faith for something and cannot see God in your circumstance then take this and apply it to your situation. Today I choose faith, and every day since then I have chosen faith and I will choose faith everyday no matter. Faith is having peace in the process, peace when you don't have the results you want, and peace when what we see is not complete. His power to work all things together for good, His power to overcome, His power to provide, His power to give us peace in the midst of our struggle and His power to restore.
What an exhausting few weeks. Your messages and emails have been amazing. I know many of you wait anxiously for the next update. I can't tell you how much it means to have everyone gathered around us, embracing us, holding us close with words of hope. Thank you.

We are praying for a peaceful week of recovery and renewal. Continuing to Fully Rely On God always.

Joanne and Family

Wednesday, January 21, 2009 5:29 AM CST

Update Saturday January 24th at 8:45

Annalies was in surgery for over two hours last night. The surgeon went above and beyond to remove her gallbladder which was full of stones (over 100 sized from peas to peanut M&M's)and inflamed. To succeed using a minimally invasive approach he opened the gallbladder and removed some of the stones bit by bit and wrapped in gauze. Annalies is calling him a "Ninja" surgeon! He came in the hospital to see her today. Unfortunately, despite receiving 6 donor unit platelets preoperatively, Annalies had an abdominal bleed today (plus a secondary bleed). So she is still in IICU with hopes the bleeding has stopped and she will be stable enough to be discharged late tomorrow. The Critical Care team will decide tomorrow if we can return home or will be staying in Milwaukee for an extra day or so. The results of her hip study completed Thursday are still pending. If the tear can be repaired surgically, the plan is to proceed with that repair relatively soon. We are very thankful that matched platelets where available when Annalies required them so surgery could proceed. It is now clear she will require a minimum of platelets prior to any further surgical or invasive procedures. She is continuing to recover from her recent mito "brown out" as well. Please continue to pray for continued recovery and NO additional bleeding.

"Every day you may make progress. Every step may be fruitful. Yet there will stretch out before you an ever-lengthening, ever-ascending, ever-improving path. You know you will never get to the end of the journey. But this, so far from discouraging, only adds to the joy and glory of the climb."
- Sir Winston Churchill

When I began our caringbridge page, I intended it to be a therapeutic outlet for me. I also hoped to be an encouragement to “new” moms, dads or individuals confronting the challenges of life altering (life threatening) disease. I think back to number of years ago, and I felt devastated and so alone. I remember saying to my mom “If it’s 1 in 10,000, where are all the other 1 in 10,000’s? Except we were told Kristen’s diagnosis of CCHS was far more uncommon with 25 known survivors all under the age of 5. I’m the only CCHS mom I know!” Fast forward several years (1998) and I also became the only “mito” mom I know! Definitely, I’m the only mom with a child that had been diagnosed with Congenital Heart Disease, Congenital Central Hypoventilation Syndrome and Mitochondrial Cytopathy. I hoped to share some of the lessons I’d learned (and am still learning). What I did not foresee was how God intended to bless my socks off with the wonderful friendships and relationships that developed as a result of my “outlet.” THANK YOU. Through this page I have found mothers and other affected individuals who understand how important relationship is. We share how we long for the communication that fosters relationship between two people.

Some time ago, Kristen was doing listening therapy. She was receiving auditory stimulation by listening to Beethoven, Mozart, and Gregorian chant at different frequencies through headphones. The idea was to improve auditory processing by re-training her hearing mechanism to receive and tolerate a full spectrum of sound. During the listening therapy, she was receiving speech and occupational play therapy. At the time, a therapist explained that at the precise moment when Kristen was receiving appropriate sensory input (through OT) and increased auditory processing through the listening therapy we might, over time, see some improvement in expressive language and in social interaction. It seemed like we were drilling a small hole through a brick wall in which some form of communication and hearing might slip through. I remember thinking, that’s a heck of a lot of work for a few little words and understanding from Kristen.

But that’s what we do for both girls. We work at achieving some improvement; we pray for it, we fight for it. We want our children to know and be known, to be accepted and have quality to life. Never far from my mind is God’s very desire to have relationship with us. It’s a recurring theme throughout this journal, but I believe He is saying, now you have an inkling of how much I long to communicate with you. How much I care for you. I’m amazed at the lengths He will go to be known by us.

The book of Hosea is a poignant allegory of God’s efforts to pursue relationship with us. To illustrate His unrelenting love for the people of Israel (and by extension, us) God instructs Hosea the prophet to marry a prostitute named Gomer. Hosea loves, protects and cares for her. But Gomer is repeatedly unfaithful to him; she leaves him and returns to her former life. God instructs the prophet to pursue and woo her again, and bring her back to home. God says to Hosea, “Go again and love this woman.” The story reveals God’s initiating, persistent love for us, His commitment to reconciliation with us, His passion just to have relationship with us over and over again.

As I strive to knock down the wall of separation that living with the challenges of parenting two teens/young adults with a life threatening disease and, personally living with the limitations related to Lupus, has intermittently been placed between my daughters and me, or between my friends and me. I think of the powerful illustration of Hosea above. In the same way, I believe God is yearning to reach out to you, to us and to me.

During the course of the past few weeks there has been a lot going on with our family. We have felt times of discouragement and times of true blessing. We’ve tried our best these past few weeks to keep our minds out of the gutter so to speak and so far it’s worked pretty good. It never fails that Satan “tries” to get us down over this medical stuff sometimes but we just have to pray through it. We have learned things recently that we weren’t possible when the girls were first born. No, not necessarily meaning all medically related things but meaning more spiritual and learning how blessed we really are. The Lord will guide us down another road I am sure in a matter of time and we will come out of that little detour learning more than we know now. So, again we wait. Waiting seems to be our friend right now so I will gladly and patiently wait. I would rather wait on the storm than be in the center of the storm.

Prayer Requests for this week:
* Decisive study reports in regards to Annalies’ back and hip and Kristen’s nutrition/nutrient absorption status as reports are coming back showing deficits.
* Availability of the blood products Annalies needs tomorrow in preparation of testing Thursday and surgery Friday and the availability of an IICU bed. No unanticipated delays.
* That we would get better at asking for the help we need.
* That our family would be bound together even tighter as we fight a good fight of Faith on everyone’s behalf
* For sound sleep each night, and energy to complete the all of the tasks and challenges.
* For availability of the funds to pay for lodging close to Children’s Hospital that will be safe, accommodating (The Residence Inn offered a discount rate). Note: Our girls have aged out of the Ronald McDonald House
* For provision to cover all the necessary medications, procedures, equipment and favor with the individuals and/or organizations that support families. For a timely coordination of procedures, scheduling and clinic visits, with no unforeseen delays.
* For continued strength and energy.
* For healing for Tom’s mom who is recovering from fall on Friday (has a broken bone and massive bruising).
* For protection for my joy and the insurance it provides for our family as the layoffs at U of C have started.

Praise Reports for the week:
* A marked reduction in Annalies’ metabolic crisis and autistic signs
* Safety in travel through the snow and ice.
* The comforts of home.
* For a terrific team of specialists at Children's Hospital of Wisconsin. God has brought world renowned doctors to Milwaukee, and it is no accident that we were referred there so the girls receive the best care and medical management available.
* Everyone’s excellent attitude, commitment, confidence and Faith.
* Another week of employment as layoffs continue around me
* God's faithfulness to meet our every need.

The good news is that we don’t have to do “things” to have relationship with Jesus. He has already done the work. We just have to be willing and available to be with Him. The walls are down. Here I am. Here we are. What do you want me to know about you?

This week I’m excited about relationships – with family, friends, and God Himself. My relationships with my beautiful daughters, my son (and his wife) are growing sweeter by the day. It took quite some time, but I’ve found ways to relate to them, and connect with them, and truly enjoy our time with them.

Romans 12:12
...rejoicing in hope, patient in tribulation, continuing steadfastly in prayer...

Sunday, January 11, 2009 2:31 PM CST

More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us. - Romans 5:3-5

Life would be easy if the space in time was small between when you first believe God's promises and when you receive what He promised. If you could read about it one day and get it the next, Wow - wouldn't that be great!? But life's not like that.

While making dinner last night I looked over to see Skittles and Faith at the window longing to go outside... to be free run in the new fallen snow or to chase the ducks grazing under the bird feeder! I know it seems silly, but I really knew how they feel. That is about where I am at mentally, physically and spiritually. I don't like this feeling... waiting for something to happen...hoping for good of course, not bad. Annalies, Kristen Tom and I are hoping for an effective plan of treatment, surgery or cure. I, also, need to assemble the additional documents required for on ongoing audit, awaiting replacement of necessary invoices/receipts that are no longer available or legible! Praying the IRS will gain an understanding of the extreme monetary out go for medical expenses not covered by insurance or Medicaid, and rule in our favor. We received a generous anonymous gift which I had put aside to cover our trip to Milwaukee in February. It would have covered gas, lodging, parking and meals. Instead, we used that gift to cover the cost associated with unanticipated clinic visits in Milwaukee right after Christmas and again last week. We also scheduled two invasive procedures (and possibly the first of three surgical procedures) that Annalies requires for next week. Yes, another three to four day trip to Milwaukee with all of the associated expenses. That gift was such a blessing. Not only did it assist us, but another family from our region had appointments last week as well (with no transportation or means of staying there while their child received medical care) and we were able to assist them. The family rode with us and shared meals with us. I had a fleeting moment of motivation only to have it disappear just as quickly as it came. Feeling house bound because of my daughters and my personal medical challenges (only few readers will get this). Not wanting to talk freely with anyone but only those that have walked in my shoes... Feel my heart harden, break and feel crushed when I see other mothers watch their children fulfill their dreams as they should be whether older or younger and passing my sweet daughters educationally, physically, socially developmentally... STING!!!!

The hard part is in the waiting between God's promise and His answer; and even harder, when the waiting comes with uncertainties. Where's this going? Where am I going to end up? What's my future look like? What will our daughters’ future look like? The reality is, we just don't know how circumstances will play out and it's this not-knowing that crushes us. We doubt because we don't know. We worry and despair because we don't know. We falter and sometimes fail - all because we don't know. If only we knew how this trial was going to end, we would be okay. But we don't.

We’ve had quite a week or two. There are numerous doctors taking care of our daughters and we are gradually trying to transition some of their care to adult medicine providers. Lately, the picture has become clouded, and at times, there is a significant lapse in communication, understanding and base knowledge of both mitochondrial disease and the all encompassing depth of the girls’ medical challenges. There are days and weeks that are just plain hard, days during which the best you can do is cry into your pillow and attempt to put one foot in front of the other. If you're living through one of these dark times right now, hang on. Know that you're not alone and hold onto that little spark of hope in your pocket for all you are worth.

Sometimes I want nothing more than to just fade away... to heaven... Oh how I long for perfection in heaven with my savior. These dry seasons I am all to familiar with and more than not, it is here that I reside, struggling to pull myself up the boot straps just to keep trekking through this barren desert. I know He allows us to partake in the desert to see how we stand on our own. Why can't I be strong all the time when entering this land, seize the opportunity in this season and show Him that I can do this? I hate that I fall back and slump on a rock, look around and just give into my defeat! I just wish I knew where stood in my life, what exactly my purpose is here and I wish that I felt confident in how I am to achieve it. I want to yell out to God that my life struggles within my family are enough, can't He make everything else just flow?

I know that we are to be content with our circumstances in all things, that we should seek Christ daily on our knees, lean on Him for our strength... It's o.k. really, I'm o.k., and we’re o.k. I'm just a mom with "disabled-child-blues" who's caught in a spiral of "a-child-of-God-trials", with two daughters caught in the “we don’t know how to proceed or what to try next” type frustration, a mom who's being completely transparent as she voices her heart into this vast space...
Even when you strive to be an optimist, there are times when life just gets you down. Many of you have asked me, wanting to know how I have coped and how my family has made it through the long list of procedures and surgeries and equipment to date. The honest answer is that some days I have coped better than others. Some days I haven't coped at all. I don't know why, but today was tough for some reason. I worked late — didn't get home until almost 10 pm. I find myself left alone with my thoughts tonight, thoughts that won't allow me to sleep. I walked into Annalies’ room and softly kissed her goodnight. Then I stepped into Kristen’s room to adjust her equipment and it hit me all at once.
Maybe it had something to do with the long day. Maybe it was partly because we haven’t had consistent night nursing support and multiple alarms between the girls haven't let me have one or two hours of consecutive sleep in over a week. That endless mental "to-do" list needing attention before we leave for Milwaukee again, which has been fraying the edges of my sanity may be partly to blame. I think partly because I know what's coming in the new few weeks. Last night, I leaned down and kissed Kristen and she mumbled something softly as her fingers curled tightly around mine. I wish more than anything that this could be different, that I could take her place or Annalies’. I wish there was something, anything I could do so that they could just stay here dreaming happy dreams amidst a menagerie of stuffed animals and teenager type treasures. Children shouldn't have to have so much hurt in their lives. I know that God is in control and that he holds my precious children in his hands, but what I know just isn't connecting with what I feel right now. I feel sick. I feel like a over whelmed. I feel so very, very tired. I just wish with all of my heart that they could be healthy and happy today.

Prayer Requests for this week:
* For continued supernatural protection of all remaining healthy organs in Annalies and Kristen’s bodies.
* Decisive study reports in regards to Annalies’ back and hip and Kristen’s renal function.
* For rapid coordination and scheduling of Annalies' back related procedure, invasive hip evaluation, gallbladder removal, gyne procedure, availability of required blood products and the availability of IICU bed.
* That we would get better at asking for the help we need.
*For a reduction in the increasing autism symptoms Annalies is displaying.
* That our family would be bound together even tighter as we fight a good fight of Faith on everyone’s behalf
* For a good nights sleep, and energy to complete the all of the tasks and challenges.
* For availability to secure lodging close to Children’s Hospital that will be safe, accommodating and the funds to pay for it. Note: Our girls have aged out of the Ronald McDonald Hosue
* For provision to cover all the necessary medications, procedures, equipment and favor with the individuals and/or organizations that support families. For a timely coordination of procedures, scheduling and clinic visits, with no unforeseen delays.
* For continued strength and energy.
* For healing for Tom’s mom who fell on Friday (no broken bones but massive bruising).
* For protection for my joy and the insurance it provides for our family. (CEO James Madara confirmed late Friday that the 600-bed hospital plans a major restructuring amid growing financial pressures from the flagging economy. He would not specify the number of job cuts, although a person familiar with the plans said the Hyde Park medical center hopes to reduce its workforce of 10,000 employees by roughly 10� http://www.huffingtonpost.com/2009/01/09/university-of-chicago-hos_n_156750.html

Praise Reports for the week:
* The comforts of home
* Safety in travel through the snow and ice.
* For all the prayer warriors who have bombarded heaven with prayers of faith. We feel like Moses, when Aaron and Hur held his arms up in the face of the battle, until the victory was secured.
* The comforts of home.
* For a terrific team of specialists at Children's Hospital of Wisconsin. God has brought world renowned doctors to Milwaukee, and it is no accident that we were referred there so the girls receive the best care and medical management available.
* Sore cheeks, so much laughing and smiling again today! A good movie can help provide healing for the spirit.
* Everyone’s excellent attitude, commitment, confidence and Faith.
* For the angel who sent the generous gift which helped us and another family last week.
* God's faithfulness to meet our every need.

We all have areas of uncertainty where we need to hold tightly onto what God has said while we wait for Him to work. I couldn't go forward another day if I didn't believe what He told me. So here's what we each must do: We must review His promises all the time. We must remind ourselves that our faith is in God and not in what He does for us. He knows what He has promised, He can't lie, and He can't forget. He will deliver on time, all the time. Who else can make promises like that?

God knows that it's hard for us to walk by faith. So He assures us, I'm not going to leave you wondering what I'm going to do. I don't want you to be overcome by fear. So I'm going to make some promises to you so that you can get through the difficult days. You don't have to take your view of life only from what you can see happening right in front of you. You're not imprisoned by the crazy talk someone is putting into your head that you know isn't true. Hang onto the things that I told you.

Sometimes I wonder just how much God really thinks we can handle. I am sort of numb I guess. I have to say that I definitely feel under attack. I just don't understand why we have so many things to face each day. I don't mean to complain, I just really need prayer right now. My faith is being tested again. It seems like we don't ever get time to get over one thing before something else happens. I am so ready to have a normal day. My heart just aches for either of our girls having to go through one more thing. The darkest nights are sometimes followed by the most brilliant sunrises …
Keeping in touch with you all is very therapeutic for us. We love watching the numbers everyday, and know that folks are praying from far and wide. I encourage those of you who are checking in on us and praying for us to sign the guestbook, even if you don't do coffee!

And while we wait, God builds our faith. ~ James McDonald

Our God is able, more than able!

Saturday, January 3, 2009 10:36 PM CST

As the new year of 2009 begins I've been pondering the past year, and all that the Lord has done in the hearts and lives of my family! I, like many of you take time towards the end of each year to reflect, and ponder the things the Lord has done in my life, and in the life of my family. I'm not one for making New Year's resolutions....as I rather look at areas in my life that I feel need improvement and I set goals that with the grace and help of God, he can work in my life transforming me in his image.

As I have often tried to convey through our journal...gratitude, generosity and grace are some of the most important things we have learned through this journey; reflecting upon the past and planning for the future. It’s like a breath of spring-time air, filled with hope and promise. We plan to succeed where we've failed and do right instead of wrong. We set goals and do our best to achieve them. The old year is gone with its problems and trials. The new year stretches before us and we anticipate it. It's like being granted another chance to live. We leave behind experiences, and moments to add to our collection book of memories. A world of wonder awaits us with open arms, its time to reflect back on lessons learned and knowledge gained.

Gratitude- We learned to be thankful for moments, days and weeks where life appears normal. We have discovered friends in hidden places, we have seen old friends remain steadfast, we have family that has priorities straight and hearts that sing and hearts that cry in tempo with every new twist and turn on our road. For all of this and more we are grateful.

Generosity-The generous efforts of so many, near and far lighten our load. The gestures of support through notes, meals, guestbook entries, and a number of individuals who’s support have touched us and changed us. Generosity has meaning for us. It is stepping into our world to offer guidance along this path. It is takings extra time to let others know how much we appreciate them. Generosity is one of the threads that hold us together.

Grace- Understanding the need for grace in life is a gift that became so clear through this journey. A quiet moment of silent understanding with another family, a look of compassion between two sets of eyes in pain, forgiveness to others who don't know how to be who we need them to be... these are moments where grace rings loudly and we have peace where before we would have had anger, sorrow, fear. Grace also has taught us to rest in what is good find peace amongst the chaos which is our life, touch others with the spirit in which we wish to be touched... with kindness, compassion and quiet understanding.

Current prayer requests:
- above all, and always, God’s Perfect Will
- that rest and travel and relaxation will come easy and that we and God can continue to be a sense of peace for us with multiple trips to Milwaukee for medical care over the next 4 to 6 weeks
- traveling grace throughout the next two months with safety on the road and the finances to meet our bills at home and “away from home”
- quick resolution to the IL Medicaid challenges with the transition to an adult waiver fro Kristen (it’s a mess right now)
- wisdom for us and the physicians, as we attempt too schedule a number of surgical procedures for Annalies and Kristen
- that my employment remain stable as U of C is, once again, laying employees off

We leave you feeling grateful beyond words to a God of comfort, and thankful for a wall of prayer by each of you…you mean so much to us. I haven't sent Christmas cards yet. Our caring bridge page keeps everyone who follows it up to date with what is happening and prayer requests. I'll send soon (I hope), but for now please know that by visiting this site it continues to affirm to us that many are there, many still care, many find a gift in the writing and the lessons from our journey.

I'll leave you with two last thoughts: You don't have the ability to change your past but you do your future and live life in the present, but live it so that your future is all that you dream of. May we ALL experience miracles and good health, joy and love in 2009.

Thursday, December 18, 2008 10:12 AM CST

Wishing you a joyful Christmas!

As I sit by the window, I’m looking out the window at the blustery day. It’s about 10 degrees, and the wind is blowing the snow off the roof and past the window, picking it up and mixing it with newly fallen snow on the ground around our house. I love how it swirls in circles and looks very much like the white, lacey skirt of a ballet dancer, until it twirls itself out of sight. There’s something peaceful about snow. What a beautiful sight! Snow does create a beautiful, peaceful scene. It’s a perfect backdrop for the Christmas event. Wasn’t it good of God to decorate for us?! It’s hard to believe that Christmas is only a week away. Are you relaxed and enjoying this time of year? Or are you rushing around, feeling stressed and pressured? In the midst of already busy lives, even seemingly little things like Christmas shopping, planning holiday get-togethers, or decorating the house for the holiday can seem daunting. After all, there are meals to plan, gives to make or buy, cards to send, trees to put up…

This is the season of hope, a season of miracles. Christ is the embodiment of what a true miracle is: He was born to a virgin, living life as fully God while fully man, without sin. He is a miracle and He is OUR miracle. He brings us such hope.

This Christmas there are many things that I hope for. Not things that I am asking for as gifts but intangible things that I hope for. I got to thinking that it's great to have hope, for sometimes that is all that keeps us going. But hoping can often be like wishing.
In this season of hope - I am asking for some Christmas miracles:
* Improved health for Kristen, Annalies and me
* Safety in travel throughout multiple trips to Milwaukee
* Coordination of care for both girls between the physicians at Children’s and Froedtert
* That the surgery planned for both girls in February can be scheduled without further delays
* Reduction of the pain in Annalies’ hip and a plan of treatment
* That our hearts will be open to what God is asking of us
* Finances to cover the cost of gas, lodging and meals when traveling for medical care
* Full time employment for Tom, Joshua and Dawn

God is already at work in our lives in some miraculous ways. Things are happening that I am going to keep in my heart for now, but please know that prayer works. Your prayers are one of the greatest gifts that God has given us this year. What are you "hoping" for this Christmas? We would count it a privilege to go before the Lord on your behalf and ask for your Christmas miracles as well. It's that time of year again. December has come and with it all the joys of Christmas. But what is the real meaning of Christmas? Is it the gifts under the tree, the lights in the windows, the cards in the mail, dinners with family and friends, snow in the yard, stockings hanging in the living room, and shouts of "Merry Christmas" to those who pass us in the streets? Is this really Christmas?

For many people, Christmas is a time of sorrow. Several of our friends have recently experienced the death of a child due to mitochondrial disease or CCHS. Others don't have the extra money to buy presents for their children, family, and friends. Many are saddened at Christmastime when they think of their loved ones who will not be able to come home for various reasons. Turkey dinners may be only a wish and not a reality for some.

Even so, Christmas can be a season of great joy. It is a time of God showing His great love for us. It can be a time of healing and renewed strength. You see, Christmas is when we celebrate the birth of the Christ child. God sent His Son, Jesus, into the world to be born. His birth brought great joy to the world. Shepherds, wise men, and angels all shared in the excitement of knowing about this great event. They knew this was no ordinary baby. The prophets had told of His coming hundreds of years before. The star stopped over Bethlehem just to mark the way for those who were looking for this special child. Luke 2: 4-19 says: "So Joseph also went up from the town of Nazareth in Galilee to Judea, to Bethlehem the town of David, because he belonged to the house and line of David. He went there to register with Mary, who was pledged to be married to him and was expecting a child. While they were there, the time came for the baby to be born, and she gave birth to her firstborn, a son. She wrapped him in cloths and placed him in a manger, because there was no room for them in the inn…. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger. Suddenly a great company of the heavenly host appeared with the angel, praising God and saying, "Glory to God in the highest, and on earth peace to men on whom his favor rests."

Why did He come? Why did God send His son to this sometimes cruel and hard world? He sent Jesus to us so that one day, He would grow up to become a very important part of history. His story (history) is one of truth, love, and hope. We can truly be happy at Christmas! No matter what may be happening, we can know that we are His children. We then become sons and daughters of God. Heaven will be our home one day.

Isn’t that why we celebrate Christmas each year? To refocus on the One who offers hope in this fallen world and fills us with lasting peace. Hope for the hurting, sick, and the lost. Christmas reminds us to rejoice in the truth that no matter what we face on earth, Jesus has overcome the world! Gazing on Christ helps us to see, if we have Jesus, we have everything we need.

Christmas is a wonderful opportunity to enjoy time with those we love. With so many different ways to celebrate; the season gives us a chance to pass on traditions, honor our faith, to share extraordinary meals and treats and to remember the special people in our lives. With all the sparkling lights, wonderful foods, beautiful music, and goodwill this time of year, take time to pause and enjoy the simple things.

Warm Christmas greetings to all our friends and family! We hope this celebration of the birth of our Blessed Hope, Jesus, has been and will continue to be the best ever...that certainly has been true for us!

Whether you are precious friends from way back, wonderful co-workers, dear church friends, delightful caringbridge supporters, or beloved family members, we just want you to know how very much you mean to us - we love and appreciate you more than we can ever say - and knowing each of you has enriched us beyond measure!! Thank you all and God Bless each and every one of you!!

Sunday, November 23, 2008 8:19 PM CST

Give thanks to the Lord, for he is good. His love endures forever. Psalm 136:1

For centuries, people in many countries have held harvest festivals to celebrate the bounty of the land and the blessings of life. President Abraham Lincoln established a national holiday in the United States as “a day of thanksgiving and praise to our beneficent Father.” Gratitude means thankfulness, counting your blessings, noticing simple pleasures, and acknowledging everything that you receive. It means learning to live your life as if everything were a miracle, and being aware on a continuous basis of how much you’ve been given. Gratitude shifts our focus from what our lives lacks to the abundance that is already present. Giving thanks makes people happier and more resilient, it strengthens relationships, it improves health, and it reduces stress. I think about the seasons that are coming upon us. Among the first words many of us were taught to say are please and thank you. No one gets quite as excited as a parent or grandparent when a toddler first utters those words and makes the connection between asking politely and receiving gratefully. Thanksgiving and Christmas displays seem to be everywhere. I really like holidays. Throughout the holidays people share conversation, laughter, dinners, and gifts.

One of my favorite songs starts, "Give Thanks with a Grateful Heart." In this song it says, "Give thanks unto the Holy One for He's given Jesus Christ His Son." If we are grateful to God for what He has done for us, and given us, then everything else shouldn't really matter. We can enjoy each others company and thank God for family and friends, no matter how big or small our gatherings are or the contents of a gift.

Did you ever find yourself staring at the words Thanksgiving Day on the calendar and wondering what in the world you had to be thankful for? It has happened to us with a job loss wondering how you'll ever get enough money to survive and recently, we’ve heard nothing but bad news from several doctors or someone we had entrusted with our hearts’ has broken them and run away. The reasons we may find it hard to give thanks are as many as the troubles that strike us each day. Difficulties don't pause for a Thanksgiving break. There is a way, however, to find reasons to be thankful during even the darkest episodes of life. When the curtain of struggles seems to block out all joy, we can choose to be thankful.

We are most thankful for a special young lady in our life that turns 19 on Friday. I want to tell her lots of things. How proud I am of her. How special she is. How she has blossomed into a beautiful and elegant young woman. I want to explain to her that it's tough being 19. That the others in the world can sometimes be cruel, that she needs to keep her head up and walk proud and respect herself, and have enough confidence and wisdom to respect the choices she makes. I want to tell her that it's OK to make mistakes. That we learn from mistakes. Mistakes can make us better people. If we live life afraid of being wrong, or making a mistake, that we never grow. I want to tell her all about how in life, there are always choices, and that it is these choices that define us, that build our character, that make us who we are. I want to tell her how much she means to us, and how we love her. Happy Birthday, Kristen.

One of the things we have been extremely thankful for is our church family. This is why we are thankful: wonderful men and women who are great mentors, preachers who speaks the truth, even when we didn't want to hear it, the closeness we have with some families, the outreach program which helped us with travel expenses and medical lodging and others within our community, the older men and women who have so much wisdom to share, the amount of support we receive, how generous these families are to each other, and the love that is shown. We have been truly blessed with our church family!

I can either grouse about all the medical appointments and procedures, or I can give thanks for the wisdom of the doctors and technicians–and the medical insurance to help pay the bulk of the medical expenses. I choose to give thanks.

We have traveled back and forth to Milwaukee for clinic visits once or twice a week for a few months now. In the process we’ve learned that Annalies has two herniated discs with nerve compression and a gallbladder that is filled with stones. We’ve also learned that no one is eager to provide the care the diagnosing physicians prescribed for either condition. So, for now, she is being “turfed” between Children’s and Froedtert. The Children’s physicians want the adult side to care for her and the adult side says she’s too complex, they can’t meet her needs and Children’s would be better….the battle continues. Kristen is making progress with PT and has lab work pending at both Children’s and Cleveland Clinic. Both girls are waiting for their case managing physicians and Neurologist to determine the best approach to mange monthly bleeding. We are getting contradictory advice and I don’t know what to think as I’m quite concerned about the potential risk.

With Thanksgiving season approaching, sometimes I wonder how others and our family can rejoice and be thankful, because they/we are hurting. Be it is financial adversity. groceries going up in price, heating cost will go sky high, storms, unemployment (Tom working very LIMITED part-time with no benefits), down-sizing and fear of job loss at U of C, removal of benefits for workers, and the loss of retirement income. Who cares about the struggles of others, the poor and needy! Many are facing psychological burdens, mistreatment, or catastrophic illness. Suffering is hard to understand. How can we be thankful in difficult times?

When the world seems to be closing in on us, or when we feel like we have our backs up against the wall, giving thanks may be the last thing we would ever think of doing. To be thankful in the midst of difficult times is very hard, yet Paul said, “In every thing give thanks: for this is the will of God in Christ Jesus concerning you” (1 Thessalonians 5:18). How is this possible? Sometimes when we think the situation cannot get any worse, it does! But we must remember that when we belong to and serve God, no situation is hopeless. God’s children can count on His providential care, and His never ending love. In the midst of our difficulties, we sometimes have a sort of “spiritual amnesia.” We forget all that God has done for us, and the difficulties He has helped us through. The difficulties most of us have faced pale into insignificance compared to the pain and suffering Job faced. His response to the loss of all of his possessions, and all ten of his children was to worship God. When the difficult times came, Job was ready to trust in the Lord. He did not understand why he was suffering as he was, but He knew that God is worthy to be praised, even in the midst of the most trying times.

The “attitude of gratitude,” the spirit of gratefulness, must mark those who would follow the Lord. As Paul and Silas sat in the depths of the jail at Philippi, their feet in the stocks, having been beaten for their testimony of Christ, they “prayed, and sang praises unto God: and the prisoners heard them” (Acts 16:25). They would not allow the circumstances to keep them from offering praise to God. In the midst of so many things we cannot understand or do not like, we must thank Him for those things we can understand, and the blessings He so richly gives us. Looking back, we should thank Him. Looking ahead, we should trust Him. Looking around, we should serve Him. He is worthy of all the praise and thanksgiving we can give Him.

There's an old saying: "Shared joy is double joy, and shared sorrow half the sorrow." Thanksgivings through the centuries have provided unique opportunities to express love and appreciation for others, as well as to come alongside those in need. Even on those occasions when we are hurting, we can find consolation in doing something for others. Thankfulness is multiplied as we reaffirm our sense of community and bridge our differences through Christ's love. The Pilgrims' gratitude flourished against the ravages of circumstance because they held fast to their belief in a sovereign, loving Creator and found comfort and support in one another. Whether then or now, in an uncertain world, the relationships we have with God and those around us are enduring reasons to give thanks.

When all joy seems gone, we can still find reasons to thank God even if it means thanking Him that our difficulties will one day be replaced by the joys of heaven. When we count our many blessings, it isn't hard to see that what we value most in life are the treasures that are free...For it's not the things that we possess that signify our wealth, But the blessings that are priceless like our family, friends and health. Thinking of you and wishing you life’s dearest blessings - at Thanksgiving and always.

"Strength, rest, guidance, grace, help, sympathy, love - all from God to us!! What a list of blessings!" - E. Stenbock

Happy Thanksgiving,

Tuesday, October 21, 2008 6:22 PM CDT

Do Not Lose Heart

I don’t want to lose heart! I want to believe as he does! -Robert the Bruce, Braveheart

So, I’ve been a little (or quite a bit) overwhelmed recently, and I’m not quite sure how that happened. But I want to post something here for you. My thoughts have focused throughout the past few weeks on “Losing Heart”. Last month I read the book Strong Women, Soft Hearts by Paula Rinehart. My interest piqued after a chapter on pain, which set my thoughts on “losing heart” by pointing out that in our pain, we come to a crossroads. We have a decision to make about what we’re going to do with our hearts. Discouragement comes so quickly to me. Looking at the sad state of world affairs makes me wonder, “Is there any hope?” Staring daily at the pile on my desk representing important tasks can also cause me to wonder, “Is there any hope for completion?” And that does not take into account my own personal issues. Oh my! What I see does not look pretty. Is it any wonder that I lose heart?

What does “losing heart” mean to me? I don’t know about for you, but for me, I’ve used that phrase plenty of times, but I’ve never really stopped to consider how to articulate what it means. As I prepared for journal entry, I came to realize that the idea of losing heart is more than just a feeling we can experience . . . it’s bigger than that. It’s not just feeling down in the dumps, depressed, or scared. The “feeling” is just an indicator of a state of being. Losing heart is place in life that I sometimes find myself in. A place where I have . . .Lost sight of who God is - Do we see God as faithful, sovereign, bigger than our situation, trustworthy, detailed enough to care about us . . Lost sight of who I am - Do I remember that we are God’s creation and in that, he knows us in intimate detail? That we are his children; we’ve been adopted into his family and he loves and sees us as his own? Do we even remember that we have God-given desires and passions, much less what they are?

Current “recent” issues affecting Annalies and/or Kristen for which we need some wisdom, discernment and treatment plans:

Both girls experience excessive bleeding with and cycles. I have NOT heard back from Dr. A. He was suggesting hormonal therapy, hormone impregnated IUD or endometrial ablation. Dr. P has been in communication with Dr. C and Dr. A and strongly suggested that a hysterectomy be considered as a viable option for BOTH girls for multiple reasons. In the past Drs C, S and W said absolutely, positively NOT hormone based treatment should be given to Annalies or Kristen. Now I’m hearing comments that some hormones would be alright. If so, who will manage any adverse events?

Annalies’ Spine: The MRI done at Froedtert revealed a herniated lumbar disc with nerve entrapment. Treatment options are oral steroids, epidural steroid injection or surgical repair. Oral steroids might impact Annalies’ endocrine function, bleeding issues and gallbladder. Does the potential benefit outweigh the potential risk? Epidural steroid injection has been strongly suggested by Dr. P after she reviewed the MRI. She called after Dr. M late on Friday. Her feeling was this option would be safest as a front line therapy. I know we need to try something soon. Annalies fell again Saturday. Her balance and gait are “off” intermittently since this started. I don’t want her to sustain a more serious injury from additional falls if we can do something to improve this situation.

Annalies’ Gallbladder: Abby, the PA from GI clinic called before we arrived home Friday. The gallbladder ejection scan was positive for many, large stones and a poorly functioning gallbladder. GI is recommending surgery and provided the name of a surgeon. They don’t know if this can be done via laparoscope given the volume and size of the stones. I haven't called to schedule a surgical consult yet (although they wanted me to do so last Friday).

Hematology is recommending administration of platelets prior to an epidural injection and/or prior to surgical procedures. They also suggested that we consider CHW if at all possible given some of their experiences with bleeding disorders patients at Froedtert (this comment may have been off the record). A “red flag” to me is that too many of the physicians involved want to turf everything to the adult side at Froedtert. A number of the adults with mito cared for there have had very mixed experiences with care rendered and the follow through on orders, including blood products.

Both Hematology and I would like to have as many of the procedures that Annalies currently needs to be done in tandem under one anesthesia if possible. I know this is asking a lot, but it has been done before for Kristen and others similarly affected. We definitely need a carefully devised plan and need it relatively soon. Annalies is anxious to feel better with less pain. I did reiterate to both girls this weekend that their physicians and I do care, we are working together on “a plan” and I will keep them informed. We are currently scheduled to be back in Milwaukee on November 10th.

Kristen’s Social Security Disability application is being reviewed. The person making the medical determination has called and is very willing to learn about how her medical issues impact her and will try to arrive at a decision quickly. We’re praying for a positive ruling quickly.
My employer is laying off employees again. The department has to cut the budget by one million within the next fiscal cycle. Praying my job is spared as my check is being stretched to make our bills and provides our health insurance.

“Being in God’s hands doesn’t spare us from life’s hard questions.” How true. In fact, I think the two can’t even be separated. Being in God’s hands is part of life’s hard questions. As I’ve wrestled with the words life threatening and the implications they could have, the thing I’m really grappling with is a question that I thought I had answered: Can the heart of God be trusted? (Is it actually good?).
I was reading in Luke 18 last night, half asleep. “And he told them a parable to the effect that they ought always to pray and not lose heart.” (v.1, italics added) Jesus knows a way for me to pray and not lose heart? Now my attention heightened. Ever since the doctor entered and informed us of my Lupus and our daughters’ inborn diseases, losing heart seemed to be the only reasonable response. As we’ve called and emailed friends and family, their reactions are not of hope, but despair. Even those of you commenting on the updates mentioned praying for me/us (thank you, by the way, for your prayers). I wonder whether hope or fear is the driving force behind those prayers. I confess that much of my life is lived hoping to avoid tragedy.

Staying with the thought of not losing heart,when I trust God’s heart as good, I can pray without losing heart. But oh the pain in the process of being invited to trust. When I’ve lost heart, I’ve lost my grip of how to view life. It was easy for me to skim over this chapter and think because I’m not depressed or down in the dumps that it doesn’t apply. When I was forced to articulate a definition and saw that it was more than a feeling, I realized that in some respects I have lost heart.

How about you? I lose heart when I dwell on what I see rather than on what God promises. “Don’t lose heart” are great words for me today. I hope they are for you as well.

Sharing the journey with you,

Tuesday, September 23, 2008 12:51 AM CDT

Summer is over and I’m reflecting on all that has transpired over the past few weeks.
Life is precious – truly. I feel like a honey bee in a field of flowers. A bee can’t collect nectar from the field as a whole. But, if he just takes one little droplet at a time, using all the strength he has, carrying all the weight he can – eventually nectar will get moved to the hive and flowers pollinated. So – I am learning to daily (hourly, minute by minute) work on that nectar. And, my reward will be for me the same as the honey is to that bee. And, even though the bee’s reward will be in little, teeny, tiny pieces, my reward will be whole and abundant. My point is – life is good. And, God gives us the strength we need to carry each day’s burdens, and the spirit to celebrate each day’s joy!

The family is one of nature’s masterpieces — George Santayana

The word “masterpiece” can mean any great work of art, a “tour de force” in any medium conjuring many different images but for me I instantly think of a giant canvas, a painting, a masterpiece of light, color, texture and contrast. Our family seems much like a masterpiece in progress, always changing, always growing, always adding more light, color, texture and contrast and this weekend its artists were hard at work adding to the taught-framed fabric of our masterpiece. Last Friday our canvas was splashed with the colors of love, joy, beauty, gratitude and even a little adventure as we gathered at my cousin’s home. It was an amazing evening a time of renewal and refreshment! The evening was just magnificent and filled with true love for one another and for the gratitude we all felt because we were together, our family was complete. We enjoyed a delicious barbeque and each other’s company. It was evident that our families were meant to be joined together on this wonderful day. The laughter, tears and camaraderie were unmatched as we shared the highlights of time since we last gathered. Tom and I we will always treasure the memories of a special evening that added such richness to our canvas and further filled our family’s masterpiece with life, love and hope for the future. We are blessed beyond words.

It is weekends like this one— a little vessel of wonderful adrift amongst the hurricane of medical challenges— that keeps us going. (Similar to the challenges facing my cousin Glen and the massive cleanup confronting him, recognized after viewing the photos of the hurricane damage in his community). It is weekends like this one that steady us for the days and weeks ahead and all that they might bring. It is weekends like this one that send us into another week a little braver, a little less terrified and a lot more hopeful. So, when people ask me, “how we live with chronic disease and have normal lives? I tell them that normal is in the eye of the beholder; it is how you define it not how it defines you. We are doing what we can, with what we have and we are doing it right where we are!

So life really is a series of events that are normal, absurd, fantastic, average and extraordinary all strung together in rungs that are endlessly intertwined. Somehow we all connect in this intricate web affecting those we have never even met. And even in those moments of sadness, frustration and hopelessness there is light, awareness and joy.

Juxtaposition: the act or an instance of placing two or more things side by side. As autumn days roll on, our lives continue to be a juxtaposition of medicine and miracles as we strive to balance long clinic days with traditional fall activities, young adult style. Annalies and Kristen are amazing in their ability to navigate life. They move so gracefully from normalcy to the totally abnormal. Last week, just hours before being told that the abdominal x-rays were abnormal they were swinging outside at the park, all the while discussing the movies they want to see this fall. I wish I moved as beautifully between events as they do. As for what lies ahead…most likely a gyne related procedure (unless the neurologists fail to firm in their objections to hormone therapy), and still to be determined GI related changes. After that, more testing of course!! I will update when the decisions have officially been made and tests are complete and a new plan is formulated

I have been very concerned about how to word the medical portion of this update. Throughout this 18 year journey I have always had faith that I would be lead to make the choices that were best for Annalies and Kristen, always trying to honor them in the process of saving their lives. The discussions we had recently with Gynecology and Neurology have challenged the physicians, girls and I to think more seriously about life, reproduction and the risks associated with both. There are many people who feel that life is not worth living unless the quality of life is one of comfort and peace or consideration should not be given to potential risk verses potential benefits. That out rules many treatment options children with genetic based diseases, sick children and many more. If we believe that God created each and every living soul for a reason…then we believe that God created Annalies and Kristen just the way they are. So, it has been an emotionally taxing week with many unanswered questions.

It's strange how our perspective on one's situation transforms through time. Annalies and Kristen do have a way of presenting us with one conundrum after another—most of the results pointed to a future direction. So, what to do?? Well that was another week of talks, debates and decision making…thanks to good friends and brilliant medical advice from their team we, in the end, will decided to move ahead with some form of treatment to reduce excessive bleeding and try to improve GI function. The challenge is to determine what will ultimately be best: medication based treatment with significant risk or one of two surgical procedures with varying degrees of risk and outcomes. All surgical options have long term considerations in regards to child bearing, emotions, and anesthesia risks.

My words fail me as I try to express to you the gratitude we have in our hearts for the many, many acts of love and kindness you have shown us. Thank you so much for your continued love, support and encouragement for our family. It is always when we need it the most (which I know is no coincidence) that one of you calls, sends a card, shoots us an e-mail, leaves a phone message or humbles us with a generous gift. I have said it before, but I truly do not think you will ever know the impact you have on our daily lives. Please continue to pray that Annalies and Kristen’s health to improve, for our amazing team of doctors to have wisdom and insight that can only come from Him, and for Tom and me as we strive to keep our emotions in check and make the best possible decisions for both girls. This journey has been long and there are many days when it continues to be very difficult. I cannot tell you enough how much your love, support, faithfulness, and prayers mean to us. 1 Thessalonians 5:11 says “Encourage one another and build each other up, just as in fact you are doing.” You are such beautiful examples of this verse and the love Christ has for us. Thank you for being a cherished part of our lives.

Our family has been so fortunate, in so many ways during this long and incredible journey. One of the most amazing things is the friendships that have touched us along the way, both, at home and in Wisconsin, Michigan, Ohio and New York. The friends that we have made, those that share our life with Mitochondrial Disease and Congenital Central Hypoventilation Syndrome also share a bond from our hearts that is like no other. The double life that is so hard to lead, that makes you feel as though your always straddling a tight rope takes a step towards less difficult when you share it with friends, who for better and for worse, are just like you. And even though those friendships are new in comparison they sure do feel like a fit from a lifetime. I know the value and the blessing of that and it was clear to me, recently, as we shared some time with the several families in Michigan and Wisconsin, that we intuitively understood the bond that words could never define. There was such a juxtaposition of childhood innocence and ancient wisdom that was simultaneously, both, wonderful and startling. I found myself feeling that same connection with their beautiful mothers and fathers. A connection so tender that it should have taken years to nurture but conversely was woven in just months from one common thread—saving the lives of our children. I am grateful beyond words for the unspoken and shared understanding that I have with these mothers, these women that I feel privileged to call my friends.

Our spirits’ continues to soar as we faces each new day. Our greatest hope is that we remain able to make each day a GREAT DAY and that we are given the strength to travel wherever this journey leads us.

Enjoy your day! And, when you face the challenges that today WILL inevitably bring, just look at it as the drop of nectar creating delicious, sweet honey. Just move it one drop at a time, and enjoy the rewards!

With love and gratitude for all the weekends like the one spent with extended family,

Joanne and Family

Sunday, August 31, 2008 11:18 AM CDT

First I want to thank all of those who have come along side of us in the past to provide love, encouragement and prayer. We are so blessed to have such an army petitioning our great God on our behalf. If I am being honest the past few weeks have been an emotionally exhausting time for all of us. This period has been filled with highs and lows and everything in between. Just when we think we will be getting a break, we are plunged back down into the depths of over whelming issues and we struggle to keep our heads above water.

It's always so amazing to me how God speaks to me through the devotionals that I read. This morning I was stopped in my tracks as I turned the page in the devotional to find this verse at the top of the page: Psalm 46:10: Be silent, and know that I am God! I will be honored by every nation. I will be honored throughout the world. The amplified version says, "Let be and be still, and know (recognize and understand) that I am God and the author of my devotion added "stop worrying".

When I was little and afraid of big storms, my mom would always tell us to just sit quietly and know that God was in control. Not to worry of how the storm could affect us, but just trust in Him and He would take care of us. The devotional this morning reminded me to just stop... be still and know that God has it all under control. What will my worrying over it help? Not one bit! I know that He will open doors to where He wants us and He will close the doors to where we shouldn't go. He reminded us that we need to just sit back and watch and see what He will do with our lives. "Listen," He said, "and I will lead you and guide you to where you should go".

The storms remind me that many people are going through different degrees of their own personal storms. The older I get, I see how life is full of hardships and triumphs. Life is full of ups and downs, big storms and tiny rain clouds that we get through with little or no effort.

Kristen has been struggling emotionally of late. She is so tired of doctors and hospitals. Right now she says he doesn't want to go for any more clinic visits or testing. I don't blame her! She is 18! But the truth is, she feels so out of control right now and so do I. Too many appointments, with extra visits added, spread over a month. The electrophysiologist still isn’t sure what is happening with her pacer pocket or what to do about it, if anything. Dr. Rice is happy with her current ventilator parameters, no pleased with her current GI function or level of distress. Hematology wants a Gyne consult to address bleeding issues soon. Pt started a home program because of weakness in the muscle of Kristen’s abdomen, back and shoulders. Dr. Cohen, the mitochondrial disease specialist, will be increasing on of the medications in the cocktail and is trying to sort out the genetics. This week we return to Milwaukee for appointments with Kristen’s
Neuro Ophthalmologist, Cardiology, and a new Gastroenterologist and the physical therapist. Kristen has resumed her home school program this past week too.

Annalies will also be evaluated by Gyne to address increased bleeding and has visits in the same clinic as Kristen this week. We are working to trial different ventilator interfaces. If those don’t improve her night time ventilation, she will have another sleep study this fall to adjust her ventilator parameters. Dr. Cohen is tracking down old genetics reports and will be sending muscle samples for additional studies to a lab for additional testing. Annalies would like to travel to Japan with a friend. It just isn’t possible with our financial constraints or with consideration of her medical needs. We are struggling to help her understand and accept our limitations and hers. I did speak with her friend, Heather, in Colorado and, together, we will try to arrange for Annalies and Kristen to spend some time with Heather in 2009. I know how difficult it has been for me to accept increasing limitations in terms of what I can and can no longer do because of my health and our family situation. If only Annalies realized that I really do know and appreciate what she and Kristen are going through.

Several people suggested we get a generator to use when we have power outages. We actually do have a small generator that we’ve had for years. With the change in Kristen’s ventilator and the addition of ventilatory support for Annalies and Tom, our generator isn’t capable of supplying what we need. I did explore our options and it would cost almost $5,000 for s system just to power the ventilators and refrigerator. That is way beyond our means.

We are continuing to work with our accountant on the audits. I’m praying that I can locate the additional information being requested and that the final ruling is in our favor. If it isn’t, I don’t have any idea what we will do. Some days the stress of this alone is overwhelming for me. It is extremely difficult to be in the lower middle class of Americans (especially living in IL which ranks 48th in the care of medically fragile individuals). The direct expenses related to caring for our children and meeting their medical needs is astronomical. A friend classified us as among those who are “medically bankrupt”. Sad to say, but she nailed it! We received a generous gift from someone at church which covered our travel expenses for our last trip to Milwaukee and Cleveland. Without that gift, we were considering canceling those visits and rescheduling for later. Given the concerns and recommendations we received for both girls, I’m glad we were able to go.

Looking at Psalm 46 in its entirety, helps me see this verse in context. I believe that God is asking of me that no matter what "crisis" I may find myself in the middle, He is in control! He calls me to come and rest. In 1527, Martin Luther found himself in the deepest depression and from that he wrote the hymn "A Mighty Fortress is Our God" from the inspiration of Psalm 46. "Christ Jesus, from age to age the same, He must win the battle. We will not fear for God has willed His truth to triumph through us..." Look or sing the words to this hymn and KNOW that HE is GOD!

All the losses and stresses of my life; my mother, my father, and many relatives, my career, my marriage, my children, our health issues.... whatever storm or crisis or pain or trial or thorn...my God is telling me to BE STILL, let God be God and TRUST Him. And I do as I stand in awe of ALL He has done and will do for me or YOU!
I simply need to let go, be calm, be quiet, no more striving...for I am actually thriving, not merely surviving...every day, His Way...step by step, surrendering to His control, as He calls me to obey and listen to what He may say...I stay in His Word and I pray...I bow before Thee, Prince of Peace and draw into Your Presence, where I find rest...strength...joy....love....peace...............

Lord, thank You for reminding me to just breathe, to be silent, to stop worrying, to stop striving for something that we can't MAKE happen. Thank You for reminding us that You are the one in control and that we can trust You for the outcome and to guide us to where You want us to be. Thank You for the reminder that our worrying and striving really don't accomplish a thing.

"A friend is one who strengthens you with prayers, blesses you with love and encourages you with hope." Author unknown

In His Care,

Joanne

Friday, August 8, 2008 8:46 PM CDT

"A faithful friend is the medicine of life and immortality." Ecclesiastes 6:16

August 10-16 has been officially designated as National Assistance Dog Week to honor the more than 20,000 dogs that assist people with disabilities. Dogs (Canis familiaris) have been "man's best friends" since the beginning of time. This timeless relationship continues to evolve into new kinds of human dog relationships that increasingly benefit society. Domesticating dogs dates back more than 10,000 years. Since that time, people have been breeding all sizes and types of dogs ranging from small to large varieties. While some pets have been excellent watch dogs, others have been wonderful service dogs and still many others have simply been pampered pups with comfortable beds in our homes, or loving companions and played any number of other roles.

To most, Annalies, Kristen and I, appear to be healthy, so people often wonder what we are doing when they see us accompanied by our service dogs in public. Most people assume that we are training the dogs for someone else, and are very surprised to learn that the dogs assist us. We each are individuals with multiple disabilities, which are, for the most part, invisible.

Today, we rely upon our service dogs, Brooklyn, Stitches and Skittles for our safety and independence. Our dogs have been specially selected and rigorously trained by East Coast Assistance Dogs to perform tasks such as object retrieval, turn on/off lights, help unload the dryer, and pull the laundry basket to our bedroom, alert to impending breathing or seizure events, and much more. Our dogs take the Dis out of Disabled. We are lucky to have them. We love them dearly and they’ve enriched our lives in so many ways. It's a lot more than just having a "pet." It's a partnership. These dogs are so much more than pets. They're with us 24/7, providing life-saving services and support. They are elite, highly-trained service animals that do everything they possibly can to help us through day to day life. We don't have service dogs because it's fun. We have service dogs so we can live life a little easier, and function like everyone else. Without our service animals, many of us would not be able to get through the day, at least not without depending heavily on other people for our needs. Service dogs are our lifelines to a world that others walk freely. They aren't just dogs; for many of us they are what keep us alive and able to live a little more freely. They keep us from needing around the clock care, help us deal with medical situations that might otherwise put us in the hospital, and help us with the hundreds of little tasks of day to day living that outwardly seem simple, but that people with disabilities can find unbearably challenging. Service dogs give back the dignity that we need to live our lives. So next time you see a service dog, don't think "What a nice pet." See our dogs for what they really are, highly skilled companions who help us integrate into the community and live a fulfilling life.

Annalies, Kristen and I will travel to Milwaukee on Sunday for a full week of clinic visits and studies. The week encompasses X-rays, Orthopedics, Pulmonary Testing, Ventilator Clinic, Hematology Clinic, Dermatology Clinic and Cardiovascular surgery Clinic. The cardiovascular surgeon is hoping to have formulated a plan to manage the post operative complications has been experiencing. We have been blessed with an anonymous gift from out church family which will cover our lodging, gas and some of our insurance copays. Fortunately Kathy’s House will have a room available for our use. Kathy's House is a hospitality house dedicated to providing lodging and a supportive environment in "a home away from home" for patients and their caregivers traveling to Milwaukee area hospitals for medical treatment. If we had to stay at a hotel, we would not be able to make this trip due to lack of funds. We are praying for safe travels and wisdom and discernment for our physicians. The list of medical management decisions that must be made is exhaustive.

Tom will be home, taking care of Faith and assisting his mother with physician visits she has scheduled. He will also be continuing clean up efforts related to the storms that hit the Midwest earlier this week. We lost our electricity for several days resulting in relocation to a hotel (to power ventilators) loss of all of the food in our freezer and refrigerator. This is the third time this has happened in 7 months. This is very frustrating (and expensive).

As I finish this update and watch our dogs, I am cognizant of how beautiful our faithful companions are, their ears lift and heads turn as they listen to the ventilators hum; they are alert and relaxed. They capture my glance with warm, brown eyes, and smiles at their lips. Their eyes and expressions speak volumes. We live with their pure, unconditional love. When I get up their tails wag, each is ready for a new adventure. They genuinely seem happy with life, eagerness for each new day. With a zest for life and eagerness to please that amazes me. Whatever we dream of accomplishing can be realized with the assistance of our service dogs. Please join us in celebrating the selfless love and devotion our dogs so humbly provide by participating in National Assistance Dog Day.

*Dogs are not our whole life, but they make our lives whole. ~Roger Caras

*A dog doesn't care if you're rich or poor, big or small, young or old. He doesn't care if you're not smart, not popular, not a good joke-teller, not the best athlete, nor the best-looking person. To your dog, you are the greatest, the smartest, the nicest human being who was ever born. You are his friend and protector. Louis Sabin, All About Dogs As Pets

Wednesday, July 23, 2008 11:20 AM CDT

The only courage that matters is the kind that gets you from one moment to the next.
—Mignon McLaughlin

There is never a single approach to something remembered.
—John Berger

Wow is this quote ever true. I feel like Annalies’ life has been a testament to this quote. She is all about many approaches and she has even made up a few of her own—thankfully.

It was 4:00 pm, exactly, on July 31, 1985 when our family received the most amazing gift from God—our first baby girl, Annalies Marie. Annalies was born on the 27th and placed into our arms 4 days later. Now, years later, I can still recall every moment leading up to that one and every moment since. Looking at Annalies, as her birthday approaches, I still swell with those same feelings, the kind that make your chest feel like a large balloon might burst from within it. But on the afternoon of July 31st there was more inside me than just the thrill and terror that comes with a new baby, there was more of a calmness, a knowing that later this week, in that moment, in that few seconds while she is blowing out her candles, that Annalies had made it and her life, with all its trappings filled with joy and sorrow as life is meant to be. Looking at the excited faces of several of her friends while anticipating a movie and dessert was a startling reflection of my own raw emotions—excitement and anticipation; this was the first day of the rest of her life. When our babies our born, we watch them grow moment by moment. We notice every nook and cranny. We count their moments by ounces gained and eventually, we begin to count their steps.

Annalies took her first steps at 10 months old. She was walking across the room by 12 months old. Annalies was the kind of baby and child that seemed grown up way before her time. Well, the time has come-she has really grown up. In many ways, she is only now just catching up to where she has been for a long time. I recall a dear friend of mine coming in to the kitchen one afternoon while she was over visiting. She said, "Joanne, I was just talking to Annalies and I had to remind myself that I was speaking to a 10 year old!" At age 5 it was common for her to use words such as "acceptable." Throughout her formative years most of her evenings were spent curled up on the couch reading a new book every week. I could not keep enough books in the house for her (still can’t).

In a few short days our oldest daughter will cross another milestone in life-another birthday. I am proud beyond reason and words--so proud of my sweet Annalies. Her vocabulary has expanded the horizons of my mind, and her dreams are vast. I am impressed that through it all, Annalies has found the courage to dream and to continue to plan her life out.

As I reflect on this past year, I have so many emotions. I am overjoyed that Annalies has come this far. She is one of my bright stars, my miracles, my blessings. Unfortunately, the worries and the ups and downs remain constant in my life. A day doesn't go by that I don't worry about her. I know that her life is in God's hands and I just have to trust Him, but I'm still scared at times. Yet, Annalies is the definition of the word courage. It takes courage, strength of mind, body and spirit and a whole lot of determination to take living with mitochondrial disease.

Annalies, congratulations on your accomplishments-be proud of yourself-you are amazing! Please help us surround Annalies with birthday wishes, love and healing thoughts, as we head into the next part of her journey. She is a remarkable young woman with a bright and beautiful future ahead of her. We are so proud of who she is and what she has accomplished, in her few short years. She is an inspiration and we are both blessed and honored to be part of her life.

I will always love you, no matter what may come. With love and hope,

Mom

Monday, July 7, 2008 10:15 AM CDT

Our Family (Author Unknown)

Our family is a circle of love and strength.
With every birth and every union, the circle grows.
Every joy shared adds more love.
Every obstacle faced together makes the circle stronger.

****************************
Thank you all for the kind words and prayers regarding Josh and Dawn’s recent wedding :) I promised to write a post about it, though words failed me when trying to express the myriad emotions a mother feels when watching her son join hearts with another.

How did it feel? The actual process of the marriage? Were you happy? Were you sad that he was leaving you? Did your heart at any given point in time feel a bit disappointed that you are no longer the only woman in his life? And how does it feel now that after the marriage? Where the celebrations and congratulatory messages gradually die down and you get back to your normal life? Do you feel any difference?

To which I can only say: “All of the above.” Josh married a wonderful and kind woman of whom I greatly approve and am honored to call my daughter-in-law. Her parents are also very warm and kind and loving, so the process of getting married went smoothly. The wedding was elegant, sophisticated, but fun. I saw family, old friends and new. We all had a blast.

Of course the brain wants to hold on to the young man that looked up to you and that you loved so much, but the heart, that overflowing fountain of love, wanted him to be happy more than anything else, and now, he will be. And it is different now, of course. For his whole life, I knew him only as “my baby boy” and now he is another woman’s husband. Dawn is a fine woman, whom I came to love over the course of their engagement. I am truly gaining another daughter, and not losing a son. This is not always the case in marriage, so I thank God that he has found a soul mate :)

Thoughts about loving children and letting them go: We have poured faith, love and goodness into him and that is all a parent can do. Sometimes the reward of these things is far down the road. I can tell you that I have loved my children during times when other parents I have known have all but turned their backs on theirs. What they do and say is not important, whether you believe that or not. What is important is how deeply and consistently they are loved. It is the place from which they center their entire lives. This is what Love of God and God’s Love for us, means. This is how we live what He intends. It is the source of everything.
Besides that, it’s time for him to begin the next part of life’s journey. So I wish the new couple the very best and I welcome my new daughter-in-law and her family into mine. I had a friend write me and she mentioned that the Lord showed them from the very start no matter what the storms may bring. He is their strength and will bring them through. Amen to that.

Congratulations to the bride and groom!

Now on to the medical update….
Kristen: The cardiac surgeon agrees there is a significant increase in the size and amount of fluid (of an unknown nature) in the pacer pocket. That is intermittently impinging on the nerves causing the numbness and tingling. He also checked her liver and will be watching it for signs of fluid over load related to her heart and heart failure. He wants us to watch her closely and will reevaluate in 4 weeks (when he returns from vacation. He would like to aspirate the pocket but is quite concerned about introducing an infection. He also reprogrammed her pacer to try and capture the arrhythmia which has intermittently returned. Kristen is discouraged and doesn't want intervention. I think she understands why it is necessary but her heart and brain are NOT on the same page. Part of her issue is a marked increase in signs and symptoms of autonomic failure which she had been told would improve postop and worsened instead.

Annalies: PT was reduced by 50� She definitely tolerates this better. She is cooperating with her home PT exercises. She says her back is starting to feel better but she isn’t recognizing any improvement in fatigue or energy. The summer clinic visit series is now scheduled for August. So we’ll see what insight comes from those. Last weekend Annalies and I completed her home care services renewal for the next calendar year. The PA’s will be getting a raise in August so we appealed for additional hours to compensate fro the loss related to their increased pay.

Joanne: My knees are not taking kindly to the significant increase in walking over the past two weeks. I tried to lay low all weekend to see if the pain would decrease. They are somewhat better today (not great but improved). I tried to be quite careful while in Florida and Indy to minimize sun exposure and reduce the chances of having a sun related lupus flare.

Tom: His mom’s caretaker left with minimal notice this weekend. Rick did find someone to replace Ursula at significantly greater cost. Tom spent time with his mom last week trying to ease her hurt feelings.

The CCHS and Mito Conferences: It was so nice to spent time with friends, old and new. The focus of the CCHS conference was genetics, cardiac issues (very pertinent for us), and ventilatory support options. The mito conference was also interesting with lots of attention to genetics and research. I had the opportunity to sit in at a special session with representatives from NIH, the FDA and the CDC. They will be releasing approximately 108 million dollars for mito research in 2009. This will be a first since our daughters were diagnosed in 1998. The money is to be utilized for patient related research. It is nice to see the focus shift from bench (laboratory) science to human beings.

The supportive comments and prayers and words of encouragement have meant so much to us. Bless each of you. I will be back to work and on the road, but hopefully have time to get back to visiting and leaving comments and returning e-mails. Thanks for being so patient with me.

Remember that you, too are BELOVED.

Always in HIM,

Joanne

Wednesday, July 2, 2008 8:29 PM CDT

I hoped to update with wedding highlights and our travel journal regarding the CCHS Conference, Disney and THe Mito Conference....but we have a pressing need for prayer related to Kristen's heart.

Kristen has an urgently scheduled appointment with the cardiac surgeon tomorrow at 8:30am. YUCK!!!!!! As you can imagine we are really not looking forward to it but we just have do it. You would think we would be totally use to that place by now but, its never much fun for any of us anymore. It’s been 5 months since her heart surgery and she and I were just so happy!! Unfortunately, Kristen’s incision has started to swell with intermittent numbness, tingling and a return of the rapid, irregular heart rate/rhythm. You know, when you have a child that lives with a disease or sickness it seems that there’s not a day goes by that you don’t think about it. It’s not necessarily that you’re worrying about it but in many ways your life has to change to accommodate the well being of your child. We know that we will be learn tomorrow exactly what is in store with Kristen’s heart, but we also know that the wise master builder has the fitly framed, finished, and furnished us with His perfect plan in mind and He has given me peace concerning the circumstances surrounding her heart. Late last week the surgeon mentioned draining the area and possibly returning to surgery to “redo” the most recent repair.

God has blessed her with strength that even through adversity she does not complain too much about the new signs. He has given us good family and friends for support through it all, and wonderful prayer warriors, a wonderful church that has blessed us with more than we could have ever asked for and caring friends. Thank you for praying and please continue to pray for Kristen’s heart and for God’s perfect will throughout all of her life.

Saturday, June 7, 2008 8:57 PM CDT

Your word is a lamp to my feet and a light for my path. - Psalm 119:104-106

While reading a devotional this weekend, this verse was key and I started thinking. God provides the light to guide is and lead us, but the verse specifically says, His word is a lamp unto our feet and a light for our paths. Lighting my feet and the path they walk on isn't enough sometimes. In my humanness I expect God to provide a crystal ball. I want to see the whole picture. I want to know what God wants me to do next. I want to know the plans He has for me and yet no matter how hard I search the plans are never revealed, at least not fully. He faithfully lights the path upon which our feet walk, but not the path ahead. I may as well just quit trying to get a glimpse of what is to come because He is lighting the here and now and if I am focused on what is ahead I will trip and stumble missing what is here and now.

I have had much time to think this weekend and I have been having a really tough time. Friday was an especially tough day. Much of my frustration comes from trying so desperately to find out what is coming next. Work struggles and uncertainty, the girls slowly declining health, increasing challenges related to Lupus, Tom’s employment status and mental health issues which worsen with increased stresses, Tom’s mom’s declining health , unexpected (very costly) home repairs, increasing medical travel with high fuel costs and lodging, travel for medical conferences, and vacation coupled with wedding activities. I like to plan ahead. I guess though maybe that is not what God is looking for in me. Perhaps, he wants me to physically and emotionally be in the here and now and not looking so far ahead. It hurts to be in the here and now and I often try to launch myself forward to skip over some of the pain and challenges, but he is repeatedly telling me that is not how it works.

Joshua: Well, as some of you may know our son is getting married on Sunday June 15th. Yes, the time as come when we as parents transition into consultants. Let me tell you it's not an easy role transition. We love to be able to tell them what is good and not because we have been there. But like ourselves we had to learn by trial and error.

We are truly blessed to be at this stage of our lives and to be able to release our son into his new life with a partner. What a change that will be. Change is never easy but it does cause us to keep moving and growing. At least for us they will live in a close town, but we won't be seeing each other as often. I decided when I became a mother that I would have a policy that the doors of communications were always open. Didn't always like the topics but I knew if I ever closed that door it may never be open again. Through this whole wedding process I found out one thing about our relationship, we are good friends. Now that for me is a huge compliment, I guess I did my job with the help of the Holy Spirit. I have cried, laughed, yelled, walked through a broken heart, and rejoiced with him as he found his life partner. Truly what a blessing it has been to have Joshua as a son. From the moment he came into our lives God has shown me Grace and Mercy through him. Some one said to my husband this week, it's when we release them that they truly start walking into their destiny and who they are met to be. So Joshua, be released to run and dance and laugh. May you be blessed far more and go further than we have gone!!!!!!

Annalies had a sleep study last week and has additional clinic visits in Milwaukee this week. She is continuing with PT weekly and finding it truly drains her energy reserves. The sleep lab made several changes in her ventilator settings and delivery device. We await word for her pulmonologist in regards to additional changes. Annalies is looking forward to the wedding and visiting with friends from Canada and NY while we are in Florida.

Kristen also has clinic visits in Milwaukee this week. We are observing decline in her neuromuscular stability and GI function. It will be interesting to see if her Neurologist has any recommendations. See will follow up with GI, Cardiology and Pulmonary physicians later in July. Kristen is also looking forward to Josh and Dawn’s wedding and visiting with friends while in Florida.

I, Joanne, had a follow up visit with my Lupus specialist last week. He is rerunning all of the Lupus labs expecting to see signs of a flare. It is very frustrating to have swollen, stiff hands, feet, knees and hips each morning and evening. I’m looking forward to the wedding and vacation. My mental health needs some brief respite from work and the stresses of home.

Tom is struggling to cope with the increased activity related to the wedding, clinic visits, DSCC home visits and recurrent, major home repairs. He plans to start a garden. I hope he does so soon before we get complaints from neighbors regarding the height of the weeds or grass. Tom went to visit him mom today and is concerned about her recent weight loss and increasing physical complaints.

If anyone knows of any foundations or organizations that might assist with costs related to medical travel and/or increasing medical bills, or extremely high utility bills related to using medical equipment please let us know.
As a family we are looking forward to spending time together with Josh and Dawn as well as visiting with friends old and new while at the CCHS Conference and the UMDF Conference which starts immediately after we return from Florida (in Indy). Josh commented that he hasn’t had a vacation with us since he was 18. He will be 25 June 13th. He is looking forward to this ”quiet” time as well.

God is lighting my feet and path now. I have to trudge through the muck and mire before I can see what is on the other side. There is no way over it and there is no short cut. Often times I feel like I just want to fast forward because the intensity of the pain is so real and so scary. It also seems to make others very uncomfortable. Many well meaning friends and family make futile attempts to "fix" me or “fix” our family. If only they would realize that there is nothing that anyone can do to fix it nor should they. I don't want our family to be fixed and I don't believe God wants that for us either. I have to go through the pain to get to the blessings on the other side. What God does want is for His people to come alongside those who are hurting and just be. It is encouraging just to know we are not alone on this journey. That is why this page is so healing for me. Many people visit here each day. They may not always comment, but I know they were here. That means something. That means a lot. Those who do comment could never know what that means to me, to us. Even when it is just a simple "I am praying for you". Like I said, I/we cannot be fixed. I am broken and my pieces will never fit back together the way they once were. That is okay.

I have said before that God will use brokenness and rocky pathways for His glory. I do believe He will. I guess I just need to stop looking so far ahead for what He is going to do and just be present in the here and now and what He IS doing at this moment. I cannot look farther than where the light of His lamp falls. That is tough to do, especially as a person who plans, but I am trying to just put my faith in Him and know that where ever he leads is where I need to be. (Easier said than done)! Thank you all for your encouragement along the way. Every little gesture means so much!

Joanne and Family Continuing to FROG

Sunday, May 18, 2008 1:06 PM CDT

I have been reading some wonderful posts about Mother’s Day lately, and it got me thinking. So, this update is a bit of reflection about the love and the bond that is shared between a mother and her child....This can also applies to fathers and their children too. From the time your child is born....you are filled with many emotions. The main emotions felt are love and happiness. Babies are wonderful little humans... They laugh, they cry, they smile and they bond....They do everything that an older human being would do....but until they are older can not control some things that they do or that happen. Motherhood involves parenting children while experiencing unconditional love.

When a baby is born you are filled with such happiness and love...a love that will never end. This is why the love is unconditional - because it never ends. In the first 12 months of your baby's life it is the most vital time for bonding - as your child needs to learn about its surroundings and who to be able to call for (mom or dad). You establish a strong bond with your child and show affection - by playing, cuddling, kissing cheek or just talking to them and telling them that you love them. As a mother caring for three children, two with multiple medical challenges, the bond I share with my children is strong. We laugh together, we play lots of games together, when they were younger (and some evenings still) have bonding time where we just sit on the sofa, talk and snuggle.

Recently (Mother’s Day) I felt what it was like to have my son and daughters tell that they loves me - and that I am pretty! It made my day and I nearly cried!! This made me feel extra special....as I know that through the way I have shown them affection and love, they has learned to be loving and how to love! Our circle of love has grown to include four cherished dogs. I once read somewhere that unconditional love only comes from two places: dog and GOD.

I was reminded by my friends who helped train Brooklyn, Stitch and Skittles at East Coast Assistance Dogs how much we, as human beings, respond to just pure love. We've always loved dogs and how they love unconditionally. They don't care about how you smell, or what you look like, or what you wear. When they hear your voice their little tails start wagging...they just want to be near you. They truly love you for better or worse. Our dogs do what most people can’t do. They don’t make judgments, and they don’t minimize what we are feeling. The dogs offer unconditional love in an uncomplicated relationship. Our dogs are good listeners. The dogs don’t offer advice. They just listen and give love.

Pets provide unconditional love and companionship for people of all ages—a fact that any pet owner can confirm. But scientific research also suggests pets help people control blood pressure and manage stress. Researchers have taken an interest in pets because controlling stress and blood pressure are vital keys to reducing the risk of heart disease, heart attack, and stroke. A 2000 study, for instance, found that dogs help relieve cardiovascular stress in people who have had difficulty controlling their stress.
We have the opportunity to give that kind of love to each other. I really think (believe) the source of that opportunity flows from the One that created us. He gives each of us an opportunity in each of our lives to be like that little puppy to give that touch to someone...our family, our friends, our children, our spouses.

Prayer requests:
* Annalies: tolerate her physical therapy better this week than last
* Kristen: improved autonomic nervous system and GI function
* Josh and Dawn: safety as they move into the apartment they will share as husband and wife, finances to pay the expenses related to their wedding and establishing a home.
* Tom: patience as he helps care for his Mother throughout this week
* Joanne: reduction in symptoms related to a lupus flare
* Family: reduction in financial stress related to high cost of utilities, gas, groceries and medical related travel. Safety when traveling for medical care and to and from work (multiple gang warfare in areas of drive to and from work).
* Physicians: They are making decisions in regards to which studies need to be done in June, July and August and treatment modifications. Discernment and wisdom are essential.

Our faith teaches that God can even take our failings and work them together into a tapestry of renewed living. God's unconditional love is ongoing. "His mercy endures forever." (Psalm 136:1) The Christian message of the resurrection brings the promise of New Life.

It's really a choice that we make to either be consumed by the ups and downs that we face in life, and all of the pressures, or to focus on the flow of that type of unconditional love that God is so willing to give to us and, in turn, to give it to others. Basically, just take a deep breath from whatever you are struggling with today and just trust that God will give you a gift that exceeds anything you could ever imagine. Christian teaching (to use a well-worn phrase) is to "let go and let God." With the help of the Holy Spirit and God's grace and unconditional love we are able to turn over our heaviest burdens for God to carry for us. Christians look to the cross, the symbol of forgiveness, for blessed assurance as found in Isaiah 2:16, " . . . your guilt is taken away, and your sin forgiven."
It is with that assurance that we can follow the advice of Ralph Waldo Emerson, "Finish every day and be done with it. You have done what you could. Some blunders and absurdities crept in-forget them as soon as you can. Tomorrow is a new day. You shall begin it well and serenely with too high a spirit to be encumbered with your old nonsense.

Love has many faces. It is not only the sweet love that intimacy shows us. It is also the nurturing love of a parent for a child; the unconditional love a child knows well for a parent; the love of a dear friend; the love of a beloved pet; the accepting love of a coworker; the love of a neighbor; the love for our world and all those who reside upon her. In essence it is the love we accept for ourselves, that we then project into the world.

All gifts that come in boxes are fun, but the best gift of all one can give is time and unconditional love. When we’ve been awake all night answering ventilator alarms, when we’re canceling plans for the third time, when we’re calling you at midnight in tears, or when we just need to talk or pray with someone...being a true friend through all of this is a gift few will give, and those who do will be treasured forever.

We come to love not by finding a perfect person, but by learning to see an imperfect person perfectly. Sam Keen
Love cures people -- both the ones who give it and the ones who receive it.~ K. Menninger

Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jesus to all generations, forever and ever. Amen. - Ephesians 3:20

Woof Woof, Bow Wow, Howl Howl, Yap Yap Yap! which simply means We Love You!! Don’t you wish you were the person your dog believes you to be?

I pray that we all can unconditionally love each other. When I think of "a life of love", I immediately think of you. You are such an inspirational example of God's love and how He wants us to live. We love each of you and are so thankful to have you in our lives.

Wednesday, April 16, 2008 8:21 PM CDT

"When hope seems to have faded away like the sun behind a storm cloud, we have our faith to cling to, and faith has always been the silver lining that shines through the darkest thundercloud. Faith keeps us strong. Faith keeps us focused. Faith means we never have to give up regardless of the odds that have been stacked against us. For faith always rekindles hope anew." Mary Kay Ash

We are so glad spring has come. I came across Jeremiah in my bible study recently and thought this verse fit us. Jeremiah 17:7-8 "Blessed is the man that trust in the LORD, and whose hope the LORD is. For he shall be as a tree planted by the waters, and that spreads out her roots by the river, and shall not see when heat cometh, but her leaf shall be green; and shall not be careful in the year of drought, neither shall cease from yielding fruit."

Spring is here! I cannot even begin to put into words how I feel, patiently watching the green creep into the trees, the bright blue skies, white clouds floating by and flowers coming into bloom. We are so grateful for another winter behind us. We need something to pick us all up and renew our energy. Spring brings us hope that one day those of us searching for the light at the end of our tunnel will see the light shine through claiming our victory over our burdens. Spring just does that to people! Yet, last weekend we had winter weather warnings.

Somehow our challenges feel less overwhelming when the warmth of the sun shines through. To me, it seems God is telling us he is here to help us find the courage to keep our spirits as light and glowing as the early morning dew. I’d like to believe that like a crocus bulbs create their miracles and each spring rise up to meet the warm rays of sun. That together we can create a magical miracle and this battle will be won.

Praise Reports for the week:
• The comforts of home
• Kristen is generally feeling well, and in her own words said tonight: "I feel like they actually fixed my heart"
• For a terrific team of specialists at Children's Hospital of Wisconsin. God has brought world renowned doctors to Milwaukee, and it is no accident that we are right here where both girls can get the best treatment available.
• Sore cheeks, so much laughing and smiling again today!
• For a noticeable reduction, already, in the Kristen's cardiac symptoms.
• A working computer at home
• For all the prayer warriors who have bombarded heaven with prayers of faith. We feel like Moses, when Aaron and Hur held his arms up in the face of the battle, until the victory was secured.

Prayer Requests:
• For Kristen’s GI tract to be improve.
• For a good nights sleep, and energy to complete required therapies and work each day.
• For Annalies to begin PT and tolerate it well.
• For Annalies and Kristen’s organ systems to remain strong throughout each day, and for friends and family to understand their limitations and the impact of activity on their health.
• For provision to cover all the necessary medical care, treatments, and favor with some organizations that support families with complex, medically fragile children.
• Patience with Josh and Dawn as they continue to prepare for their wedding.

Our God is able, more than able! It is said that God doesn’t give us more burden than we can bear. When we feel we may not be able to meet his expectations and the burden weakens our spirit to a place not far from despair, he will lift us up and carry us letting us know that he has always been there.

With spring in the air we can see the glorious miracles of God everywhere. He is in the tiny buds on our trees, in the delicate flowers as they bloom, in the sparkle of the dew on a blade of grass, in the radiant sunrise and sunset, in the brilliant colors that surround us and in the fresh crisp air we breathe. Oh so many ways he is showing us just how much he truly cares.

We seldom take the time to enjoy these amazing wonders when life places such demands on our time. Until tragedy befalls our doorstep do we awaken and realize how swiftly this could all be taken away. We postpone taking that moment to smell the roses or appreciate the beauty of awakening to a single ray of sunshine. We hope that our family challenges will open your eyes now to see how magical and beautiful your everyday lives might be. When your lives become stress filled and burdens weigh heavy on your mind, take a good look around you and see all the blessings and beauty that surround you and the good fortune to have all these friends of a very special kind. We can’t carry your burdens for you, nor can we make your dreams come true. But, we can say thank you for all the ways you’ve supported us, and if you ever need us to help you lift your burdens or help you make a dream come true, without hesitation be assured that we will be there for you.

We've trusted Him to care for us-and He has provided, over and over again. Our desire is to be like that tree...able to withstand and still find our hope in the LORD. Please keep praying for us. We give you our wishes for a springtime filled with happiness and good health and hope that you will turn and look carefully around you and appreciate your wealth. May God be with you today and everyday.

Showers of Blessings,

Joanne and Family

Monday, March 17, 2008 12:19 AM CDT

Love is the subtlest force in the world. ~Mahatma Gandhi

It has been a several weeks since I have updated our page and a lot has happened in the interim: great things, good things, and some things that are rather annoying.. But for today, I wanted to share Easter thoughts with a brief medical update.

We don’t celebrate Easter in the springtime merely by accident. Easter represents “New Life”, therefore, God has allowed us to see reminders of this in all of nature. As spring approaches we see the evidences of new life all around us, whether in the city or in the country. On the farms we have new calves and foals, and just about everywhere, we see the mud swallows marking out their spots to build their nests of mud. I always find it interesting that every year, at this very same time, a family of sparrows begin their task of building their nest in the corner of our back porch. With perseverance they bring little bits of dirt, mud, and twigs and they continue to build right up to the arrival of that first egg. What an awesome God we have, to demonstrate lesson upon lesson for us “right where we live”.

I know that not everyone reading this journal is Christian, and we love you all no matter what your beliefs. Though to our family, Easter is the celebration of the Resurrection of our Lord and Savior, Jesus Christ. It floors me to think that this humble man suffered and died for me: Me, with all of my imperfections. He did it for each of us. That is the main reason that I love this special Christian holiday. This brings me to the all-important event of Easter. It’s because of what Christ has done for us that: Everyone has Access to the Savior and Together we can know for sure we will live Eternally because of His Resurrection.

Easter is my favorite holiday, even (brace yourselves) more than Christmas. I love it for its message of hope and rebirth. It's a time when I am reminded that Christ died for the sins of everyone. Like Christmas, it's a time when peace and hope should reign (it doesn't) and all men should treat each other with dignity (they don't). For me, it's a time of reflection, when I think back on all the times I failed to live up to Christ's ideal. I love Easter because we get to celebrate the most defining moment of history. We remember when the very Author of Life finally conquered Death and took away its terror forever. Because I am a Christian, I do not have to fear Death. Instead I can look forward to it as the next and greatest adventure--one I am not ready to pursue just yet, but one I look forward to eventually.

This time of the year is especially contemplative as many prepare for and celebrate Easter. Our churches will be filled with worshipers as they sing their beautiful songs and hymns with great conviction and love. I lose myself in beautiful and worshipful hymns and songs as they can touch my deepest parts as nothing else can. There is something beautiful and gentle about using your voice to sing. Singing with a group of people brings a sense of connectedness that I find deeply comforting. When we unite our voices in worship and prayer, we are reminded that each of us is giving, as well as gaining, strength and courage to continue on our respective paths. As we look around, we see many who suffer and many suffer silently for fear no one would understand. Yet, they continue to worship God because there is strength without measure in His Divine love. I bow in honor to all those who recognize this love.

Kristen: The incision is finally healing. We have to return to Milwaukee on Thursday to ensure that there is no infection and the wound continues to heal (from the inside out). When we met with our regular cardiologist, we discussed the unanticipated findings from her last heart surgery and the recommendation that we seek surgical repair to improve or restore function. The potential surgical risk definitely far outweighs limited potential benefit so we are NOT going to proceed. Kristen is discouraged as just healing from the last procedure is taking so long and she was not expecting the complications she’s encountered. She is having some dizzy episodes again, too, which is disconcerting.

Annalies: We are working with her physicians in Milwaukee to locate a PT center that will accept our insurance and developing a PT program designed to meet her needs without sending her into a mitochondrial disease crisis. Her day nurse, Chris, is going for short walks with her each day, weather permitting, which is helping her spirits. We are closely monitoring another GI bleed. It appears that every time one organ system starts to behave, another acts up. She is dreading the potential of having to have repeat scopes, biopsies, etc.

Both girls are looking forward to the Starlight Prom and Dawn’s Bridal Shower in April. Art and craft projects are keeping them quite busy.

Tom and I are continuing to pray for safety when traveling for medical care, improvement in our financial status (the cost of gas, hotels, meals on the road, etc are staggering), positive news related to refinancing of our mortgage (change to conventional vs an ARM) and quick, positive resolution of the audit (our accountant is working on it).

Last week we celebrated my Uncle Fred’s life. I know how difficult this time has been for Auntie June, Den, Donna and their extended families. Yet, it was so good to spend time with my Aunts, Uncles, Cousins, and members of the church where I grew up, as well as my brother, Dave, who flew in for the service. When growing up., we often sang at family gathering and we all talked about Uncle Fred’s heavenly reunion with his brothers and sisters and the chorus they will have this coming Sunday.

As my thoughts turn back to remembrance of the Resurrection it brings feelings of boundless joy mixed with tears of blessing. Easter should have that effect on us all. And it should direct our thoughts to the blessed day that we shall see the King in his Glory-- the Author of Life and the Victor over Death. That is what Easter means to me.

This Easter, I bow and ask that God will bring our hearts closer to Him. My longing is - that He may teach us how to pray and how to love one another in greater depth and meaning. I pray for His mercy and His peace. I pray that we all may behold His beauty and through it, be changed into loving, compassionate, and kind human beings.

I wish you a blessed and wonderful Easter!

Wednesday, March 5, 2008 12:19 AM CST

Interim update March 11th

We will be heading back to Milwaukee on Thursday night for an early appointment in Cardiology Clinic. Kristen's incision split open thiws weekend. We are using steristrips to keep it together until the surgeon can determine what needs to be done to "keep the edges together". Kristen is struggling with this ongoing saga. She wants to recover and get on with her life. She knows the surgery was necessary and that her new pacemaker is working 100f the time, but she can't understand why her healing is so impaired. Tom and I are tired of the extra travel and the costs associated with it. Trusting the surgeon will have some tricks up his sleeve to help resolve this problem so we can get on with every day activities and wedding preparations.

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“Then Jesus said, ‘Come to me, all of you who are weary and carry heavy burdens, and I will give you rest.”’ Matthew 11:28

Rest is not a matter of doing absolutely nothing. Rest is repair. - Daniel W. Josselyn

"Burden" defined: A burden is a heaviness of the heart, spirit and soul—something that weighs us down emotionally, mentally of spiritually. There are two types of burdens we face: 1. Burdens given by God 2. Burdens of Life

Some days are harder than others. There are so many things that can get us down. Long hours at work, difficult relationships, financial difficulties, medical conditions, emotional stress and family responsibilities are just a few of the pressures that can weigh us down. Every once in a while the burdens of our lives get us down. We can't bring ourselves to be hopeful and optimistic all the time. It's so important to know that you and I can let go of those burdens for a day or two and take a much-needed day of rest.

Too many of us feel guilty if we give in to our feelings of sadness, disgust, anger or exhaustion. We think we have to keep a happy face all the time, yet, doing that can certainly take its toll on us emotionally and even physically. There are days when there seems to be no reason to get out of bed. I feel I need to take a mental health day by relaxing. Every once in a while I need to pamper myself to repair and rejuvenate the physical and emotional strength needed to face my world.

Right now, I’m feeling very burdened. The clinic visits in Cleveland a week ago, and the clinic visits in Milwaukee last week, coupled with other family/financial struggles or challenges are contributing. Our last journal entry discussed the findings and recommendations from Cleveland Clinic. Forward to last week and the beginning of this week.

Annalies: Our insurance will not improve Cardiac Rehab. The Case Managing physicians will attempt to devise a physical therapy program that will provide what is being recommended. I’m still concerned about potential sequela, but the risk should be less with an individual program rather than one that is very structured. In speaking with several other affected young adults, several have experienced similar negative effects and share my concerns. At least now I feel validated.

Kristen: Hematology: Diagnosis from bone marrow biopsy is Megaloblastic Anemia. Goal is to keep H&H stable. The suggestions: Kristen is NOT to be given Advil when she has any active bleeding. Amicar is to be given for excessive bleeding. Cardiology: Dr. Roth removed three sutures that had popped. 1) There are three more that look like they will pop through the skin soon. 2) Her new pacer is functioning well. He attempted to see if there was spontaneous rhythm and the answer was no. 3) I asked him to clarify his comment after surgery about stiffness of the right atrium. He said that may have been a poor choice of wording since he didn't actually do a cardiac cath. But, the long and short of it is, her right atrium is not functioning properly and is "misshaped" or abnormal in appearance and was extremely difficult for him to work with and in function. His suspicion is that this is a portion of her congenital heart disease/defects. He asked if anyone had ever spoken with us about repairing it surgically, as that would restore the function. SHOCKED would describe how I felt. No ONE had ever said anything about this. He said it would have been visible during her last cardiac cath (he could not tell there was any problem on the intraoperative echo- only when trying to place the wires. Her last cath was at CHW when her original pacer was placed. The cardiologist at that time NEVER said anything about this type of problem. Kristen and I would like to know if this is contributing to some of the issues she's been experiencing (cardiac, pulmonary or edema wise). We also want to know if this should be repaired now that a reputable physician that we've come to trust has openly identified it as an issue that has available treatment. I don't know the best way to handle this, but I want to discuss this with Dr. Earing when he sees both girls this Thursday (so he will need to get an understanding of what Dr. Roth saw/dealt with before the appointments on Thursday). My guess is that even Dr. Rice doesn't know about this or he would have discussed this with us at some point in the past.

Joanne: I’m finally starting more fully recover from the flu that has been going around. Yeah.

General family prayer requests: We are struggling financially. We have paid well over $1,000 for gas and lodging related to medical travel since the end of January. It is really taxing us. If anyone knows of any organizations that might help in this type of situation, please let me know. We are still traveling out of State at least once each week. We are also awaiting approval on refinancing our mortgage. Our ARM went up significantly November 1st, so more than 50f my take home pay is going just to mortgage. That doesn’t leave much for any other bills like gas, electricity. We started this process in January and are still waiting for all of the processing. Additionally we are in the midst of an audit from 2005. Our accountant is handling it, but the stress is unreal. The girls mitochondrial disease treatment is prescribed, but over the counter so there in no way to know how the government will rule. If they don’t rule in our favor, we will have to pay back almost $8,000 (and have no idea where that money would come from).

Josh and Dawn are counting down until their wedding. The excitement is filling the air. The photos of the dress are lovely. Dawn’s grandma is making all of the flowers. Our nephew, Jeff, will be officiating and Deb is making their cake. A true family affair.

Jesus knew the human condition. All around Him He witnessed human suffering. He worked tirelessly to help those that were sick and oppressed. More importantly, He left behind a system to replace His efforts and to expand His influence. He gave us the Church, sent the Holy Spirit and took His rightful place at the right hand of the Father. The church works on His behalf to help us, the Holy Spirit indwells us in order to guide and comfort us and Jesus Himself intercedes for us with the Father. So when Jesus said “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest,” He meant it. What burden do you have? What is weighing you down? Bring it to Jesus. He will comfort you, He will guide you, He will give you rest.

From the moment I put your trust in Jesus, the burden of sin left me. When it comes to life’s burdens, God may or may not take them away. If He doesn’t, I try to remember that God will give me the grace I need to stand strong in His love, strength, and wisdom.

Lord, I bring to you my burdens. You know my situation. I cannot make it without you. Comfort my heart today. Guide me. Give me strength. Help me carry on. I give you my burdens; please give me Your rest.

Thanks for all of your continued prayers and for all for the cards, notes, emails and messages in our guest book We know that you continue to pray for our family and thank you for your continuous prayers for all of our friends who are fighting their battles. Just know that we continue to think and pray for you daily. We will stop by your CB pages and guest books soon. You mean so much to us, our friends and family in Christ. If you have a few moments, please visit our guest book and leave us a note, favorite verse or quote, or just a simple hello. Those notes let us know that you are still walking the journey here on the website. More importantly they are little pieces of “sunshine” to us, treasures of gold. Your messages of support have really brightened our days during some pretty tough times.

Continuing to FROG...

Joanne and Family

Friday, February 22, 2008 10:16 AM CST

(Psalm 56:8) “… Each tear entered in your ledger,…”

Words limit us to a small box of expression. Too often, words have barriers based on personal experience and well, the human language. But I have learned recently, given the summary of the clinic visits for Annalies and Kristen in Cleveland, that when words fail me, tears frequently take over. Tears—with a language of their own, come from a soul inundated with feelings and words too weak to express our thoughts. So often, men and women fight back tears. Tears are thought to represent fears and they are also thought to be a sign of weakness or immaturity. But did not our own Savior weep? (John 11:35) And the prophet Jeremiah was also known as the “Weeping Prophet.” He would become so besieged with passion in his preaching of the Holy Word that words would escape him and all he could do was weep. The tears would flow. So those around him would feel the tender and sensitive presence of God.

Many times over the past few days, I have been at a loss for terms within the English language as well as beset with emotions; and when friends approached me, the tears easily flow. From someone who never used to cry easily, I can now let the tears come with great passion. I must say, it helps one feel good.

I am really going to lay out my heart here. It is never easy to show a part of yourself that you hope no one ever sees. This time I feel that a part of my vulnerability is to show how God is working on my heart. The past few days have been some of those ‘not-so-clear-thinking’ sort of days. Some of those, put the cereal in the fridge and the dog food on the people plates sort of days. But I keep thinking: God is not the author of confusion but of peace and also that He has not given us a spirit of fear but of power and of love and of a sound mind. These are part of what I’ve been thinking on (after I give into confusion and fret and recognized the need to clear thinking!). So, in an attempt to take every thought captive, I’m needing to continually resort to the whatsoever things are true, honest, just pure, lovely… think on these things.

Much of my problem with moving into this new phase of life is that it is proof that I am growing old and I have no ability to stop time and stay where I am. I feel like rebelling against the God of the universe. I liken my attitude to that of a two year old who doesn't want the ice cream you give them because it isn't exactly the way they desire it. I didn't want to go into a new phase of life because it would mean saying good-bye to the old and supposedly all of the tears and tantrums would get me what I wanted.

This reflection was brought on by what Dr. Cohen had to say during the clinic visits in Cleveland earlier this week and all that has been happening between the girls at home. Between what's been happening at home and Dr. Cohen's thought (from clinic visits on Wednesday) we've had a difficult few weeks.

Annalies: For the past 2-3 weeks we are appreciating a marked change in Annalies. At least 4 nights each week we can hear Annalies audibly snoring several rooms away. That's with both ventilators running in the bedroom! We also hear the snore abruptly stop, with silence followed by apnea alarms from her ventilator. When Kathy (the night nurse) or I go in, she has no visible or palpable chest wall movement. The events seem to worsen in intensity and duration as the night/early morning progresses. Recently it has taken very vigorous shaking, lights on and Stitch jumping on her chest to get her to arouse and take a breathe. Her color fades to a mild cyanosis with the worst episodes. Additionally, for the past week, she has had a headache which we can't break. We can get the edge off, but some level of headache persists. Annalies finds herself falling asleep multiple times throughout the day and is difficult to arouse during those naps. We can usually tell she has fallen asleep because we hear the snore. In clinic, she told Dr. Cohen she feels terrible, has absolutely NO energy, feels absolutely exhausted, can't stay awake no matter how hard she tries and said basically "the mito has a firm hold on me that I can't shake or tolerate. I can't life like this...this isn't living." After his exam, he said he honestly doesn't know if we will be able to reverse this or improve her situation. He would like Dr. Mikhailov and Dr. Rice to see if we can get her into a very slowly progressive cardiac rehab program. He told her it is like she has had a massive heart attack and the only hope is to slowly try to rebuild the muscle(s) and hope for some healthy mitochondria to develop. Annalies' BIG concern (mine as well) is having the support she will need to deal with the sequalle of any extra exercise. He would like us to maximize the treatment plan - basically, the supplements are already maximized, increase hydration, and the biggest factor -to attempt to maximize exercise. It seems like a catch-22 because exercise makes her feel worse (severe muscle pain, worse headaches, stroke-like events, etc), but he really feels that some sort of exercise, minimal but daily if possible, may help her overall to feel better. He mentioned aquatics several times. We have NO local indoor pools at a temperature either the girls or I can tolerate. We've tried multiple. His feeling was we would be able to tell within 6 months if this is helpful or if there is really nothing more any of us can do but supportive care. Annalies understands and is willing to try, if we can arrange this, but is VERY concerned about having the support to manage the symptoms that develop with each exercise attempt. Honestly, so am I. He discussed how diet doesn't work for many of the patients and based on her earlier labs it is clear that her diet is close to starvation or semi-starvation, etc without weight loss.

Another request he mentioned was to have another sleep study done, since sleep issues, (apnea, etc) and lack of a good night's sleep may be playing a large part in fatigue during the day time. He does feel strongly that the dizzy episode and markedly increasing edema are cardiac.and vessel function.related. Annalies' edema has been fluctuating with some periods where it is almost exclusive to the left side of her body...very atypical.

I'm wondering if we will need Palliative Care to assist with symptom management while we try this, provided we can get insurance approval. For both girls their disease state is currently spinning out of control. Thoughts???

Kristen continues to have times when she still can't seem to catch her breath or carry on a conversation without gasping, She doesn't seem to realize she's doing it, but it is obvious to everyone else. Her breath sounds remain more diminished that typical for her. Dr. Cohen didn't have any suggestions in regards to things we might try to improve her cardiac or pulmonary function. Her right atrium still isn't functioning properly and that is directly impacting her lung function. We return to Milwaukee next Friday to see the surgeon for follow up and again on March 6th to see the regular cardiologist. Kristen also needs to be seen by the Hematologist in follow up to the bone marrow biopsy as her CBC remains abnormal.

Personally, I've been in to my lupus specialist twice in the past three weeks with the respiratory flu and secondary lung infection that's been epidemic in the Midwest. The infection is resolving but the asthma component has not. I'm hoping the current burst of Prednisone helps resolve it quickly. With the cold air, swift winds and snow, it's difficult to walk and breaths (and respond to the girls alarms throughout the night).

My tears over the past few days remind me of diamonds reflecting in the warm luminosity as their tears meet up and dance around the lashes and make their final escape down the cheeks. This event taking place causes me to think that the diamonds are evading from the soul for the world to witness, to experience, and to take pleasure in. Don’t we feel great compassion for this person? We now have a desire to rescue? It speaks compassion, heartbreak, need, friendship and love, just to name a bare few. For now, the language has become universal. Everyone speaks—Tears! Do you think that just may be, these tears will be given back to us in Heaven as Jewels for our crowns?

As I reflect on this new phase of life, caring for two children with a progressive disease that is spinning out of control, and trying to deal with my respiratory challenges, I finally feel defeated. But, defeated in a good way. I do not believe that God gave Annalies and Kristen to us to teach us a lesson but I believe that God uses these valleys, times of a very uncertain future, as an instrument to teach us lessons even as He uses these valleys to change other people's lives. I can not change what God has ordained from the very beginning of time whether that be life choices, children, or death. Death is final. There is no turning back but only going forward and embrace the future that God has in store for me.

So, I humbly submit to my Creator who has created this life for my sanctification. It is a stepping stone toward an eternity with Him in a new heaven and new earth. I still do not understand His ways but I continue to trust.

“Our Lord bottles up my tears and holds them.” (Psalm 56:8) Tears are a gift… now and in Heaven.Share them…Receive them.
Tears from our soul are a gift from our Heavenly Father. Let them flow from our soul, for we will wear them proudly on our crown one day…

FROGing,

Joanne and Family

Monday, February 4, 2008 11:41 AM CST

HAPPY HEART DAY!!!!!!
February 14th is Congenital Heart Defect Awareness Day

I can't believe Kristen is recovering from her 4th heart related surgery on this day and we don't have to go through what we went through a couple of weeks ago weeks ago. Kristen and Annalies are both affected by heart disease (Kristen congenital and acquired, Annalies by acquired heart disease). The poem at the end of this journal entry was given to me by another “heart mom”. It’s so true. I hope it touches your hearts as much as it has our family. It's sad to say, but we have been in every situation mentioned and all we could do when we read this was remember the goodness of God to have spared our CHD child and our child with acquired heart disease.

I sit here thinking of what to type, and I am truly humbled by God's goodness and grace. It is hard to believe what month year brought for our family...a very sick daughter, difficult decisions, separation as a family, closed heart surgery, markedly decreased lung volumes, an infection, blessings, hope, a deeper faith and walk with God, renewed strength everyday and wonderful new friendships.

It has been ten days since I last shared our journey with you. Since then we’ve been back to Milwaukee for a follow up clinic visit. I am thrilled to be writing today about how well Kristen is doing. The physicians, Tom, and I decided we would let Kristen guide the way and we would follow. She is choosing to live and we are choosing to hope, so life is moving forward and so are we. I know how many people were praying and sending love to her and to us and I know how many people were scared for him and for us and I know how many lives he touched without ever knowing it—she is an amazing being of light and love. Everyday I feel more blessed than the day before to know her, love her, care for her. Everyday is a gift I will treasure for a lifetime. So with life in forward motion we are trying to make everyday a great day…

Prayer Requests:
1. Kristen to get stronger, regain function of her left arm and her lung function.
2. Kristen will have less GI issues as her heart rhythm stabilizes.
3. Kristen’s heart to heal and get stronger (specifically her aortic valve, tissue surrounding the value, and her heart rhythm).
4. Wisdom for all the doctors, nurses, who are part of her care.

Somewhere...someplace... today...
A family is waiting to hear...
Is something wrong with their baby?
The answers aren't quite clear...
This family has entered an unwanted world...
And they just don't know what to expect...
Somewhere...someplace... today
They first heard the words: heart defect.
And how they hoped this was not true...
And thought... this cannot be...
I too... know just how this feels...
For one day...this was me.

Somewhere...someplace...today...
A man and a woman embrace...
Their baby is in surgery...
They long to see her face...
They haven't got to hold her yet...
Without...a cord or line...
They pace the room awaiting news...
And hope she'll be just fine.
Prayers fill this busy waiting room...
And mom and dad are scared...
Somewhere...someplace..today...
The tiniest hearts are repaired.

Somewhere...someplace...today...
A child's growing fast...
Smiling,laughing,thriving...
His mom thinks...can this last?
It's almost easy...to forget...
That anything is wrong...
Somewhere...someplace..today...
Her child seems so strong.

Somewhere...someplace... today...
A little boy fights...just to live
A father holds his tiny hand...
His love...all he can give...
The doctor's are all baffled...
They fear that he might die...
Somewhere...someplace...today...
A family says goodbye...

Somewhere...someplace...each year..
More than 40,000 families will see...
What it means...when something's wrong...
They'll face a CHD.
Today...for just a moment...
Stop...remember...reflect...
Make time to tell someone you know...
"I've been changed by a heart defect".

Once again after a rough month all your comments, prayers, and verses have lifted our spirits. How different our experience would be without the Internet. It is easy to feel like the world is the hospital room you are stuck in and nobody else in the world knows or cares what is going on. Then we see and read many messages of encouragement from people who do know and care deeply.

Walking the Path,

Joanne and Family

Monday, January 28, 2008 12:30 AM CST

Just a quick note to say we are safely home. Due to a variety of circumstances all beyond our control, it’s been impossible to spend time on any computer and update our page. Our week was exhausting; God’s presence was surely there, and it was an honor to be a part of it. Needless to say we are emotionally and physically exhausted. I can hardly think straight and have not had time to realize the emotions involved. But I can say both Tom and I felt a bit like Abraham standing over Isaac saying "We trust you, Lord”. It's not a fun place to be, but it makes me reassured that we're both somewhere in this spiritual walk together. The Lord is doing amazing things through others and in providing for us. He’s also provided a fabulous medical team for our daughters and their various treatments. Please join me in praising Him for this, but also in prayer, that our needs continued to be met. Also that the emotions of it all stay within the boundaries of trusting God completely with that which He has allowed into our lives. Thank you dear friends and family with the outpouring of love and prayers.

Looking back on what Kristen went through last week has been extremely overwhelming. We did have three new, unresolved issues added to “Kristen’s plate” that we will be asking God’s help in and researching further. During the procedures it was discovered that she has a stiff right atrium, a faulty aortic valve and no vascular access between her pacemaker pocket and her sternum. The surgeon wasn’t sure if this is related to her mitochondrial disease or congenital heart disease. Kristen would have to throw more curve balls into the medical mix, wouldn’t she?

Kristen was in surgery for over 10 ½ hours. Dr. R was able to repair the issues with the valve. He removed many abnormal heart rhythm pathways within the right atrium and around the valve. He also removed most of the rhythm pathways throughout the sinus node (the heart’s normal pacemaker which isn’t functioning for Kristen). Then the focus shifted to replacing the broken pacing wire and pacemaker. Dr. R had to make several incisions to accommodate for the atypical vessels. Kristen wasn’t too pleased when she realized she had additional battle scars. They are vivid reminders that she’s been through a lot and that God has been with her every step of the way, every surgery, every moment of every day. Kristen has made it through the worst of situations and this was just a stepping stone…another battle we will conquer with God by our sides. Kristen is not giving up in her battle against mitochondrial disease, congenital heart disease and congenital central hypoventilation syndrome.

Kristen will return to Milwaukee on Friday to check on the healing progress and to interrogate her pacemaker. The dizziness she experienced before surgery is gone. She has been aware of “rare” rapid heart rhythms. Dr. R said he did as much as he felt he could safely do given Kristen’s medical complexity. He openly told her and us, he may have to take her back to surgery in a few months to remove additional; abnormal rhythm pathways. From Kristen’s comments, she is thinking additional surgery will likely happen, sooner rather than later.

Unfortunately, just because the surgery is over doesn’t mean that Kristen’s ordeal is over. Post operative complications continue including, 20oss of lung volumes, pulmonary inflammation (possibly infection), bleeding at the cardiac sheath insertion sites, and a urinary tract infection. Please continue to hold her up to the Father and let us not forget to PRAISE THE LORD for the great things he has done. When it pours…God reigns. We find ourselves today in another valley…but Thank God, He’s the lily of the valley! Even in the midst of disappointment, our God is SO good. Our blessings FAR outweigh our circumstances, and we are grateful to God for the everyday gift of Kristen. Kristen seems to feel somewhat better---no outward appearance of her being sick. So that’s a blessing. She’s SUCH a trooper. She’s resilient beyond words.

J.K. Rowling, author, once said, "It is our choices that show what we truly are, far more than our abilities." This quote is perhaps one of the most wonderful examples of a good attitude for those with significant chronic illness.

“But, oh my soul, don’t be discouraged. Don’t be upset. Expect God to act! For I know that I shall again have plenty of reason to praise Him for all that He will do. He is my help! He is my God!” ~ Psalm 42:11

Forever and always counting our blessings- Thank you Lord for just one more day.

Joanne and Family

Tuesday, January 22, 2008 12:40 AM CST

I just spoke with Joanne and she asked me to update you all. Kristen went into surgery this morning at 9 am CST and the surgeon just came out with an update. One of Kristen's valves in her heart surprised them and was not in good shape. It is felt that it is causing some of the problems she has been having so they have to do some unexpected work there before they can move on a do the other work they were planning to do. He also said that they have hours to go before they will be done. He feels there are some Mitochondrial issues, some congenital heart issues, and some CCHS issues at play with the issues she is experiencing. So far she is tolerating the procedure well. Please continue to pray for the family and Kristen during this time. Her brother Josh and his fiance drove from the Chicago area to be with them and due to the incredible snow and horrid driving conditions did not arrive until 4:30 am today. I will update more as Joanne updates me. She does not currently have computer access, however I am sure that she still would enjoy the notes of encouragement. They are thinking Kristen will be in the hospital for a least a few days after the procedure is done.

Tuesday, January 15, 2008 9:45 AM CST

Calling All Believers....It's Time to Pray.

Welcome back to our corner of the world. We appreciate all of your kind words and blessings. Do you ever have those moments when the world stops around you and everything seems perfectly aligned and peaceful? Then you try to store everything you smell, feel, see and touch during that time away in your mind so that you can come back to that moment later? I've had a few of them in my life, and I often take myself back to those moments for peace when I need it. For me, moments like this are pretty rare and I think that's what makes them so special and memorable: something like the beauty of the mountains in Lake Luzerne, NY. This week I’m reflecting on this type of moment to try and maintain a sense of peace and calm, remaining faithful in prayer

You may ask, "Why pray?" We have a God who is all knowing and omnipresent. If He knows everything in advance before we even ask or think, why should we pray? He knows it anyway. The answer, I believe, is that prayer is really a relationship. God knows our needs, but desires a relationship with us. A relationship requires communication, openness, and honesty, especially for the relationship to grow. When a relationship is growing, one or both of the parties involved grows and matures.

Prayer gives us tremendous peace, even when our whole world seems to be falling apart. When we’ve have been up all night, the Lord gives supernatural strength to make it through the next day, based upon prayer the night before. When there is nothing else that can be done, physically or even emotionally, prayer can give tremendous strength by just talking to the Lord. The dark nights don't seem so dark, and you can make it through.

We know for a fact that the reason Kristen and Annalies have done well through all of their medical challenges and past surgery is because they have had hundreds of people praying for them. We received huge amounts of prayer even when they were in our hopes and dreams prior to their adoptions. One of the things I have learned so far in this journey is that PRAYER WORKS. Sooo.... Kristen, Annalies and our family as a whole who have gone through A WHOLE LOT, more than most people can ever fathom. Please pray for us and tell your friends to pray for them, too. THANK YOU.

On Sunday we will travel to Milwaukee. Annalies and Kristen both have clinic visits scheduled on Monday and then later in the week. Kristen will be admitted to Children’s Hospital of Wisconsin Monday evening. This is so the medication she requires for her bleeding disorder can be administered prior to surgery. Her surgery is scheduled to begin around 8:30 Tuesday at Froedtert (connected by tunnel to CHW). Help us pray that God will direct the decisions being may by the physicians in the surgical suite. Surgery they have planned includes electrophysiology studies, ablation of the arrhythmia tracts, ablation of the scar tissue from previous heart surgery, ablation of portions of her SA node (which isn’t working properly), potential removal of faulty pacemaker wires, insertion of new pacemaker wires and replacement of her current pacemaker. The surgeon estimates the total procedure time of 8 to 12 hours. At some point in time next week, we need to discuss recent signs and symptoms that Annalies has experienced indicating similar cardiac arrhythmias. Her overwhelming concern has been, “does this mean I’ll end up needing similar tests and surgery?” Good question.

If anyone is so inclined, cheer mail would be appreciated. We will be staying at Kathy's House 600 N 103rd St
Milwaukee, WI 53226. Kristen will be hospitalized at Children's Hospital of Wisconsin 9000 W. Wisconsin Milwaukee, WI 53226 from the 20th through at least the 22nd.

Walking this journey is so difficult. Even though we know God is with us, most people just don’t understand the feelings, emotions and stresses. We know God’s plan is perfect. We're sad because we don't want to see our perfect daughter go through heart related surgery/procedures a 4th time. Imagine seeing your child fight for there life. It's not fun. Just imagine how Mary felt when her son was hanging there on the cross. Just imagine what she was thinking and going through. At least my child is safe in the Father's arms, and feeling very little pain in comparison to what Christ felt. Kristen and we are afraid she will have tremendous difficulties through and after this operation. I'm not going to lie and say we are okay with everything, because we're not. I told God when Kristen was young and Dr.'s were thinking she might not make it that I was fine if she did just that. Now, I don't have that peace. Tom worries about this too. We could not imagine life without our daughter. I know God will take her when He wants to take her matter what. We just want a peace about things. It would be so nice if she could go through this surgery with flying colors unlike the previous ones. That would be almost perfect. Is that God's plan? Just please pray for Grace, Strength, Comfort, Peace, for us and Kristen in the days to come. Even in the midst of the storm we are praying that we will be comforted

Overall, how do we handle the serious illness within our family? The first and most important thing we do is pray. We are trying to get everyone we know praying as well as people in other churches and all around the country praying. Prayer can change things. It says in Revelation 8:3-5 that our prayers become something physical. Second, we are in fellowship with God. Third, everything possible must be done medically. We’ve tried to find the best doctors and specialists we could. This has been difficult however, because of time, insurance, work and financial considerations. Fourth, we share your feelings, fears, and deepest thoughts with your each other and those we feel we can trust (members of our church family, close friends and those who follow our caringbridge journal). We have to find ways to share the emotional load and vent some of the feelings and fears. It is not wrong to feel afraid, worried, etc. But have to handle them in a beneficial way with those willing to share the load. We don't try to bear it all by ourselves. And, last, we TRUST IN GOD, for His provision and His answers, IN HIS TIME. We may never get answers to "Why." Only God ultimately knows the answer to our "whys." We have to trust that He is just, that He loves us, and that He has our best interests at heart. We must remember that God's timing is perfect. We may never get all the answers we want. It may be a long time for healing, and there will continue to be times of anxiety, uncertainty, and fear. We may not know if healing has truly occurred or if "whatever" is back. We will still have to daily trust God. God gives grace for today. Finally, we continue to pray, confess our sin, trust, and do it all over again each day.

We want to express our deep appreciation for everyone who is surrounding us with love and prayer right now. We have such amazing people in our lives and I feel like we have such protective, peaceful warmth surrounding us right now. We are overwhelmed by the amount of prayer and love that's been given to daughters, and to us.

1 Peter 5:7 (NIV) - Cast all your anxiety on him because he cares for you.

Quote of the week: Courage is fear that has said its prayers. ~ Dorothy Bernard

Saturday, January 5, 2008 11:28 PM CST

Dear Family and Friends,

The new year is here and its coming has been pretty uneventful for us at the moment. As I sit here tonight and reflect on the past week I realize how peaceful it was. Just us. Here at home. The New Year started completely uneventful and it was exactly what this tired mom, dad and children needed. When we think about the new year and all the possibility it holds for our family our biggest hope is that it will end up just as this week has been. Uneventful. Just us. Here at home. Enjoying each others company. What a blessing that would be for our family. Nothing pulling us apart or causing us concern. Just every day ins and outs blessing our hearts with normal family living. How wonderful it would be to have no hospital stays, no close calls, no surgeries, no moments that cause us to hold our breath and wonder what the next moment will hold. I think that uneventful just might become my prayer for us this year.

I say all of that while not forgetting the awesomeness of watching the hand of God reach down and carry us through the past year. It was incredible to know that He was there guiding us through those tough decisions and collecting each and every tear we shed. He really used 2007 to help us grow. We are not the same and I think that may have been part of His plan for us.

Health related challenges are not easy to live with. They can be a hard blow to any family and the fallout can easily derail us from the vision we once had for our future. As time goes by, a family can grow weary, especially when there are financial struggles, strained relationships, little or no personal time, endless therapies, fights with insurance companies, government agencies, schools, and so forth. Our vision for the future seems to become lost in the pressures of today. The disappointments we have had to deal with might make us reluctant to set new expectations for our future. Learning your child (or ones self) has significant medical challenges can be an overwhelming, devastating event in any individuals or parent’s life. We know. Two of our three children have received such a diagnosis. If you are an individual with or the parent of a child with any chronic or life threatening disease, you know the agonizing pain of the shock, grief, distress, and even the hopelessness that can grip your soul. If you are a friend or family member of someone with a child with significant health related issues, you may well have spent time trying to comfort or bring clarity to a grieving parent. And in the midst of the dark night, one question burns in our spirits: Where is God? Within that question lies many others we are often left to ponder: Does He have a plan for those afflicted with life changing illness? What is to become of us/them? What destiny could we/they possibly have? Can He, will He heal us/them? And what of the families? Will we ever get our lives back? Will our marriage survive? Will we survive?

As these questions resound within our hearts, God has given us a promise we can hold on to: “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart”(Jeremiah 29:11-13). In the midst of all we are facing, we do our best to remember that God has a specific and hopeful future for each member of our family, as well as for the family as a whole. We often have unexpected issues to deal with in life, it does not negate God’s plans for us. The unexpected issues and difficult circumstances we face can be the very things that shape and hone our vision for the future, as well as help us understand new dimensions of God’s plans for our lives. He sees the whole picture, even that which lies ahead. As we learn to hear and obey His voice every step of the way, we can be assured that we are properly positioned to face anything that lies ahead. We may not know specifically what the future holds, we can get a general idea of God’s direction in our lives, at least for the immediate future. Having a vision is important for understanding the direction in which we are heading. In other words, we set a goal based on where we feel God is leading us. If this is not defined in our lives, we have no direction and tend to stayed trapped in one place. It is like driving a car with no destination in mind. Not only do we not make any real progress, we also stand to lose time and money (by wasting gas and wearing down the vehicle) that could have been used to take us somewhere purposeful. But when we have a destination in mind, we do not run in circles. Without a godly, biblical vision or goal, we cannot know what our next step should be so that we can grab hold of all God has for us. People who do not understand the direction God has planned for their lives, actually begin to decline. As human beings, we are either in a state of growing or diminishing. In order to continue growing, we need to be reaching toward something.

This past week was big for us. We were finally able to schedule Kristen's heart procedures/surgery, the follow up clinic visits for both girls in Milwaukee and the follow up clinic visits with Dr. Cohen at Cleveland Clinic. This may sound crazy, but it's taken months to get everything coordinated. Kristen, Tom and I have each said that we're actually looking forward to this. It's an odd feeling, this dread tinged with anticipation. I've never gone scuba diving, but I wonder if it feels similar, jumping into a great unknown, coming face to face with man eating ocean life. Normally we'd only feel dread, but Kristen is so symptomatic, and her heart and brain are just working so hard, that we want her to be healthy and able to enjoy life and continue her education like she should. Repairing the issues with her heart should help her do that.

This surgery, while scary and huge and mind-boggling to us, is the "bread and butter" of our cardiologists and cardiovascular surgeons. So while it is, after all, heart surgery, it's not that scary and huge and mind-boggling to them. What we are dealing with is the most common of issues that confront young adults who have had repairs of congenital heart conditions, and our physicians have performed the proposed procedures countless times. Knowing that brings a measure of comfort to calm our fear, at least a little. If they proceed with everything they have proposed, Kristen will be in surgery for 8 to 12 hours.

When I opened the calender for 2008, I took my pen and wrote the words, "Kristen's Surgery" on January 22nd. That's something I never fathomed I'd ever have to write again. And while the surgery still looms ahead, large and scary in my mind, I'm trying to embrace God's peace. The surgeons may be incredibly skilled, but God is more so. Scripture says, "He heals the brokenhearted, and binds up their sorrows." So we do feel some anticipation, knowing that we will get to witness a healing like I've never seen, and that soon we can put this chapter behind us and move forward. Whether or not the next chapter is as hard, only time will tell. But each year, on the anniversary of her surgery, I'll write it down on the calendar, remembering the day God held our hearts in His hands while the surgeon held our daughter's in his. And both were healed.

Prayer requests: Kristen: successful surgery and uneventful clinic visits. Annalies: uneventful clinic visits. Joshua: A full time position in law enforcement. Joanne: Discernment regarding increasing joint issues. Tom: Patience when caring for his mom and meeting the needs of our family. Family: Safety on travel and lodging for all of the out of town medical care currently scheduled. Financial needs met in regards to gas, lodging, meals and home related bills.

As we face some of life’s greatest trials, we know that God is there for us. There is hope. There is life. There is restoration. There is a future. But for us to grab a hold of all God has for us, we must first seek Him. We must pray. For that we need insight and vision. Gaining vision does not necessarily have to be an overwhelming process. John P. Kotter says, “The word vision notates something grand or mystical, but the direction that guides successful transformations is often simple and mundane. A vision can be mundane and simple, at least partially, because in successful transformations it is only one element in a larger system that also includes strategies, plans and budgets. Without a good vision, a clever strategy or a logical plan can rarely inspire the kind of action needed to produce major change”.

We are overwhelmed to tears at the caring comments we've received to some of our journal updates. After I write the updates, I get busy with life, caring for children, work. I know many of you can relate to the overall busyness of life these days. When I get back to read our guest book and find you reaching out to us in compassion, lovingly, without judgment and with precious comments of encouragement. What a blessing.

Thank you, dear friends, for bearing our burdens and taking time out of your busy days to pray for us and taking the time to write us words of encouragement. The darkness lasts as long as is necessary for God to accomplish His purpose. For days, we've been experiencing horrible battles, struggling to give our emotions and concerns to God, over and over. We listen to sermons, read Scripture, pray, and study, but our minds continue to drift while reading, our prayers were halted mid-sentence while anger arose deep inside. We are so weary.

Then you lifted us up. Throughout the day and week, we began feeling the peace we longed for. This evening we felt a calm. We were listening to CD's while working on craft projects. This song played in my mind all night:

God will take care of you,
through every day, o’er all the way;
He will take care of you,
God will take care of you.
No matter what may be the test,
God will take care of you;
lean, weary one, upon his breast,
God will take care of you.

We feel “back on course.” Praise God. What a powerful lesson. When struggling in a spiritual battle and unable to get victory, ask for prayer from others! We need encouragement from one another. We are weak individuals. God commands us to bear one another’s burdens. Every time we face a trial that seems devastating under the surface, God is working out a plan for good in us and others. Under the surface so much is going on, an ocean of wonderful, marvelous work, designs, and plans we cannot see. How many times does it take to remember to rejoice in trials? Apparently several more for thick headed people like me.

Thank you for being a light to us in our darkness. Know we are praying for you too. We will watch together as God works in each of us shifting us to greater areas of service as we grow in faith. Job 28:3 He setteth an end to darkness, and searcheth out all perfection.

No matter what tomorrow holds I know that we will not face it on our own. He will provide. He will strengthen. He will comfort. He will bless. He always has. Even in the midst of great pain He was present. Thats just who He is. The Father that loves us enough to carry our burdens and see us through to the other side.

What a joy it is to parent our children. Tom and I have been so blessed. They still manages to melt our hearts. It is an amazing feeling to be the ones chosen to love and parent these young adults. So as we lay down to rest on this, uneventful day in 2008 I hold in my heart the hope of a whole lot of days of "nothing special" because it is those very days that make my life so incredibly special. Happy new year to each one of you.

Continuing to FROG....

Joanne and Family

Saturday, December 29, 2007 9:26 AM CST

We truly hope all of you had a wonderful Christmas and got to enjoy time with family and friends. Our Christmas was blessed with loads of happiness, smiles and laughs and it will be a Christmas I will never forget. It seems this month is moving so rapidly I can't keep up. Too many tasks and not enough hours in a day to complete them all. Because I didn’t get my act together in time to send out Christmas cards, I missed the perfect opportunity to thank you for the support, happiness and fun your friendship has brought to our lives...

Time has a mind of its own, and there’s no stopping it! The New Year will ring in on January 1, 2008 at 12:00 a.m. Maybe that is why it is so frustrating when things don’t happen according to my schedule. The old saying, timing is everything, certainly holds a bundle of truth! I believe because so many of us operate in a world ordered by time, we probably have certain expectations regarding God’s timing! I know when I ask God for an answer to prayer, I’d love a quick response! I have to remember God’s timing is different from my timing, or anyone else’s timing! It can be very difficult to learn to wait on God!

Waiting on God simply means allowing God to work things out according to His divine schedule. When looking back on this past year, in retrospect, I see in each situation, God revealed His plan according to His schedule and it all made perfect sense! Things happened the way they did for a reason. Were the situations always the way I had hoped for and the way I wanted them? No, but I can see now exactly why doors were shut and windows were opened. I can see God was fulfilling his promise for me to prosper and giving me hope and a future. God created time. What may seem like waaaay too long in a chronology based on seconds, minutes and hours could be just right according to God’s clock. It’s hard to remember God is at work according to His on schedule, even when the days are passing by as I sit awaiting an answer. God hears every prayer offered on my behalf and knows every question on my lips. God’s plan is much too great to be contained in an earthly calendar!

I truly feel 2008 is going to be a great year. 2008 is going to be a year full of overcoming many obstacles and one full of complete healing for many individuals. Our God is a gracious and merciful God and His ways surpass our understanding in every way. I look forward to the New Year. I look forward to watching my children grow both physically and spiritually. I thank God in advance for always watching over them and for leading them down the right paths which glorify Him.

“Trust HIS Heart” By Eddie Carswell and Babbie Mason

All things work for our good though sometimes we don’t see how they could. Struggles that break our hearts in two sometimes blinded to the truth. Our Father knows what best for us his ways are not our own. So when your pathway grows dim and you just don’t see him remember your never alone.
He’s see the master plan and he hold our future in his hand so don’t live as those who have no hope for our hope is found in him. We see the presently clearly but he see the 1st and the last and like a tapestry he’s weaving you and me to someday be just like him Ohhh.
God is to wise to be mistaken God is to good to be unkind. So when you don’t understand when you don’t his plan when you can’t trace his hand trust his heart, trust his heart. (He alone is faithful and true he alone knows what is best for you).

This song describes our family perfectly. Even though we don't understand, He is in control, He loves each of us, He knows our struggles. Circumstances do not define us, our individuals challenges don't either, we are defined by how we deal with them. God is good, minute by minute, day by day. We have been given everything we need: strength, encouragement, trust, smiles, friendships, hugs. Peace that everything is okay. We do our best to be content secure in the knowledge that God is caring for our family. It's His master plan and He is leading us (even when we don't understand.Even though we can't race His hands, we can rest in Him and trust His heart.

As we enter 2008, we'd like to share specific prayer requests for each member of our family and our family in general....
Tom: Patience and tolerance when helping care for his mom and in caring for Annalies, formally, as her PA. Hope for a job opportunity in a warehouse or store with benefits later this year.
Joanne: No worsening of or lupus fares. The ability to meet doubled work related demands and care of our children. Safety when traveling to and from work (and while at work).
Joshua: God' s blessing on his marriage to Dawn June 15th, 2008. A full time job in law enforcement.
Annalies: Acceptance of disease progression. Progress in the book she is writing for publication.
Kristen: Successful heart surgery on January 22nd in Milwaukee. Slowing of disease progression. Progress in her studies toward her high school diploma.
Family: That our financial needs are met (we are trying to refinance our ARM since it increased almost 500/month in November). That we can place nutritious food on the table each day. That our vehicles remain reliable sources of transportation. Funds to pay for a room at Kathy's House while in Milwaukee and the Ronald McDonald House or a hotel when at Cleveland Clinic..We continually pray that the decisions the physicians and we make are from wisdom God gave them and us, and God's will for our family. We ask your prayer for guidance, strength, courage, patience, and for our faith to remain strong.

We will open the book. Its pages are blank. We are going to put words on them ourselves. The book is called Opportunity and its first chapter is New Year's Day. ~Edith Lovejoy Pierce

Sending out HOLIDAY LOVE with a side of HOPE and PRAYER....
Taking the next step daily...by His grace-

Joanne and Family

Sunday, December 23, 2007 10:39 PM CST

When the world thinks about Christmas, it thinks about miracles. It thinks about supernatural events that change peoples’ lives. And everybody hopes and prays that a miracle will happen to them. Well, the world is right on one thing: Christmas is about miracles. But the miracles have nothing to do with Santa Claus, or starting over in life, or even about those in "Whoville". The three great miracles of Christmas are God’s love, God’s gift and faith — three miracles that have no monetary value and no earthly equivalent — but three miracles that the world needs, that the world MUST have and that God gives us freely. Three miracles — three supernatural gifts, three heavenly wonders — this is Christmas. But these miracles are not limited to Christmas time. We should not recognize and celebrate them only in the month of December. For God is still at work. He is still performing miracles — the same miracles of Christmas, each and every day.

The dictionary defines miracle (mir·a·cle) as: 1. An effect or extraordinary event in the physical world that surpasses all known human or natural powers and is ascribed to a supernatural cause. 2. Such an effect or event manifesting or considered as a work of God. 3. A wonder; marvel. 4. A wonderful or surpassing example of some quality.

I guess in a more round about way, we have discovered the meaning of "miracle" in our lives...but how do we tell others, show others, what it means in their life? When faced with Annalies and Kristen's medical prognosis - we had hoped that God would send us a miracle. Heal our beautiful children, make them healthy, allow us to keep them.. These thoughts now have been replaced. God has allowed us to realize the miracle in our lives. We have two young women who loves and protect their family. They have learned compassion and acceptance. Tom and I have a marriage, where our highest goal is to keep Christ at the center. Tom and I, celebrating 30 years in marriage next week, maintain a personal desire to know Christ better...this is a direct result of our personal struggles, not in spite of them. Early in our marriage, we learned the value and frailty of life. We have two precious, unique daughters with a devastating disorder-"significantly life threatening and non-curable"-yet every day they wake up bringing sunshine into our home. Kristen will have her 4th heart surgery on January 22nd. We are fortunate to live in a community with knowledgeable physicians who are willing to try to treat atypical, unanticipated issues. Annalies is working to complete her first short story, hoping it may be eligible for publication. Joshua has completed his basic college education and has met the woman of his dreams. Dawn and Josh will be united in marriage on June 15th, 2008. We've been blessed with three superbly trained service dogs who do more for us than anyone could have imagined. We have a God who is still in control, sits on a heavenly throne, who loves us. Amazing. Unexplainable. Overwhelming.
Miraculous.

Miracles have come to our home in many different packages. Miracles today are still God given acts of marvel...of "great quality" as the definition says. For some it's a clean bill of health after months of doctor's appointments, bad news, treatments... For some of our church families it's hugging their soldier husband, father, son back from a long, tiring war...What does "miracle" mean to you? Sometimes in the hustle and bustle of everyday life, especially at this time of year...in the momentum of dealing with what life handed you...you lose sight that a miracle has happened, is happening in your life. Maybe, your miracle is a close friendship, additional time with a loved one, peace (through Christ) during the storm, heavenly light, at the end of the tunnel.

God still moves. Still speaks. Still waits, arms opened wide to love us. A miracle in and of itself. It's amazing to us that in the stillness, when we really stop and pray, stop to think...just stop...we really learn and know that He is God. Sometimes we don't get the miracle we want or think we deserve. For us, God is teaching us that one of our miracles is just as simple as continued faith and trust in Him.

Merry Christmas to everyone who has been in some way part of our lives. Your prayers, visits, messages, interest and shared laughter have been a great blessing. We wish you a blessed Christmas that's alive with all the magic, mystery, depth, fun and love that God amongst us in Christ means. We never forget the love of our families and friends who blesses us with their presence whether still here on earth of who wait for us in heaven. Christmas is a time of love and family, a time of memories and gratefulness. We never want to forget what blesses us the most and the gift for which we are most thankful--the birth of our Lord and Savior, Jesus Christ.

The real miracle of Christmas is God’s demonstration of love for all people through the Lord Jesus Christ. May His love fill your heart with peace and joy this Christmas and always.

From our house to yours, we wish you God's love and peace this Christmas season and blessings in the coming year.

Joanne and Family

Friday, December 7, 2007 9:53 AM CST

Let it Snow, Let it Snow, Let it SNOW!!! Hello from the cold, blustery, snowy Midwest! I hope this update finds everyone preparing for a wonderful and blessed CHRISTmas season. Our home is no where near finished in the decorating category! The Friday following Thanksgiving we talked about putting up our tree. Yes, our daughter is a Christmas maniac. She can’t wait to decorate, buy gifts, and write cards. I started listening to my Christmas CD’s at the beginning of November. I have great Christmas music. There are not enough weeks in the season to listen to the fantastic praise music written for the newborn King. I digress… Kristen and Annalies love to make scrapbooks. While watching Kristen open a gift box with scrapbook supplies inside, I realized that our Christmas tree and home decorations are our family scrapbooks. Putting up the tree becomes a trip down memory lane. My daughters and I, sometime Tom joins in, carefully take each ornament from the various boxes pulled from the attic. We unwrap the fragile keepsakes one at a time to reveal a hidden treasure. Each ornament is a story: a memory from our many years of living on this earth. Our collection includes ornaments I made as a child, passed down from my parents prior to their passing.

Before the weekend starts, I continue my walk down memory lane, and time gets away from me, I want to give you a brief family update.

Kristen has decided to proceed with the recommended cardiac surgery and procedures. They would like to ablate the arrhythmia tracts and scar tissue from previous heart surgery, remove the broken pacemaker wires, place new wires and replace the pacemaker generator with a model that will better meet her needs. This is taking coordination of two surgical teams from two neighboring hospitals so the process of setting everything up is daunting. Kristen has ongoing GI symptoms which may be related to the cardiac arrhythmias or progression of disease. She is valiantly trying to determine her “new baseline” and how to live with it.

Annalies has recovered from significant jet lag and mitochondrial disease “brown out”. Her friends, Mary and Dave, welcomed their first child into the world yesterday. Annalies was thrilled to be one of the first to see and hold Holden. Annalies is trying to balance her desires to attend Christmas festivities and available energy. She will be starting PT soon in hopes of relieving increasing back pain.

Joshua completed his Associate Degree in Law Enforcement last week and has increased his hours at UPS with seasonal package processing. He is waiting to hear if he will be able to transfer to the UPS security division. Dawn and Josh are continuing to make plans for their wedding. This weekend they have promised to take Annalies and Kristen sledding.

Tom has an appointment with a dermatologist today. He has two lesions on his arm which need to be removed and biopsied. His primary care physician thought they are some form of skin cancer. I’m hoping this will be done in the office and reported quickly. They have doubled in size twice over the past 4-6 weeks, so I’m concerned. He’s had two visits to the urgent care center this week too. He was playing with the dogs and ended up with a small corneal scratch. It’s healing nicely and didn’t affect his vision. We’ve both relieved.

This recent weather and work stresses are flaring my asthma and lupus. I have to get lupus labs drawn this weekend. Trusting they will be “normal”. We don’t need any extra excitement in our lives right now. I’m thankful for Skittles and his assistance in preventing falls on the slippery surfaces. I’m also thankful for the food gifts we recently received. It was so nice to be able to prepare a dinner Thanksgiving day and to open the cabinets and see canned fruit, vegetables and side dishes. We’ve been blessed.

Thank you all for your prayers as we proceed with these tests or procedures. We are hoping that they find nothing abnormal. That would be unusual but then we know God is not a God of statistics. I am not sure if I will be able to update much during over the next few weeks. If I can, I certainly will do so. Have a wonderful weekend. If your house is anything like ours, you have a countdown going on how many days until Santa comes.

Back to my walk down memory lane..... Each year we hang on the tree an old, crumbling, ice cream cone-shaped ornament made from orange peel, cinnamon and other spices. This ornament was hand crafted by my Joshua almost 20 years ago. He carefully assembled the ornament using items from our kitchen. My daughter carefully took a bit out of it when she was three because it looked so good. Years later a puppy tasted a bit of it as well. Joshua is 24 years old this Christmas. He’ll be getting married next year and establishing his own family traditions with Dawn.

Our home and tree will soon be adorned with many precious memories, a reflection of our heritage. As we decorate the house, we talk about each of the events surrounding the decorations and ornaments. As we do this, we relive those times of joy and rich blessings given to us by the Father. We have decorations from family members that still live in the Netherlands and others from the countries representative of our children's heritage and birth families. We also have ornaments from many of the States we've visited for medical care, the girls' wish trips and from some of their pen pals.

However, the most precious ornaments we own were made by the hands of our children when they were young. These treasures are carefully placed on the branches of our tree. My mom knew the sentimental value of each homemade ornament. The most significant decoration in our home today is made of plastic that probably cost 50¢. It is wrapped in swaddling clothes. This is our baby Jesus who was lovingly placed in our window by Joshua when he was five or six. It is a vivid reminder of "the reason for the season". Something so many surrounding us seem to have forgotten.

The stories are many and each year we look forward to reliving these memories. As we decorate our home this year I'm aware of two things. Even though I don't personally make scrapbooks, I am a "scrapper". My treasures may not be paper or photographs, and definitely aren't conventional but they are memories that live on in our lives and hearts and come to life each year at Christmas time.

I also realized that baby Jesus is the most valuable treasure I have. His legacy is a legacy of love, forgiveness, and hope. Every year as I carefully place family memories on our tree, a baby who was born in a stable overwhelms me.

As we prepare our homes and hearts for CHRISTmas we remember that “Every good and perfect gift is from above, coming down from the Father of the heavenly lights”. ~ James 1:17 I will continue to trust that God is in control and I will try to develop a patient spirit toward things I can’t control. I will also remember God works in mysterious ways!

As we head into the Christmas season I hope we all take time to remember the reason for the season...and its really not about gifts and Santa. Thank you God for giving us the very best gift--Your Son, Jesus!

My Christmas wish: For all of you to enjoy every single moment of this time of year with your family and friends. Love each other dearly. Hug someone a little longer. Remember to enjoy each moments of happiness and treasure each joy. We love you and we’re very thankful for you!

Quote of the week: “As you practice counting your blessings, you will find that your faith is being suddenly revitalized.” ~ Robert Schuller

I can’t begin to share with you the generosity and peace our family has felt from people like you reading this now from all over the world! It is an amazing feeling to know so many people are praying for my family and me. WOW & THANK YOU FROM THE BOTTOM OF MY HEART! As you prepare for your personal holiday festivities I wish each of you a time full of hope and God’s grace. Thank you for visiting our Caringbridge page. Thank you for your continuous prayers, phone calls, cards, letters, emails, gifts and encouraging words. The Lord has blessed us with the best family and friends anywhere!

Continuing to FROG....

Joanne and Family

Tuesday, November 27, 2007 12:32 AM CST

HAPPY 18th BIRTHDAY, KRISTEN! WE LOVE YOU!

God made the world with its towering trees,
majestic mountains and restless seas,
then paused and said, "It needs one more thing."
Someone to laugh and dance and sing,
to walk in the woods and gather flowers,
to commune with nature in quiet hours.
So God made little girls
with laughing eyes and bouncing curls,
with joyful hearts, and beautiful smiles,
enchanting ways and feminine wiles.
And when He'd completed the task He'd begun,
he was pleased and proud of the job He'd done.
For the world when seen through a little girl's eyes
greatly resembles paradise.

...Author Unknown***

Dear Friends,

Oh – we may not be having a big party – but, we are TRULY celebrating this Wednesday!

Eighteen years ago on December 1st they placed the most beautiful baby girl in my arms. Kristen was born on the 28th. My sister-in-law called from the delivery room to let us know we would be receiving another daughter. I remember thinking my life had been in black and white and all of a sudden, after holding this 8 lb 15 oz wonder, the world was in color! Life as I knew it would never be the same. I would never watch the news the same, never hear a child crying and remain untouched, nothing would ever be the same. After all these years, I am grateful for the strange and wonderful things that accompany motherhood!

Before anyone else woke up this weekend, I sat and went through Kristen “baby book.” In it I found the picture from an when she was placed into our family, her birth announcement, her Certificate of Dedication from Moraine Valley Church, just all that kind of neat stuff – like pictures she has drawn, etc. Oh – how I loved looking through that book.

Then – my heart began to feel sick for Anne, Dawn, Hope, Heidi, Leslie,– oh, how sadly LONG the list is – the Moms whose hearts have been tortured because of the loss of their child. “Statistically speaking” (and how I HATE statistics now) – Kristen shouldn’t be celebrating her Birthday with us. When Tom and I were talking about it this weekend – before the kids work up – we both agreed that we feel like it is not so much that it is her Birthday – but, that we are fortunate (wow – that is an understatement) to be able to celebrate her just BEING HERE for this milestone.

Last night after Kristen was asleep, I took a deep breath next to her face to soak up the smell of her hair and I thanked GOD that Kristen was safe and warm with us. So many children out there don't have a warm bed or a family to care for them or love them as much as we love her. GOD is always reminding me that I have so much to be thankful for. Our precious Kristen is still with us, still surprising us with her determination, melting our hearts just by being who she is.

Kristen woke a little earlier this morning, with a big smile on her face. I look forward to each new morning the Lord gives to us, because I am able to walk into our “little girl's” room see a smile on her beautiful face. We are so blessed. I am so thankful to the Lord for all that HE has done for our family and for the time that HE has given us with Kristen. I can remember bringing her home after she was born and being so utterly scared, and upset. I was scared of the unknown, whether she would live or die. I was upset because our precious little girl would not live the kind of life that we had planned for her to live. Over time, the Lord took that fear and HE took that sadness out of my heart. HE replaced fear and sadness with strength to overcome what ever obstacles we may face, and with gladness and gratefulness in my heart for just allowing us to have her with us. Today, I am the mother of a beautiful young woman who God has used to teach me that ALL things are possible through HIM. Some may think I am crazy for feeling blessed to have the life that I do, and I suppose I can understand why they may think that. But my only response to that opinion would be that the only disabilities that we have are the ones that we put on ourselves. I could spend my life being angry and resentful, but where would that get me? For what so many people in this world are still searching for, I have found...the true meaning of unconditional love, first through my Lord and savior and then in our precious Kristen. All is well.

We serve a God who is not limited and asks us not to be shocked at the way He works. Running theme for me……Part of me just thinks “Come on God, hasn’t she had enough?” No medical update for now. We want to celebrate without thinking about the medical challenges and what the future holds.

I hope all is well with your families. Thank you for continuing to check on us and pray with us for the big healing miracles and the miracles that are only important to a 18 year old girl!

We have been entrusted with the care of three beautiful children. We have devoted our lives to parenting Joshua, Annalies, & Kristen, each so different from the other. God has asked us to guide them through this earthly journey. God has also entrusted us with healthcare management. We can’t help but believe that He expects big on His return.
Thank you! Thank you! For being on this long journey with us! We continue to covet your prayers!

*** A photo from Italy is now in the photo section. ***

Today, I rest on His shoulders, continuing to FROG...

Joanne and Family

Friday, November 16, 2007 12:08 AM CST

HAPPY THANKSGIVING 2007

How can I even begin to express the gratefulness of my heart? As I reflect on these past several years and remember the suffering, trauma and tears, I can’t help but see the flip side: peace, hope and love.

Psalm 28:7 ~ The LORD is my strength and my shield; my heart trusted in him, and I am helped: therefore my heart greatly rejoiceth; and with my song will I praise him.

We are thankful for God’s love, grace, and belief in us. We are thankful to you Lord for one more day with our children. Thank you for all the many sleepless nights we have and thank you for letting our daughters wake up time after time. Thank you for letting me hear them yell “Mom, Mom” in their sweet voices at 2, 3 and 5 in the morning cause they’re scared. Better yet, thank you for the hour long attempt each night to get them to sleep. Thank you for all the smiles they bring to our family and the people that love them. Thank you for the mischievousness they bestow and the crazy things they speak of. Thank you for the knowledge you have given them and us. Thank you for their energy and the way they loves life. Thank you for their strong personalities and their zeal to make others smile and laugh. Most of all thank you for giving us children that are a testimony of your mighty power. Thank you for our family and friends…each and every one. Thank you for their unconditional love and support through everything. Thank you for their attempts to put a smile on our faces during some of our hardest days and hours. Thank you for the allowing our friends to be with us, supporting us, and praying for us whenever one of the girls has gone for surgery or a procedure. You knew those long hours of waiting would be torture for us if we didn’t have people there we loved the most. Thank you for the circle of friends you have given us. Thank you God for giving us family, Christian brothers and sisters and friends to be such an inspiration to all of us and help us through our tough times! We received an anonymous gift check from someone at church this week for medical travel. God’s timing is perfect. We had $2.76 left in our travel fund with a trip back to Milwaukee on Wednesday. Thank you for allowing them to help keep us straight during our days of worry. Thank you for our four footed furry friends that help us immensely. Thank you for the doctors and nurses that we have crossed paths with. Thank you for our church and all the things they have done for us. Most of all thank you for putting the prayer warriors both in our church and community of family and friends that have spent countless hours praying for our daughters and our family. Thank you for the pastors we have and how humble they are. Thank you for allowing the pastors to preach the message we needed to hear before every storm we have entered. Most of all Lord, Thank you for all the Blessings you have given us. So many times we fail to say Thank you and just ask you for more.

I just want to thank you Lord. I don’t know any other way to start this update. We got back from Europe a few days ago and ohhhhhh what a blessing it was.

We are getting excited about Thanksgiving around here! We are going to have a quiet time with family (which I love)!

I am trying to keep my energies and my mind focused on Thanksgiving, and not the Wednesday before (Cardiology Clinic Visit). So here we are, in a few days we should discover if our world will change again. It would be nice to image a stretch of time with no heart stuff, but the reality is Kristen is symptomatic. Let me tell you, there is nothing like having a very symptomatic (heart racing, cold, clammy, diaphoretic, short of breath) child in a foreign country. We’re not the ones who will be deciding this factor in our lives. We don’t know what lies ahead, maybe another storm, maybe not, but we firmly believe whatever happens is God’s plan. At this point we wouldn’t want it any other way given all He had done for us. We’ve experienced so many miracles. I realize He doesn’t give us fear but we are human and as humans we worry and become afraid of the unknown. He also gave me a mother’s heart. Sometimes that heart is happy, sometimes it’s sad and sometimes it feels broken. Today and, knowing me, the next few days that heart is concerned about what the cardiology visit will bring. The devil knows where my weak spots are at. So, now you know, my weak spot is over my children. Please pray for the Lord’s will for Kristen’s heart, not ours. We are going in faith, waiting to learn what the Lord has in store. We trust Him to mend a broken heart one prayer at a time. Throughout this journey I’m reminded of Corrie ten Boom’s comment: “I have held many things in my hands, and I have lost them all; but whatever I have placed in God's hands, which I still possess.”

The CCHS International Conference was held in Sestri Levante, Italy. Set upon the Bay of the Fables and the Bay of Silence, Sestri Levante is the picturesque town where our adventure began. The town is a charming, little, old, authentic, coastal place, in which most buildings are colorfully painted, and are ornamented with the most artful trompe l’oeil. We walked out atop the 17th century seawall to get to the conference center, which was lined on the ocean side with huge rocks on which many people were relaxing, the weather being cloudy but somewhat warm. The harbor is small, but filled with little, colorfully painted wooden fishing boats. (In several, more that a few people were snoozing off last night’s excesses) We took in the panoramic views up and down the Ligurian coast, with the green hills rising all around. The town was quiet (this being their off-season), and we much enjoyed the twilight, seeing the twinkling lights coming on all down the coastline and up the hills.

The train ride to Florence (transferring trains in Pisa) was not as beautiful as I have dreamed/heard of. Tuscany, here we come.......Annalies and Kristen’s friend, Heather, traveled from Scotland to spend two days with us. This was by far the best part of the trip for them....We stayed at a renovated castle Bed and Breakfast while in Florence. Each room had original artwork on the walls and ceilings. Florence is like walking into an historical movie scene or a large museum. It was ruled for over three centuries by the powerful Medicis who created the city of cultural richness with their wealth and passion. First we headed out to the Academy of Arts Museum. On this brief visit, we saw many finished and unfinished sculptures produced by Michelangelo. It culminated with a viewing of his most famous sculpture, the David. Throughout my life, I've become very familiar with the image of the David but never really gained a true appreciation of it until that moment. Michelangelo is truly a master. From the Academy, we were walked to Florence's most famous structure the "Duomo." The Duomo, is the Italian word for dome. There is an enormous cathedral in the heart of Florence that took centuries to complete. It's called Santa Maria del Fiore (Saint Mary of the Flowers) and is incredibly detailed on its facade. The inside is much plainer with the exception of the intricately painted dome featuring scenes of the "Last Judgment." Our visit here was very brief so we were unable to go up to the cupola or even climb to the top of Giotto's famous Bell tower (attached to the cathedral). We did stop by the Uffizi as it has a pretty amazing collection of Renaissance art. Of course everyone flocks to see Botticelli's Birth of Venus, which of course was pretty surreal to be standing in front of the very original one. But there was so much more to be seen! Room after room, and gallery after gallery showcased some of the Medici's former private collection. Our next stop was Piazza Del Signoria, which turned out to be one of our favorite squares in Italy so far - with a fantastic grouping of sculptures including the Rape of the Sabine Women, Perseus and the Death of Medusa, and a copy of The David. One of the most amazing things we saw were the Medici Chapels, one of Michelangelo's first architectural projects. They were designed to hold the remains of the heads of the clan, the main person being Lorenzo the Magnificent the ruler of the Florentine Republic during the Italian Renaissance. He was the most accomplished of rulers. Unfortunately no photos allowed so you will just have to visit it yourselves! I can't adequately describe what it is like to be in prayer in a cathedral surrounded by others who are praying. I really wish we could have stayed here longer because it's so nice! I can see why Italians are so proud of their country. Not to mention the food is amazing.

I learned quite a bit at the conference and so did Kristen. She said it’s time she learned more about CCHS, how it affects you, how it can be treated and what to expect into adulthood. Many of the physicians there acknowledged that CCHS can present with other neurological disorders (and showed slides to demonstrate examples). I learned that the Chicago team had NOT fully sequenced Kristen’s genetics, just did basic screening. The research genetics team from Paris is going to ask if they can run a very detailed examination of the potential genes. It is now evident that many more of the children and young adults are having cardiac rate and rhythm issues similar to those Kristen is experiencing (and treatment is essential). Hypoxic insult appears to be the culprit in signs of developmental delay and poor academic performance. The suggestion is to maintain adequate oxygenation and generous PRN use when necessary. There was much discussion about Diaphragmatic Pacing. We still aren’t sure if that may be an option for Kristen or not. Kristen, herself, isn’t convinced she wants to pursue it as an option. Many presentations were a difficult reminder of where we have been and where we have yet to go.

I kind of want to be able to hear and process the cardiac related news, whether it’s good or bad, before the holidays. It seems that every holiday has had a cloud hanging over it regarding more surgery. So if that’s again what the Lord wants….so be it. We just want to have time to process the news and then celebrate the best we know how. If we do get news of no change and Lord willing everything has gotten better, WOW our holidays will be ever better. Just keep that in your prayers as the days go by. Nobody wants to see their child go through surgery time after time- However, we still need to have what God wants for Kristen’s life.

The preacher on the radio today reminded me of two things one is when Jesus said in Matthew11:28-30 “Come unto me, all ye that labour and are heavy laden, and I will give you rest. Take my yoke upon you and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls. For my yoke is easy, and my burden is light.” Though Through the physical part of the tribulation and the emotional challenges we’ve endured I can say this about God: It is so easy to go through things with him. He takes the other part of the yoke and moves all the weight of it for me. I know Tom and our children would agree that we can truly find rest for our souls in him! The second thing that it reminded me of was the song “Just a closer walk with thee” I am weak, but Thou art strong; Jesus, keep me from all wrong; I'll be satisfied as long as I walk, let me walk close to Thee. Just a closer walk with Thee, Grant it, Jesus, is my plea, Daily walking close to Thee, Let it be, dear Lord, let it be. If we would only desire a closer walk with God then everything in life would be all right.

Last, but certainly not least, I am so very thankful for every one of you out there praying, loving, supporting, calling, sending cards, emails, leaving notes on my guest book, and so on. What a wonderful, loving blessing you all are to us. Thank you for sharing this journey with us. I am blessed beyond belief and so thankful. We do trust in Him, and we are rejoicing in the joy He has given us, even in the valley. We are able to stay on this beautiful side of things when we keep our eyes on God – His power to heal, His desperate love for us, and His awesome presence that comforts.

Your prayers are seen and felt minute by minute. We see God’s handiwork in what seems to be the smallest things. Please pray for the rest in the midst of turmoil and uncertainty. You are all His instruments that are playing such a vital role in our lives regardless of your geographical location. Thank you all.

Quote of the day: You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, I have lived through this horror. I can take the next thing that comes along. . . Jim Ryun

Forever and Always count your blessings-

"Ciao" or "Arriverderci"!

Joanne and Family

Saturday, November 3, 2007 10:46 PM CDT

Dear Family and Friends,

It’s already November; my where does time fly to? Do you need some encouragement as I do? Lately, we've encountered many straws that are breaking the camels back!

James writing in Chapter 1:2-4 Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, that you may be perfect and complete, lacking in nothing. James 1:2-4 (NASB).

It seems this verse is referred to frequently in devotionals. It is also very real in our lives. Wonder why? As Christians we will experience trials that cause a heaviness of grief or sorrow, a pressure from without that will attempt to hold in our joy. These are our feelings - our common human emotions. Yet something - joy - should leap up or spring up from within us like a gush of water. So joy cannot be a feeling. It reminds me that I/we will always have trials and "seasons". Recently, between increasing demands at home and work, I find myself pouting, in search of smoother sailing. Isn't that something we're entitled to? Some smooth sailing would be nice. Many things haven't gone my way, or Tom's way lately. I'm stressed out (and so are the rest of us). There is good news. For each trial we go through, we become stronger individually and as a family. The view improves with each hilltop. Even if it's through gritted teeth, I'm trying to find some joy and happiness in our troubles and challenges.

Sometimes our teens may act out. They may be particularly crabby or unhelpful because they are picking up on our upsets and stress and it is causing them stress and making them crabby and they have no idea it is even happening. Throw some hormones in there and OH MY! :) Lately I have needed much encouragement and I have felt very alone and lonely. Last night as I cried into my pillow, Josh came over to me and I stopped and started talking to him. Within MOMENTS I felt better and he and I were smiling and talking to each other. When it came time to turn out the lights, we both felt content. Josh headed to his apartment knowing mom was feeling better. Those are moments we must cherish and never forget. Please, be encouraged by those children God blessed you with. They are yours for a reason. He chose YOU to raise them.

On Tuesday I'm leaving for a medical conference in Europe. As a point of clarification for those who aren't aware, my role at U of C requires a minimum of 30 percent travel. This travel can be anywhere clinical research activities of the department dictate. Given I have significantly inadequate home care support (especially over the weekends when we have NONE) I will be taking Annalies and Kristen with me. After hearing that they will be attending the conference as well, we were asked to plan a presentation for those attending on two topics: 1) the use of service dogs for children using ventilators and 2) a demonstration of Annalies and Kristen's ventilatory support systems. The methods we use are effective but quite atypical. Over time, more families are exploring noninvasive ventilatory support options, however, most physicians are not familiar with some of the options available. And, no we haven't packed yet, or charged the ventilator batteries, but we'll be fine. We're anticipating something beautiful, better then we can imagine. The girls adn I wish we were traveling for pleasure but that isn't in the plan for our family any time soon. Finances just don't allow it.

As some of our faithful readers know, our finances have been beyond stretched lately. Fortunately, most of the conference expenses will be reimbursed....but that takes time...approximately 8 weeks. We have to upfront all of the hotel and ground transportation costs. If I calculated correctly, provided NO unanticipated bills come in while we're away, we will just make those expenses. As soon as we get back, I will need to purchase all of the girls mitochondrial cocktail medications, make the car payment, get groceries, pay the phone, gas and water bills. Please join us in praying that these crucial expenses will be met. We're working with a Christian gentleman in Michigan to see if we can refinance our mortgage. We have an ARM that went up to over $1,500/month recently. When we add in travel to Milwaukee 2-4 times/month recently for extra clinic visits the reserve I'd put aside for medical and work related expenses disappeared.

Speaking of Milwaukee....Kristen's heart surgery is still not scheduled and what procedures she will need is still being determined. We now know that she has two fractured pacemaker wires with risk of perforation, an arrhythmia that is coming from her SA node (one of the most important in controlling heart rate and rhythm) and her current pacemaker is inadequate to meet the needs of her body. I asked last week if it is safe for her to travel and the response form each physician was yes. We haven't heard how the GI physician plans to manage her nausea and malabsorption, yet, either. We return to Milwaukee on the 21st. Hoping formal decisions will be make at that clinic visit. Given all of the delays, Kristen wants to wait with surgery until after her birthday on the 28th and we will respect her wishes.

Annalies has been struggling with fatigue and pain in her back and joints. I asked her if she still wanted to travel. I'm willing to cancel if it is best for them. Her response was, "We're going. If I stopped living because of what mitochondrial disease is doing to my body, I'd never do anything. I wouldn't get out of bed. I know the disease is worsening and my body is failing me more, but I want to experience God's world while I still can."

There is a difference between feeling discouraged and moving forward, or having your discouragement stop you in your tracks. As you know, success depends on your ability to overcome your discouragement and forge ahead. So, after discussions with Annalies, Kristen, Tom and several key physicians, we are going. We are moving forward. A friend of mine from NY will also be attending with her daughter. She has volunteered to help with Annalies and Kristen if my joints can't manage the cobblestone streets or extensive walking. The conference organizers have placed those of us from the US at the same hotel. They have also arranged the oxygen we'll need and ensured that we will be able to run the medical equipment.

I especially love these quotes:

Winston Churchill said, “We make a living by what we get. We make a life by what we give.”

“The finest gift you can give anyone is encouragement. Yet, almost no one gets the encouragement they need to grow to their full potential. If everyone received the encouragement they need to grow, the genius in most everyone would blossom and the world would produce abundance beyond the wildest dreams. We would have more than one Einstein, Edison, Schweitzer, Mother Theresa, Dr. Salk and other great minds in a century.”—Sidney Madwed

I know throughout my journaling on Caringbridge I try not to question why God chose us carry these “burdens,” as I know He longs to make our lives rich and full. It’s very easy to find "pockets of joy" when we observe creation in all its glory, but because my joy is anchored in God, it pours over into all aspects of my life!I know God is with us no matter what happens or where we are. I also know God knows what He is doing even when it doesn’t make sense to us! It can be a real challenge on some days, especially when the girls pain is great or their nausea and dizziness seem unending, but I also know from experience that tears and pain don’t magically go away just because we delight in the Lord! I know we are still going to have tough times, but God has a solid grip on the entire picture even when from our perspectives, things aren’t looking so great! God’s plan is a good one. I know I can learn deep, abiding joy by continuing to trust in His plan for my life and remember daily that God is in control.

I'm continuing to search for God’s will and the path He desires for me to take will always be at the forefront of each day. Thank you, Jesus for making those "pockets of joy" so easy for us to find!

“The Lord has done great things for us and we are glad.” Psalm 126:3

I want to say thank you to everyone who has continued to follow our family's journey, and a special thank you to my friends at Moraine and Angel Wings for always being there to pray for me and my family, to encourage us, but most of all for your continued love and friendship. It isn’t often you find people as special as you. People who go out of their way to make things nicer for others, people who take time to care. Your thoughtfulness is really appreciated… and so are you.

Rejoice Always. (1 Thessalonians 5:16)

Joanne and Family

Saturday, October 27, 2007 11:38 PM CDT

“Learning to Trust in Him Daily”

“Let all who take refuge in you be glad; let them ever sing for your joy. Spread your protection over them, that those who love your name may rejoice in you.” Psalm 5:11

Trust is a mere five lettered word, but along with it comes a lot of meanings and a ton of impact! No one ever said learning to trust is easy, but the Bible says it is a worthy goal. While it is desirable to learn to trust other people within appropriate limits, it is essential to learn to trust God. If you’ve ever stepped into an elevator, you’ve practiced trust! If you have eaten in a restaurant, you’ve practiced trust! There are just times when trust is relatively undemanding. Trust forces growth in a relationship, and it also brings you closer to God. God doesn’t work the way people do and it is essential to realize this before you can fully trust God. God is perfect, and cares for you and about your life. People will in general sometimes fail you, even in their earnest desire to prove they are trustworthy. Imagine the most trustworthy person you know---God is infinitely more trustworthy. You must know that you can count on God and His word.

We have had an extra large dose of this “trust test” recently! It seems every clinic visit with the interventional cardiologist something else unanticipated is detected. Basically, I had a choice. It is either turn it all over to God and trust Him fully in regards to Kristen and her heart related issues, or jump up and run like Forrest Gump and just keep going and going! If I chose to lean on the doctor’s words, we are still going to be scared, after all, the track record doesn’t look so good on paper when it came to being right in the past with her medical needs! I knew God knew exactly what it was going to take to “fix me” and that He also knew how to quiet my soul. I decided no matter what, I am going to trust God, and I am going to let my trust in Him tell me what to do through prayer. I don’t want to be praying alone for answers. I want everyone I can think of and then some to be on their knees and praying on our behalf to God! We are counting on the -prayers of many to get us through what I believe will one of the most difficult, painful and agonizing times of our lives. I am trying to tell our children and family that Kristen is going to be just fine and that the doctors are the best in the world and know exactly what she needs and can “fix her” so to speak! But inside, I am a mess. With each proposed surgery (we've heard three differing opinions from the same physician as to what needs to be done), I am beginning to wonder what will ultimately be decided and when! I want to believe the best for Kristen will be proposed, but from the previous experiences, it just isn't adding up to the perfect score (at least not yet)! How can I convince my family and friends she will be better than she currently is if I don't feel it?

Trusting God means accepting that God always knows what’s best for you. When you trust people, you hope that they have your best interests in mind. Sometimes they do and sometimes they don’t. The hard thing about trusting God is that His definition of what’s best for you may not always match what you think is best for you. Trust is a lot like falling! When you aren’t so sure about trusting others, you may fall with your hands out to catch yourself in case they aren’t there to do so, but when you fully trust someone, you will allow yourself to fall backwards in full confidence that whatever happens all will be okay! I want to fall knowing all would be okay regardless of what God’s definition of “okay” meant!

Often in the past I've had a peace that surpassed all understanding. I knew without a doubt God was with us, and He would be leading our team of physicians and every move they made. I knew when I walked into the clinic visit He was still going to be right there beside us! I can’t explain to you exactly what it felt like because there aren’t any words to describe such a confident feeling as I had all because I chose to trust God no matter what. I'm asking our family and friends from all over the country and even afar to pray for us and for our team of physicians. I know you will.

"The Lord has promised good to me, his word my hope secures. He will my shield and portion be, as long as life endures." This is a stanza that is at times missed out on the song Amazing Grace. How true it is to the life that we live. None of us are promised perfect health, a perfect life, or anything of that sort BUT his word is what gets us through those struggles and hard times. The Lord doesn’t want us to be angry at him when he does something totally out of the ordinary; he’s doing it for our good. Whether it’s to teach us a lesson or whether it's for him to get the glory he STILL has promised good to us. Through it all he has been there for us during our bad and sad times and he has yet to leave.

I assume that was on my heart because of Kristen's cardiology clinic visit yesterday. You can’t begin to imagine the frustrated tangle things are in right now....it just makes you think on things sometimes. Dr. J.R. reviewed the event recording strips and pacemaker interrogation findings with us (Tom, Kristen and me). It seems the arrhythmia is related to autonomic nervous system instability and inappropriate function of the SA node. This was totally unexpected. It also appears the the "good" ventricular lead wire of Kristen's cardiac pacemaker is fraying or fracturing. But, he's not completely certain he reprogrammed the pacer to capture additional information AGAIN. Not really what we wanted to hear as this visit was supposed to formalize plans for a surgical repair.…but that’s okay. We desire that the proposed procedure(s) is/are what Kristen ultimately needs to recover some of her cardiac function. Let me remind us all that Dr. T.R, her case managing physician, told us that this is going to get worse (unless God does something else) but hopefully her heart and GI tract would handle it until the issues can be sorted out. However, we sure know how Kristen likes to throw curve balls and be a little difficult sometimes. Overall we believe this is an unpredictable place for Kristen to be at heart wise. Far from perfect, but livable with major modifications . As Kristen said to us in the car when I was stressing about the delays… “Mom, enjoy this…this is just about as close to normal as I'm going to get for a while. ” So, I will enjoy this “normal” for the time being and try not stress to hard on the rest.

The second major stumbling block we encountered this week is financial. We've had significant unanticipated drains on our resources recently: MANY extra clinic visits out of State, tree roots blocking plumbing, unanticipated auto repairs, appliance repairs, lost food due to power outages, big increase in fuel and utility costs, increase in mortgage payment (ARM), a denial of several large medical bills by insurance and Medicaid and, as of last week denial of essential, expensive medications for both girls. We are appealing the denial but have to pay for all of those medications UPFRONT until a decision is made (and there is NO reimbursement for items we pay for during the "determination period". The last time this happened it took three months of submitting letters, supporting documentation, etc. before a favorable decision was reached. Adding to the delay, the physician who has the appropriate certification to write the justification letters is unavailable for at least another two weeks. Until this is resolved, our "base" expenses exceed all income by a minimum of $3,000/month. I have to trust that some way, some how our utility bills will be paid and we will be able to obtain essential groceries. Adding to the mix...I have work related travel in 1 1/2 weeks. Most of the expense will be covered and reimbursed. The juggling act will be covering the expenses until I obtain qualifying reimbursement. That process can take 8-12 weeks. We are definitely being stretched and trusting our needs will be met. And, we only have to go to the local stores for a vivid reminder that Christmas is just weeks away. God has NOT failed us. If anyone knows of any grants that might be able to assist us or is willing to undertake fund raising efforts on our behalf, please let me know as quickly as possible. We do have a benefit account set up at our local Chase bank but that fund currently has a balance of $78. Not enough to cover one of the medications or utility bills.

I have learned to fall backward in full confidence that God will be there to catch me when I fall~ it’s a wonderful feeling!

“Our hearts shall rejoice in Him, because we have trusted in His holy name.”
Psalm 33:21

Thoughts for the day:
"What you have means nothing, who is in your life means everything."

You can’t change the past, but you can ruin the present by worrying over the future!!

We want to thank all of you for continuing to check in on us. Your support means the world to us. Some of you follow our journey through a prayer support communication. Others of you came to us from Asher’s site (www.asherandjacobsfriends.com). I can’t tell you how wonderful this site is for so many & Aunt Laura, a seminary student, is just amazing for running it. She is responsible for so many families being lifted in prayer. Thank you for all you do, Aunt Laura & thank all of YOU for continuing to follow Annalies and Kristen's journey.

Continuing to FROG,

Joanne and Family

Friday, October 19, 2007 11:41 PM CDT

While I should be completing a grant application for work this evening…I am finding ways to avoid it and this seemed like the perfect place to start! That and I am truly trying to be better about updating…

I've been thinking about this devotional I recently received from Dailyword.com

Courage

I am a courageous and strong creation of God.
I may wonder, if life never offered challenges, how would I ever discover the depth of my courage and skills?
In truth, I have all that I need to meet any circumstance. I have the ability to respond to life's situations with poise, grace, and wise action. And I do this in all matters by including prayer as my daily practice.
As I still my body and mind in quiet times of contemplation, I breathe gently and easily. I remember the truth about me, I am divine in nature. Whole in mind and body, I have all the spiritual faculties needed to triumph in any situation.
Taking a full, deep breath, I return my attention to my surroundings. I am a courageous and strong creation of God.
"David said further to his son Solomon, 'Be strong and of good courage, and act. Do not be afraid or dismayed; for the Lord God, my God, is with you.'"--1 Chronicles 28:20

Many times throughout the course of our lives situations are placed in front of us that are difficult to deal with. One either takes the challenge and turns the bad situation into something better or sits back and lets it happen.

Mitochondrial disease did not define who Annalies and Kristen are and always will be to those that love them. They teach us what strength and courage and dignity are all about, rarely do they ever complain throughout their entire battle with the mito beast.....They showed us all that we have nothing to complain about, nothing to whine about, and what it takes to just live day to day....

Like a normal mother, it crosses my mind occasionally, what is in our future as our daughters fight this disease? Sometimes, I worry. I had a mother say to me today, "How do you deal with all of this? How do you do it?" If God showed you this whole journey all at one time, you may not be able to shoulder it, but He gives us the power to get through it one day at a time. On one particular day, I may need just enough strength to hold one of the girls as she screams getting some type of treatment done. On another day, I may need the strength to wipe her face with a cold rag and hold her for hour upon hour. On another day, I may need just enough strength not to panic, or get hysterical. But days come and go, and here we are at this point, in a much better place than before. God has given me the strength, as He promised. As I need it, He provides it. I have faith that we will see their health improve. Today, they feel like a normal young adults. Today, I feel at peace and my heart does not hurt. That's how I do it.

God really blessed me with an enormous amount of peace during Kristen's last interventional cardiology visit, even when I found out the enormous surprise that we are dealing with four (4) different issues affecting her heart. I could really feel God with me. The only time I felt a distinct tremble go with me was when the doctor said at the end of the visit, "Remember, we don't know until we get the results from the all of the studies if the news is going to be devastating and how extensive the surgery she requires will be". I would have preferred if he would have not used the word "devastating." Friday the 26th, when Kristen returns for a follow up appointment, we will learn exactly how "devastating" the issues are and how extensive the proposed surgery/procedures will be.

Annalies is falling more. Her vision is worsening. She recognizes the changes and realizes the potential for blindness. Yet, knowing the risk of falling and injury, she chose to live life and experience the "haunted woods" fund raiser for a local nature center. She did fall, but she had lots of fun. I'm not sure who had more courage this evening. Annalies confronting her fears or Tom and I in allowing her to go. She couldn't take Stitch for balance as the woods were dark and have lots of small furry critters to stimulate his prey drive. She did have her PA at her side, but the PA couldn't anticipate the change in terrain or the speed with which the "guide" led the way.

Last Spring I had one of the van windows shot out while driving home from work. Tuesday, one of the other managers at work had three of her SUV windows shot out on her way home. We both drive through the part of Chicago with the highest incidence of gang violence and street gun wars. The week before multiple vehicles parked in the garage at work sustained damage and/or robbery. Additionally an individual died in the garage due to a shooting. I'm finding it is taking lots of prayer and courage to drive through these areas twice each day and to walk into the garage each afternoon. Another day this week, a string of difficult things happened to me one after another - simple tasks that multiplied, eating up hours and hours. It was only a portion of one day, but it was a pinhole glimpse into the challenges you may, also, face when dealing with doctors, insurance companies and sudden turns for the worse. Life can be extraordinarily challenging.

As many of our faithful readers know, for multiple reasons, I have been exploring alternative employment opportunities for almost a year. I received a call on Wednesday asking me to consider another opportunity. After lots of prayer and consideration, I found the courage to say, "Thank you, but the timing isn't right for my family or me right now." I can't change jobs knowing Kristen will be having surgery within the next few weeks. Kristen will need her mom.

With this surgery, Kristen will need blood and blood products. There is a major blood shortage in the Midwest. The last time she had heart surgery we were asked seek donors to replace each pint of blood she received 2 for 1. I don't know what the request will be this time around, but I'm praying we will have willing donors to meet the need. How do you send your child into surgery not knowing if the blood bank will have the blood products that child requires? Courage.

So many children and adults we know are currently confronting major health challenges, personal crisis of some type or significant issues within their families. These individuals and families alway inspire me. I cannot imagine having to overcome their difficulties. It is nothing short of miraculous. I don't know why these things happen, these challenges people face, but I am awed that they persevere. How easy it would be to give up. But by continuing onward, they inspire others.

I don't have any answers. Instead, I leave you with three thoughts:
Once I knew the depth where no hope was and darkness lay on the face of all things. Then love came and set my soul free. Once I fretted and beat myself against the wall that shut me in... But a little word from the fingers of another fell into my hands that clutched at emptiness, and my heart leaped up with the rapture of living. I do not know the meaning of the darkness, but I have learned the overcoming of it. (Helen Keller)

Hard things are put in our way, not to stop us, but to call out our courage and strength. ~~anonymous~~

Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow". (Maryanne Radmacher)

Praises: 1) Safety when traveling to and from work during the periods of open gang warfare. 2) Finding the strength to go on with everyday life can be very challenging in the wake of an illness. 3) The humor Annalies and Kristen have found in the not-so-funny world of serious illness. Even though it may seem like a disrespectful thing to those who are suffering, situational humor which inevitably arises during stressful times seems to be very appropriate. Laughter is a powerful tool in powerless situations. It gives hope and an upper hand to them as they are experiencing both physical and mental/cognitive loss, as well as to us, the caregivers who cannot change their loss. 4) Great strength, continuing faith and courage as demonstrated by our children, wonderful support in prayer and deed from very caring, talented individuals.

Prayer requests: 1) Safety in travel to clinic visits and work. 2) Economical lodging for one night between clinic visits. 3) That Dr. R has adequate information from the event recordings and pacer interrogation to make definitive plans for Kristen's surgery. 4) Receipt of specific information from Hematology and the Blood Center so an appeal can be made for donations of blood on Kristen's behalf. 5) That our families financial needs be met (more unanticipated, large medical bills have been rolling in) and we have the ability to make formal decisions regards the need for potential for fund raising efforts. Assistance to undertake this type of effort. 5) The each member of our family maintains the courage to face the challenges each day holds for us.

In Faith, Believing,

Joanne and Family

Tuesday, October 16, 2007 7:42 PM CDT

Webster defines faith as: faith (fâth) noun
*Confident belief in the truth, value, or trustworthiness of a person, idea, or thing.
*Belief that does not rest on logical proof or material evidence.
*Loyalty to a person or thing; allegiance:
*The theological virtue defined as secure belief in God and a trusting acceptance of God's will.
*The body of dogma of a religion: A set of principles or beliefs.

Looking at the calendar I realize often in late October our family has been dealt many unanticipated blows. Annalies and Kristen received an official diagnosis of mitochondrial disease late in October 9 years ago. Years before that, Tom and I experienced the loss of the baby who would have been our first son. This year marks the second October since Kristen was born when we have been told her heart related issues require rather immediate attention (followed by unanticipated delays in getting those issues attended to). October also marks the month, 13 years ago, when my mom, brother and I were told my dad's lymphoma had returned and there were no other treatment option, to prepare for his passing.

Growing up in church I was taught about faith at a very young age...how we must come to His throne like little children. Then came the teen years, learning about faith and how it comes by hearing. While in high school I listened to great men of God, reminding us that faith is the substance of things hoped for...even when it cannot be seen. Such grand beliefs...taken for granted even by a Christian like myself...who of course, thought she had "arrived."

Tom and I are beginning another year of caring for our daughters as they experience progressively more signs and symptoms of mitochondrial disease related organ failure. With the trials we've experienced I (and Tom) struggle to grasp the full meaning of faith and its impact on our daily lives. It is difficult even know how to state what God has been teaching us, speaking to our hearts-since the girls were diagnosed years ago...Faith is often seen as such a grand, mighty, almost unattainable part of our Christian walk. Yet, Jesus spoke of a faith so small...the size of a mustard seed. But that tiny amount of faith, when nurtured by the Master, can grow enough to move the mountains in our lives.

Often in these past nine years I have felt like David in Psalms...my soul is sore within me, I wish that I had wings to fly away. Away from the hurt, the constant dull ache. As David wrote and poured out his emotions to God he left nothing out. Every part of his being-mind and soul-was exposed to God. Many chapters begin with his spiritual, physical, and emotional turmoil...yet, at the end of each chapter? A verse or two of praise.
Praise to God. A reminder to his Lord that even though he was walking in shadows...there cannot be shadow with out Light. A reminder to us that God is still in control, and still so close...close enough to shed His light on our circumstances.

Yes faith can move mountains. Abraham laid his only son, Isaac, on an altar in faith...knowing that God had promised him a future, and that God would provide the appropriate sacrifice. By faith Moses stepped out to lead the Israelites...knowing where he came from, what he had done, and that God would use him in a mighty way. By faith David waited in a cave, many times having the opportunity to kill the king who hunted him...yet knowing that God's timing is perfect and He would provide a way out. (Hebrews 11 for more Old Testament examples). Joseph accepted Mary-by faith-trusting the angel's word that she would be the one to bare the Christ child-a virgin birth. Peter stepped out on the rolling sea-by faith, knowing that if he faltered, stumbled (and he did) Jesus only had to reach out his hand and rescue him. The thief on the cross, by faith, asked Jesus to remember him in Paradise, trusting that Jesus was God's only begotten Son.

In our everyday life we tend to look for huge "signs" of faith. But we forget that God often works His wonders in small things. Little is much when our God is in it. For our family our faith seems so like that mustard seed...and to us-the mountains are as deep and wide as the Grand Canyon. Faith for me is getting up each morning and putting one foot in front of the other. Faith is trusting that even though we loved and accepted our children exactly the way God made them-several of them are now safe and loved, resting safe in His arms.

Faith is staying with the person you married, even when you don't understand each other sometimes (I don't think Tom prayed for patience before he met me?...)-because of your love and loyalty to each other...knowing that God gave you this person to be your helpmeet through the difficult times. Faith is letting my only children take steps toward independence-knowing that God will keep them safe, and that He will put people in her life as they grows to teach them and love them.

Faith is caring for Annalies and Kristen every day...and being happy to do it. Faith is knowing that God made them perfect the way He wanted them to be-and not focusing on all the things they can't and won't do.
For us, right now, faith is trusting that God will love us and keep us safe-even when we question Him, through our anger and tears. And at some point, God will call them home too. And our faith will be that heart knowledge that He is in control-even when we can't seem to wrap our minds around the grief and pain. Faith isn't always just about how we live our lives for Him...sometimes faith is just about the fact...that we try to live for Him at all.

What is faith to you? While our mountain may seem huge to those of you who love us and pray for us-your mountain looms large up ahead. A sick family member, a child with unexplained illness, death of a cherished friend, the loss of a job, a devastating diagnosis, a huge financial burden...mountains on your horizon. Many of these "mountains" are real in our home each and every day.
But we are reminded-that Jeus also said that we are to walk by faith...not by sight (2Corinthians 5).
"Now faith is the substance of things hoped for, the evidence of things not seen." Hebrews 11:1
We know personally how dark the night can become, how heavy the heart can feel-but joy always comes in the morning.
There can be no shadow without light. God is still there gently helping, shaping when we allow Him.

"Faith isn't the ability to believe long and far into the misty future...it is simply taking God at His Word and taking the next step."
Joni Eareckson Tada

Prayer requests: Safe travel to Milwaukee on the 25th. Locating a reasonably priced hotel for one night (arriving too late to get a room at Kathy's House). Kristen will be re-evaluated by the interventional cardiologist/cardiac surgeon on the 26th. We are trusting there will be no additional delays in scheduling her heart procedure (she is quite symptomatic and it's affecting her quality of life dramatically) and that the "adult team" will follow through with the request of critical care and use the support staff at Children's Hospital and admit her directly to Children's ICU for recovery.

Taking the next step daily...by His grace-

Thursday, October 4, 2007 12:30 AM CDT

Update: Monday October 8th at 10:00

Kristen spent most of the day yesterday in the ER at CHW. The nausea, which her critical care attending believes is coming from the cardiac arrhythmia, is causing significant problems. Kristen needed two doses of IV medication and 2 liters of fluids to help restore her natural balance. Fortunately, the ER doc understands mitochondrial disease and the problems dehydration causes metabolically. We're hoping the physician covering for Dr. R will prescribe different medication for nausea as we'd like to prevent another ER visit. I will be very happy when her cardiac issues are finally addressed and treated.

“Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him.”
James 1:12

Where to start? What to say? I know you all have been anxiously awaiting an update of God’s goodness yesterday, and I apologize that I haven’t updated sooner. We had an appointment that lasted 4 hours, and haven’t stopped since! More about that later…but first, the important stuff! Praise the Lord-His mercy endureth forever! God is SO good! After a very long day, we arrived safely home around 8:30 last night. Sorry that this is so jumbled today. I know that if I tell you (truthfully) that this is how it’s all in my mind, you’d understand completely!

The clinic visit with Dr. Roth was enlightening. It was clear that he had discussed her case with Dr. Earing and reviewed the records that were available to him. He described Kristen’s complex or multifaceted cardiac issues as coming from FOUR different mechanisms: 1) the congenital heart defects she was born with that have been surgically corrected. 2) The primary bradycardia and significant dysautonomia associated with Congenital Central Hypoventilation Syndrome. 3) The cardiac arrhythmias and risk of heart failure related to mitochondrial disease and the lack of energy for the cells within the heart muscle. 4) The impact of having a broken pacemaker wire and older generation pacemaker which, when combined, can’t help control the abnormal rhythm Kristen has been experiencing. He firmly believes that the issues which can be treated or “fixed” need to be. Before that can be accomplished he needs additional information. So, he reprogrammed her current pacemaker to capture more information from the atrium and changed event recorders hoping to learn more about how and where the arrhythmia is tracking (or how many tracks there are). He will see Kristen again late in October and plan to do the necessary repair, replacement, procedures in November. His thought is that he will attempt to ablate the arrhythmia tracks, reduce the scar tissue from previous surgery which is contributing to the problem, replace the broken pacemaker wire(s) and replace the pacemaker with a model that has the ability to help control this type of rhythm disturbance. His impression is that the arrhythmia is atrial fibrillation. He will also look closely at the cardiac medication Kristen is taking (as well as the ones she has previously taken). He indicated that the specialists are now appreciating a delicate balance between benefit and potential risk in individuals with mitochondrial disease and CCHS. The procedure proposed will take considerable time and have a pretty long recovery time. Clearly, it will take significant cooperation between the team at Children’s, anesthesia and him. For the very best outcome, we firmly believe Kristen will need to recover at Children’s vs the adult hospital.

I was reminded last night, yet again, of God’s provision, grace, faithfulness and love to His children. There is so much on my heart today (or actually really early this morning when I couldn't sleep) so I hope you’ll indulge me! Thanks for always “listening”. We always fail, we’re human. Yes, it’s disappointing-to us, and to God. But I have to believe, I know in my heart, I’ve been taught all my life that God rewards our faithfulness. He is pleased when we acknowledge His graciousness. He expects nothing less of us in return for His provisions for us. So, if you don’t know us well enough by now, let me remind you that ALL PRAISE AND GLORY AND HONOR AND THANKFULNESS FOR KRISTEN’S LIFE (and Annalies’) BELONGS TO OUR LORD. HE ALONE IS WORTHY OF EVERYTHING WE HAVE TO GIVE. WITH OUR LAST BREATH WE WILL STRIVE TO PRAISE HIM FOR HIS GOODNESS TO US.
I know now that, if for no other reason, God’s timing for this clinic visit---going from pediatric to adult interventional cardiology---was so that He could give us our theme song for this leg of our journey…just at the right time, when we needed it. And so, I want to share with you our anthem for this current heart related adventure.
I’ve CAPITALIZED the lines that meant so much to us as we heard them for the yesterday.
The Potter Knows the Clay
(M. Henry & A Lapointe)
I know you’re going through the fire
It’s getting hard to stand the heat
But even harder is the wondering
Is God’s hand still on me
It’s lonely in the flames
When you’re counting days of pain
Friend, I just came through that fire
Not too very long ago
And looking back I can see why
And that my God was in control
But on the hottest days I’d cry
Oh Lord, isn’t it ‘bout time
BUT THE POTTER KNOWS THE CLAY
HOW MUCH PRESSURE IT CAN TAKE
HOW MANY TIMES AROUND THE WHEEL
TIL THERE’S SUBMISSION TO HIS WILL
HE’S PLANNED A BEAUTIFUL DESIGN
BUT IT’LL TAKE SOME FIRE AND TIME
IT’S GONNA BE OKAY
‘CAUSE THE POTTER KNOWS THE CLAY

Isn’t that such a blessing? He knows exactly what we need, when we need it. He knows Kristen better than anyone. After all, He did lovingly knit her together in His very image. Of course He’s planned a beautiful design—and we know that He will direct the physicians’ hands to mold the clay as ONLY GOD SEES FIT.

We desire your prayers for us, as parents and as a family, as this is all becoming very real. We fully believe we are in God’s perfect will---we have complete peace about proceeding. But we are also human, and will soon be turning our daughter’s world upside-down. We are looking to the future-knowing that we are doing the best for her (she is in complete agreement). But don’t you think that even Mary’s heart grieved? {I’ve said it before, in no way do I compare myself to Mary, except that we were both mothers, and I can completely understand the scripture that says ‘she kept all these things and pondered them in her heart’.} Mary, of all people, knew that Jesus was the Messiah and that He would save the world. But that didn’t make it any easier to see Him hanging on a cross in pain. She knew that the pain was worth it in the end. But in that moment, in the present, her heart was broken.

We are content in knowing that He is carrying us and that we are safely in His arms.

We stand amazed---we’ve prayed for supernatural peace for Kristen and us, and we’ve seen just that. God is awesome---His grace and sustaining power is overwhelming.
Continued prayer requests:
-above all, and always, God’s Perfect Will
-continued comfort for Kristen—that rest and travel and play will come easy and that we and God can continue to be a sense of peace for her
-traveling grace throughout the next two months
-wisdom, as we are given some role in the decision making
We leave you today grateful beyond words to a God of comfort, and thankful for a wall of prayer by each of you…you mean so much to us.

Every card, note and guestbook entry has been amazing, I thank each and every one of you for that. These messages truly helps us through moments like this, we thank you for that. Keep leaving us messages through good times and bad, it inspires us and gives us the strength to keep going. We always knew our family was cared for was cared about, and this recent jog in our journey is amazing!

Sunday, September 30, 2007 3:18 PM CDT

Dear Family and Friends,

First of all, I must apologize for the lack in updates. Things have been kinda crazy around here, thus I just haven't had the time or energy to sit down to update. As we say good bye to September and hello to October we will also be saying hello to a lot of activity: clinic appointments, research recertification for work, preparation for the CCHS Conference and, for Josh and Dawn, finalizing many of their wedding plans (so far in advance).

Louie Giglio's recent devotional message was: How Great Is Our God.

This man used the backdrop of our awesome universe to demonstrate God's infinite size and power. He spoke of the size of our earth in relation to our sun and how we could fit multiple, multiple earths inside the sun. But then he showed us a picture of the largest star, Canis Major, (the dog star) we have yet discovered, (thanks to huble) and how we could fit millions of earths inside of it!! SO WHAT! What does this have to do with Jenna's Journey? For me, everything.

If you have read many of my journals over the last year, it would be obvious that not only do I WANT to know my GOD is big enough to handle my puny little life and all its trials, but I HAVE to know. Gods word promises us that if we take the time to look for Him, He will be found. I have strained my body and soul since Annalies and Kristen were diagnosed to see HIM in some way, every day. HE has not let us down.

Kristen is slowly recovering from her recent abdominal surgery right now. I still don't have a any of answers to pass along from the surgical pathology, bone marrow biopsy or how the physicians plan to manage the malnutrition or malabsorption. We go to Milwaukee to meet the recommended Interventional Cardiologist next Wednesday. Hopefully, he will agree with the plan to ablate the abnormal heart rhythm quickly. Kristen's Critical Care attending physician is hoping some of her GI distress is actually referred from the cardiac abnormalities, ie heart problems showing themselves as gastrointestinal distress.

We are trying to schedule PT for Annalies in hopes that will help relieve increasing back pain. If not, orthopedics will add a brace to her treatment regimen. She is also falling more again. The neurologist suspects the increase is related to disease progression affecting her vision and depth perception.

I have an appointment with my rheumatologist tomorrow. The crisp, damp fall weather is negatively affecting my joints. I'm hoping he will have some suggestions toward improving that situation. I know the added stress related to Kristen's worsening medical issues isn't helping as lupus tends to flare when stress levels are high. Paula, the public access evaluator from ECAD flew into Chicago yesterday to complete the annual certification for several clients. I'm delighted that Skittles and I passed the annual review and, together, we make a great team. Paula said it was obvious that "my boy" adores me. Skittles makes doing daily activities so much easier. I can't imagine life without him. Annalies and Kristen say the same in relation to Stitches and Brooklyn. It's amazing what a difference our golden, four footed friends make.

Tom's mom returned to her home with a live in caretaker. Earlier in the week Tom and his brothers worked to ensure the house would be safe for her. That was quite an undertaking. Hope she is accepting of their organizational skills. Ursula worked to complete the initial cleaning in preparation for her return. We have to trust this is the best alternative care for her. Time will tell.

There have been many times during our journey that we knew that only Gods loving hand could possibly hold us together. How right we were!

I cannot begin to do the message justice. Mr. Giglio's message concluded by not only telling us how all things in this universe are held perfectly together by Gods hand, he showed us! He ended by first telling us about a only recently photographed substance called laminin. In a nutshell, it is the foundational glue that literally holds our, and all lifeforms cells, together. How nothing that is made, if it is to be made, can exist without this tiny substance. And then he showed it to us. WOW!! That is all must of us could say. I have added a few photos/diagrams of this glue to the site. I think you will agree, God not only is a great God, HE has quite a sense of humor too. Coincidence, maybe. You decide.

By the word of the Lord the heavens were made, And by the breath of HIS mouth all their host. Psalm 33:6

He (Jesus) is the image of the invisible God, the firstborn of all creation. For by HIM all things were created, both in the heavens and on earth, visible and invisible, whether thrones or dominions or rulers or authorities--all things have been created through HIM and for HIM. HE is before all things, and in HIM all things hold together. Colosians 1:15-17.

Quote of the week: We have a God who delights in impossibilities. ~ Andrew Murray

We thank you for your continued prayers for our family. We pray for wisdom while speaking with the new cardiology team and for guidance and peace as we make further decisions. We know that God tells us not to be anxious about anything, but in everything by prayer and petition with thanksgiving to make our requests to God. And the peace of God which transcends all understanding will guard our hearts and our minds in Christ Jesus (Phil. 4:6-7). We know that as we seek the Lord that He will give us His peace and will guide us into the correct decision. Thanks to all of our NEW visitors, and all of your notes, calls and GB entries! It is always nice to hear from all of our friends! Hope everyone has a terrific weekend!!

In Faith Believing,

Joanne and Family

Sunday, September 16, 2007 6:10 PM CDT

"I am overcome with joy because of your unfailing love, for you have seen my troubles, and you care about the anguish of my soul." Psalm 31:7

First of all, thanks so much to all of you for your outpouring of prayer, love and support for us throughout the past week. Kristen has had some rough days and nights. She's a little more irritable, and still not tolerating her normal activities very well. Since surgery she's sleeping much more throughout the day and night, and she just isn't herself. It's so hard to see her like this. I just wish I could take away all her discomfort. I'm trying to stay positive, but sometimes I just want to scream and yell and throw things and ask God WHY?!?! Why does she have to go through this? Why do we? Sometimes I wonder if I'm being too open with my thoughts... Some of you are my dear friends, and some of you I've never even met. Yet one thing that I know for sure is that in your own way, you care about us and you lift us up in your prayers. Thank you, you can't imagine how much that means. The reality is that we our precious children are confronting disease progression, and I think I'm ok with that, because I know that they will be in a place where there is no more suffering. It’s totally possible that they will do great and thrive, but it's also possible that they may not. Kristen says thank you to everyone who sent her cards, notes and surprise packages. Those acts of kindness definitely helped lift her spirits.

Honestly, we still DON'T have all of the final results, I can say, based on what we do know, that there is good news and bad news this time around. The good news is that we are all home. As we were sitting down with the multiple physicians, individually, the Lord reminded us to anchor ourselves in Him and to put our confidence in Him. And, as a result, the Lord provided us with His peace throughout the meetings. Kristen is very disappointed. Even having the surgeons working together, we are left with some difference in opinion. The lesion was NOT removed. The general surgeon feels it is a pyloric duplication (a congenital defect). The GI doc still believes it is pancreatic rest but as long as the area doesn’t ulcerate, it is safe to leave it. They both agreed that removing the lesion would significantly compromise the remaining peristalsis that Kristen has to move food from her stomach to the intestines. That would cause another set of problems which are not desired. We haven’t received the official results of the bone marrow biopsy. The medical student said the preliminary findings seem to indicate a problem with iron stores and/or iron metabolism, i.e. it is available in the blood but can’t get to the marrow where it is needed. The neurologist strongly believes the neurological issues Kristen has been experiencing are directly related to malnutrition and malabsorption of food. She is pushing hard for some type of treatment to be decided and initiated. Kristen’s critical care doc said the cardiac arrhythmia has worsened considerably and he wants the cardiologist to arrange the procedure to attempt to correct it ASAP. He also believes that the cardiac arrhythmia may be contributing to the GI signs and symptoms. She has tried and failed two different medical therapies. Hopefully everything will be coordinated before September 28th. If not, it will be after October 10th. Staff from two hospitals have to work together which is making scheduling interesting. Dr. Rice has to be in the operating room to manage some aspects of her care during the procedure and he will be away from Milwaukee for a couple of weeks. Despite three days of treatment with medication to prevent bleeding, Kristen IS bleeding. We are trying to control this at home so we don’t have to return to Milwaukee quickly. Hematology said it will take at least another 1-2 weeks before all of the testing is complete. The best news is that the malignancy (leukemia and pancreatic cancer) that was suspected is not present.

On to Annalies’ recent clinic visits. Her cardiology appointment went well..no changes..no surprises. The neurology appointment was interesting. Dr. P verified that we are seeing progression of disease. She is adjusting medication and oxygen in hopes of reducing migraine headaches and Tourette’s tics. She also contacted a physician that has done research into treatment of dysautonomia to see if we can try treatment specific to this situation. Annalies hopes the response will be positive. Dr. P observed additional retinal pigment in her left eye and suspects this affects depth perception which would account for the increasing falls. We also expect to hear that her sleep study is more abnormal. Annalies had an MSLT (night and day study). She feel asleep during each nap. Sleep is essential for everyone but it have to be balanced and her’s isn’t. Annalies was happy Tom took her home late Thursday while I remained in Milwaukee with Kristen. Annalies was glad to have Larissa available to work as her PA and provide to provide companionship while watching movies and completing book reviews.

Josh has started his fall quarter at school. He’s anxious to finish his studies and obtain full time employment. Dawn and Josh are hoping to exchange their marriage vows on Father’s Day, June 15th 2008. It was fun coming home to hear about the dresses, garden ceremony setting and the other things they are considering.

We continue to be thankful to God for Kristen and Annalies’ progress, and also for the prayers of the saints far and wide for God’s hand to be upon them, our family, and the health care professionals involved in treating our daughters. We cannot describe to you what it means to have the support of so many people, literally across the country, who are lifting up our family in prayer. We are humbled and cry tears of joy at the knowledge of the army of people interceding on our behalf. God is using you to remind us that he is our “Maker, Keeper and Lover,” and He continues to reveal Himself to us as “everything that is good and comfortable for us: He is our clothing that for love wraps us, clasps us, and all encloses us for tender love, that He may never leave us; being to us all things that are good.” Only time will tell what His plan for our family is. Until that time, we will continue to thank him for each day that we have with each other. Our daughters teach us so much about living life to the fullest no matter what you are facing. Every time we are faced with another setback or some tough news, we feel God’s love surrounding us.

Thank you, from the depths of our hearts, for the role you are playing in this process. Just a reminder…hug your kids and tell them you love them, each and every day!!!

Until next time...continuing to froG,

Joanne and Family

Saturday, September 8, 2007 7:46 PM CDT

“I was once told this: Faith is the eye that can SEE the invisible, Faith is the ear that can HEAR what others do not hear, Faith is the hand that can TOUCH the untouchable.”
I may not be able to see very well, my glasses get thicker every year. I may not be able to hear very well, I even put the captions on the tv at night so I don't have to blast it and wake up the neighbors. And my joints, they tend to get sore and tired sooner that they used to but with FAITH we are invincible”

Faith had guided us through a lot of trials and tribulation and it has guided us to what we are here for today. I used to have a plaque in our hallway which read FAITH WILL SEE US THROUGH… According to the Bible “Faith is the assurance of things hoped for, the conviction of things not seen.” Hebrews 11:1

What more do we need than that?

We spent several days in Milwaukee for clinic visits last week. I could just snuggle down and rest – physically, emotionally, and mentally. Annalies awaits sleep study results. Given her comments I suspect the report will be far from ideal. Dermatology is trying yet another treatment for skin related issues. Cardiology was pleased with her echo and EKG. Now, on to Kristen. Kristen is scheduled for surgery on the 11th. Several members of the medical community (that I respect) are concerned about how Kristen will do overall as she is having significant issues related to her heart and bleeding. I discussed these with her case managing physician and given the concerns with both the lesion in her stomach and her bone marrow failure, we need to proceed. I was really shocked when she was evaluated by her cardiologist. The arrhythmia that has been plaguing her for almost a year has NOT responded to treatment and seems worse in some ways. He discussed this with her case managing physician and another significant decision was made. The doctors want to get her scheduled for another invasive procedure/surgery, if at all possible, within the next 2-3 weeks. He said it may take a miracle to get this arranged. They want to do the procedure at the adult hospital (Froedtert) by a EP Cardiologist with the following team members from CHW: Critical Care/Pulmonary, Cardiology, Anesthesia, Cardiac Surgery. After surgery she would be brought to ICU at CHW for admission and recovery. They will try to ablate the abnormal pathway or remove the abnormal tissue. The belief is that this is from a mix of her mitochondrial disease and her congenital heart disease. Neither Kristen or I were expecting this news.

Well, honestly, emotionally – I am still shaken. I can SAY all the right things – but – my heart is ever so human. I know we were given exactly what we asked for – and I will be FOREVER thankful for that. I just want it ALL. I want to KNOW that my children will all grow to become Godly people who live to serve and honor God. I just want to KNOW that they will live to be VERY old and very wonderful and VERY happy. But – none of us knows that, do we?

Kristen says she isn’t afraid, just anxious. We had a long discussion about FAITH and the POWER of PRAYER and the undescribable feeling of peace from being supported by prayer warriors. Kristen says knowing and reading that people are praying help give her comfort and peace. If those reading this feel so inclined, it would definitely lift Kristen’s spirits to receive cardss or notes of cheer while she is in Milwaukee next week. Cards can be sent to her attention at either to Kathy’s House 600 N 103rd St Milwaukee, WI 53226 or Children’s Hospital of Wisconsin PO Box 1997 Milwaukee, WI 53226
As we wait, we will praise Him for every precious moment of life He gives.

With all that being said, we are still human. We know we could go to the hospital September 11th and find several different types of precancerous or cancerous situations. That reality is never absent from our thoughts. But, God has given us faith in Him and clear direction about how to proceed.
We know our God is with us - I know He loves my precious child even more then we do (although that is hard for me to conceive) and I know He will carry my Kristen through this. He will either bless us with the opportunity to raise her up into a Godly woman who will be a testimony to His mercy, or He will bless HER with His ultimate healing.

I know all that - yes - and I love my God more than anything. Again – hang in there with us. We are basically treading water – waiting for either the hurricane to come ashore – or for the storm to pass. Either way – we are – again – so very human.

We have a room (for at least the first admission) at Kathy’s House. Their administration would like a greater donation for each night we stay there than we’ve been able to swing financially. If you know of any organizations that might help a family in this situation, please let me know. Donations can be sent directly to Kathy’s House with a notation that it is to help underwrite the cost associated with our lodging when in Milwaukee for medical care. We did receive a Jewel gift card from a church friend which I saved for use in Milwaukee. Tom and I are very thankful to have that available to obtain groceries for meals.

As you think about us, and your heart tells you to do something, please, please do not underestimate the incredible value of prayer.

We love you all and will give you an update when we return from our time away with family. God bless you all.

In the past few days – God has given some of the physicians and me clarity in our decision(s). I have had a couple of confirmations that we are doing the right thing right now for Kristen (and Annalies). I can’t thank you all enough for your prayers –your Caringbridge guestbook entries, your emails – and for all those wonderful cards and letters of encouragement we have received.

God is good – all the time – and we DO know that.
Ending tonight with another scripture. I really needed this one . . .

"I cried out to the LORD, and he answered me from his holy mountain. I lay down and slept. I woke up in safety, for the LORD was watching over me. I am not afraid of ten thousand enemies who surround me on every side. "
Psalm 3:4-6

Resting in the Lord,

~Joanne & Family~

Monday, August 27, 2007 8:09 PM CDT

"And there arose a great storm of wind, and the waves beat into the ship, so that it was now full. And he was in the hinder part of the ship, asleep on a pillow: and they awake him, and say unto him, Master, carest thou not that we perish? And he arose, and rebuked the wind, and said unto the sea, Peace, be still. And the wind ceased, and there was a great calm. And he said unto them, Why are ye so fearful? How is it that ye have no faith? And they feared exceedingly, and said one to another, What manner of man is this, that even the wind and the sea obey him?" Mark 4:37-41

Quote of the week: "Never lose sight of the importance of a beautiful sunrise, or watching your kids sleep, or the smell of rain. It's often the little things that really matter in life." Chad King

I can’t believe how much time has flown by since our last update. We have been living day to day in what seems like a monsoon. Last year we were in a drought and now we are just about need a rowboat to get around.

There are lots of trees are down and significant power outages, we can see lots of damage and flooding. Our power was down for 5 days, our neighbors’ fence is down and we had water pouring into our kitchen through a damaged vent. When the power came back on late last night I cleaned out the refrigerator and tossed all of the spoiled food. As the eye of the storm went up through the region, the spiral "pinwheel" arms were obvious here, with periods of calm alternating with pelting rain and buffeting wind. The university was on lock down, moving all of the patients to hallways for a few hours Thursday afternoon. Walgreens called and asked where we were relocating to so the ventilators could run and oxygen could be used safely. We did relocate to attend Stephanie and Hollis’ wedding. It was a good thing we had plans as the local hotels were sold out and/or didn’t have power either. The few hotels with rooms and power, locally, were asking over $250/night.

Family update

Kristen has not been feeling well. She’s very tired, has no appetite and says she just feels “weird”. She had her reading for the wedding memorized and recited it beautifully. It was so nice to spend time with Stephanie and her family. It was a reunion of family and friends. Brooklyn was delighted and her tail spoke volumes. Curiously, she treated Hollis in a similar fashion even though she had not met him previously (Kristen said he must carry Stephanie’s scent with him). We were treated to a soul food dinner after the rehearsal and a very tasty brunch at Stephanie’s parents’ home before heading home. As Stephanie and Hollis left the church they had each guest release a butterfly. It was so beautiful to watch all of the butterflies take flight. Stephanie's dad looked very familiar. And I learned he used to be a marketing rep for Kodak who called on our department at the university. It’s definitely a small world. The only meal Kristen actually ate while we traveling was a small portion of the dinner at the reception. That dinner was spectacular and quite delicious.

Kristen is scheduled for surgery to remove the lesion from her stomach and a bone marrow biopsy on September 11th. Cleveland Clinic would like a sample from the bone marrow aspirate for a study they are doing related to bone marrow failure in children/teen with mitochondrial disease. Kristen has preoperative clinic visits in Milwaukee next week.

Annalies has been very tired and achy. Throughout the weekend the reality of having a bleeding disorder and a neuromuscular related disease were quite apparent. The specialist in Cleveland is concerned about her increased sleep requirements and signs of disease progression. He doesn’t want to make any changes until after receiving the results from the studies scheduled in Milwaukee next week and the week after.

Josh has announced his engagement to Dawn Higgins. A wedding date hasn't been set yet. Josh returns to school next week. He should graduate after this quarter of classes. He’s waiting to hear if UPS will extend an offer for the position in security. Last week Josh replaced his car with another older model vehicle. His car stopped running and started smoking. The list of repairs cost over $2,000. Neither Josh nor Tom and I could see putting that amount of money into a vehicle with almost 200,000 miles on it.

Tom has started working part time as a PA for Annalies (at her request). She needed someone who could take her for clinic visits and therapy that would be reliable. Her fulltime PA walked a few weeks ago without saying a word to her or us. Tom’s mom was transferred to a nursing home for rehab. She is not happy about the situation and has been asking God why he didn’t take her. She has regained limited function but is no where close to where she was, functionally, prior to having the heart attacks and stroke.

I’m trying to take one day at a time. My boss is adding research responsibilities for the basic sciences division in addition to my clinical responsibilities. That division is looking to replace two fulltime employees with me. Let’s see…that adds up to three times the volume of work in the same amount of time, for the same salary…with hopes of retaining a position before the next round of layoffs. I just love the current economy. Health wise, I’m trying to say off of my legs to reduce swelling and joint pain. It’s proving to be a difficult balance. I’ll be glad to have a stable barometric pressure. My rheumatologist insists the joint issues will improve. Here’s hoping. I will be attending the conference in Italy on behalf of the university. Most of the expense should be covered. The hotel included breakfast and dinner every day and the conference program includes lunch. I will have to cover one night at the hotel so I have a day to adjust to the time change.

We urgently need prayer in regards to lodging while we are in Milwaukee. We will need to spend at least 9 nights there in September. The administrator would like an additional $10-20 per night since their donations have dropped off. We just don’t have the funds to give. Every organization I’ve written in regards to this has denied services as our daughters don’t have an approved diagnosis, ie cancer, chiari, etc. With diseases that are extremely rare, there is no funding available to directly assist the families living with the disease. They live with as many challenges (or more) yet have far fewer resources available to them. We just finished the renewal process for Annalies’ Medicaid waiver and the case manager asked if I was sure we couldn’t absorb the additional bills and home care services without medical assistance. Now, let’s see…her home care and medications cost over $40,000/month (and we are already paying $1,000-2,000 toward out of pocket costs and uncovered items WITH Medicaid). I tell you, it’s been quite a week!

We are fraying around the edges. I have canceled everything that I can in order to save money and to make our lives less complicated. Then another storm hits (this one weather related rather than medical) I know that God has the details, but I am tired. It is amazing to me how much the Lord loves us that He crafts each of our lives circumstances so that we are brought to the end of ourselves and into total dependence on Him. So that's the update. We are weary. Not from any emergency. Not from any life and death event…. just the daily struggle to honor God with the minute by minute stuff.

But God's got the details, right? From the rising of the sun till it goes down, He's in charge--often we forget that. Often we forget the miracle of just getting up in the morning! My kids once said it is my job to find 4 or 5 blessings each day. Sometimes that's hard. That doesn't mean we aren't blessed, just blind.

Pray for us please 1) that we can replace the lost food/groceries 2) to have wisdom and an expectant hear 3) that the clinic visits and surgery proceed without additional unexpected findings 4) Kathy’s House nightly cost be absorbed by some organization or person and 4) that we can get caught up with our bills both anticipated and the recent unanticipated. We pray for you all. For that I am grateful...

Continuing to froG,

Joanne and Family

Saturday, August 11, 2007 6:23 PM CDT

Dear Friends & Family,

Faith Makes Things Possible, Not Easy!

Thank you for loving us, praying for us, and checking on us! Your actions honor God and humble us. You make us smile on sad days. What a gift you are to my family and home! Thank you for your wonderful words of encouragement! Words fail me. You will never know the depth of our gratitude for your thoughtful prayerfulness! I pray great blessings are yours today!

Casting all your care upon him; for he careth for you.
1 Peter 5:7

Years ago my children memorized this verse in Sunday School. And, because they memorized that verse I memorized it too. I love those words! How tender! God of the universe has great concern for us. He is interested and willing to carry all our burdens. How wonderful to know that Peter wrote this verse. The same Peter that denied Christ, the same Peter that had failed his Lord, writes these beautiful words. 1 Peter is a book of praise. Knowing Peter the way I do gives these words more weight. Today I pray that I will live what I say I believe.

Prayer requests:
Annalies, Kristen and I leave Monday for appointments with the mitochondrial disease specialist at Cleveland Clinic. I still have to compile a list of questions and concerns (that list keeps getting longer). I need to specifically ask about the lesion in Kristen’s stomach as there seems to be a possibility that it may actually be a neuroblastoma (common in children with CCHS). Surgery is scheduled for September 11th in Milwaukee. We are traveling to Cleveland with another mom and son from Illinois and will be staying at a hotel outside of Cleveland as the Ronald McDonald House has been overflowing with guests and a long waiting list. Prayers for our safe travel would be excellent. I pretty much have everything packed that we need, so I think we are as ready as we can be at this point. I am really looking forward to relaxing in the pool at the hotel and visiting with Cheri, Andrew’s mom... it's the small things!

Tom’s mom survived removal from life support systems and she has been moved to a nursing home. She openly says she’s ready to “meet her maker and hopes it won’t be long. When we visit her it is clear that her health is continuing to fail, yet her frail body is “hanging in there”. Her memory is quite poor, so she intermittently doesn’t know Tom or his brothers (or the rest of us).

Annalies home care waiver is up for renewal. We are praying this process progresses smoothly and the waiver is required to maintain her Medicaid coverage and home care support. One of her PA’s told us Monday night that she had enlisted in the Marines and walked out. Annalies asked Tom if he would fill the position only working days instead of nights to assist with household tasks and to provide rides to therapy, etc. We’ve been struggling financially for many months (Tom’s been out of work for almost two years). There are no benefits and the pay is minimal but far better than nothing. It might also help in his job search as several employment agencies said they couldn’t work with him as he is currently unemployed. It’s been very frustrating. Annalies’ homecare hours were recently reduced by 105 due to union demands for increased salaries. The salaried were raised but the individuals client monthly budgets were NOT increased to compensate. The response from DORS was “too bad, so sad” but that’s the government for you.

Joshua enrolled for the last class he needs to complete his degree from Northwestern Business College. Classes resume September 9th. Katie broke up with Josh last week. He’s seems to be handling this situation far better than he has in the past. Time will tell what happens next. Tom and I haven’t a clue.

Stitch, Annalies’ service dog, had surgery Thursday for a cracked tooth. Annalies was worried about him and had trouble sleeping. Ventilator alert service dogs are very difficult to train and replace, so she was hoping for a good surgical outcome. We wonder if his teeth are becoming brittle from the medication to control his seizures. Stitch seemed at ease with the experience and was back to alerting early the next morning. Way to go Stitch.

The 23rd we will be traveling to NY for Stephanie and Hollis’ wedding. Kristen and Brooklyn will be celebrants in the ceremony. Kristen is getting more excited by the day. She already has her wardrobe selected for that weekend. Brooklyn will be sporting a bridal veil on her collar. Stephanie has committed to spend time with us Thursday to lessen Brooklyn’s excitement. Stephanie was Brooklyn’s puppy raiser and she hasn’t forgotten her “first momma”.

I’ve been invited to participate in a medical conference in Italy this November. I’m praying for wisdom in regards to whether or not to attend. Most of the cost would be covered by the organization. Several other CCHS mom’s and daughters will definitely be attending and would like us to join them. A decision must be made this week to receive the available funding. What to do!?!

As we travel down this road, we continue to trust that His plan is perfect, even when we don't understand. We trust that He is working through it all. We don't have to look far to know how blessed we truly are. We really are walking testaments to His grace, as it is the only thing keeping us going day to day. It really is sufficient!

My thoughts from God: In you, Joanne, I wish to instill trust and patience. For in my time will things happen. Just as I promised you in your dreams, I have revealed my plan. When you received my blessing, only then did you see what I had been working to provide. Your care of my children is amazing. Your willingness to forego and sacrifice is a blessing to me. I have provided these opportunities to you because I knew you could do it! I have provided you this gift as a taste of what your faithfulness will give you. Lay your trust on me always and I will never let you down. For you, too, are my child. As the ultimate Father, I will not let you down. Your children will be fine, the doctors know how to help accomplish my plan. Your children will accomplish and achieve more than you can imagine. Have faith, be strong, and most of all trust in me. I hear and feel your thoughts and prayers and I will provide all your needs. Trust in me! God

Thank you to all of you for all the support and prayers, love and listening ears you have provided for this leg of our journey. As you know, I have limited internet when we travel for medical care, so the updates will be less frequent until we get home again, but I will still forever be thankful for everything you are doing to help us, especially the simple (but monumental) praying.

Love and hugs,
Joanne and Family

Thursday, July 26, 2007 10:59 AM CDT

We want to thank everyone again for continuing to check on us during this time. Wow, what a roller coaster the past few days have been. There really isn't any way to capture all of the ups and downs. Have you ever had so many different emotions you are feeling that you don’t know where to start? Well, that seems to be where I am this week.

Shout for joy to the Lord, all the earth. Worship the Lord with gladness; come before Him with joyful songs. Know that the Lord is God. It is He who made us, and we are His; we are His people, the sheep of His pasture. Enter His gates with thanksgiving and His courts with praise; give thanks to Him and praise His name. For the Lord is good and His love endures forever; His faithfulness continues through all generations." Psalm 100:1-5

Sharing good news first…..

What can I say on a day like this Friday other than Happy Birthday Annalies? I'm forever blessed for being her mother. Annalies is definitely one of our miracles! Friday is her birthday. 22 years ago, Sunny Ridge Family Center called and said, "It's a girl!" and so entered Annalies Marie Kocourek into the world and into our hearts. From that afternoon to this day has been a long journey. But we are so proud of how far she has come. We cannot help but say a very "special" prayer for Annalies and Kristen’s birth mom and pray that the Holy Spirit lets her know that they are well taken care of and our 'little girls.' Even though we seldom see her I cannot help but think of her. Our journey with Annalies and Kristen are beyond what I could ever imagine. I would never trade anything in the whole wide world for anything less than the experience we have been given as to be their parents.

We had no way of knowing what the future would bring. We didn’t know the challenges of raising a premature infant. We didn't know that we would learn all about the families of strangers who happened to see us with Annalies at church and in the community. Who would have guessed that she would discover the concept of climbing fences at the age of two, arranging her dresses in order by how well the skirt caught the air when you danced, 'Guess what, Mommy! The puffy skirts are the fanciest!' When one child was left out of a game, who would have expected an eight-year-old to leave the group and say, 'I'll play by you.' Wow, we've come a long way. I thought then that we were living the hardest days of parenting two young children! Little did we know that the hard stuff was yet to come?

We couldn't imagine that the world contained as many wonderful people as we would meet because of Annalies, or the kind of fantastic support we could count on from those around us. We never expected to have the chance to spend so much uninterrupted time with her. As proud as we were that day in 1985, we had no idea that we would be known to so many as simply Annalies’ Mom and Dad.

We plan to stay busy Friday and enjoy the simple things. Annalies would like to have ice cream with friends instead of cake, so that is what we’ve arranged. Uncle Bob may join us since he’s visiting from Canada. We’re looking forward to a relaxing evening, maybe watch a movie and share memories of Annalies’ childhood.

On to other news....
We are playing the WAITING GAME in many other areas of our lives! Not only are we waiting for summer rains to water our garden, but we are waiting for the doctors to decide when they will proceed with their recommendations for our daughters and a sense of direction for Tom’s mom. We know that God is in control, so we continue to ask for his guidance in all of the decisions that we make.

Tom’s mom was removed from life supports last week. The physicians believed she would pass into her eternal life within hours. The Great Physician had another plan. Within hours of removing the supports, she awakened from the comatose state, started talking and requesting nourishment. It is obvious she sustained significant brain injury from the resuscitation, a stroke and failing heart and kidneys. The physical signs of heart and kidney failure are obvious, but she is still very much alive. Her earthly physicians feel her days are definitely numbered but it is anyone’s guess as to how many. It is emotionally draining to visit her and answer her questions realizing how much of her being is no longer present. We are praying that her passing, when it comes, will be peaceful.

Kristen’s surgery still hasn’t been scheduled. The past few years it seemed all of the physicians took their vacations at approximately the same time. This year, their vacations are scattered. One of the secretaries is diligently trying to determine when all three surgeons will be in Milwaukee and available to help Kristen. It looks like that might not happen until late August or early September. In the interim, Kristen is getting more symptomatic and opening asking how soon her stomach can be fixed. She has had more of the heart flutters and/or dizziness throughout the past week as well. Her cardiologist hasn’t been in Milwaukee any of the times we have been there for clinic visits recently. Her critical care physician may have to step in and help with this problem again. Kristen is looking forward to Stephanie's wedding in NY. Stephanie and Hollis have planned a busy long weekend for everyone joining together for their special celebration.

Annalies: We are noticing instability in her ability to walk again. As a result she fell last night. Thankfully, she didn’t hit her head this time. Her hands, arms and legs will be bruised and there are several scrapes, but those should heal without difficulty. The night nurse was able to support her to prevent another fall early this morning. We are trying to get PT arranged to reduce her back pain. If Pt doesn’t help, the orthopedic doctor said he will recommend some type of brace this fall. Annalies isn’t thrilled with that plan. New medications are helping with keep nausea and headaches better controlled. She is also trying some of the recommendations given to Kristen with success.

Josh is counting down until school starts again. He is eagerly anticipating its completion. He will bonus days off from UPS in the next week or two so he can spend extra time with Katie and relaxing.

Tom has been tearful and sad as the realization that his mom’s days are numbered takes hold. Even though you know that day will come, it is difficult when the reality becomes inevitable. His psychiatrist added a second medication to treat depression. Honestly, I can’t tell if it’s making a difference or not. Kristen made Tom a CD of happy and favorite songs hoping it will help him feel better.

Personally, I’m trying to take a day at a time. Between work, Tom’s mom and meeting the individual needs of our girls life has been interesting. I’m, also trying to identify potential resources to assist with the cost for lodging when we travel out of state for medical care. So far, ever potential lead has been a dead end. Almost every organization is dedicated toward a specific disease process. When you have a truly rare disease, like mitochondrial disease or CCHS, the related organizations typically don’t provide any direct support (like many of the cancer programs do).

One of my favorite songs is Find Your Wings by Mark Harris. You can listen to it by going to www.myspace.com/visit/markharris I love the whole song, but especially the chorus:
I pray that God would fill your heart with dreams
And that Faith gives you the courage
To dare to do great things
I'm here for you whatever this life brings
So let my love give you roots
And help you find your wings!

Isaiah 40:29-31- He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

You know, they say you know who your "real" friends are when you go through difficult times. Can I tell you how blessed we are with so many "real" friends? Thank you again for continuing to be the blessings that you all are to us. We love you and pray that God will pour His blessing out upon each of you! Thank you for your amazing friendships. We ask that you pray for all of us in these upcoming days and we will keep you posted as things progress.

We are so thankful for all of you who have been catching up on us through this website and for all of the sweet messages posted in our guestbook. We feel so blessed to have the amazing family and friends that we have. Thank you! Thank you from the bottom of our hearts for the prayers, support and encouragement you all provide us on a daily basis. It truly keeps us going on some of the toughest days!

FROGing,

Joanne and Family

Tuesday, July 17, 2007 8:52 PM CDT

Hi everyone! I hope that you are all having wonderful weeks. Once again God has given us the strength to get through another valley. I am finally able to find a small moment to update in the middle of life being very, very crazy, I wish that I could say things are going great, but that is not the case. Unfortunately, I wasn’t able to get an update out this weekend because things took an unexpected turn last week. You may wonder why I update our site whenever I can. I must admit it is an outlet of emotion, activities and a way of record keeping for me. I want to be sure and acknowledge that I appreciate your care, concern and prayers, but also assure you that I do NOT put EVERYTHING about our family here on this site. I do share often and perhaps more than you might feel comfortable with, but I do NOT share every detail. With that said, I’d like to express my thankfulness for each of you whether you are curious, caring or even critical. This forum seems to help me, as a mother, wife, sister, friend and daughter, as I walk through this journey with my family and with God.

Whatever happened to having normal kids? Whatever happened to the idea of normal motherhood? I think that is something that all of us here wonder at sometime. Though our situation is often not as much an emergency as some others, the day-in-day-out work of managing the medical care is very tiring! I'm so glad there is a way to support each other! Our needs are very different from normal families and this is a good way to be able to help each other. Usually I don't have a problem with these special gifts that God has sent. I treasure the extra closeness that all this intense need brings. Really I do. But sometimes, when I hear other mom's complain about the ballgame schedule, the track team practice, the whatever... it feels lousy. You know? It wasn't supposed to be this hard. Then I stop and realize that God has better plans. That He knows what is best for me and I try, with every fiber of my being, to rest in that. Wow. Some days that is harder than others.

From our house to yours--we are praying for you! We have had been a really rough few months at our house health wise so the stress is wearing us down. We depend a lot on prayer and on God. But we are human and fail sometimes and we get angry and wonder why our children or any other child or children have to go through theses challenges I guess I get to whine once in a while! Advocating for Annalies and Kristen or any child for that matter is exhausting. I just wish things were easy. But they aren’t, so onward I march, making phone calls, asking questions, sitting through meetings, praying and asking God to clear the way. The bottom line is I want what’s best for my children.

This week, our update starts with Tom. While I was in Milwaukee with the girls for clinic visits last week, I received a call from Tom. His mom had a massive heart attack on Tuesday, followed by two others, each requiring a complete resuscitation by the critical care team. Since then, she has been in a coma, on full life supports in ICU at Mac Neal. This is a difficult time for all of us, and I hope and pray that Tom and his brothers can all be sensible, respectful, patient, and at the same time have no fear to let Mom go. Right now she only is suffering, or in a drug induced state with no awareness. She deserves to be allowed to go on to her reward, while we believe it is careless and cruel to make her suffer any longer, others in the family don’t seem to share those feelings. We must give thought to allowing her the Amazing Grace she so deserves. This added stress has been a large burden for Tom emotionally.

Kristen: We met with Dr. Rice (critical care) and Dr. Sato (surgery). Here’s their idea…which, by the way is NOT done on children enough to even find a study …not even at the busiest and largest children’s hospitals in the nation or Canada. Dr. Rice has asked Dr. Sato asked to do attempt to remove the pancreatic tissue from her stomach laproscopically, using endoscopic light guidance provided by her GI doc (who doesn’t know the plan yet), and intraoperative consultation with the hematologist who will be doing a bone marrow biopsy at the same time. As far as the physicians know, this has NEVER done on a child with the multitude of medical issues confronting Kristen. They hope to schedule the surgery within the next 1-2 weeks given the impact this lesion is having on bleeding and absorption of nutrients. The literature discussing this finding in adults lists a 25-50alignancy in this type of tissue. We are praying for negative pathology. The neurophthamologist did not find any of the issues Annalies has during her eye exam. The consultation with the new neurologist seemed productive. She is taking a step approach to treating the worsening migraine headaches. The plan she outlined was approved by critical care and starts with supplemental oxygen. She discussed the poor metabolism of oxygen that can occur in individuals with mitochondrial disease, similar to the poor metabolism of food, which can contribute to headaches. Dr. Rice added a sleep study and consult visits with cardiology, ENT and genetics when we return for sleep studies in September. Dr. Rice commented that her PFT’s consistently show exhalation of nitrogen in high amounts. This is definitely abnormal but he doesn’t know what it represents (so he’s exploring the atypical finding).

Annalies: The neurologist that saw Kristen has agreed to officially see Annalies in September. Annalies’ pulmonary and neurophthamology studies are stable. Dermatology has adjusted ongoing treatment and wants to see her in September to determine if new lesions on her arms are neurofibromas and to check a rash that isn’t responding to treatment. She had clinic visits scheduled in September with the same group of specialists as Kristen.

Joshua: Josh is working a few extra hours this summer in an attempt to catch up payments on his bills. He returns to school in August for the last class required for graduation.

Joanne: My rheumatologist is hoping for stability and will do annual lupus labs, etc in October. His words of wisdom were to try to reduce stress and stay infection free until then. What can I say? I’ll try but so much of what happens in our home and lives is not within our control.

Some friends have asked about specific needs, other than prayer. For those who may be so inclined and able, we have a few specific needs and requests. 1) Kathy’s House, the hospitality house where we stay while in Milwaukee has had a significant reduction in their donations. The administrator wants us to come up with extra money or donations on our behalf to subsidize what we are able to pay/night (if possible prior to returning for Kristen’s surgery and the September clinic visits. Our budget just doesn’t have the extra cash available. We are still trying to figure out how we will pay our utility bills this summer! 2) The extra trips back and forth to Milwaukee, Cleveland Clinic and hospital visits to see Tom’s mom are greatly exceeding our “gas” budget for the summer. Gift cards that can be used at gas stations and/or groceries would be a big help. 3) Annalies’ birthday is in a week. She would appreciate receiving happy mail. Kristen received several cards last week which lifted her spirits. Annalies has been watching the mail and been disappointed. Sometimes I think she feels discouraged as so few of her friends take the time to call or visit.

Thoughts and quotes of the week:
Now to Him who, by the power that is at work within us, is able to do superabundantly, far over and above all that we ask or think [infinitely beyond our highest prayers, desires, thoughts, hopes, or dreams]. (Ephesians 3:20)

“But if any of you lacks wisdom, let him ask of God, who gives to all generously and without reproach, and it will be given to him.” James 1:5

I wanted to share part of a devotional from STREAMS IN THE DESERT by Mrs. Charles E. Cowman, because it really spoke to me...
"Faith grows amid storms"
"It is a pathway of sorrow and joy, of suffering and healing balm, of tears and smiles, of trials and victories, of conflicts and triumphs, of hardships and perils and buffetings, of persecutions and misunderstandings, of troubles and distress; through all of which we are made more than conquerors through Him who loves us. "Amid storms." Right in the midst where it is fiercest. You may shrink back from the ordeal of a fierce storm of trial...but go in! God is there to meet you in the center of all your trials, and to whisper His secrets which will make you come forth with a shining face and an indomitable faith that all the demons of hell shall never afterwards cause to waver."
E. A. Kilbourne

Tom and I want to thank all of you for your continued support and encouragement. It has been a rough few weeks but we have felt your prayers and appreciated your sweet words. We pray that God will bless each one of you as you are so faithful to His calling in lifting others up in prayer. "Carry each other's burdens, and in this way you will fulfill the law of Christ." Galatians 6:2. We will continue to keep you updated as we know more.

Love deeply…Speak kindly…Hug often…Forgive quickly…Love deeply…
“…but the greatest of these is LOVE.”

Joanne and Family

Friday, June 29, 2007 7:47 PM CDT

Psalm 59:17 “You, O God, are my fortress, my loving God.”

This verse reminds me of when my brother, Dave, and I were kids and we would build “forts” and it was that place where nothing could “get us”. I remembered the above verse and couldn’t help but see the analogy: God is our fortress and with Him we are safe. With Him, nothing can “get us”! As we prepare for clinic visits the week of the 8th and all that goes with them, I need to remember that nothing can get to any of us without going through Him first. He has already gone before us and prepared the way. Thanking God for using our children to remind me of your truths, of your sanctuary, and of the safety I have in you.

An intense emotional rollercoaster has consumed us over these last few days. Waiting for clinic visits, seeing new physicians and wondering can turn a stable person into a fractured, shaking pile of raging concern and razor edged emotion.

Struggles? I am so overwhelmed today. How much more can be placed before us?
I wonder sometimes but need to keep in mind God has a purpose and I am part of the plan. I've put it all in his hands and just need the strength to carry it out. Because I know He is carrying me.

Boy, do I sound philosophical or what? That's just the type of week it’s been I guess.

How do we make decisions for our children when the outcome is unsure? Maybe I should just be glad…grateful and happy that we are even at this point of making decisions about a possible way to fix something that can actually be "fixed"! Do we take the risk? Or do we keep going…treading water…keeping things status quo?

How do we make decisions for our children and ourselves when the outcome is unsure? With lots of prayer, asking a lot of questions, talking with Kristen and finding out how important it is to her and again…with lots of prayer we’re getting close to a decision. One thing that frustrates us is well intentioned advice from people on the outside telling us we just shouldn’t put Kristen through any surgery…when they don’t REALLY KNOW what her life entails.

As we look ahead to the clinic visits, we realize pivotal moments rest in those days. They’re days that could change our lives forever, yet…we’ve walked that road before. We had a day of utter devastation in June 1998 when the neuro-metabolic specialist told us both girls weren’t likely to survive their early teens. Time stopped, darkness enveloped us, tears cascaded down our cheeks seeming to never end and yet…here we are…we survived…praise be to God! We’ve also had many medical and legal challenges before that just disappeared! Miracles!

Well...I know it has been a long time since I have updated. I really don't have a very good excuse for that. I was hoping to learn how to add a photo or video show from Camp Inspiration, but I haven’t yet. If anyone can walk me through the steps to edit and add a slide show or video to our caringbridge page, please let me know. For now, I'll try to do a "good" update because I can feel the "anxiety" from our faithful readers and prayer warriors concerning how we are doing. Do you want to know the truth? We need your prayers desperately--physically, mentally, emotionally, financially, socially, spiritually...in EVERY way. Is this because we’re in a downward spiral in any of these areas? No, not really. It's more because life, for our family, is very complicated and, yet, we continue to live it.

Camp Inspiration: As we nervously smile at our fellow camp families, an amazing thing occurs. Across the room, some brave soul reaches over, hand extended, while another glances to the left, eyes wide and comforting. Soon we are all joining in. Sometimes you can see it, but it is difficult for others to understand. Yet we all immediately recognize its beauty. We are reaching out to each other, attempting to share a small bit of everyone else’s load. Our burdens never disappear, yet we suddenly feel lighter, happier, and grateful. We are not a gathering of ventilator dependent, medically complex children with unknown diseases, and victims. We are twelve families dealing with life, death, illness, friendships--all of which have become much too intense and have forced us to leave behind the trivialities of youth. Despite all of our problems and fears, we find an utterly life-altering comfort in each other. We are not friends because we have the same disease or the same treatment or the same hospital. We are forever connected because we experience the same feelings and thoughts every day of our lives, and never fail in our ability to say “I know how you feel” in complete understanding. One tear running down each cheek, one heartfelt hand stroking a friend’s down-turned head tie us together in an indestructible knot. The highlight of the week was watching both girls traverse the high ropes and slide down the “zipline”.

Kristen: The key physicians are meeting July 9th to determine how the lesion in her stomach will be managed. We’ve exhausted medical management, yet surgery carries significant risk. Additionally, Kristen will be evaluated by a new neurologist that has had good and bad reviews from patients in care of patients with mitochondrial disease. A new Neuro-ophthamologist will be evaluating her eyes to determine if she has damage similar to what Annalies is experiencing in her optic nerves. Over the past few months Kristen has had a marked increase in abdominal pain, headaches, etc.

Annalies: The Neuro-ophthalmologist will determine if she has additional atrophy of her optic nerve, labs will be drawn for genetics studies at Cleveland Clinic and dermatology will, once again, try to control the rash that been evasive.

Joshua: Josh is working extra hours to get caught up with loans before taking the last class required for his degree this fall. He has helped hold down the fort at home while we traveled for medical care and camp.

Joanne: No forward progress in regards to job opportunities. I really wonder if God is saying “your kids need you more right now” or “sit tight until you can retire from U of C and then seek opportunities elsewhere. I’ve finally recovered from the nasty respiratory infection. My joints and bone continue to remind me they are weak and unstable. I know the increased prednisone required to control the inflammation in my lungs from the infection didn’t help the autoimmune or skeletal problems. I’m very thankful I have Skittles to assist me. He averted many falls while we were in the mountains. I've had to pick up on more work hours just to try and make ends meet. So we have very little time free together. I think we are running on empty., at least I am.

Tom: No progress in his job search. He did plant a vegetable garden which should help reduce our grocery bills this fall. We’re both hoping something opens up real soon. The costs of gas, utilities, groceries, medications and supplies NOT covered by insurance or Medicaid, lodging for medical trips, etc are killing us. Even with my working some extra hours, I can’t stretch the money far enough.

Overall, God has been very good to us. Although at times it's very difficult to see the positive aspects of this journey he has put us on. But I do see the joy and splendor in so many simple things. The other morning as I gazed out our front window, it was such a dreary, dark and rainy morning. All of a sudden a Cardinal landed on the tree. The color of the bird was so rich and vibrant. With majesty I'd never seen before. All I could think of was, "out of the darkness comes something beautiful". Thank you God for allowing my eyes, my heart and my inner spirit to always be open to those simple, yet beautiful elegance around us. But there again I am reminded.......God's timing is perfect!

So we need lots of prayers. I've been praying every day that employment opportunities will open for Tom and me, financial challenges be met (bills paid), and that the multitude of medical issues will be sorted out. But these are other areas where I need to remember that God's timing is perfect and it is in His time not ours.
Well, friends and family - I hope today finds you with the Peace of Christ in your heart. No matter what any of us are going through, we can get through it ONLY with his guidance, grace, mercy and love---knowing HIM and his promises to us provides us with JOY even when we feel there is no joy left in our life and PEACE that only HE can give.

Blessings to all of you,

Joanne and Family

Monday, June 4, 2007 6:54 PM CDT

2 Timothy 1:12 “I am not ashamed for I know whom I have believed, and I am convinced that He is able to guard until that Day what has been entrusted to me.”

When I read the above verse I know that I truly am not ashamed of what I believe and I know that belief is in God. I also know that He is able to guard until that Day what has been entrusted to me. However, although we know these things to be true, do we continue to worry, be anxious, and have fear over what the future holds? Well, I am raising my hand, because I couldn’t possibly count the number of times that I have failed in trusting Him totally and completely with the most important thing He has entrusted me with: Annalies and Kristen’s lives. I firmly believe in His plans for our lives and not ours; how we have to trust that He DOES have a perfect plan for our lives and that He IS working, even when you can’t see it; how we have to believe that He has our best interest at heart, even when it doesn’t make sense. As we prepare for summer clinic visits, a physician care conference and summer travels, I am very confident in the plan that I believe God has laid upon our hearts. I would be lying if I didn’t confess that I also have struggled with so much worry, anxiety and fear over the possibilities of what the immediate and not too distant future holds. I pray that I will continue to trust and remain strong in faith and hope. I also pray that no matter what happens, no matter what the outcome, that I will always know that His plan IS perfect.

Tom and I have been invited to participate in a focus group for children with special health care needs next week at Children’s Hospital of Wisconsin. Holly, our care manager, is still trying to arrange a care conference with all of Kristen’s doctors. Tom and I are excited about being able to meet with both groups, in the same room respectively, and come up with suggestions for improving services our children require and a more concrete “plan” to manage Kristen’s increasing medical issues as we enter into the summer. Please pray that we will all allow God to be the head of both gatherings and that we will be able to see His divine will.

Kristen: In one way, we are so thankful that she has remained “stable” in some areas, but on the other hand, we continue to see progression of disease in others and ache for improvements in her quality of life. Her GI specialist was hoping to try acupuncture for symptom relief. I learned Thursday that having a cardiac pacemaker and a bleeding disorder are absolute contraindications to this treatment. I feel God sent a clear answer in regards to if this was appropriate for Kristen. This past week she has experienced a marked increase in the cardiac arrhythmias, dizziness and bleeding (not a good combination). We’re hoping she hasn’t picked up the respiratory infection that I brought home from Milwaukee last week.

Annalies: Annalies is finally starting to feel better after the GI procedures and GI bleed from a week ago. Her big challenge this week has been a recurrent migraine headache with light sensitivity and severe nausea. We are watching her closely for signs of a stroke as this often happens when she has migraine headaches. Even with two different high potency creams, the rashes have not completely cleared. I will have to ask my Rheumatologist about additional autoimmune related studies and, at what point, they are clinically indicated.

Joanne: I returned from Milwaukee with a nasty respiratory infection. By the end of last week, it was a mix of sinus infection, pulmonary infection, asthma flare and lupus flare. This necessitated two doctors’ office visits, a steroid burst and antibiotics which are finally making a difference. I will have to see my Lupus specialist on Saturday to fine tune the management plan before leaving for NY.

Tom: Tom has started planting a vegetable garden. I’m dreading the water bills but looking forward to fresh produce later this summer. This activity is encouraging him to continue pursuit of another job. He’s been so discouraged. Will pray that a position up for him when we return from NY. We had dinner with several of the people he worked with at AO Smith. It was interesting to hear that more than 50f them haven’t been offered employment opportunities either. They each share Tom’s frustration.

Joshua: Northwestern Business College decided he would have to take a class to replace the course they no longer offer. He decided to wait until fall hoping he can obtain additional financial aid. UPS is looking to determine if they will be able to move him to their security division when he graduated. Josh and Katie are hoping to join us in Florida next year for the CCHS Family Conference (I’m on the planning committee). It would be nice to have a time of relaxation with them. In the past Katie wondered about the possibility of getting married there are Josh graduates. They may be able to explore this potential while we are there.

I’ve read so many words used to describe mitochondrial disease. Some of them, I’ll admit, I might have used myself (horrible, terrible, tragic). The disease, itself, is all of those things. I like to use this analogy to describe mitochondrial dysfunction: Assign everything you can do (swallowing, blinking, seeing, moving, etc.) to a switch. As the disease progresses, each switch is gradually turned off. In addition, you have seizures, a chronic/weakened cardiac and respiratory systems and you have a compromised immune system which means you are prone to catch every little germ that comes near you. The odds are that you will not live to see your young adult birthdays (for those significantly affected, diagnosed as young children). All of those things are horrible, terrible and tragic. That’s what mitochondrial disease is. I’ve accepted that from the very beginning, I have no choice.

I do, however, have a choice in how I spend each day, hour and minute with Annalies and Kristen. I read this quote somewhere, “Everything in life is a choice, even if the only choice we have is the attitude with which we embrace each moment.” When I look at our daughters, I don’t see the “can’t” (can’t see well, can’t walk well, can’t hear well, can’t move well). If I focused on all of the things that are being taken away from them, that would be horrible, terrible and tragic. When I look at our daughters, there are other words, better words, which come to my mind. These words include happiness, love, appreciation, celebration, respect, precious, peaceful, endurance, patience, and life. Yes, I see LIFE when I look at them.

Early next week we will take fly to Albany, NY to participate in Camp Inspiration at Double H Ranch in Lake Luzerne, NY. The cool thing about this camp is that each week is devoted to a health condition that otherwise prevent these children from going away to experience something like this and it is completely paid for!!! The week we’re attending is specifically for children and teens who are ventilator dependent and their parents. The camp was founded by Paul Newman. Since the flights from Chicago arrive too late for the start of camp on Wednesday, they arranged for us to arrive on Tuesday and spend at night at Fort William Henry in Lake George, NY. Imagine, Kristen, our history buff, spending a night at a historical location. How Blessed we are once again!

Sometimes God brings special people into our lives and gives them a home in our hearts. You’re some of those people and you’re celebrated with love and thanks to God today.
Verse: God generously pours into our lives! Romans 5:5

Thank you so much for your continued prayers, love, support, encouragement, and friendships. I seriously don’t know how we would keep on without each of you to carry us through. You are such amazing blessings in our lives and we thank God for you and your families daily. We will update you after we return from NY.
Trusting in Him to be our Guide and Guard—

Continuing to FROG….Joanne

Sunday, May 27, 2007 7:41 PM CDT

Reflections…..

Memorial Day Weekend: As we enjoy this Memorial Day weekend we remember those who are currently serving, have served and especially those who paid the ultimate price to protect our country. Our church family has many veterans and soldiers actively serving a tour of duty. Our country has its problems and I don't always agree with the politics; however, I am so thankful that we have dedicated individuals who are willing to sacrifice themselves to protect my right to voice my opinions and live in a country with much freedom.

Sunday Worship in Milwaukee: I watched a worship service on television before heading over to the hospital to visit Annalies this morning...a way to get in touch and talk to God personally, and intimately ask Him to help me/us in our daily lives, thank Him for our wonderful gifts and blessings He has sent us; family, friends, a home, wonderful faithful service dogs and the beauty of the world around... Sometimes I am struggling and lost, unsure of the decisions to make that confront us, unsure of what is the best decision...worship and prayer times are places I can come and seek and ask for Him to send us His divine guidance. More and more I find comfort in that "home" we call our church family, and I find a sense of trust and hope and a certainty that all is as it should be, at least as far as where I am, what I am doing, and I’m learning that those heaviest burdens, those fears and worries on what course to take, how hard to push, somehow is sometimes getting easier to leave it to "God's will, God's way, God's time". I have comfort knowing I am doing all I can and for the rest, I must trust and place my faith in His hands. I know that I have so little control, forget my pride, medical knowledge, maternal instincts...I am just a small piece of the wheel that turns this and in the end, well I have to trust. Forgiveness, letting go and moving on and giving trust, most especially to God, that He in the end has it all covered. This morning the service had a wonderful choral concert; both inspirational and patriotic, given by several church choirs. My heart is full, and we are blessed. Our challenges are many and the bitter pain of chronic, life threatening illness are ever present but we have three beautiful children who, in their own way, have helped me find and know God in a way I never could have before. They inspire me, and humble me and bless me... Thank you God!

Cicadas: Billions of black, shrimp-size bugs with transparent wings and beady red eyes are beginning to carpet trees, buildings, poles, and just about anything else vertical in our region of the U.S. Last Wednesday evening, our dogs were going nuts, sniffing and digging everywhere in the yard. They were on a serious excavating mission!! The cicadas are coming. The dogs are excited but have no idea that their totally unsupervised backyard playtime has ended for a month!! By the end of June the cicadas will be gone, not to be heard from or seen again for 17 years. The cacophony of their courtship ritual disturbs our suburban tranquility, and their nests can kill the young tree branches. Females make slits in the branches and deposit their eggs inside. The process leaves many treetops with brown, dangling limbs flapping in the wind. In addition to being a nuisance, the mass emergence aerates the soil, provides a feast to thousands of predators, prunes the treetops, and provides a pulse of nutrients into the environment, or so the scientists say. Kristen and Annalies think they are extremely ugly and will be happy to see them go.

Annalies: Our beautiful young lady has spent most of the week at Children’s Hospital of Wisconsin Club Med. She had appointments in Dermatology and Anesthesia clinic followed by a surgical admission. Her 1 hour procedure took just over three hours! When Dr. M. began the endoscopy her noticed over 9 polyps, several that were quite large and bleeding. He removed 9 and left several that were too small to snare. Given the size they were sent to pathology. He also noticed a hiatal hernia which is a new finding. Postoperatively, he told Annalies, he will have to do this again in the future to stay on top of things as the remaining polyps grow. The remaining endoscopy and colonoscopy looked ok except for some edema. He hopes to have the pathology reports back within a week. Dermatology requested autoimmune disease lab studies. Annalies has had an atypical rash on her abdomen, legs, arms and face. Our local pediatrician couldn’t decide what type of rash it was (other than not infectious), neither could the dermatologist (although she admitted it had features of autoimmune disease and atypical eczema). Since being given medication to prevent bleeding, Annalies is retaining lots of fluid. I’m still trying to reach a physician to make a medication decision to improve her ability to breathe this evening. We hope to head home tomorrow after a picnic lunch at Kathy’s House with our friends and “house mates” for the past week. Annalies PA and friend, Larissa, came with to give me a hand. She demonstrated true friendship while Annalies was in the hospital, sitting by her side while Kristen and I ran to get activities to keep her entertained. How many young adults would do this?

Kristen: Her GI doctor would to try acupuncture treatments prior to making a surgical decision to determine if that would reduce her GI related symptoms. He said some cancer patients have experienced total symptom relief with this approach. Now to determine if IL Medicaid will cover this type of procedure and if it is safe for a child with a bleeding disorder. One of my friends said these two issues alone might make the decision for us. She has far less dizziness since we reduced her cardiac medications. Kristen is still extremely fatigued with no plausible explanation. Our case managing physician is wondering if it is just progression of disease coupled with the stresses of the GI distress, bone marrow issues and cardiac issues. I trust his judgment and knowledge of Kristen, so this is probably the answer. He called the specialist in Cleveland to get his take on the situation and request a relatively rapid appointment. For fun, Kristen is working to improve her skate boarding skill and counting the days until she leaves for camp Inspiration.

Joanne: The joints in my legs are very swollen and sore. All of the extra walking up and down the Skywalk at Children’s has taken a toll on my body. It looks like I will have to see my Rheumatologist sooner rather than later as, obviously, the medication I’m currently taking isn’t helping for the moment. My friend, Linda, came to Kathy’s House to help me with laundry so I wouldn’t have to try and manage stairs right now. Thanks Linda! I return to work Tuesday and I’m hoping not too much is waiting for attention in my in box. The last position I interviewed for given to another individual as an internal promotion. I feel like the Lord is telling me, “You’re marketable but your girl’s health related issues need you more then you need a less flexible job. You must be patient and I will meet your home related and financial needs. I’m trying!

Tom: He has received no additional response to his resume or job applications. I’m sure this is contributing to his depression and frustration. I just keep hoping and praying something, anything will become an option for him. Faith has kept him company while I’ve been in Milwaukee with Annalies and Kristen.

Joshua: He is anxious to hear if his school has made a decision on how they will handle the course he needs to take since it has been discontinued. Josh is helping some with Annalies care since another PA left to work fulltime at Sam’s Club. It’s helping him pay his school loan and car payment and helping me rest assured that Annalies is being looked after. He is waiting to hear if UPS will move him to a security position after he graduates. He hopes so as the FBI requires 4-5 years of career related job experience.

Quotes of the week: "No love, no friendship can cross the path of our destiny
without leaving some mark on it forever." --- Francois Mauriac
Children think parents are their strength; the truth is they are ours.

“Tune your ears to wisdom, and concentrate on understanding. Cry out for insight, and ask for understanding. Search for them as you would for silver; seek them like hidden treasures. Then you will understand what it means to fear the LORD, and you will gain knowledge of God.” (Proverbs 2:2-5)
Tonight I pray that the peace that passes all understanding fill each of our hearts and rid our minds from the worries we tend to carry. God really is good! Thank-you so much for your continued prayer for our family! Your notes, phone calls and guestbook entries fill our hearts with happiness and let us know that we are not alone on this journey. That means so much.

Until next time…continuing to FROG.

Joanne

Monday, May 7, 2007 8:16 PM CDT

Dear Family and Friends,

Mother's day is coming up, and it is a very special day to let those mothers that are so dear to you know how much you love and appreciate them. I lost my mom several years ago, so it's a day I remember, with so much respect and honor, one of the greatest moms and the best friend any girl could have! She is missed greatly. As we all know, no one can replace a mother! I'd like to take a few minutes now to acknowledge the mom's I've met during my journey that truly reflect a great light, even when things seem to be at their darkest times. Dealing with sick children can really be so draining, both emotionally and physically. It's like the quote; "true beauty is revealed if there is a light within", and these women have lights that continue to burn so brightly. They have impacted my life so much! So with all of that said, I'd like to wish these courageous women, my friends, the most awesome Mother's Day ever!

As I opened our caringbridge page tonight to journal I thought of all the Mom's on the caringbridge web pages and I couldn't continue to write, my heart aches for there loss. So here I am this evening attempting to wish these mom's a happy Mother's day, along with the Mom's who continue to love as only a mom can. Mom's that are sleeping curled up in a chair in a hospital room just so they can be there should there son or daughter wake, Mom's that are far away from home because the best care for there child is in another state, the mom's that are rejoicing because there child is well enough to be home, the Mom's crying in hospital hallways cause there loss is known, Mom's who would change places with there child if they could, Mom's whose children have died from mitochondrial disease or cancer ......my heart aches for there loss. Mom's everywhere that do what they do because that is their child and you are their Mom.

I could probably just copy and paste the last 3 updates, but figured I should include something “fresh”. I guess that I have learned some lessons lately. In spite of the fact that I preach it constantly, I still feel convicted to not compare pain and circumstances. I get so caught up in other situations that sometimes I feel like others think my glass is over half empty (actually it’s still pretty full, just emptying some). I have “but what if” syndrome. I have to stop and realize that considering Kristen and Annalies’ exact situation has not really been seen before, we must have faith that everything will be fine one day. If we don’t, what good are we? I must confess that I too often allow satan a foothold in this area of my life (Shame on you Microsoft for wanting me to capitalize satan). I know that he absolutely revels in the fact that I get down and that I am sometimes “pessimistic” and that I am not always grateful. He sees that God, Tom, Josh, the girls and I are far too good of a team and likes to worm in wherever he can. I believe that when God gives circumstances like this to His people, He feels that we can handle it. God, I appreciate the fact that You trust Tom and I with these children you have loaned us. I will do my best to make You proud.

I was recently able to have brunch with some friends of mine and they were all so encouraging. Thanks, gals, for your friendship, encouragement, and fervent intercession on our behalf. You help me realize that my glass is overflowing. You are appreciated. Thanks to all of you that continue to call, email, text, and sign the Guestbook. Even though we do not update as often as we should, we check that Guestbook constantly. Thank you. Bless you. Now, on to the family update.

Kristen: Kristen has had a marked worsening of neurological, GI and cardiac symptoms. Dr. Rice is back in Milwaukee this week so I’m awaiting his guidance in regards to what’s happening and how to manage it. Kristen has greatly decreased her activity as she’s been too dizzy or had too much numbness and tingling in her legs to function. In notes to her friends, Kristen is openly telling them she feels lousy and is having lots of big bumps in the road. Brooklyn has been very vigilant which adds significance to the increasing symptoms. She’s definitely sensing something. If only she could talk!

Annalies: GI has scheduled her scopes and biopsies for the 25th. She is anxious to know why she’s bleeding and what can be done to improve her GI function. She is also recognizing worsening vision and asking for increased training for Stitches. I’m working on the how to accomplish this. We didn’t have a lesson in guide dog skills.

Joshua: Josh is waiting to hear if he will graduate this quarter. Technically he needs one and a half classes, but they are no longer offered and, so far, his adviser isn’t sure they will continue to require them (and no substitute has been identified). He’s anxious to finish and to begin working full time at UPS or elsewhere.

Joanne: I had a positive job interview for a drug post marketing position downtown. Unfortunately for me, the company decided to promote from within. The managers I met with did tell the recruiter that they would consider me for other positions as the organization grows. I’m looking forward to the NY family "camp trip" at Double H Ranch in June. My mental health needs a relaxation, fun break. we are also looking forward to Stephanie's wedding in August. Kristen has selected her dress and all of the travel arrangements have been made (to Rochester, NY).

Tom: No movement on the employment front. He is looking again which is a positive. This week he took his mom for appointments, groceries, etc. Faith has been his companion day and night. I’m very thankful she joined our family.

Quotes About Mothers:
"All that I am or ever hope to be, I owe to my angel Mother." -- Abraham Lincoln (1809-1865)
"God could not be everywhere and therefore he made mothers." -- Jewish proverb
"Of all the rights of women, the greatest is to be a mother." -- Lin Yutang

"We were gentle among you, like a mother caring for her little children."
~1 Thessalonians 2:7~

Thank you for reading today. You are wonderful and I consider you such rich blessings from our Father. We hope all of the mother's reading have a Happy Mother's Day. As you have noticed, I’m having a lemonade day.

Continuing to FROG……

Joanne

Sunday, April 29, 2007 7:34 PM CDT

Dear Family and Friends,

Everyday you continue to bless and amaze us with the things you say and write to us. In the beginning, I started this journal for two reasons; one as a kind of therapy and diary for me of all of the ups and downs as we travel the journey called life with chronic, life threatening illness, and two, because some of you had said it would be an easy way to keep everyone up to date on things. So when you tell me what a blessing this page has been to you it is overwhelming to me. I honestly just pour my heart into this. You are getting true "Glimpse of the Kocourek’s". Thank you for sharing this with us. This page and all of you bless our family every day. Words cannot express our heartfelt gratitude. We’re just so grateful for your friendship, and always your prayers!

John 8:31-32 “To the Jews who had believed Him, Jesus said, “if you hold to my teaching, you are really my disciples. Then you will know the truth and the truth will set you free.”
Have you ever just wanted to know the truth about something so bad that you couldn’t stop until you figured it out? I remember getting ready to leave for appointments in Milwaukee last week and experiencing the same drive that I have felt so many different times on this journey as I have longed for our answer, longed to find out the truth in what is causing all of Kristen’s and Annalies' worsening symptoms. When we got to Milwaukee, I jumped in with both feet hoping that THIS might be the doctor, the test, or the surgery that would finally shed some light on what is happening. Well, as some of you now know, we didn’t get our answer. We didn’t find the truth that we were hoping to find. I’m learning more and more each day that I may not ever know WHY Kristen can’t currently seem to tolerate much food and maintain her heart rate, oxygen levels, and respiration rate and can’t seem to tolerate much activity, right now. Or, why both girls have been activley bleeding again. However, as the above verse states, the only truths that I need are HIS truths. Finding the answer to Kristen’s and Annalies’ medical mysteries won’t give me the freedom that I sometimes fantasize that it will. No, the only truth that will give me that liberty and truly set me free is His truth. Oh, I know these truths, I repeat them to myself countless times in a day just to stay sane! I know that God already knows the answer to all of this; I know that He is guiding each and every step and that He will never leave us nor forsake us. I know that His grace is sufficient and that His mercies are new every morning. I know that He isn’t surprised by any of this and that He is working even when we can’t see it. I’m so thankful that the truth that I long for, I already have! We are thankful, Lord, that you love us, even when we can be so unlovable! We are thankful to you for being our truth and for reminding us that you are all that we need. So, on the the family update.

Kristen: The surgeon feels that the surgery required to remove the pancreatic tissue from her stomach would cause more problems than it would solve. He ordered a CT to see if there was additional tissue implanted anywhere elase in her GI tract or abdomen. Unofficially, we’ve heard this study was negative. The surgeon, GI doc and others are supposed to be developing a “plan” for symptomatic treatment. We told the surgeon IF we had effective symptomatic treatment we wouldn’t be there. We also don’t know how hematology will now manage a gut that isn’t absorbing the nutrients Kristen’s bone marrow needs to make cells. Additionally, I haven’t heard how/when they will do the bone marrow biopsy (they wanted to combine it with surgery). Kristen is bleeding at intervals. Hematology believes the bleeding if from the lesion in her stomach. Over the past few weeks Kristen has complained of increasing abnormal heart beats, numbness in her foot/leg, increasing headaches and a marked increase in fatigue. The cardiologist and critical care attending adjusted her heart medication while we were in Milwaukee. No answers in regards to the other symptoms now challenging her.

Annalies: All of her hemacult cards indicate she has GI tract bleeding. We heard the GI doc plans to repeat her upper and lower scopes with biopsies. But, of course, the GI clinic nurse hasn’t called to schedule anything. They’ve had the results of the testing for almost three weeks. Nothing seems to move quickly since our doc joined the larger group at CHW. Annalies’ biggest issues right now are increasing fatigue, vision loses and lower back pain. We have an order for PT to help address her back pain (to try before considering bracing) but, I have to find a local center that accepts IL Medicaid. That is much easier said than done. We hope to add training to Stitches skill list specific to assisting someone with vision impairmant. Hopefully, a guide dog program in Florida will give us some assistance.

Joshua: Josh has one more quarter of school and he will graduate. The delay is course related. The two classes he needs ahve been dropped by the college and no one has determined what will serve as a replacement. He did meet with management at UPS and they are workign to secure a position for him in their security division after graduation.

Joanne: I have a formal job interview this Wednesday. Praying that if this is the job that is best for my family and me, God will make it abundantly clear to their staff and me. The position involves management in the part of their pharmaceutical research division. This is a multifaceted insurance company. They also discussed a medical legal position during the phone interview. Hope to know soon what God’s plan is in this regard. The weather is bothering my joints. I will need to see my Lupus specialist soon. I’ve been delaying due to the high copayment payable at the time of the appointment.

Tom: No word on the job front. I’m praying something will open for him soon. For now, he is running his mother to doctors’ appointments, groceries, etc.

We had a truly enjoyable time in Michigan last weekend with our friends, the Martin’s. We saw the home school production of Jane Eyre which was amazing. Madeline has a role in the play. Tammy prepared a delicious brunch before we headed back to Chicago. We are all hoping to spend more time with their family later this summer (if they come to Chicago to celebrate Madeline’s birthday).

Annalies and Kristen have started the countdown to Camp Inspiration in NY. Extreme Home Makeover remodeled a portion of Double H Ranch this spring. Our camping group will be the first to use the remodeled facilities. Can't wait to see it! Annalies and Kristen have reviewed all the activities the program has to offer and have tentatively selected their favorites. We will spend one night at Fort William Henry when we arrive as the flights from Chicago to Albany all land after the start of the camp program on the first day. Kristen loves history so spending a day at a historic fort is perfect for her.

Quote of the day: Faith is taking a step into the darkness and believing that either there will be something solid to step on or you were born to fly. Unknown

Now faith is being sure of what we hope for and certain of what we do not see. Hebrews 11:1

I think I better wrap up for now. Thanks so much for all your prayers, and words of encouragement. Oh, one more scripture!!! Paul wrote in Rom. 10:17 and it fits so well to what I am feeling right now…“So faith comes from hearing, and hearing by the Word of God”. Each time we hear your words of faith and hope, our faith is built up over and over!”

So please keep them coming! Your calls, email messages, guest book messages and prayers really mean so much to us as we journey on…

Meditating on His word this beautiful Sunday evening,

Joanne

Sunday, April 8, 2007 10:22 AM CDT

Thursday Brief Update:
Last night Kristen decided she should let me know that she had MULTIPLE cardiac arrhythmia events earlier. She did NOT tell her nurse. In "report" her nurse said Kristen had required 1 1/2 hours of supplemental oxygen because of cyanosis. She had notes placed around the house reminding Kristen to breathe because of the dramatic cyanosis. My guess is the two issues are related. Kristen has mentioned the cardiac "feeling" multiple times recently but the recent recurrence was definitely significant as there were multiple events on the same day in a close block of time. Something is very amiss. Waiting to hear what, if anything, cardiology will suggest for further evaluation.

I pondered all about Easter yesterday, I really, really did you know. What a special time of year it is for all of us. Some will see it as the end of winter & a time of re-birth. Others may be waiting for the Easter Bunny, or even the Easter Squirrel!!! I’m told that, in England, all the new born lambs are gamboling in the spring sunshine. They must be so pretty. Many of us will be thinking of the true meaning of Easter. I want to share a little prayer that was in my mom's family Bible.

Lord, Thank you for the gift of HOPE you gave on Easter morning. Because of you, we know that no problem is too difficult, and even death does not have power over us. Thank you for the gift of JOY you gave us when you resurrected. Because of you we know that no matter how challenging life may be, in the end we will rejoice again. Thank you for the gift of LOVE you gave when you laid down your life because we know there is no sin too great to separate us, and we are incredible valuable to you. Thank you for the gift of LIFE you gave to us when you left the tomb. Because of Easter we know this world is just the beginning, and we will spend eternity in heaven with you. We celebrate you, Jesus, with hearts full of praise and gratitude for who you are and all you have done for us!

The week brought beautiful warm weather to Illinois: warm and sunny, although, this weekend it's more like a typical winter!. It has taken me a few weeks to gather my thoughts.

"Adjusting." That word seems to be the focus of what we are all doing at this point in our lives. We are adjusting to new realities that we never expected, planned, or wanted. That may sound really strange to you but we are still trying to figure out what comes next. Some moments it's like a fog is swirling around us that makes everything else appear move in slow motion. Other hours we turn around, dazed, and wonder "What are we supposed to be doing now?"

We have spent more time in Milwaukee for clinic visits than at home the past two months. Kristen, Tom and I went for clinic appointments and a meeting with Dr. Rice (Kristen's case managing physician). I'm glad that we met with the new Hematologist before our meeting with Dr. Rice. Dr. M. Kristen's GI doc called last week. He feels NO surgeon would be willing to accept the risk to remove abnormal tissue growing in Kristen's stomach. But, he didn't actually discuss this with any of the surgeons. He did speak with several other GI docs who all feel that her symptoms are related to mitochondrial disease and that her stomach is failing. Studies that were previously done do NOT support this idea. He didn't offer or suggest additional, more definitive studies to prove or disprove this theory be done. The visit with the Hematologist was enlightening. She believes that: 1) Kristen's CBC is abnormal for three reasons: 1) Malnutrition related to poor food intake, 2) Malabsorption related to the tissue growing in her stomach and the likelihood that it is releasing pancreatic enzymes causing intermittent bleeding, nausea, pain and the "full feeling", and 3) mitochondrial disease causing her bone marrow to fail. Yes, bone marrow failure. She would like to do a bone marrow biopsy, sooner rather than later, but coupled with another procedure to avoid extra anesthesia. She suspects that the turbidity in Kristen's urine is related to abnormalities in her bone marrow or mitochondrial disease. Invasive surgery has significant risks for Kristen, yet, we are almost to the point that there is NO alternative...so praying for wisdom and quick decisions. If they don't remove the tissue, the GI docs are proposing other GI related surgery to allow alternative methods of giving Kristen adequate nutrition and fluids. Either way, surgery IS involved. Kristen is trying an increased dose of one of her cardiac medications in hopes of correcting the abnormal, rapid heart rate and rhythm found late in January. The abnormalities in Kristen's heart rhythm/rate have improved. They are not totally resolved but better than last month. Dr. Rice is arranging a meeting with GI, Hematology, Surgery and himself to discuss options for Kristen. He point blank asked Kristen what she thought and she said she wants to feel better. Dr. Rice sis not state where he stands on the issue, but did feel it is appropriate to discuss this with a surgeon. Hoping this meeting takes place soon. An appointment has been scheduled with a surgeon on April 23rd at Dr. Rice’s request to learn what a surgeon really thinks about the options. If the bone marrow failure continues, the big question is do we need to consider palliative care or hospice???? Unless bone marrow issues seen in cancer, transplant is NOT an option. Then, this last week, the rapid heart rates have reared their nasty head with a vengeance again. Kristen just doesn't get a break :(

On a happier note, Kristen and Annalies attended the Starlight Starbright Prom last Saturday. The girls looked beautiful in their prom dresses, And, Kristen has learned to skateboard. Kristen could never maintain her balance on a bike so this is truly amazing. She is very excited. She’s enjoying participating in “normal” teen activities.

Annalies is complaining of increasing back pain. The orthopedic surgeon suggested a trail of PT before going to a brace. Now, the challenge of finding a PT office that is open evenings that will accept Illinois Medicaid. We've noticed she is also sleeping more which demonstrated that her metabolic disease is taking another nosedive. Her comment is, "I just can't keep myself awake." Since we switched ventilators, I've noticed far less apnea events so the tiredness isn't due to failure to breathe during the night. Annalies is keeping busy with her craft activities and reading. Her favorite book are Jane Austen, Louise Rension and Sophie Kinsella.

So, we are "adjusting" because again our life is different than we planned. There continue to be far more questions than answers and it will be easier to NOT go into speculation and "what ifs" at this time. Please don't ask. I promise to share more information as it is revealed to me. I had forgotten how frustrating clinic visits can be.

Thank you all so much for the wonderful outpouring of support, love, and prayers that we've gotten over the last several weeks. We have been held up by your prayers and will continue to need them as we make adjustments. We love you all and appreciate your concern for our family.

Until the physicians can sort out how they are going to manage Kristen's GI issues (discussing some type of surgery at a minimum), I've put my job search on hold. I need to remain available to meet Kristen's needs. My joints are not happy with the increased humidity which makes any walking a challenge. Tom has had NO success in his job hunt. The last response to submitting his resume was that his work history was good enough as he isn't working at present.l There was NO acknowledgment that the''s worked faithfully for 10-15 years at each of his last places of employment. Very discouraging.

Did you know that Paul Newman's food line supports the Double H Camp program for medically compromised children? There is a camp in Lake Luzerne, New York that offers a family camp program for children and teens that require ventilatory support called Camp Inspiration. Our family was accepted for their program this year. We will be spending 5 days there in June. They offer a full range if camp activities for the kids and respite for the parents. Given the travel required they asked us to arrive the day prior to the start of camp. The program provided a day at Fort William Henry at Lake George. This is one of the original forts established by settlers in the New England States. Kristen loves history and she's as excited about spending a day there as she is with the camp activities....white water rafting, a rock wall for climbing, horseback riding, an amusement park, swimming, sailing, fishing (Tom with a baited fishing rod standing on the pier), photography, campfires, sing-a-longs....sounds like fun to me.

The weekend of the 21st, we will be traveling to Kalamazoo to visit with our friends, the Martin family. Their daughter, Madaline, is in a homeschool production of Jane Eyre. Last year the proceeds of the play were presented to their family to help cover the cost associated with getting a service dog. They are anxiously waiting for Lunar to complete his training. Lunar is related to Stitches and Skittles (two of our helpmates). We thought it would be nice for the children to meet some of the ECAD dogs already assisting other children/teens. We treasure our friendship and the support we receive from this family walking a mitochondrial disease path that is very similar to ours.

I am so sorry it has been so long between my updates. We have spent almost more time at hospitals and clinics since Christmas than at home. I’ve taken time trying to digest all of the information and findings we’ve been given over that time. Annalies and Kristen always remind me that, even if it's to our dismay and confusion, God's decisions are all perfectly timed and He has the perfect plan - plans so great that none of us could think them up. So, while it hurts me to no end to know our daughters are so sick, I'm just following their faith, learning from it each and every day, and BELIEVING! Because, that's what Annalies and Kristen are all about. We're so blessed to have them as our daughters!

Love always protects, always trusts, always hopes, always perseveres. Love never fails. 1 Corinthians 13: 7-8

My HOPE and Prayer for each of you this Easter and everyday is that you know the LOVE of JESUS.

Enjoy your week, Love one another and remember that you are Loved.............Joanne

Monday, March 5, 2007 11:16 AM CST

It has taken me a few days to gather my thoughts. This week has been another difficult one. Kristen, Tom and I went back to Milwaukee for two clinic appointments and a meeting with Dr. Rice (Kristen's case managing physician). I'm glad that we met with the new Hematologist before our meeting with Dr. Rice.

Dr. M. Kristen's GI doc called last week. He feels NO surgeon would be willing to accept the risk to remove the tissue growing in Kristen's stomach. But, he didn't actually discuss this with any of the surgeons. He did speak with several other GI docs who all feel that her symptoms are related to mitochondrial disease and that her stomach is failing. Studies that were previously done do NOT support this idea. He didn't offer or suggest additional, more definitive studies to prove or disprove this theory be done. The visit with the Hematologist was enlightening. She believes that: 1) Kristen's CBC is abnormal for three reasons: 1) Malnutrition related to poor food intake, 2) Malabsorption related to the tissue growing in her stomach and the likelihood that it is releasing pancreatic enzymes causing intermittent bleeding, nausea, pain and the "full feeling", and 3) mitochondrial disease causing her bone marrow to fail. She would like to do a bone marrow biopsy, sooner rather than later, but coupled with another procedure to avoid extra anesthesia. She suspects that the turbidity in Kristen's urine is related to abnormalities in her bone marrow or mitochondrial disease. Invasive surgery has significant risks for Kristen, yet, we are almost to the point that there is NO alternative...so praying for wisdom and quick decisions. If they don't remove the tissue, the GI docs are proposing other GI related surgery to allow alternative methods of giving Kristen adequate nutrition and fluids. Kristen is trying an increased dose of one of her cardiac medications in hopes of correcting the abnormal, rapid heart rate and rhythm found late in January. The abnormalities in Kristen's heart rhythm/rate have improved. They are not totally resolved but better than last month. Dr. Rice is arranging a meeting with GI, Hematology, Surgery and himself to discuss options for Kristen. He point blank asked Kristen what she thought and she said she wants to feel better. Dr. Rice sis not state where he stands on the issue, but did feel it is appropriate to discuss this with a surgeon. Hoping this meeting takes place this week since Dr. Rice will be in Milwaukee all week.

Annalies: The clinic nurse called to say Annalies is bleeding and the GI doc is not sure how they will treat or if they will explore this further. The Hematologist agreed that Annalies is showing early signs of similar bone marrow issues. She will give some thought as to the best way to proceed. The metabolic specialist would like her to start Ritalin to see if it would improve the amount of time Annalies can stay awake. She’s been sleeping 16-18 hours each day which doesn’t give her much time to enjoy life. Critical Care docs do not feel this medication is appropriate for Annalies at this time. She's not pleased with that decision, but I respect their judgment. The changes the Neuro-ophthalmologist find are a sign of definite disease progression, which is likely to eventually lead to total loss of vision. He suggested we start to add “guide dog” skills to Stitches repertoire. Much to my surprise, she is in total agreement. The neurological sign/symptoms we’ve been seeing all fit with disease progression. This isn’t good, but, at least, it explains why we are seeing so may atypical symptoms. We switched Annalies to a different ventilator (same as Kristen’s) with full alarms and a better backup rate to keep her breathing. Annalies is doing well with the ventilator switch. Dr. Rice wants another sleep study in several weeks. If the study is good, we will begin adjusting Stitches skill set.

Joanne: I turned down a job offer with Abbott. I didn't have a sense of peace accepting this offer given the combination of Kristen's increasing needs and medical instability and the lack of benefits coupled with a 105 mile drive each day. I have a meeting with my boss late next week and know the changes they are considering will be extremely difficult for me in regards to my mobility challenges and the need to be available to care for Kristen. I just don't know what direction God is leading me toward in this regard. My heart is saying a change is imperative but the timing just isn't right.

Tom: No positive movement in his job search. Tom has been helping his mom with doctors office visits in Berwyn and at Loyola. I am thankful he came with to Milwaukee. Sometimes hearing of your child's distress from the father seems to get the physicians attention much better.

Well, now you know why the update had to wait … thank you prayer warriors and friends for allowing us to bring you our hearts and much needed prayer requests. I will be sure to report to you all as soon as I know something … as always, we thank you for your faithful prayers, your love and especially, your friendships. We love you all bunches … May you be surrounded by His Sonshine.

We hang onto these verses many, many times during our journey …Romans 12:12 “Be joyful in hope, patient in affliction, faithful in prayer.” and Proverbs 3:5-6 "Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight."

Thank-you God for being at work in our lives even when we may not see it. Things didn't work out for definitive answers this week but I am trusting that they have been guided by your hand. Unfold this week as you see fit. To you I give the Glory!

In faith believing....Joanne

Sunday, February 18, 2007 2:50 PM CST

I am so sorry it has been so long between my updates. We have spent more time at hospitals and clinics since Christmas than at home. I’ve taken most of the week trying to digest all of the information and finding we’ve been given over that time. Annalies and Kristen always remind me that, even if it's to our dismay and confusion, God's decisions are all perfectly timed and He has the perfect plan - plans so great that none of us could think them up. So, while it hurts me to no end to know our daughters are so sick, I'm just following their faith, learning from it each and every day, and BELIEVING! Because, that's what Annalies and Kristen are all about. We're so blessed to have them as our daughters!

I’ve been silent since we got back from Cleveland Clinic. Silent, waiting for the words to come. Sometimes it takes patience to just wait knowing you are all waiting also. Today…this afternoon the words flooded me. So here goes………

Kristen: Her GI doc found either a pyloric duplication or pancreatic tissue (or a combination of both) growing in her stomach. Hope the docs decided how they will treat or repair that situation quickly so she can resume more normal GI function. Kristen is trying an increased dose of one of her cardiac medications in hopes of correcting the abnormal, rapid heart rate and rhythm found late in January. If not, her critical care doc wants cardiology to “fix” it as he believes this is related to her congenital heart abnormalities. Kristen had a bleed after surgery last week which resulted in a trip to the ER. Her CBC is abnormal. The metabolic specialists wants Hematology to see her soon. Appointments with Hematology and Cardiology are scheduled on March 1st. The metabolic specialist also believes that her kidneys are dumping fat into her urine. Invasive surgery has significant risks for Kristen, yet, we are almost to the point that there is NO alternative...so praying for wisdom and quick decisions. Kristen has, also, managed to catch the virus that’s in the Midwest and is struggling to clear the infection. We may have to take her to the local doc to ensure that she doesn’t need antibiotics for a secondary bacterial process.

Annalies: After being told all of the GI studies were “fine”. The clinic nurse called to say Annalies is bleeding and he’s not sure how they will treat or if they will explore this further. The metabolic specialist would like her to start Ritalin to see if it would improve the amount of time Annalies can stay awake. She’s been sleeping 16-18 hours each day which doesn’t give her much time to enjoy life. The changes the Neuro-ophthalmologist find are a sign of definite disease progression, which is likely to eventually lead to total loss of vision. He suggested we start to add “guide dog” skills to Stitches repertoire. Much to my surprise, she is in total agreement. The neurological sign/symptoms we’ve been seeing all fit with disease progression. This isn’t good, but, at least, it explains why we are seeing so may atypical symptoms. Friday, we switched Annalies to a different ventilator (same as Kristen’s) with full alarms and a better backup rate to keep her breathing. We thought she would resist the change, but she’s doing ok with it. Her CBC shows some of the same problems as Kristen's. Additional studies have been started at Clevelans Clinic hoping we can get a handle on this new wrinkle.

Joanne: With all of the stress between work and the girls increasing issues, plus poor homecare night coverage and catching the same virus the kids each have, I’m having a nasty Lupus flare. I was offered a position with Abbott Labs last week, and after prayerful consideration turned the offer down. I just don’t have peace about it when considering what my girls current needs are and the financial implications regarding salary, benefits and driving 105 miles/day. I’m trusting the right position will be abundantly clear when the timing is perfect in God’s sight.

Tom: No movement in his job search. He received one call and they wouldn’t consider him as he’s currently not working. Very frustrating! Faith is doing wonders for his emotions. She is a delight with a superb personality. For the most part, he’s looking after her and is training with her. She’s very curious and is taking cues from the trained service dogs...so smart.

In the past, even recently, I have worried whenever I would get down or have a private pity party or cry because it was just too hard living with the increasing stresses each day, I worried that my faith was not strong enough. I thought how can I be like this and have a strong, believing faith. But I realized today that our human nature, the way we push and strive to be “well” is the reason we go through those cycles. That is a part of becoming stronger in our faith. When you fall to your knees crying and ask God to please take it away you pull closer and gain that comfort that is needed to take the next step, even the next breath. God knows us better than we know ourselves. He understands us and loves us. He already knows we will have those days and He is right there just waiting to comfort us. You just don’t know what a huge comfort those thoughts were to me today. I have really struggled with that. I won’t doubt my faith and the strength He gives me.

There are so many families struggling with the affects of this disease. Some have recently lost their precious little ones, and others, like us, fight everyday just to keep their children alive and to give them some quality of life. It seems so unfair, and it is really hard to deal with sometimes. We try our best to remain positive, but there are some days that the sadness and fear is almost overwhelming. Please pray with us for all the families, including us, who are struggling with Mitochondrial Diseases and other chronic or terminal illnesses. We know that God has a plan, but it is hard for us to understand- this side of Heaven. I know that He can see the bigger picture from His point of view. So we will not lose faith, and we will never give up our hope. We, literally, trust Him with our lives!!! And no matter how horrible this disease is -- Annalies and Kristen are beautiful blessings and a joy to us EVERYDAY!!! They are sweet and lovable! They light up our days, and inspire us to live our lives with courage and strength. They touch so many hearts and lives in this world -- and that has to be why God sent them here!!! We are just so grateful that He chose us to take care of them and love them!!!

So right now we are kind of quiet, just enjoying each moment, and praying for strength for the challenges that lie ahead. Because this day is all that we are promised. And what a day He has given us. We are at home with together. Most of all, we are supported in prayer and loved by those who care about us. With all my heart I thank you for your continuous ministry to my family and me. We are blessed.

Quote of the week: Don't ask for a light load, but rather ask for a strong back.~ Anonymous

Verses: Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.
Romans 5:3-4

Thank you for your continued prayers, emails, notes on my guest book, calls, and so much more. Your love and friendship is a precious gift to us. We greatly appreciate your unfailing support so much and for always listening and caring!

Monday, January 29, 2007 10:48 AM CST

Greeting to you our faithful precious family and friends,

Update: February 5th:

Kristen had the EGD with biopsies on Friday. Her doc hopes to have the pathology back by the end of this week. On visual exam he believes her GI related issues are coming from either a pyloric duplication or pancreatic rest or a mix of both. Now he has to explore treatment options. The thought is this congenitla abnormality will have to be surgically removed. Kristen has had significant bleeding postoperatively. Spent Sunday afternoon in the ER for fluids and counts. Her Hgb dropped a gram from preop. The girls and I leave for appointments at Cleveland Clinic early tomorrow morning. Hoping the mito specialist there can offer sone suggestions to help slow the progression of disease. Praying for smooth travel with minimal snow and ice. Another family from IL will be travelign with us as they have appointments with the same physician.

Thanks so much for stopping by to pay us a visit today. We pray you will be encouraged, and share the hope we have found after reading about all the things the Lord has been doing in our lives. Oh…I cannot begin to thank you enough for all the loving support that you have sent our way. Gosh…I’m speechless. (Now you know for that to happen, it’s serious!) 1Thessalonians 5:16-18 the Bible says: "Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus."

We have certainly felt divine intervention in our lives over the past couple of years, much if it involving other people crossing our lives, from medical professionals to complete strangers. We have been very blessed by many acts of kindness! Others have come into our lives that are on similar journeys and they have been a balm for our souls. Talking with other families who have gone through similar circumstances is so helpful.

With grateful hearts we have received abundant blessings this past Christmas season! You might find it a little unusual that we feel more blessed this year than we ever have in the past, even though Tom still doesn't have a job and Annalies and Kristen are confronting issues related to disease progression. However, we are keenly aware that we are so fortunate to be able to celebrate another Christmas with all three of our children. We don't know what the future holds and don't want to ever take a day with them on earth for granted. We were so humbled this Christmas season by the fact that so many of you reached out to us and have reminded us that we are not alone and that we will get through this with your help and the grace of God. We have so many people to thank for making our Christmas special! Some of you have chosen to remain anonymous, but please know that we are touched by your amazing generosity! Praise God from whom all blessings flow.... Words cannot express our gratitude and we pray that God will bless those who have blessed us. As 2007 progresses, how can I not be pleasantly happy that God has given us one more year as a family? The blessings that have come this year have been many. Our family could have been homeless and hungry, cold and sick. Instead people came into our lives that have given us help, food, and the means to maintain our utilities. If people were not touched by God and in turn brought into our lives, right now we would not be here....we are alive, warm, and fed, simply from people who have given of themselves to a perfect strangers....thank you to those people. We are looking forward to 2007, with the hopes that a mitochondrial disease cure or effective treatment is found.

Now on to thoughts for this week and a medical update with the recent clinic visits behind us.

F A I T H
5 letters, but it’s such a powerful word. We have had times in the last four years, during rocky portions of our journey, that we’ve questioned our faith. But we know without a doubt that those were some of our shining moments with our God. Our faith was and is being tested and tried. We are in the midst of the strongest storm and struggling. We have a choice. Our choice to trust our God who loves us and knows exactly what is best for us. We don’t question our faith any more. We know there may be times when we are weak and the storm is hard. But we know to look to Jesus and He will bring us through. So, it isn’t a sign of a weak faith, just a sign of a trusting soul. We hope this helps any of you that may have ever questioned how strong your faith is…if you are praying, it is stronger than you realize.
Quotes of the week: “If it wasn’t a true trial, it wouldn’t be a true faith.” “God didn’t save you from something. He saved you for something.” ~ Bob Pierce
For we walk by faith, not by sight 2 Corinthians 5:7

…so I’ve been promising this update for two weeks now, and I know its time has come. For those of you who know me well, you know I tend to over think these things…so its time to just spit it out. I am going to start forwards and work back…

Annalies: Pulmonary concerns include marked fatigue, worsening hypotonia, intermittent obstructive apnea while awake, episodic discord between breathing and swallowing with aspiration. We will start Singular to see if it helps decrease upper airway resistance and change her ventilator to the LTV 950 so she will have a better rate back up and more accurate alarms. GI: GI issues may be brain related disease progression. The docs did agree to allow us to try Zofran to see if it helps relieve the nausea. Neurology: ordered a 72 hour Digitrace (at home EEG). There are concerns about optic nerve thinning. He will discuss this with Dr. Cohen in Cleveland and we will seek to add “guide dog” skills to Stitches tasks. Urology: Bladder and kidneys are ok. Abnormal cloudiness in urine is associated with disease progression and poor metabolism of fats. Orthopedics: Low back pain is most likely muscular so Annalies will try PT before making a decision on bracing. Her spinal films clearly showed abnormalities in the bones and joint spaces but no herniation or bulging.

Kristen: Cardiology: Pacer interrogation demonstrated 170 episodes of arrhythmia. Fastest >400bpm, the longest episode was >10 minutes. It is likely either atrial fib vs. SVT. We will use an event recorder for 30 days, have adjusted medications and will return for cardiology follow up in 4 weeks. If the arrhythmia persists, they are suggesting cardiac procedures or surgery as this is most likely related to her congenital heart disease. Fine motor skills worsening we will speak to Dr. Cohen to determine of OT might help. Pulmonary: Sleep study OK, symptoms including Fatigue, air hunger, chest pain may be related to arrhythmia. ENT: Calcification on right side, not impacting hearing. GI: EGD with biopsies scheduled for Friday, February 2nd. The original plan was to take care of this last Friday, but there were no available ICU beds and every involved physician felt Kristen needs to be closely monitored for at least 24 hours. Dr. M. suspects yeast overgrowth vs. polyps vs. eosinophilia is causing nausea, abdominal pain and full feeling with no appetite. Urology: Bladder and kidneys ok, abnormal urine related to fatty acid oxidation abnormalities.

The long and short of it is: Every physician we met with believes that both girls are experiencing a marked increase in disease progression. Honestly, I’ve suspected this in my heart for a few months. But, that doesn’t make it easier to hear. The girls even discussed similar feelings after the visits. Their consolation was: we headed home and they got to see how much Faith (our Golden Retriever therapy or service dog in training has grown). Yes, we have a new addition to our family. Faith was a gift from our treasured friend and attorney, Jennifer. Can you tell? Keeping the Faith has been an ongoing theme in our home this year.

So we will return to CHW for Kristen’s GI related surgery this week. Return home on the 4th and leave for Neurometabolic clinic visits in Cleveland on the 7th. I’m praying for good weather and safe travels. Another family fro Illinois will be traveling with us as they have appointments with the same physician on the same days. This will help reduce some of the expense for both of us.

When you come to the edge of all the light you have known and are about to step out into the darkness, FAITH is the knowledge that one of two things will happen... there will be something to stand on or you will be taught how to fly.

So when thinking through all the blessings for the year and all the setbacks we’ve dealt with, the things that remains constant are God, and our true friends. Thanks so much for all the thoughts, prayers, visits, phone calls, food, gifts, cards...they all mean so much! For those of you that have left me notes on my guestbook, emails, sent cards, called me, and so much more…what an incredible ministry you have been doing in my life. You help to keep my spirits lifted even on the cloudiest day. Mere words cannot express what your continued love, support, and prayers mean to me. I pray rich blessings for you all each day. Now let’s celebrate every day for the answered prayer. God is so good!

Until next update…keeping the faith and trying to be patient.

Joanne and Family

Saturday, December 30, 2006 10:29 PM CST

The New Year is a time of hope as we reflect on the past and prepare for the future.

With grateful hearts we have received abundant blessings this Christmas season! You might find it a little unusual that we feel more blessed this year than we ever have in the past, even though Tom still doesn't have a job and Annalies and Kristen are facing new challenges with progression of their disease. However we are keenly aware that we are so fortunate to be able to celebrate another Christmas with all three of our children. We don't know what the future holds and don't want to ever take a day with them on earth for granted. We have also been so humbled this Christmas season by the fact that so many of you have reached out to us and have reminded us that we are not alone and that we will get through this with your help and the grace of God. We have so many people to thank for making our Christmas special! Some of you have chosen to remain anonymous, but please know that we are touched by your amazing generosity! Praise God from whom all blessings flow...

H ours of happy times with friends and family
A bundant time for relaxation
P rosperity
P lenty of love when you need it the most
Y outhful excitement at lifes simple pleasures

N ights of restful slumber (you know - dont' worry be happy)
E verything you need
W ishing you love and light

Y ears and years of good health
E njoyment and mirth
A angels to watch over you
R embrances of a happy years!

Brief medical and family updates: Annalies and Kristen spend the week between Christmas and this weekend at Children's Hospital of Wisconsin. Annalies is being evaluated for worsening seizures, poor gait, increasing ataxia. Her Neurologist is trying to determine if medications need adjusting or if this is progression of disease. Her GI symptoms are also worsening so there is concern that some medication is just passing through too quickly before she can benefit from it. Also received the Neuro-ophthomology report this week which definitely shows involvement of her optic nerve. That explains alot in regards to her vision loses. Kristen's ventilator is acting up and no one can deternime how to resolve the low volume issue. She has had weeks of abdominal and chest pain with no appetite and persistant nausea. Our family pet, Angel, died a few weeks before Christmas. This has left Tom more dispondent than normal. After discussions with the physicians, we hope to welcome a companion dog/psych service dog into our family. Even the prospect of this has brought an improvement in Tom's affect and attitude. We discussed this with our vet and he, also, feels this is appropriate. We will be meeting with a service and therapy dog breeder on New Year's Day. If all goes well, we will be welcoming 14 week old female, golden retriever puppy into our family. Josh received partial funding from UPS for his education so he can continue until we can figure out how to fund the balance. Josh will finish his associate degree in two more quarters. Between increased stress at work and home, my lupus has flared. Hoping a quiet weekend will help reduce the inflammation, swelling and pain in my joint so they are more functional. Today Tom and I are celebrating our 29th anniversary. It's hard to believe as time flies by so quickly. We return to CHW for Kristen's sleep study on the 11th and then a week of studies and clinic visits for both girls January 21st. Then to Cleveland Clinic on February 6th.

As the year comes to an end we are just reflecting back at how far we have come and the rollercoaster we have been on. We are grateful that you can share in our journey. We would have a much harder time without your prayers, love and support! Thank you again for being there for us! Give your families a big hug from our family today! As we celebrate the New Year, we give thanks to God for His blessings and ask for His guidance. We look with hope to the year ahead and the many new opportunities the future will bring.

Love always protects, always trusts, always hopes, always perseveres. Love never fails. 1 Corinthians 13: 7-8

In FAITH beliving, Joanne

Thursday, December 14, 2006 8:49 PM CST

Dear Family and Friends,

Well, it’s official; Christmas is right around the corner! We pray this update finds you doing well, and enjoying all the very special moments of this most holy season. I must say Christmas is by far one of my favorite times of the year. I pray you never stop searching to know Him more and more, and take the time to spread His hope, love, and joy to all who come into your life. We hope to be grateful and introspective during this season. All the moments: those moments where we commune in prayer and exultation. The silly moments when we realize we’ve stressed out way too much over what gift to give, instead of giving the gift everyone wants most – our time, attention, love. Let us freely share the greatest gift – love – as we move through all our moments this holiday season.

Giving some thought to words associated with Christmas…..

JOY. You see that word around a lot this time of year. But with health problems our family confronts, financial stress since Tom has been unemployed and the loss of several loved ones….with such sadness, how can we know joy? Joy doesn't mean just feeling happy. Joy is that deep down peace in your heart you feel when you know things will be alright. We can have that kind of joy when we understand that: * God promises never to leave or forsake us. * He can mend broken hearts and heal. * He can provide riches beyond what this world offers. * He offers us eternal life with Him, if we put our faith, trust, and hope in Him..02

HOPE. What is hope? It’s not a prescription. It punctuates our laughter. It simmers under sorrows. It’s dreaming of tomorrow. It’s pushing past the impossible. It’s questioning the answer. It’s perfume for the spirit. It’s magic and it’s free. It sprinkles our tears and disputes our fears. It’s reaching past today and trying a new way. It whispers a cure of remedies unsure. It’s candy for the soul. To share it makes you whole. We’re sharing hope with you today.

PEACE. Peace does not mean to be in a place where there is no noise, trouble, or hard work. Peace means to be in the midst of all those things and still be calm in your heart. Peace is the state or condition of restfulness, harmony, balance, equilibrium, longevity, justice, resolution, timelessness, contentment, freedom, and fulfillment, either individually or simultaneously present, in such a way that it overcomes, demolishes, banishes, and/or replaces everything that opposes it. That is the real meaning of peace

Living with Mitochondrial Disease is so confusing and baffling. Literally things change from one moment to the next. One moment you have hope and the next it is taken away. Your emotions are on a roller coaster ride that never ends. We know that during this Christmas season our updates, at times, may be sad. We choose to think of this time as a bittersweet time. We are taking the challenges one day at a time and giving grief its full dues. At the same time, we are so grateful to all our friends and family who continue to love us, support us and allow us to grieve our personal loses with them. One of the greatest gifts of grief is that it allows us to understand and express the deeper meaning of what Christmas is all about. It is our hope that you cherish all the loved ones in your life.

As always, we’re so grateful for all of you that take time out of your busy life to come by and check up on our family. We appreciate each and every visit you make, card you send and the kind and loving words you leave for us to read. I have to tell you that Tom and I are unable to express how touched we have been recently at all of the amazing acts of kindness that have fallen upon our family! We can't possibly deserve what you have all done for us. We are moved beyond words and humbled by your love and grace. Thank you for the constant reminders that we are not alone. Some of you are an active part of our every day life, some of you support us from a distance, many of whom we've never even met. Each of you is an important part of our lives in your own special ways, and we truly appreciate all you are to us. We could name names, and many of you would throttle us if we did, so we have to trust that you know who you are. We want you all to know that your prayers are working and each time we get knocked down, God picks us back up and just knowing you are praying for us helps so much and gives us peace.

Wishing you ~*~JOY~*~HOPE~*~PEACE~*~

Fondly,

The Kocourek Family

Sunday, November 26, 2006 7:42 PM CST

Our incredible journey into the medical world of Congenital Central Hypoventilation Syndrome (CCHS) and Mitochondrial Cytopathy began in 1989, with the adoption of our third child, Kristen Lynn. We knew that something serious was wrong with our precious girl when she was placed with us. We would not learn exactly what until almost two years later. From a medical standpoint that first hospitalization for apnea and bradycardia brought many questions but little answers. From a spiritual standpoint that first hospitalization began our “leap of faith”. It was during that first stay in the intensive care unit that we remember looking down at my precious baby and begging God not to make us say “goodbye” when we had just said “hello”. We didn’t understand what or why this was happening.

For years we had prayed that God would keep our children safe and healthy. Losing any one of those that had finally been placed in our arms was something we knew we could never make it through. We remember asking God that day why he would do this or allow this to happen to us. While we asked God for answers that day what he gave us was more of a question. It was as if God spoke directly into our heart's and said, “Do not put me inside a box and tell me what I can and cannot do. Do not tell me that I can get you through THIS but never THAT. Do not limit who I am. I am your God, the maker of all things. I can get you through ANYTHING, even this, if you let me. Will you let me? Will you trust me?”

We have let him. We do trust him. And I can tell you that through this journey, day by day, we have learned to know him and love him so much more! This isn’t a path we would have chosen. But it has become one that we have chosen to accept. By the age of two years Kristen had lived over half of her life in Peds ICU's and had her first heart surgery. Around this time we started receiving coordinated care at Children’s Hospital of Wisconsin. We were blessed to find a doctor that has stayed involved, compassionate and never been willing to give up on Kristen. Thorough investigation and follow-up revealed that Kristen specifically had CCHS and the mitochondrial disease/fatty acid oxidation disorder. The defect is found within the genetic makeup of Kristen's mitochondria. Muscle and skin samples were taken within the family and it was determined that Kristen and her biological sister Annalies each have these rare genetic diseases. There is no cure for these diseases and the only treatment is ventilatory support, a cardiac pacemaker, the mito cocktail and a specially formulated, very low fat diet which Kristen has been on for some time now.

There are many things that Kristen can not do. But, Oh how she can melt your heart in a second. It is a true gift to watch when her body allows her to be feeling well. How precious are the times when her fingers work so hard to try and create her masterpieces, when her mouth curls up into the sweetest of smiles, when she reads her recently written stories or poems . What a gift she is! A life so limited in many ways but one that knows no limits with the impact she has on the countless lives she has touched! Happy Birthday Sweetheart!

As we celebrate her 17th birthday, none of us really know what the future holds but we can all hope in the one who holds the future. I am certain that the same God who got us through all the yesterdays will be the same God who will get us through each today and every tomorrow. I would to like thank all of our family and friends that have provided so much support to us through the years, and to all of our new CB and Happy Mail family that pray and offer support to Kristen on a daily basis. I've once read that Courage can be defined as: “spirit, determination, and bravery”. But have you ever wondered what Courage looks like? I think that the Kristen fighting this battle epitomizes the true picture of that word. She and others like her are the real hero’s that we honor in this war.

"So be strong and take courage, all you who put your hope in the Lord" Ps. 31:34

Kristen and our family would like to thank each and everyone of you who have remembered her special day with beautiful cards and notes. You are all very special to us. Leaving you with a quote I find meaningful: “Gratitude unlocks the fullness of life. It turns what we have into enough, and even more. It turns denial into acceptance, chaos to order, and confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow.” --Melody Beattie

Love and Best Wishes,

Joanne and Family

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Wednesday, November 22, 2006 10:08 PM CST

Dear Friends,

When we count our many blessings; It isn't hard to see that life's most valued treasures are the treasures that are free. For it isn't what we own or buy that signifies our wealth. It's the special gifts that have no price: our family, friends and health.

I'd like to take this opportunity to tell you just how much your friendship and love means to me.

Many of us have lost dear friends and loved ones this past year. In times like this, it gives us a chance to stop and reflect and think about what is really important to us in this life; Just how precious and fragile it is, and to not waste what time we are given with the special people in our lives.

For myself, it is the gift of family and friends that are the riches in my life. Those precious times that we hold dear to our heart and memories and special moments that can never be replaced, neither by time nor all the wealth in the world. Whether you have planned a grand feast surrounded by friends and family, an intimate candlelight dinner for two, or a simple frozen dinner or takeout, it is not really the edible food, but rather who we share them with that counts most of all, and to me, this is the true value and meaning of Thanksgiving.

I will be thinking of each and every one of you during this season of Thanksgiving, and even though we may be seperated by miles, you will be close to me in my heart. I give thanks for you all, friends and close loved ones. You have touched my life in many ways and I am a very wealthy individual for this.

May you all share a warm and wonderful Thanksgiving with those you love and continue to discover and live the life you were meant to live.

God Bless You all,

Joanne and Family

Tuesday, November 14, 2006 10:20 PM CST

Thank you for the kind and heartfelt notes in our guest book and the cards. When the girls receive them in the mail they get so excited. You bring happiness to us. I have been so busy the past few months with doctor appointments and everything that goes with it that I haven't had a chance to thank you personally. It is long overdue but I hope you will understand. You reach out to us from across the miles and bring love. Love to a family that many of you have never even met. A sweet, unconditional love that is so pure. Don't ever think for a moment that your love loses its power through the mail or written word. You are truly angels to us. There is so much isolation and desertion that comes with life threatening diseases. Life goes on, but there are many who would like to forget that we exist.

As I write this, I cant help but get emotional. I am angry but grateful, sad but hopeful, and humbled by the blessings that we have everyday. If you knew Annalies and Kristen, you would be charmed and delighted! They are still so wonderfully innocent. So eager to please (usually). Often they are "normal kids" who bounce up and down when they want to tell you something exciting. In many ways they are vibrant, happy young women making the best of the challenges they confront each day.

Facing an illness as Annalies and Kristen have has completely changed our lives. It is absolutely heart wrenching watching your child have to face their fears and endure the discomfort of various procedures and the disease process. You learn how precious life is and how each day with our children and loved ones is a wonderful gift not to be taken for granted.

We are truly blessed to be their parents and we feel so lucky to have them in our life. We thank God for giving us our children everyday. They are very special miracles and they have taught us so much during this experience.

We have put everything in God's hands and we know that he is walking with us on this journey to restored health. We feel his presence and are thankful for the many blessings he provides us with everyday. We also thank him for giving us such an amazing support through our friends and family, and it has given us strength and renewed our faith.

They are my strength. After driving over 14 hours last week, they commented that it was worth the trip. We spent a portion of last week at Cleveland Clinic for studies. When the metabolic disease specialist calls to request studies long after a clinic visit you know they are important. I still can’t sort out what he is looking for or the potential implications. I actually asked one of our Critical Care attending physicians and she didn’t know what direction this was taking either. The studies specifically look at how the mitochondria utilize or metabolize oxygen. To complete the trip the girls took Tom to see the Rock and Roll Hall of Fame. This was his first trip to Cleveland. The featured artist was Tom Petty. Tom's all time favorite!

We have a brief trip to Wisconsin over the Thanksgiving weekend. Both girls commented that this is two years in a row that Thanksgiving weekend involved some type of travel to Children’s Hospital. Oh, well. At least no work lost for this trip. We’ll be spending some time with two different families. Josh and Katie will be joining us. I really appreciate the time we have to spend all together as a family.

Personally, I haven’t heard any additional news in regards to the job interview I had in Memphis. Trusting that if it is God’s will a position will be offered. If not, I will wait until the employment He has for me is offered. In the interim, I’m thankful I still have a job. Many of my friends from work have been laid off over the past two weeks.

Do you know what hope is? It's not a prescription. It punctuates our laughter and simmers under sorrows. It's dreaming of tomorrow. It's pushing past the impossible. It's questioning the answer. It's rumors of a break, a true roller coaster ride. It's perfume for the spirit. Take my hand...come...it's magic and it's free. It's not in an IV. It sparkles in our tears and disputes our fears. It's reaching past today and trying a new way. It's pounding at the door and always seeking more. It whispers a cure of remedies unsure. It's candy for the soul and to share it makes you whole. Sharing hope with you today.

Ending with a scripture that gives me HOPE in an amazing way . . .

"That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. For our present troubles are quite small and won't last very long. Yet they produce for us an immeasurably great glory that will last forever! So we don't look at the troubles we can see right now; rather, we look forward to what we have not yet seen. For the troubles we see will soon be over, but the joys to come will last forever."
2 Corinthians 4:16-18 NLT

You are our angels. Wishing you a Blessed Thanksgiving.

Sunday, November 5, 2006 9:24 AM CST

Dear Prayer Warriors,

Once again I come to you with such a grateful heart for all your prayers and words of encouragement for our family.

Overall, all of the interviews I had Thursday seemed to proceed extremely well. The six individuals are meeting Monday to decide if a position will be offered. The professional recruiter called before I arrived home and said the company rep had called him and advised him NOT to pursue any additional candidates. One of the nurses I met with strongly suggested that if a position is tentatively offered I NOT resign from my current position until the second phase of processing is complete. She indicated that many things can occur during that phase in regards to physical exam, budgets, the FDA rulings, etc and until a firm contract is offered to set tight and proceed with the process. The position has travel about 3 days/week, usually in and around Chicago with a few in Milwaukee or Indy and occasional to CA to assist the nurse based there. Honestly, in my career, when interviewing, I have never been treated as well as throughout this process.

I did have a major injury to my pride and embarrassment. My walker sustained damage in the cargo hold en route. As a result the wheel caught a crack in their drive and I fell immediately before meeting with anyone (accompanied by the HR rep). I proceeded as usual and made it through the day. Hoping this snafu won't negatively impact their decision. One of the docs I work with felt it might indirectly help as it clearly demonstrated I do persevere in the face of adversity.

My boy, Skittles, was on his best "on the job" behavior and everyone seemed accepting of him. Trusting God, that my physical challenges won't prove to be detrimental. They definitely know that he travels and works well with no obvious impact on the business at hand. I'm so proud of him! His superb training was very evident to everyone.

I'll let you know as the process proceeds and continue to trust that His will be done.

On a more serious note I’d like to ask you all to continue to remember to pray for the Annalies and Kristen. We are in serious prayer about the next step to take for them concerning their diagnosis and potential treatment. Dr. Cohen's office called. They are requesting subspecialized, NEW testing with samples taken in Cleveland and evaluated at Mayo. There is a possibility we will retuen to Cleveland early just to have these studies done so results would be available when they see Dr. Cohen in February or March. The nurse left a message so I don't know if this is based on results from the additional labs he requested that were done urgently at CHW a few weeks ago or if this request is based on something else. Just a couple of weeks ago, Neuro-ophthamology requested a rapid return as weel, based on his eye findign in Annalies. Please take time to pray about this .

Annalies had a grand mal seizure this week. She hasn't had one for several years. Her memory seems worse lately and her ability to stay awake has not been at baseline, She says she would be happy with less muscle pain and fatigue.

Kristen has a job interview Monday evening at our libtrary. The part time position involves shelving books. With her love of literature, it could be ideal for her. I admire her drive and passion to pursue her dreams.

In Matt. 18:19-20 it says, “When two or three believers agree in prayer, God chooses to respond to their unity by making His powerful presence known in their midst”. So there is power in the prayer of agreement! I will keep you updated on how he is doing.

None of us really know what the future holds but we can all hope in the one who holds the future. I am certain that the same God who got us through all the yesterdays will be the same God who will get us through each today and every tomorrow.

Psalm 118:24
'This is the day the LORD has made. We will rejoice and be glad in it.'

Blessing to all,

Joanne

Saturday, October 21, 2006 6:28 PM CDT

To our precious friends and family,

“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel”… Maya Angelou

Wow, isn’t that quote so very true? I’m writing this update now “feeling” all the love, prayer and encouragement that was sent to our family throughout the past few weeks. I’m so grateful for each one of you!

Thanks so much for stopping by to pay us a visit today or to read this post. I pray you will be encouraged, and share the hope we have found after reading about all the wonderful things the Lord has been doing in our lives. As we have walked along in our journey, we have had the honor of meeting so many families that have demonstrated what true character really is. I learning more everyday about how important our attitude frames the way we see and deal with the pressures of life. I’m just so grateful for all the heroes that surround us and teach us what if really means to trust and lean on the Lord each day!

Now let me share with you some very exciting things that happened in our home. Get comfortable! (Don’t say you were not warned!) We were very blessed to receive a generous check from our church family. That check has covered almost all of our very past due utility bills and will help us maintain our telephone and electric service at least one more month. We were also priviledged to receive a generous basket of food from an organization called Operation Blessing. The staff at Operation Blessing included treats like raisons which we haven't had in ages. The kids love them and they are a very "healthy" snack. Our son was thrilled to see he would be able to have food other than eggs, bread, pasta and rice for a while. At was such a relief for me to feel better about our situation. Even Tom smiled and said, "WOW, what a praise"! Positive sign his depression was broken for a least a short time. When I am reflective, it is a miracle that we are still making it from day to day. Our family income has been reduced by approximately 50hroughout this entire year. Wish trips were arranged for the girls which provided the vacation respite we needed to regroup and relax.

In the book of 1Thessalonians 5:16-18 the Bible says: "Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus."

OK, let’s get to business. Annalies and Kristen's results! Overall, we received a discouraging report! Everything has NOT remained “STABLE”. There are significant abnormnalities in the metabolic laboratory studies that have finally been reported from Cleveland Clinic. As a result, all of the metabolic specialists requested additional studies be run last week while we were at Children's Hospital of Wisconsin.....now another wait. Annalies' Neuro-ophthamology appointment was amazing. The specialist even did a noninvasive optic nerve biopsy. The findings were NOT what we were hoping for. She is losing her peripheral vision. Instead of seeing her again in a year, he called and requested an essential follow up visit in 3 months. In the interim, he will be speaking with several of the knowledgeable physicians on our team for suggestions and advice. Kristen's gastric emptying scan was normal but her GI related problems are persistant and additional studies are being decided. Hopefully soon. Kristen has been feeling way to punk for my comfort. Hope to hear recommendations in this regard early next week. If you would like to read a well written article about Annalies, Kristen and their service dogs, this is the link: http://www.ecad1.org/docs/AARC.pdf

On to the employment front. I was quite encouraged to hear I was in the top running for the position with Berlex Labs but it a candidate with MS Clinic experience was offered the position. Tom did not recevie a call for a second interview with Petsmart. Hopefully, something else will be listed in the classified ads this weekend. I posted my cv on Career Builders last week. This morning I received a call from a Professional Placement Agency that is seeking an individual with my level of experience and background for a home based research monitoring position. Jerry will present my portfolio to the Director of Medical Research when he returns to his office on Thursday. If he is interested they will arrange a telephone interview and possibly a formal interview in Tennessee later this month. My heart is flying on angel wings this evening. I know God has a plan that will meet my needs and those of my family. I just have to keep trusting and be patient. My patience is not that of a saint!

God is always working in ways we do not see, and it brings me comfort to know that ultimately He is in “total control” of our lives. All that is required of us is to trust in Him! That’s the biggest three letter word I know - “ALL”. I’m still working on trusting everyday, and feel I have a long way to go until I arrive!

So, I hope you enjoyed reading my epic as much as I enjoyed writing it. I just had so much I wanted to share. I would to like thank all of our family and friends that have provided so much support to us through the years, and to our church family and CB friends that pray and offer support our family on a daily basis. I've once read that Courage can be defined as: “spirit, determination, and bravery”. But have you ever wondered what Courage looks like? I think that the children and adults we have met in this battle epitomize the true picture of that word. They are the real hero’s that we honor in this war.

"So be strong and take courage, all you who put your hope in the Lord" Ps. 31:34

Prayer requests: *that the employment God has planned for Tom and me becomes evident to those in the position to make a decision *that the girls stablize clinically and/or the physician have the wisdom to know what studies to order and treatment to initiate *that I do not get injured as a result of working without reasonable accommodation while seeking other employment *that Joshua is able to continue his studies and maintain part-time employment *that the needs of our family continue to be meet through God's guidance and grace

Trusting in Him,

Joanne

Sunday, September 24, 2006 11:44 AM CDT

From a medical standpoint we keep getting many questions but little answers. From a spiritual standpoint our journey with our daughters has been a true “leap of faith”. It was during Kristen's first stay in the intensive care unit that I remember looking down at my precious baby and begging God not to make me say “goodbye” when I had just said “hello”. I didn’t understand what or why this was happening. For years I had prayed that God would keep my children safe and healthy. Losing any one of them was something I knew I could never make it through. I remember asking God that day why he would do this or allow this to happen to us. While I asked God for answers that day what he gave me was more of a question. It was as if God spoke directly into my heart and said, “Do not put me inside a box and tell me what I can and cannot do. Do not tell me that I can get you through THIS but never THAT. Do not limit who I am. I am your God, the maker of all things. I can get you through ANYTHING, even this, if you let me. Will you let me? Will you trust me?”

Friday we received word that the labs that were drawn when we went to Cleveland Clinic in August demonstrate either marked progression of disease or significant worsening of related metabolic function secondary to mitochondrial disease. Dr. Cohen requested additional labs be drawn when we're in Milwaukee in October. They are again entertaining the thought that both girls have a (likely multiple given earlier results) secondary Fatty Acid Defect, something called GA II or a peroxisomal disorder. I discussed this with one of the docs at the UMDF Conference and he felt strongly that these other issues are all secondary to progression of mitochondrial disease. How I wish there was some effective way to slow this process down. Annalies is just so fatigued and tired with unrelenting muscle pain. Her left side appears weaker on grasp checks, etc again too. Kristen has been complaining of just feeling "off" with increasing headaches and abdominal pain. Very nonspecific, but disconcerting for her. Hoping the additional studies will shed some light on the process involved and give us additional treatment options. Once again she's been asking if she will die soon. I can only respond that I honestly don't know. Her life is in God's hands. Sure wish she could verbalize what is making her feel this way or question the quantity of her life on earth.

My request for reasonable accommodation at work was denied by Human Resources. I'm now searching for alternative job opportunities. I have an interview at 3:30 tomorrow for a home based teaching position for newly diagnosed patients with Multiple Sclerosis. A position such as this would allow me to be more available for my girls as their needs change. Trusting that if this is God's plan for me at this time that a position will be offered. If not, I will continue to explore other opportunities. I saw my Rheumatologist on Thursday evening. I'm awaiting the results of multiple x-rays. I've had unrelenting pain in my right hip for two weeks. His suspicion is that I've developed arthritis in that joint because of the severity of the femur fracture two years ago. On a positive note, my lupus labs looked "great" for the first time in ages. Yeah!

Tom is still job hunting but very discouraged. His plant closed almost a year ago. He's appllied for well over 130 jobs and nothing is being offered. He had one job for three days and hated it. It was a real eye opener as he realized he could not handle the pressure and work load as the 20 year olds did. Praying something will open for him quickly. Finances are grim and the thought of having to potentially sell our house is too overwelming for me to consider right now. Hoping we will be blessed with a food basket at Thanksgiving. That would be a big help. With careful use, I'm just now out of the staples we received last Thanksgiving and Christmas. If only those who donate items knew how much they mean to families like ours.

Hope I'm not rambling, but, quite honestly - writing helps me as I work my way through this journey. I think about so many things and it helps tremendously to write it all down and talk it over with all of you. For now, I do trust God. And I can tell you that through this journey, day by day, I have learned to know Him and love Him so much more! This isn’t a path we would have chosen. But it has become one that we have chosen to accept. None of us really know what the future holds but we can all hope in the one who holds the future. I am certain that the same God who got us through all the yesterdays will be the same God who will get us through each today and every tomorrow.

Thanks so much my friends for checking on us! I know that it is sometimes difficult when times are tough. Please know how much we appreciate your continued support . . . thanks for sharing our struggles and challenges and for the many prayers that continue to lift our family up and give us HOPE! And thanks so much for all the notes, scriptures and quotes you send us - we enjoy reading all of them. I thank God for placing each of you into our life - may God bless you abundantly!

Ending with a scripture that seems fitting. . ."We don't yet see things clearly. We're squinting in a fog, peering through a mist. But it won't be long before the weather clears and the sun shines bright! We'll see it all then, see it all as clearly as God sees us, knowing him directly just as he knows us! But for right now, until that completeness, we have three things to do to lead us toward that consummation: Trust steadily in God, hope unswervingly, love extravagantly. And the best of the three is love." 1 Corinthians 13:12-13

Trusting, hoping & FROGing,

Thursday, August 10, 2006 0:07 AM CDT

Time is flying by and I really wanted to do an update before leaving for a series of clinic visits out of state.

We are leaving for Cleveland Clinic tomorrow morning. Annalies and Kristen have appointments with the mitochondrioal disease specialist on Friday. I've been trying dilligently to try and keep our expenses down since our income has been significantly reduced for many months. A gift from an unknown church friend was set aside to help cover some of the travel related expenses. I'm so thnakful right now. When I called the Ronald McDonald House I learned they have NO rooms available (and none likely to open up as the wait list is close to 20 families). I spent three hours calling hotels to learn they were booked and had nothing to offer. In desperation, I called the hotels close to the clinics which I hate to use because they are so expensive. For this trip there is NO choice. They have a room available for both nights. Breakfast is included which will help, but the two nights will use the entire gift. We are flying home Saturday afternoon and then immediately driving to Milwaukee for clinic visits there. Fortunately, Kathy's House, the hospitality house in Milwaukee, will have a room and they are willing to accept partial payment given our current circumstances.

I have a long list of questions for the specialist in Cleveland. Did you ever have a stretch of time when things are just "off" from base,line, medically speaking? That is where both girls have been for a couple of months. Nothing dramatic, just "off". Add to that getting no assistance in regards to the endocrine issues from the new doc in Milwaukee, so I really need help from the most knowledgeable phsyician. Also, hoping he can shed some light on the new mito meds being discussed on the news. I'm willing to try almost anything that isn't likely to harm and may help. THere has definitley been disease progression, albeit slow, and that's disheartening.

When in Milwaukee, both girls are being admitted for sleep studies Sunday evening. Monday, Tuesday and Wednesday have clinic appointments filling almost each day entirely. Annalies' friend. Larissa, will be traveling to Milwaukee with us. She has graciously agreed to help me with some of the basic housekeeping needs while traveling and with care of the service dogs while the girls are hospitalized. The dogs could stay with them in the lab, but one of the techs is very allergic and it seems appropriate to keep the individual responsible for monitoring their status wake and comfortable. We are skipping some appointments that the girls would normally have as the providers do not accept Illinois Medicaid. Since that is Kristen's only insurance right now, and we can't manage almost $1,000 in extra bills, we are holding off until a later time.

Tom had a job interview on Monday. It is for a part time (no benefits) position with a trucking company. They said, if they are interested in him, they will call back the end of nect week to schedule another interview. Honestly, at this point in time, a position that pays something would be a whole lot better than nothing. Praying he is offered a position, that it is an entry position which could quickly lead to a fulltime position with benefits.

The almighty BCBS of IL has not made a decision regarding Annalies' homecare. This lack of information is compromising her State benefits. We have actually found two young women who are willing to help care for the girls during the night. The funding is under the State homecare benefit which can't fully be initiated or used until BSBC makes a decision.

I'm still working from home. At least I'm trying to accomplish as many of my work responsibilities as possible with no access to any of my hardcopy files or resources. Trusting the delay in learning the HR decision is due to the mechanics of implementing a reasonable accommodation plan and they will be in compliance with Federal law (the ADA in regards to service dogs). I'm trying to look at this as a blessing in disguise. I've had NO night nursing support for the girls in almost three months (so I'm doing all of their night care), it has saved on our fuel expenses as I'm only traveling to see patients for followup visits...not driving into Chicago every day...I haven't been out in the high heat and humidity trying to breath and walk. And, it has given Skittles and me the opportunity to cement our handle/service dog relationship.

Biggest blessing of the week. I received a letter that Special People in Need Foundation will be sending ECAD a grant check of $3,000 toward the cost of training Skittles. Continuing to pray that ADUC will vote in our favor and grant the remaining monies due. ECAD charges approximately one third of the actual cost involved in the training of the service dogs. Skittles is a big help with my mobility and retrieval of needed items. Most of all, he makes me laugh. His puppy antics continually amaze me. Laughing can be so good for the soul.

Prayer requests for the coming weeks:
*safety in travel, both in the air and on the ground
*productive clinic visits
*no additional unanticipated expenses
*Tom will hear positive news in regards to the job, if it is God's will
*thankful hearts for the blessings we have received

Ending with a scripture . . .

"The Lord is righteous in everything he does; he is filled with kindness. The Lord is close to all who call on him, yes, to all who call on him sincerely."
Psalm 145:17-18

"Asking WHY can leave you with overwhelming feelings of disappointment, even anger. But talking to God fills you with hope. He does not always give you the answers you seek, but he does gently remind you that every life - no matter how brief, no matter how challenged - is a MIRACLE. God is always at your side, helping you to see through the tears to the promise."
Moments of Peace in the Presence of God

Sunday, July 23, 2006 11:57 PM CDT

This Thursday, July 27th, will be Annalies' 21st birthday! 21years ago our eldest daughter was born. She was placed in our arms on the 31st. She was so special, so beautiful and she is very loved! Happy Birthday, sweet Annalies! We are so proud of you!

Joshua and Katie will be taking Annalies out late that evening to celebrate- all of our family we will have dinner together, cake and presents! Of course she would rather be traveling - but we that will happen again in August so we will have the best day possible, at home! And well, as long as there are presents - she will be happy! She asked for a special DVD set and hopes to spend the day watching it.

Praying For You, Annalies

A little girl with a life ahead of her
Reaching for her dreams
Looking out for the people close to her
Making memories

Then one day mitochondrial disease came along
That knocked her off this path
Many doctors said it wasn't looking good
She didn't have much chance

So we prayed that she'd make it through
And with faith she'd be saved
Who knows why it happened to her
We're gonna keep you strong
We're gonna keep on praying for you

And wait for the days when you will smile
And you will prove
That God has a plan
And he isn't finished with you

Through it all we know that you've been strong
And fought this all the way
Being led by the prayers of everyone
Who care enough to say

We'll never leave your side
When you need us the most
You showed us there's always a way
If you have the heart, yes Lord,
Annalies, we are praying for you

You have changed the lives of everyone who knows you
And brought us closer through your faith
And I can't wait to see just how our God will use you
In His way, in His ways

Yes we're praying for you
Always amazed by the light in your eyes
As you prove
That God has a plan, yes,
There's a plan, oh,
God has a plan...for you

“Miracles happen when we intercede on behalf of others!” That is one of my favorite quotes. And we have seen so many miracles in Annalies and Kristen's lives - thanks to your faithful prayers. Our daughters still have such a long hard road ahead of them - filled with many obstacles. So we ask that you please pray constantly for them and , us, as a family. Pray for wisdom for their physicians. Pray for comfort. Pray for strength. Pray for LIFE! We believe so strongly in the power of prayer and we ask that you join us this week - of Annalies' birthday - and pray persistently for medical stability while on earth. Focus on restored, perfect health. Speak to our mountains . . .In honor of Annalies' birthday, we ask that you bend a knee, light a candle and pray without ceasing for us. BELIEVE that there will be improvement and praise God for He is the God who HEALS!

Thursday, June 29, 2006 11:09 PM CDT

I'm sorry it has taken me so long to update. To say we've been busy is putting it mildly. Are any of you, like me? Sometimes my life seems a mess, so incredibly busy. I open mail but it ages on the countertop (often beyond perfection). Add email! I read many, glance at others and get to the tasks at hand and whoops! The deadline has past and I've missed it :( Now on to the long awaited update.

The girls and I were only home from New York for a week before leaving to attend the UMDF Conference in Atlanta. There were a lot of interesting presentations and while nothing earth shatteringis happening, there is a lot of research in development that might be helpful in the future. There is currently a Co Enzyme Q10 study occurring at several pediatric hospitals in the US for children up through 17 yrs old with mito. There is a drug made by Edison Pharmaceuticals which not much is known about yet. Trials have not yet been started, thus they don't know the positive or negative effects it might have on patients. However, this would be a "super" anti-oxidant type of drug--kinda like a powerful CoQ10. Unfortunately, it takes years for some of the research to start, possibly another 5-10 yrs before it may be available to patients if it passes all the trials. Some of the other research they're doing is on patients with specific types of mito that causes a mitochondrial iron imbalance. Research in alzheimer's and huntington's disease continues thinking these studies may eventually filter down to help the general mito population.

One of the well known mito doctors suggested patients exercise caution with medications side effects as the effects of most meds on the mitochondria have not been studied. IMy girls seem to get really odd side effects to meds. There were sessions on the neurological complications of mito, Basic Mito Management, Service Dogs (our presentation), The Medical Home, and Maximixing ER Care, Journaling (most interesting to Kristen). It is extremely helpful to meet other parents and families at the conference. Annalies and Kristen greatly appreciated the opportunity to meet several other young women (thank you Malisa and Adrienne). You each give us hope for the future.

I had an opportunity to speak with several of the mito doctors one-on-one during breakfast in the lounge. These conversations seem to be the best part of the conference. Two mito specialists suggested I send the girls records to Boston for review and a formal consult to bridge the gap until Dr. W. resumes limited clinical practice. There are just too many issues, new ones and old, falling through the cracks. I spoke briefly with a member of their care team in Milwaukee and this was supported. I plan to send the records and verify the positive response when we are in Milwaukee for clinic visits in August.

Annalies is transitioning to the adult home care waiver. That process has been filled with bumps and pitfalls. We still don't know what level of care will be authorized and/or if her mito related medications will be covered by Medicaid. One worked suggested we go back to getting further in debt or cut back on other expenses (With Tom out of work, I've cut back as far as I can without sacrificing foods permitted on the girl's diet, utilities and gas in the car).

I'm currently working from home while occupational medicine finishes their reasonable accommodation evaluation to permit Skittles to assist me while at work. It is taking far longer than they had projected. In some ways it's a blessing in disguise as we lost ALL of our night nurses when the agency was acquired early in June. I've explored another agency but they are NOT willing to work with our out of State physicians and I'm not willing to compromise care to switch to less knowledgable physicians in Illinois. The downside is I'm getting further behind with the list of responsibilities tha I can not complete from home given all of my patient records are at the University. Maybe everything will fall into place for return to the campus after our nieces wedding July 8th in Columbus. We are all looking forward to seeing Dave's family again with the opportunity to visit.

Earlier this week I went for an eye exam. I was referred to an Ophthamologist as there is evidence of eye related insult from the medications I take to control my Lupus. I have to arrange an appointment but it seems additional medication will be required to control some of the problems identified. The hip pain I felt after stumbling at work when I met with Occupational Health is slowly resolving but some bone pain continues. Being able to limit time and distance walking, while working from home, may be helping this situation as well. For a while I honestly wondered if I sustained another fracture based on the intensity of the pain.

Special People in Need requested a formal update from ECAD yesterday. They will finally be having their Board meeting where a decision will be made regarding a contribution toward the cost of training Skittles. ECAD sent a nice letter supporting the placement and financial need. He's such a blessing, so I'd hate to lose him because the money isn't available to cover my portion of the cost. A generous benefactor gave us a gift that covered the required deposit prior to the start of bootcamp. I'm extremely grateful for that gift, ECAD's willingness to place him pending funding and the big improvement in my life since Skittles became by four footed partner. He makes me laugh and recently, I've needed that as much as the physical support. A second foundation for disabled nurse's had initially indicated that they might be able to help in some small way, but I haven't heard anything from them since the initial packet of information was submitted.

Tom is in the midst of a serious depression. He has applied for well over 100 jobs with no response. Someone suggested a cleaning position which might be fine if we didn't need health insurance. Kristen currently has no private health insurance which is limiting her care significantly. We have delayed or canceled several clinic visits until new insurance becomes available. I can no longer balance the budget either as the loss of income is well over $1,000/month. Tom's psych physician only agreed to reorder his medications (that hasn't been working well) for three weeks with the understanding that he will pay the costs to see her for a refill authorization. We still have to figure out how to pay this bill, too, as my BCBS only pays 60or psych.

An unknown friend sent a gift through our church which will cover our expenses in Milwaukee and Cleveland for scheduled clinic visits, provided I don't have to use the funds for electricity or water before then. We've had major plumbing problems recently which have added to the stress. First a village water main broke so we couldn't use the water coming into the house for five days (the village said it was safe but you could see black particle floating in it and it tasted terrible). Then, twice our sewers backed up into the bath tub requiring plumber visits.

I have learned to trust God completely. He is able to see the bigger picture and I truly feel as if His guidance is necessary to help us through so many hardships. And I know that God is using us mightily - turning a horrendous journey into a journey filled with hope and FROG-ing! And we will continue to trust God to heal our physical and emotional hurts and show us where He is leading and help us find our way in this world without of challenges. Thanks again so much for praying with us. I can’t tell you how truly moved and touched we are with each guest book entry. You literally bring us to tears with your kindness. I am just amazed at how many lives are touched. We know that no matter how difficult life has been - it has been a life filled with FUN, filled with INSPIRATION, filled with HOPE, filled with LOVE and filled with great PURPOSE!

With that being said, I am asking that all of our “prayer partners” join us in praying so hard for our over whelminh issues. Please pray specifically for:
*full funding for Skittles
*lifting of Tom's depression
*that Tom will resume his job search with success in finding the job God has planned form him
*that work will determine Skittles is an appropriate reasonable accommodation with minimal disruption to the work environment
*that wisdom prevail as decisions are made regarding Annalies and Kristen's progressive health issues
*that my physicians will know the best course of treatment in regards to my vision
*Then let’s shout our praises to the Lord - giving Him all the glory! :0)

“Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go for to you I lift up my soul.”
Psalm 143:8

In Faith Believing,

Joanne

Friday, May 26, 2006 8:33 AM CDT

Greetings to you, our awesome friends,

Thanks so much for stopping by to pay us a visit today. We pray you will be encouraged. 1Thessalonians 5:16-18 says: "Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus."

We returned from East Coast Assistance Dog team training late last week. Skittles, our newest addition, is settling in nicely. Skittles is wonderful! He doesn't like to fly but I expect that will improve with additional flights. (We have two in June to Atlanta and two in August to Cleveland). Fortunately, he has two very experienced service dog models to learn from. Thank you, Brooklyn and Stitches. As soon as I can coordinate the workings of our home computer and caring bridge, I’ll post some photos of my boy.

He has settled in to my work routine. He knows the outer corridor office door and stops as soon as we approach it. I'm working on "say hello" so he knows it is ok to sit and shake when medical center staff approach. He LOVES the positive attention. At first I was worried that he wouldn't want to lie around while I'm working at my desk but he doesn't seem to mind at all. He runs with the other dogs early in the morning, when I get home and twice each evening. He's also learning the location of each of the door push panels for disabled access. I'm hoping he patterns them over the next few weeks. He's smart so I know he will get it down pat soon.

We have realized he is a SUPERB alert dog. He is very aware of the sounds around him and takes notice rapidly. He paws for alarms and seems to alert for my husbands seizure type activity when it happens during the night. He jumps up onto the bed and paws me. Forced Tom to set a doctors appointment (I asked him to but, you know men...denial is a nice road to travel until someone (in this case a four footed furry friend) repeated calls the problem to your attention. Thank you, Skittles.

Annalies last sleep study showed improvement in some areas and worsening in others. Dr. Rice has ordered significant changes in her ventilator parameters. He’s reducing supplemental oxygen and increasing pressures. Cognitively, she seems poor when no supplemental oxygen is given with a marked increase in headaches. I left a message for him to discuss the changes.

The labs from Froedtert came back totally normal. The exact opposite of the lab reports received from Mayo Clinic and Children’s Hospital. Several similarly affected adults have experienced similar findings with early signs of pituitary involvement. I’m getting really tired of consultants who refuse to respect the recommendations of the mitochondrial disease specialists. I’ll be extremely happy when Dr. Whiteman returns to clinical practice and we have another knowledgeable advocate. I have significant concerns as we face transitioning Annalies to adult medicine. So far, every encounter has been an unfruitful disappointment.

I would to like thank all of our family and friends that have provided so much support to us through the years, and to all of our CB family that pray and offer support to us on a daily basis. I've read that Courage can be defined as: “spirit, determination, and bravery”. But have you ever wondered what Courage looks like? I think that the children and adults we have met in these battles that epitomize the true picture of that word. They are the real hero’s that we honor in this battle. "So be strong and take courage, all you who put your hope in the Lord" Ps. 31:34

Monday, May 1, 2006 9:36 AM CDT

Hello friends,

We are home from Kristen's A Special Wish trip. We had a fantastic time and we are just so very thankful that we were able to go.

Kristen’s “heart’s desire” has been to meet Shirley Temple Black. Her second choice was a trip to Anaheim (Southern) California. Kristen’s dedicated wish granters tried for many months to arrange a meeting with former Ambassador Black. Since all indications were that this would not be possible, we changes the focus and prepared to travel to California. Kristen dreams of becoming an author, photographer or photojournalist as an adult, so her interest in California is old movies, movie and television production and broadcasting. Amazingly, Ms. Black called the evening before we left home. She expressed her regret that she was unable to meet Kristen, but wished her well. Kristen is thrilled beyond words!

Our family has been to Disney World in Florida when I have work related meetings there but had NEVER been to Universal, California Adventure or Knott’s Berry Farm- so Kristen and Annalies were very excited! I can't even begin to tell you how excited the girls were …they eagerly anticipated this trip.

I must start off by telling you how AWESOME the wish granters from A Special Wish and Wishland in California are …truly amazing! They went out of their way to make the trip just PERFECT for our family and they provided everything we needed for our vacation. If you ever wanted to support a good cause - both these organizations are highly recommended.

Even though Kristen's wish was Anaheim or Southern California - they provided so many extras! We enjoyed two days at Disneyland, one day at Universal Studios, one day at Knotts Berry Farm and, Kristen favorites, VIP seating for a taping of The Tonight Show with Jay Leno, a VIP tour of the closed set of Desperate Housewives (a cooperative effort between Universal Studios and Disney Broadcasting) a bus tour of star homes, the Walk of Fame by Mann’s Chinese Theater, and Ripley’s Believe It or Not Museum.

The Wishland staff was very accommodating and helpful. Many of their volunteers were quite surprised that we were rarely away in the evening or for long periods of time. Neither of our girls had to energy to complete a full day of activity. For me it was somewhat of an eye opening experience. I knew their mitochondrial disease was slowly progressing in both girls but hadn't realized how much their energy levels have changed over the past few months. Both were very ready to rest and relax by late afternoon. You've actually met one girl that fell asleep on both rides at California Adventure and Universal (Annalies). This was a first for us anywhere. Annalies said she was just too tired to stay awake. Yet, she, and Kristen, had a great time. Couldn't ask for anything more. A trip memories and dreams are made of!

I leave tomorrow for New York to attend “boot camp” or team training for placement of my service dog. The girls will fly in on Mother’s Day to join me and introduce their service dogs to the new addition to our family.

As always it seems the Lord is teaching us to trust in Him completely. One thing I know for sure is the Lord never permits a test to enter our lives without giving us the spiritual tools and support we need to face up to the challenge. We never have to wonder if God will see us through a crisis. He is our Heavenly Father and He is intimately involved in every situation we face. "His grace is sufficient for us"! Yes, and we receive this amazing grace just when we need it. I pray the Lord will take his masterful and make something really beautiful out of the most difficult trails of your life.

I want to thank each and every one of you who have prayed, sent cards and letters and have left us encouraging messages. Truly each and every word ministered to us. We are just so grateful for your friendship. If you have not signed the guestbook, I'd like to encourage you to do so. We'd love to get to know you!

You all never cease to amaze me with your support, encouragement & kind words. I hope you know that although I can’t respond personally to every note - I appreciate them all so much! How I wish I had the time to write you all back . . . there are NEVER enough hours in my day! :) And so many of your names have become so familiar to me that I feel like I know YOU - it's like getting a letter from a good friend! Please know how special you all have become to us and how very much we enjoy reading your comments & prayers.

Sunday, April 23, 2006 11:30 PM CDT

We arrived in sunny California for Kristen's "wish trip". The itinery arranged by A Special Wish and Wishland is amazing. Kristen and Annalies are thrilled. The wish granters have planned for us to see a Tonight Show taping and a Desperate Housewives taping. True behind the scenes :) Krsiten will not be able to meet Shirley Temple Black but she did call and left Kristen a special message which is equally precious. It's the special thought that counts.

Thanks so much for continuing to check on our family and praying for our amazing daughters - you always lift our spirits and encourage us each day. Your kind words give us strength and makes us smile - which always reminds me of this scripture: “Pleasant words are like honey. They are sweet to the spirit and bring healing to the body.” Proverbs 16:24

Saturday, April 15, 2006 10:53 AM CDT

We returned from a very long week in Milwaukee. The news was a mix of good and disconcerting.

The good news is that all of the required forms to proceed with Kristen's "wish" have been received by A Special Wish and Wishland. Our family will be stayign at Wishland in Garden Grove, California the week of April 23rd. They are still trying to arrange a meet and greet with Kristen's requested star. If that isn't possible they are looking into an alternative arrnagement which would include visiting a movie ot televiosn filming and meeting the celebrity associated with that specific production. They are including a few days in Los Angeles to see the Walk of the Stars and several museums.

The appointments in Endocrinology were disappointing. The specialist is certain that both Annalies and Kristen do have Polycysatic Ovary Syndrome and thyroid dysfunction as another component of their mitochondrial disease. The frustration lies in treatment, which they are NOT comfortable initiating even with specific diresction from one of the mitochondrial disease specialists. This physician was also the third in six weeks to comment on the abnormalities in Annalies renita and/or retinal arteries. A visit to a new neuro-ophthamologist is clearly in order. Now to find one that will accept our insurance.

Annalies' sleep study provided additional insight in her worsening sleep related issues. The sleep lab techs had to adjust her ventilator parameters which means her values were below the minimum acceptable limits set by our critical care attending. Even with the adjusted parameters she feel asleep for three of five naps the next day. The physician as hoping for none. Now he will have to determine how to additionally modify other medications and treatments. We left the sleep lab with instructions to call the attending physician no later than Monday.

The dermatology visit for Kristen was productive. They have developed an acne treatment plan that should be well tolerated and not interfere with other medical regimens. Kristen was instructed to go shopping for a spring hat and new protective clothing. She is looking forward to a few mall trips before leaving for California and fun in the sun.

I leave for New York to meet my service dog in two weeks. I have only succeeded in raising a small portion of the required funds and I'm praying several of the foundations that requested additional information will vote in favor of supporting this adaptive or assistive technology. We have peace in regards to this decision and God has opened all of the doors leading up to this point. Trusting fully that the needs of our family will be met.

I hope you all have a wonderful Easter! Celebrate the day - finding lots of Easter eggs and eating lots of jelly beans. May you all feel God's love and remember the passion of Jesus during this time. I know I will be spending the day thanking God for all that He has done for us!

"For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life."
John 3:16

Thanks so much for checking on us and for all of the inspiring messages left in the guestbook! What an army of angels we have behind us to help us get through this journey. Please keep praying persistently and faithfully believing in Annalies and Kristen's medical stability! Together our prayers are powerful.

Believing,
~Joanne and Family~

Monday, April 3, 2006 9:19 AM CDT

Hello friends,

I have soooooo much to share with all of you . . . But know that it is all GOOD! I hope you are ready for some good news because we have had one blessed week! "Praise God - from whom all blessings flow!"

Our days have been full of sunshine & rainbows! (Hopefully there is no more rain in the forecast!) :) Annalies and Kristen have been full of laughter, silliness and happiness - couldn't ask for anything more. I am in awe of them daily - how they enjoy LIFE to the fullest and keeps smiling no matter what! I learn so much from them . . . my AMAZING daughters. I love them tremendously!

Next week we will have to make a pit stop by the hospital Tuesday through Thursday - UGH! Not exactly the way we want to spend our week (or my birthday), but, hopefully we will receive some answers in regards to the new endocrine issues and Annalies sleep abnormalities.

Last week the girls, with Stitches and Brooklyn, participated in a professional photo shoot for an article that will be published in one of the respiratory care journals. They are also writing poems and stories for a book that will feature teens and their dogs. The Starlight Prom was Saturday evening. Annalies, Kristen and two friends had a fantastic time visiting with old friends and making new ones.

Also, an additional praise to report! Kristen’s wish granters from A Special Wish called last week. They are finalizing the plans for her wish trip to Southern California. They are focusing on activities for teenagers, including Hollywood, movies, museums and, maybe one day at Universal Studios or Disneyland. Our family will be there a week starting April 23rd.

Thanks so much for checking on the status of my (Joanne’s) service dog and praying & believing! Your prayers have made miracles happen in our lives and we can't thank you enough! Please keep praying without ceasing and BELIEVING that:
*all of the required funding will be obtained
*travel will be uneventful
*the girls will be able to stay at ECAD (or close by) when they come to introduce their dogs on May 14th.
*our financial needs will be met as Tom is still unemployed!

Ending with a scripture that is just another way to end our perfect weekend!
"That I may sing a song of thanksgiving and tell of all your miracles." Psalm 26:7

"Take delight in the LORD, and he will give you your heart's desires. Commit everything you do to the LORD. Trust him, and he will help you."
Psalm 37:4-5

Thanking God for His miracles,
~Joanne & Family~

Wednesday, March 8, 2006 8:03 AM CST

"Far from a luxury, pets are now recognized as a necessity - friends who fortify us daily with their gifts of love, loyalty and laughter." Dr. Allen Schoen

52 days until I meet my service dog to be in New York at East Coast Assistance Dog's training center. When I last spoke with Lu she said the dog she has tentatively matched is a personality cross between Brooklyn and Stitches. One that will gladly lay beside my desk while at work and enjoy being there with me. Honestly, I'm so ready (physically and emotionally). I'm still praying for the financial portion of this process to fall into place. I've heard of several potential sources but nothing definite yet. I also learned that this will be a "mito" boot camp. Most or all of the individuals receiving service dogs during that boot camp are individuals or familiy members affected by mitochondrial disease.

Annalies, Kristen and I returned from Cleveland Clinic the end of last week. Dr. Cohen has requested a teleconference with the physicians in Milwaukee. Our case manager is trying to coordinate this for the week of March 20th. There are several issues which he would like them to quickly address including: an understanding of low calorie diets compliance and weight struggles secondary to "mito", the impact of inefficient sleep and the necessity to treat the emerging endocrine related problems.

Follow up appointments are scheduled in Milwaukee April 11th thru the 13th. Hoping those issues will be fully addressed during those studies and clinic visits.

The girls are helping the Illinois Mito Group prepare for a visit from Dr. Shoffner May 1st. He will be giving an educational presentation for physicians, support staff and families in Chicago. We are also finalizing our presentation on service dogs for the mito conference which will be held in Atlanta in June.

Annalies will complete all of the requirements for her diploma within the next 1-2 weeks. When she finishes we will formalize the plans for her to celebrate her 21st birthday in July with her pen pal, Tiffany, in Las Vegas. No liquor or gambling, just shows and amusement rides and time to relax with special friends.

This year the Starlight Prom will be April 1st with a Magical Mystery theme. Both girls are busy evaluating dresses, shoes, and formal wear for their service dogs. They always have a fantastic time with friends old and new and their excitement is contagious.

Tom is continuing his search for a job (one with benefits). Hoping to hear about a potential position at a new Lowe's within the week.

Hoping to update photos over the next week or two. Until next time, please continue to pray for our family and sign the guest book so we know you've stopped by. Your messages of support mean so much to each of us.

Thursday, February 16, 2006 12:42 AM CST

First of all I want to thank each of you who signed our guestbook. Your messages of encouragement, help, and love sustain us daily. I'm sorry that we can’t thank you enough personally. Hope you had a great Valentine's Day!

HOME SWEET HOME!! I've never meant that saying more than I do today. We got in from Milwaukee last night about 7:30. My mind is spinning with thoughts and mixed emotions.

Sorry it has been so long for an update to come along, we know that so many of you check in every day and we’re really touched by that. The past week has been filled with clinic visits and diagnostic studies in Milwaukee. I wish I could say that I was at the end of my rope. Truthfully, I am so far past the end of my rope that I cannot even see it when I look back. All I can do is inch toward God’s outstretched hand.

This series of clinic visits definitely yielded mixed results and more frustration. Many of the study reports are still pending, but will hopefully be reported before we leave for Cleveland Clinic on the 25th. Pediatric Endocrinology has deferred to Adult Endo at Froedtert. After trying for over a month that office still has NOT set appointments. Very frustrating as Dr. Whiteman wanted Annalies treated over a year ago and so far NOTHING. Now Kristen is showing clear cut signs of endocrine involvements as well. Plus, Cardiology has punted the fluid balance issue to Endo and I honestly believe our Critical Care attending is correct in his belief that the issue is cardiovascular. GI has verified that the girls’ diets are quite deficient nutritionally. He is now waiting for labs and radiology confirmation to initiate treatment. He also is sure the diet historie