Saturday, December 2, 2006 10:46 PM CST

November brought a steady change in Bill's condition. Updating the website has become almost too painful to do. Writing things down, seeing with my own eyes the words as I type them on to the screen makes it all too real. A couple of weeks ago Bill gradually lost the ability to sit and the electric wheelchair that he enjoyed so much became a burden to operate. He was becoming increasingly frustrated but he has such a determined personality that he would never give it up on his own. It was one of the hardest days of my life to have to even suggest that we not use it anymore. Ironically, I think he was relieved when I did.

Along with the muscle loss, Bill is almost completely mute. He knods and points but very rarely speaks a word. The other day he said my name for the first time in three weeks and I thought my heart would soar out of my chest at the sound.

Jokingly, the other day I asked, "Would you like me to read to you or would you like to reveal the secrets of your inner life?" I desire so deeply to know more about what he's experiencing yet since he is unable to speak in sentences any longer, I know the days of those kinds of conversations are no more. Still, I try and hope. I'm glad I did as he laughed at my question (another heart soaring moment) and with much effort said, "Circling...my...life", managing in just three words to say everything I needed to know.

Thursday, November 9, 2006 0:39 AM CST

Just can't seem to get myself to go to bed tonight. Bill and the kids went to bed early and for some unexplained reason I decided to rearrange the furniture in the living room. I'm having feelings reminicent of nesting, that restlessness a woman experiences just before she goes into labor.

As I think about this tonight, in light of all that's happening here, I think the pregnancy analogy is meaningful and to be honest, somewhat comforting. Pregnancies end in a rush of pain completely overshadowed by the greater reality of new life. This is the hope that enables a woman to face the long anticipation and agony of labor and delivery, the hope of seeing face to face the life that was conceived in her.

Reflecting on this further, I remembered the desire I felt when I was pregnant with Madeleine in 1997. I was due on January 1st and desired so greatly to give birth to her yet I was anxious about the pain of labor. Not only did having experienced it three times prior not calm me, the memories of the pain made waiting that much worse. But there came a point after the due date that the scales shifted and the pain of being pregnant became greater than the fear of going into labor

My desire for labor increased exponentially with every passing hour to the point where when the contractions finally started I was filled with a great sense of joy and anticipation even in the midst of all that physical pain.

My experience of being with Bill as he prepares for his death to be very similar to that of the end stages of pregnancy. I made a vow to be with him, be true to him, love him, honor him and finally help him to return to the Father. But I, alone, have no power to do this. My greatest help is Mary, the Mother of God in whom I am entrusting to take Bill straight to Jesus. Cooperating with her motherly love for Bill, I am helping him to be born into Heaven.

I am a midwife for his soul.

Sunday, October 22, 2006 2:40 AM CDT

Well, it happened. We sold our house in Brookings. We were so happy and so filled with peace about it all that we're still resting in the beauty of how happened. The day I finally poured my heart out to the Father about it telling him how I couldn't take it anymore and that I was going to start questioning my faith if something didn't happen soon the Grimsley family took a leap of faith and made us an offer.

No one but God, Bill, I will know the profound joy we experienced as we accepted. I told Bill I was so overwhelmed with an awareness of God's mercy that it had to be 3:33 (the Mercy Minute as some call it). As I turned to leave the room the clock caught my eye. Goodness, it was!

We discerned God inviting us to accept the offer with the same spirit of generosity that we were shown while we lived in Brookings. Right as we did that I went to the phone to call the realtor and there was a voicemail waiting. It was from Amy Grant who had called while we were making that decision! It was a beautiful confirmation that we were doing the right thing.

So this Friday we closed and from what I hear, the Grimsley's are busy moving in this weekend. How we pray for them as they come to rest in their new surroundings. If they experience even a fraction of the goodness and grace we did while we were there they will be happy for all eternity. Congratulations, Grimsley Family!

Tuesday, October 17, 2006 10:14 AM CDT

Jon 'The Laundry Boy' Sprang, dear friend and former co-worker of Bill's from Brookings, took the day off work to come to Mission Hill to see us yesterday. He took Bill to see Jacob's last football game of the season and stayed for supper. Some may remember him as the guy who lived with us a few years ago as an alternative to living with his girlfriend during their engagement. They're now married and have two beautiful children but our friendship was cemented during those months so having him here for the day really went a long way toward lifting our spirits and renewing our resolve to live in hope.

Not too many things have changed since I last wrote but the things that have are significant. Bill received an electric wheel chair the other day so he's able to get around with greater ease but it's also making for harder transfers. I pulled a muscle in my back a couple of weeks ago so we're working on getting a lift to help. Our focused goal is to keep Bill at home so my self-care is vital. I'm glad I've been taking this seriously for the last year as trying to get on top of it under these conditions would be as fruitful as finally doing the fixup work on a house right before it goes to on the market. It's too late for you to benefit from it.

Even though Bill has more mobility with the new chair he's struggling with feeling down. The other day, out of nowhere, he said he felt depressed. His blunt manner of saying so kind of alarmed me as he's generally less forthcoming about how he's feeling (guys...) so I asked in my most nursey voice, "Is that suicidal feelings depressed or I-need-some-Chinese-take-out depressed?" Thankfully, it was the latter. So, we treated ourselves to a nice dinner out and are both feeling a lot better.

Is there something bothering your loved ones that a little TLC could cure?

Tuesday, October 10, 2006 11:05 PM CDT

A friend sent us an email the other day quoting some of our past entries from when Bill entered hospice last year. As I read them the hope of that time came flooding back and reminded us that the path has been cleared and the foundation laid for what we are experiencing today.

One of the things she sent was a prayer we started praying in the spring of 2005. It came to us through Bishop Aquilla who prays it daily before the Blessed Sacrament. When I look back on it now, the fruit of that prayer just blows the mind. I'll reprint it here incase you'd like to add it to your life:

Father, through the Immaculate Heart of Mary, we abandon ourselves into your hands; do with us what you will. Whatever you may do, we thank you; We are ready for all, we accept all. Let only your will be done in us, and in all your creatures. We wish no more than this, O Lord. Into your hands we commend our souls; we offer them to you with all the love of our hearts, for we love you, Lord, and so need to surrender ourselves into your hands, without reserve, and with boundless confidence, for you are our Father. Amen.

We have reinstated this prayer into our daily lives. Through it may we all more deeply experience the peace that comes from trust and surrender to the will of our loving Father.

Today, Bill started listening to music again and I realized how helpful it could be in communicating things that he's not able to get out anymore. When I shared my idea with him he decided to make each of the children a CD with songs on them that communicate the things he still wants to say but isn't able with his own voice. Now that his picture project is done (he scanned all his grandma's photo albums into the computer and made discs for whoever in his family wants one) he's got time to start searching the sound files for songs that can speak for him now that he can't.

~"One day we will discover that no prayer of intercession, expressed with humility and faith was in vein." Fr. Raniero Cantalamessa.

Tuesday, October 3, 2006 10:23 PM CDT

Last Tuesday Bill had his monthly MRI. We've been so focused on other things that we almost forgot about it. In some ways we wish we had. The results weren't good.

The scan showed three new tumors in addition to the large mass we've been watching for over two years now. Two of the tumors are growing in the corpus colosum (the dividing line between the two hemispheres) and one deep within the brain. They're calling it a progressive glioblastoma multiforme now I think because it's spreading into the other side of the brain.

Dr. McHale pulled the chemo and Bill requested to be referred to hospice in Yankton. It was clear to us when he took the chance with surgery and this new treatment in November of last year that we were pulling at straws. Thankfully we received seven months of stablity from it. Now we move on to a different phase.

Hospice help arrived last Thursday and none to soon. I haven't mentioned it here but Bill has been experiencing a real loss of speech which is how we knew it was growing before we even got the scan results. Then this weekend he lost some use of his legs. Thankfully he is still able to transfer to the wheelchair but the car is in question especially since today he had a full seizure, something he hasn't had since his tumor was first diagnosed. Thankfully he was in bed when it happened.

The hospice Social Worker came today to get to know us and I told her how I just don't believe Bill is going to die from this. That everytime this situation has gotten worse something absolutely glorious has happened. I told her I'm expecting the glorious to happen and she said without skipping a beat, "Oh, and won't it be glory beyond glory when you walk into the loving arms of the Father?" Oh, if she only knew how that simple statement converted my heart and helped me to begin to accept that while Bill's life is here right now, he's not called to be here forever. None of us are. Heaven is our true home and we will never rest until we rest in God.

May Bill have an experience of the Father's love that changes his life for ever.

More later, my eyes refuse to stay open, I'm so tired.

Saturday, September 9, 2006 11:51 PM CDT

Whew! This is my first chance to sit at the computer for two weeks. The movers arrived this week with the rest of our things from Brookings and my family was here for visit over Labor Day that in addition to painting, carpet installation, the beginnings of a bathroom remodel, taking care of five children and Bill. One would have to be completely blind not to believe in God after looking at all that's happening here. Anyone who knows us knows that we are completely incapable of managing this kind of load, yet here we are experencing joy, peace and freedom. Blessed be God in His angels and in His saints.

I want to make sure to pass on the latest MRI results. I suppose I didn't rush to publish the report because it was ambiguous. The scan was taken on a different machine so the slices didn't match up with last month's scan. We're going to have to wait until next month to see if there's a change. In the meantime, Bill is plugging along on the higher dosage of chemo, feeling pukey, spending a lot of time in the chemo fog and basically unenjoying his life. He told me today he's just tired of always feeling tired.

I reminded him of what he told me once when I was on chemo. We were on our way into the clinic for my fourth of fifth cycle and when we got there I wouldn't get out of the car. I told him I wasn't morally obligated to take extrodinary measures to prolong my life and therefore I was quitting. I couldn't take it anymore. He sat there quietly for a minute and said, "Having a needle stuck in your port and sitting there for a few hours isn't extraordinary. Get out of the car." I did and I'm here today because of it.

Now I know the goal of my treatment was a cure which makes this situation a little different than the other, yet I think until we know for sure that the chemo has failed we really don't have any reason not to press in. The blood counts are still good, there's no vomiting, the meds take care of the symptoms albiet make him sleepy AND they're oral. There's really nothing extraordinary about taking these meds, so buck up, honey! Get out of the car!

Saturday, August 19, 2006 10:08 AM CDT

We're up late this morning as we all have colds. We're hoping a little extra sleep and some vitamin C will do the trick. School starts on Wednesday so I hope the kids are over the worst of it by then.

Jacob started football practice this week and Hope Ann is trying out Cross Country. Hannah will start Volleyball next Thursday so our mornings have been early and our trips to town frequent this week, but seeing the girls and Jacob getting involved and enjoying their activities I can honestly say I've never been happier to be up at the crack of dawn.

Bill and I also had activities to enjoy this week. Our 100 year old floors are newly finished, the master bedroom that we've been working on since May is ready for inhabitants but best of all our friends, the Stangeland's from Brookings came to Yankton for a visit and arranged for us to have dinner with Chuck and Marie Flemming, Barb's brother and sister-in-law, who just moved to Yankton from Watertown. How cool is that? We hit it off great and are looking forward to getting to know them better.

Then there were activities we didn't enjoy this week. Bill has been experiencing more weakness probably because of the increased chemo and he's got some arthritis flare-ups in his good elbow and his back. It's pretty much been a pain management week, something we haven't had to deal a lot with these last two years.

We'll have another MRI on the 28th to see if the extra chemo has done anything. I feel like we're getting close to making some decisions about getting help here at the house. As long as Bill can bear weight on his legs, we're ok. I can help him get to the standing position as long as he's not in too much pain and can help and we're still able to transfer. I'm not sure what we do if we lose an of that. I think that's where some increased education will help. People with disabilities worse than the ones we live with manage every day at home. I think talking to the right people will help ease my fears.

Trusting God more could do wonders too.

Thursday, August 10, 2006 9:51 PM CDT

You know if you read this blog very often that I try to stay positive and try not spend too much time using this blog getting introspective. I created it to keep our family and friends updated on his condition, not so much my feelings about it. But moving does things to a person. There's something about having our belongings in and out of boxes in two different houses two hours apart that makes me, of course, feel vulnerable and exposed. Our contractor finished the job I hired him to do last Friday and I cried when he left because there's still so much to do. Patience, I know...patience.

But I think this whole experience is really just a lesson in avoiding false responsibility. For most of our marriage Bill has wanted to move to the country. He wants the kids to grow up like he did. Unfortunately, all it made me think of was all the work, and honestly, under the circumstances we're experiencing now, you can imagine how much more it's on my mind. My thoughts run like a to-do list litany on steroids.

But the question is, are all these things that pose themselves to me as 'things to do' really mine to do?

I always have to wonder when the things I seem to have to do loom large and the list of things to do comes pouring out at me like a just-tipped pitcher of orange juice on the top shelf of the fridge, I have to ask, "Who's the author of this list?"

Jesus tell us that his yolk is easy and his burden light and if we come and learn from him he will give us rest. His work will never break us but rather will fulfill our need to serve others, give us a sense of purpose and from my experience, will sanctify even the most detestable tasks.

So if I'm overwhelmed and stressed I'm either taking responsibility for something I'm not responsible for, not taking responsibility for something I am and usually, if I'm doing one, I'm doing both.

If the evil one can't get me to sin, he'll get me tied up doing a whole bunch of 'good' things keeping me distracted from the 'best' things. So what's the grace I'm praying for today? To know the difference.


Who's writing your To-Do list today?

PS: If anyone reading this post knows Brian and Stella Satterlee's new email address would you please email it to me?

Sunday, August 6, 2006 8:25 PM CDT

I just re-read the last message I posted and really wanted to share something with regard to that. The next morning after that doctor's appointment as we were having our sunrise visit, something that's become common for us now that the views make it a shame to miss, we were talking about the turn of events and what had changed and how tempting it was to feel as though everything had when Bill said, "You know, this whole thing is so depressing I think I'm going to have to get on my mower." And away he went. He mowed all morning and continues to get out and do other things. I just marvel at how much hope that mower had given him and how that hope continues to sustain us during this time of hardship.

We're finding other things to be hopefull about too...our construction project is moving along and we're seeing steady progress. We had a good week with that.

Then Saturday we spent the day in Wakonda for Cornstock 2006, kind of a town gathering with a parade in the morning and events throughout the day in the park. The kids and their cousins rode the Logue Hay Company float in the parade (a big flatbed semi with huge alfalfa bales on it). What a joy it was to see all those little people smiling back at us as we waved and watched them ride by.

Later in the day Marielle and Hope Ann tied for first in the bubble blowing contest and Hope Ann came in second in the pie eating contest. Their dad and I were relieved that they didn't want to enter the burping contest and thought they did a pretty good job with the Mom Calling.

Bill and his mom had a table to sell their wares. Bill had all his jam for sale and his mom sold her custom, hand-crafted Christmas stockings. They thought they did pretty well for the day and are thinking of other places they could set up in the future.

We continue to return to the hopefull places in our life and find a wealth of grace to be found there even in the midst of this dark night. Where are you finding hope in your life?

Tuesday, July 25, 2006 7:28 PM CDT

The results of the MRI this afternoon were not what we were expecting at all. And honestly we're still reeling from the news. The tumor has grown 2cm since the MRI last month. We've decided that our course of action will be to increase the chemo dosage and recheck in a month. The issue will be tolerability so we'll be checking his blood more frequently.

Everytime we go in for a check we brace ourselves for whatever might come, but this time our guard was pretty low. The news just keeps washing over us with increasing intensity bringing with it all the concerns that loom large and tempt us to abandon hope.

But we know that our redeemer lives and in whom we have hoped therefore we resist to the death all fear and temptation to retreat into the darkness of self pity and worry. We cast ourselves in our weakness and poverty into the Furnace of Merciful Love entrusting ourselves with all confidence to the Father who loves us.

May the Lord of all mercy and kindness, the Father, Son and Holy Spirit, grant us the healing that will best bring about our sanctification and that of the whole world.

Tuesday, July 25, 2006 12:01 AM CDT

The house in Brookings goes on the market today. May God's holy will be done! We're also in Sioux Falls today for Bill's monthly MRI. We fully expect good results again as nothing has changed that we can tell.

Yesterday Bill decided it was time to get back on the mower. Ever since we purchased this place, the mower has been a sign of hope for us. It has given Bill an avenue for physical freedom, but more so it is an icon of life and hope, giving Bill the opportunity to move in ways he otherwise wouldn't be able to. So when he fell last month, it was an almost crushing blow to our fragile faith. Thankfully, yesterday our faith was restored as he hopped back on and started mowing the driveway while the rest of us painted fence. What an AWESOME day we had! Thanks be to God.

We will continue to follow the hope in our lives. Where will yours lead?

Tuesday, July 18, 2006 3:12 PM CDT

What a beautiful sunrise this morning! When we wake up at this place we wonder if we're on vacation the views are so peaceful and lovely. While there's still much work to be done before the house feels like ours, we're enjoying just being on the land and closer to our family.

I went to Santa Barbara last week and enjoyed being with my sisters very much. I hadn't had the chance to see where Bobbi lives when we were there last summer because we spent the entire time at Bacara, the resort that the Dream Foundation set up for us to stay at. Vandenburg Air Force Base where Bobbi lives is beautiful as far as bases go. The weather is heavenly (except for the fog that rolls in every evening). We enjoyed some relaxing sister time and had fun shopping and taking in a movie at a drive in! Very refreshing! Just what I needed.

Bill on the other hand is struggling with some leg weakness this week. It's frustrating yet he seems to be taking it in stride. For a man who has been facing physical weakness for two years it's amazing that he's able to accept his challenges with such peace. I seem to struggle more with them than he does. Lord have mercy on me.

Hope your're all well. Our new address is 44342 307th St. Mission Hill, SD 57046. 605-665-1151. Our email will remain the same.

Monday, July 10, 2006 3:51 PM CDT

We made a partial move to Mission Hill on Friday. It went really well without a problem at all on either end. Our neighbors, the Roiger's helped us here and Bill's brother Mike helped us on the other end.

It's been delightful to wake up in that beautiful place. I told Bill this morning that I feel like I'm on vacation when I wake up to the beautiful view and the refreshingly peaceful walk I try to get in.

The girls camped out in the tent last night and even got some sleep! I'm trying to get the house together before I leave tomorrow for a visit with my sister, Bobbi, near Santa Barbara. The kids and Bill are staying home and will be in good hands with our family who will be coming to help take care of everything.

I'm really looking forward to the time I get to spend with my sisters (I'll be traveling with my other sister Kelley). Kelley turned 40 last year and we had talked about doing something fun together to celebrate that..we're just a few months behind but we're doing it!

Bill has been living up to his adventurous spirit lately. two weeks ago he took the mower into uncharted territory and had a little spill breaking his arm. His bones are fragile so any impact would have done it, but he got to see the place he had been dreaming about seeing and got a ride out on a stretcher to boot! I was tempted to be angry with him for taking the risk, when I remembered that it's that adventurousness that I love about Bill and that has brought about so many of the beautiful things we've enjoyed in our 18 year marriage, so I forgave him and went to work helping him get better so he can get back in the saddle again. At this point I'm going to do anything I can do to help him live the life he desires to live. He's given everything for me...I can do the same for him.

Monday, June 26, 2006 11:27 PM CDT

SEVEN IN A ROW! Bill's MRI was stable again this month. Someone told us the other day that gratitude is thanksgiving and awe and we can honestly say that that's exactly what we're experiencing! What an AWESOME turn of events.

The next challenge that we're adding to our lives is weaning Bill off of some of the steriods. He's been on them for two years straight and they have some nasty side effects. Right now the one that's giving us the most trouble is the large muscle weakness. It's making getting up out of a chair impossible for Bill to do on his own and has all the muscles in my neck pulled from straining to help this 260 lb guy up. Thank God for Jacob who can practically lift his dad by himself. Hopefully we can wean slowly enough to keep from having other problems....as the world turns...

Our close date in Mission Hill is getting closer to being firmed up. We had the pleasure of spending last weekend down in that area at Broom Tree for our family reunion. What a glorious place! If you ever get a chance to go there or if you've been thinking about taking a quiet weekend for yourself...GO!

Waking up surrounded by those rolling green hills and beautiful farm land just made us jump for joy that it's going to be in our back yard. How grateful we are that Bill is leading us there following the desires of his heart to take his family home. Thanksgiving and awe...

Tuesday, June 20, 2006 9:05 PM CDT

Well, I've never seen a more dejected man in my life than the other day when we opened the garage door at the Mission Hill place to find all four tires on the mower were flat. But it didn't take long for his expression to change when I told him the tires were covered with massive thorns. From the sheepish way he looked at me I had a feeling he knew where they came from. Sure enough during one of his mowing adventures he decided to go exploring and drove the mower through a big patch of Locusts. One of the old knarly ones looked like the Crown of Thorns on steroids! Yipes, man! Glad he got that out of his system.

Now with lesson learned we're thanking God for Bill's brother, our lifesaving handyman, Mark, for sealing the tires and getting Bill back on the road again. Let's just hope we can keep him there! For some reason, I suspect our next adventure is just around the corner.

With things looking up, we're doing a lot of work getting ready for departure and arrival. When we stay focused on the baby steps for the day at hand we do pretty well. Moving day is still vague, but should be firmed up within the next week or two.

Bill's next MRI is next Monday. We expect good results again as we've noticed no change in symptoms. How we thank God for this stability. What a grace to be able to see the gift it is and live!