History

Tuesday, March 30, 2010 10:51 AM CDT

wow....it's been awhile since i've updated this! i apologize to those who have been asking! hmmmmm....it's been a long winter, starting at the beginning of november with the car accident cassidy and i were in (hence my one-handed typing...sorry!). the whole family is so ready for the HOPE of spring...that's for sure!

cassidy has been an amazing trooper these past few months. after her 11 days in the hospital after tethered cord surgery, it took her a couple more weeks to gain back strength and stamina to start walking again. thankfully, some of her medical issues have resolved since surgery, but unfortunately, she's still having significant daily back pain. so...we're kinda back to square one again. it's hard to see her in pain and not be able to give her answers to her questions.

cassidy's toe (that was 'fixed' last spring), started to swell in february, so she had a last minute little surgery to remove the metal pin. this meant a cast again for 3 weeks. not a big deal, but i had my wrist surgery (resulting from the accident), a few days later...so, we've been quite the pair (including matching hot pink casts).

like i said...she and i are looking forward to some better days ahead! please pray with us for answers and guidance from the doctors. they found alot of damage in my wrist..i'm still in alot of pain, even 5 weeks after surgery. cassidy's toe/foot is still pretty swollen each night....hopefully it will resolve soon.

thx for checking in on us! hopefully our next update will be a bit more cheery! :o) the grass is starting to turn green....the tulips are poking up and we're scanning the storm clouds, looking for those rainbows to appear!

Wednesday, January 6, 2010 10:14 PM CST

For family/friends who are looking for our 2009 Christmas Update....click on "Read Journal History" above or below :o)
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Below are updates on Cassidy's recovery from tethered cord surgery on 1/6/10...

Thursday, 1/21/10

To those who are asking for updates....sorry it took me so long. It's wonderful to be home...but playing full-time nurse gives me little time on the computer.

We've got bits of improvement happening each day (appetite coming back, a few more smiles, sitting up in the recliner for longer periods, some actual laughs :o), less pain meds, turning over by herself in bed, sleeping -almost- through the night...), but her recovery is not happening quite as quickly as we'd expected. She's still laying pretty low, having daily head aches/back pain and only able to take weak/tentative steps if two of us are basically holding her up. Her right foot has Mom a bit worried..it's turning in, quite obviously. We see PT tomorrow...and we're looking forward to some good insight and hopeful predictions for the next week or so. There were some serious risks w/ this surgery (loss of leg function, etc.)...but we're hoping and praying this is NOT the case.

A BIG thank you to our friends at Church at the Ranch who have been faithfully stocking our frig w/ yummy dinners (and our hearts with hugs and words of encouragement). A SPECIAL thanks also to my mom (who has been there since DAY ONE with Cassidy...helping the whole family in so many practical ways). And to Jeanni and Stephanie...my sweet sisters who have blessed us with yummy meals and PRICELESS 'cousin visits' to pass the time and cheer Cassidy up! We'll have to tell the story sometime of how they brought the 'stock show and rodeo' to Cassidy today, since we all couldn't go. It was very sweet and FUN!!

Please continue to keep us in your prayers!! It IS what is sustaining us...

Hugs,
Joel & Cheryl
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Saturday, 1/16/10

Home Sweet Home Sweet Home Sweet Home!!!! Daddy and I had to do a bit of begging and pleading to secure her release today...she wasn't making as much progress w/ Physical Therapy as they would have liked, but we promised to work hard and play 'catch up' at home. We're FREE!!

To be honest, Cassidy would have rather stayed at the hospital...she felt 'safer' there and liked the security of having doctors and nurses checking on her. She'd still rather not move at all. But I think sleeping in her own bed tonight will remind her it's good to be home!

My emotion level is high right now. Seems the last couple months are finally catching up to me. It's was 11 months ago that this journey started with her back & GI pain, week-long hospital stay, foot surgery, casts & couple months of not walking, lots of testing and doctor appts. (to diagnose the TC), then the accident, and now the last 11 days. I've had a tough time getting through this, but feeling helpless while Cassidy has gone through all this has been rougher. She's such a trooper and always tries to put a brave face on when talking with others. I hope and pray that in a couple weeks, life can get back to 'normal' and her smiles and "I'm fine" will be REAL and pain-free!!

I absolutely KNOW that we couldn't have gotten through all this without the amazing support, encouragement and generosity of all of YOU...our wonderful friends and family!! I am humbled and speechless when I think of ALL the meals, visits, notes, gifts and care that has been bestowed on our family this last year. Thank you from the bottom of our hearts!! We can never repay your kindness & care!!

A special THANK YOU also goes out to our friends (and even people we don't know) at Platte River Academy & Homeschool Enrichment Program). Last night, a wonderful, FUN and generous gift was given to Cassidy that will help her pass the time while recovering, but also help her learn for many years to come!! The amazing-ness of this gift was not lost on Cassidy. It really touched her to feel so loved and missed!

Thank YOU!!!

The adventure continues...

Joel & Cheryl :o)

BTW...Jamie is feeling better today. Still has a headache and sore face/head, but she's starting to act like herself again! Phew!! She was also thrilled to have her family home again...she's been pretty lonely!

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Thursday, 1/14/10

Day 9 is over...kinda relieved! It's been a bit more dramatic the last 24 hours. Jamie ended up downstairs in the ER here for a concussion she got last night at youth group (hit her head hard on the gym floor playing v-ball)...sounds like a bit of goofing off going on but she doesn't remember what happened. One kid upstairs, hurting and not really wanting to sit up for the first time. And another kid downstairs in the ER (w/ Dad) hurting and missing mom, who's been absent all these days. In the midst of all that, I had nerve testing on my wrist(ouch!!) and was told (again) that I need 2 surgeries and an orthroscopic procedure on my wrist, that is still really hurting after almost 10 weeks (since the accident).

All in all, it was a day that I'm glad is over. Daddy's been a trooper and is always cheerfully coming to the rescue of his 3 girls. We half expected to get a call from Josh in Greeley saying he needed us for some reason today! (actually, he would probably only need us to send money! :o)

Anyway...Saturday is hopefully still our release date. But Cassidy does need to make some significant progress tomorrow. We need to get rid of the dizziness, headaches and be able to bear some weight and take some steps. Not quite sure how that will all happen...but I still believe in miracles!

We'd still appreciate a prayer or two. Thx everyone for your encouraging words, texts and calls!

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Tuesday, 1/11/10

I considered not posting anything tonight, b/c there's really nothing new. But I realize that wouldn't be fair to those of you coming here to check on us. She has a few smiles in the mornings and asks to see her gifts from friends. She has watched a couple movies each day, but ends up sleeping thru' most of them. Today, she had the treat of Grandma and 3 cousins visiting her, one of them accompanied by guitar...very sweet!! I've posted a few pics this week on Facebook, if anyone wants to see them. I'll put 2 on the photo page here.

Thursday, she can start sitting up. Her doc says Saturday will be the earliest possible 'break out' date. So, we're still praying and looking out for a Victory U-turn soon!!

May God bless each of you as you have blessed us!!

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Monday, 1/11/10

Kinda sitting here in limbo-land right now. Day 6 and she's still pretty miserable. As usualy, she puts on a brave smile for a few minutes when she has visitors...but then fades off to sleep. She's getting kinda grumpy w/ mom 'cause I can't 'fix' how she's feeling. She loves when Daddy comes in the late afternoon....her hero.

We're both exhausted and ready to break out of this joint...but we're needing to turn some major corners (looking like U-turns, at this point!).

Please say a prayer for Cass....(and her mom, who didn't get good news about her wrist today, but we're not gonna talk about that right now. I'll deal w/ it another day...)

Thx for all the encouraging notes!!

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Sunday, January 10th, 2010

I think we're still turning that corner! Not at super high speeds, but steady and sure. She ate a few bites of real food today and kept it down good. I think her appetite is coming back due to the steroids. Her most frequent request was bites of blueberry muffin. She actually watched a movie for the first time here.

Pain is better managed and anxiety is a tad bit tapered off due to some new meds (temporarily, hopefully). She's not too talkative w/ visitors yet, but enjoys knowing they've come to see her. She's continued her tradition of naming the stuffed animals she receives after the person who gives it to her...it's cute. We also 'snuck' a cousin visit in today...so that was a special treat. A silly 'clown doctor' got a smile out of her too!

So...all in all, it was a hopeful day, even though I'd still like to see her in alot less pain.

Thx again for accompanying us on this journey!

*Oh and....Cheryl's BIG excitement is..... "officially" getting her cast off tomorrow!! WooHoo!! (but don't tell anyone that she secretly cut the thing off last night b/c it was driving her crazy!!!) There are perks to being in the hospital! It still hurts alot though...so hopefully the doc can figure out what's really going on thru' some tests they're gonna do.

Hugs to all!!

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Saturday, January 9th, 2010

I think....I think....I think....Cassidy could have turned a tiny corner in the last couple hours!! She ate a couple little bites of banana, mandarin oranges and blueberry muffin (w/out complaining!!). WooHoo!! We even saw a couple little smiles (at her daddy's silly comments), so I'm REALLY hopeful that tomorrow will be a better day!

Her CT scan came back looking okay today but they started her on steriods to treat something (I'm embarassed to say that I was a bit groggy when they explained the WHYS of that course of action). So...maybe it was the steroid dose that helped us turn that corner.

We are so blessed by all of your care, notes, gifts, calls and visits! Knowing we're not alone does make a difference!!

Thx for checking in on her...

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Friday, Januaary 8th, 2010

Well...there is honestly nothing new to report tonight. Our day was very similar to yesterday. She's out like a light when the meds are doing their job...but then we have a rough hour or so getting back to the 'no pain zone'. She has no desire to eat...I'm just getting a couple bites of yogurt down her w/ the oral meds. She is not wanting to move a muscle, watch TV or anything...so we're just letting her sleep and heal.

We'd appreciate continued prayers....the doc worried me a bit yesterday when he mentioned the 'shunt' word...hopefully the headaches are not shunt (malfunction)related and will just fade away.

Hugs to all...

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Thursday, January 7th, 2010

Two days down....oh man....many more to go...

I was relieved when Cass finally allowed herself to fall asleep at 11:30pm last night....she had been awake since waking up from surgery at 3pm....too scared to let herself fall asleep. She slept soundly for a couple hours at a time, in between all the nightly visitors (doing their jobs)in the hospital.

Today has been more peaceful w/ periods of sleep...but she's had alot of pain too...headaches, neck and back pain. They're trying to keep on top of it...but it's so hard to hear her whimpers and quiet begging for the meds to work faster.

Her NS warned that there's a small chance her shunt could be an issue w/ the headaches...but we'll have to wait and see. It's common for her spinal fluid to be off balance in her brain for a couple days...or for blood to be mixed w/ the fluid.

At one point, she made me smile when she stated emphatically...."I wish this was all happening to Josh!!" (her favorite brother :o) And a little bit ago, she was frustrated waiting for meds to be brought, and said..."If I was a nurse, I'd move a little faster!"

Tomorrow, she can start eating slowly and spending a little time on her side.

Please continue to pray for peace in her heart and relief from the pain. This little girl needs a break...but unfortunately that's still several days away.

Thanks for all your care...

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Wednesday, January 6th, 2010

Hi all,

Thanks so much for all your prayers, texts and calls. Sorry that we can�t return all of them�but we do so appreciate all your love, care and support. It�s been a long day, but things went well. She was only in surgery for 3.5 hours and her neurosurgeon said it went as good as could be expected�although he did describe the mass of scar tissue at the base of her spinal cord as a �jumbled mess�. A friend of Joel�s emailed a good description of �tethered cord�, so I copy/pasted that below b/c many of you have asked about this.

Most of you know that Cass has struggled with intense fear/anxiety the last few months, so we�ve been a bit concerned about how she would handle all this. She�s trying hard to be a trooper (and will smile and say she�s fine when visitors come), but when she�s alone with us, her �guard� comes down and she�s really struggling emotionally. Her body is exhausted and loaded w/ pain meds, but she�s having a tough time relaxing and really resting. Please pray that she would experience God�s �peace that passes all understanding� that will allow her to finally rest and recover.

She must lay flat here for 7 days, then they�ll allow her to start sitting up and try to walk to make sure the incision holds and no fluid builds up.

Thanks again for all your offers of help and support!! Please continue to pray that this week passes smoothly, quickly and without complications. We don�t want to bother anyone w/ lots of emails this week�so I�ll be putting current info. on her website: www.caringbridge.org/co/cassidyanne - feel free to check in w/ us there.

**As far as visitors�unfortunately Children�s Hospital has a really strict policy this winter and they�re not allowing any visitors under the age of 13 years old. We are really bummed about this as Cassidy was looking forward to seeing cousins and friends. That would be the bright spot in her days. I haven�t broken this news to her yet�..

Thanks for travelling this incredible, and humbling, journey with us.

Hugs to you all,
Joel & Cheryl
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Tethered Spinal Cord Syndrome � Myelomeningocele

Tethered spinal cord syndrome is a neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column. These attachments cause an abnormal stretching of the spinal cord. This syndrome is closely associated with spina bifida. It is estimated that 20 to 50 percent of children with spina bifida defects repaired shortly after birth will require surgery at some point to untether the spinal cord.

The lower tip of the spinal cord is normally located opposite the disc between the first and second lumbar vertebrae in the upper part of the lower back. In people with spina bifida (myelomeningocele), the spinal cord fails to separate from the skin of the back during development, preventing it from ascending normally, so the spinal cord is low-lying or tethered. In patients with a lipomyelomeningocele, the spinal cord will have fat at the tip and this may connect to the fat which overlies the thecal sac (a fluid filled sac that the spinal cord floats within.)

Although the skin is separated and closed at birth, the spinal cord stays in the same location after the closure. As the child continues to grow, the spinal cord can become stretched, causing damage and interfering with the blood supply to the spinal cord.

Surgery

Untethering is generally performed only if there are clinical signs or symptoms of deterioration. The surgery involves opening the scar from the prior closure down to the covering (dura) over the myelomeningocele. Sometimes a small portion of the bony vertebrae (the laminae) are removed to obtain better exposure or to decompress the spinal cord. The dura is then opened, and the spinal cord and myelomeningocele are gently dissected away from the scarred attachments to the surrounding dura. Once the myelomeningocele is freed from all its scarred attachments, the dura and the wound are closed. The child usually can resume normal activities within a few weeks. Recovery of lost muscle and bladder function depends upon the degree and length of preoperative implications.

Tuesday, January 5, 2010 1:30 PM CST

Since I didn't get Christmas cards out last year for the first time in 22 years of marriage, I was absolutely determined to send them this year! But you know how it is trying to get the family in the same location for a picture! The cards got printed the day AFTER Christmas....and now I'm pretty embarrassed that they are JUST going in the mail tomorrow. Too late for New Years!! Could we just consider them an early Valentine's wish?? (sheepish grin :o) I was going to print up a cutesy Christmas update to include w/ the card...but even that got away from me! So...the last resort was posting our 'family update' here!! Sorry! The family has even had to be extra patient w/ me this season...as I've been flying by the seat of my pants trying to play 'catch up'with life (still in a cast for another week). Not much Christmas baking went on around our home and our (very small) Christmas tree didn't even go up 'til Christmas Eve!! Good thing the REAL meaning of Christmas is SO much more than just the festivities!!

We absolutely LOVE hearing from all of you this time of year...reading about your families' and seeing your kids grow...WOW!! I am amazed! Are we all really this old?! :o)

It's been an interesting couple years for the Veenstra family. We've had to humbly trust God more than ever...yet even amidst the tough times, we see Him working in our lives (and those around us) in marvelous ways! It's hard to understand His ways some times (okay, let's be honest...A LOT of times!)...but we can absolutely see that He brings much good out of the bad, and in that alone, there is much HOPE.

Our favorite son, Josh is now 19 years old and a freshman at the Univ. of Northern Colorado, which is about an hour and a half north of us. He's loving life and the whole college experience. He's been amazed at how different it is from highschool. We've enjoyed seeing him every few weeks. It's been wild to seem him 'grow up' in maturity the last year....it's hard to believe his childhood is gone....it was quite a ride!! We are really proud of him!

Jamie is a sophomore in highschool this year and is SO looking forward to getting her drivers license soon!! She's blossomed and grown into a sweet, compassionate (and sometimes zany!!) young lady and is lots of fun to be around (that is, when we can pin her down and get her to spend some time with us!). The highlight of her year was a missions trip to Costa Rica in July with our church's youth group. It rocked her world and also helped prepare her for the transition to a public highschool this Fall.

Cassidy is eleven years old already...hard to believe! She's mom's little shadow and daddy's cuddle buddy. Her sweet personality and quick smile still shine through even though the last year has been tough on her. She had an unexpected week-long hospital stay in March due to painful GI issues. Then, in April she had foot surgery and was in two casts for 6 weeks. The rest of the year, she has dealt w/ a host of other symptoms, including daily back pain, less stamina when walking and GI issues. After dozens of doctor visits and tests, it was finally determined that her spinal cord needs de-tethering (scar tissue from her original back-closure surgery is holding her spinal cord taut while she's growing, causing these symptoms and others). So, she has is scheduled for tethered cord surgery tomorrow (1/6/10). We'd SO appreciate your prayers during the next 2 weeks as she recovers....that no further function would be lost and that the pain is manageable. But most importantly, for Cassidy's peace of mind. She's had a lot of extra anxiety/fear in her life this last year...it would be wonderful for her to have some relief from that. Thanks so much!!!

Joel continues to try to survive (w/ humility, grace and humor) the mortgage industry melt-down which began 2 and a half years ago. What a roller-coaster it has been! His job has been eliminated (along with entire departments) 3 different times....but thankfully he's been able to find other jobs in the same company...albeit humbling, stressful and frustrating on a daily basis!! He's been an amazing example to us of perseverance and strong work ethic during all this...but we're hoping and praying that this new year brings a fresh and rewarding new career path, so that he can enjoy going to work again!!

For the most part, I (the mom of the group)continue to TRY to master that elusive art of 'juggling'!! Always a challenge to keep up with the busy family, everyone's changing needs and the variety of 'curve balls' that life throws out. Some of you already heard about the car accident thatCass and I were involved in 2 months ago. This has caused me considerable pain w/ neck & wrist injuries. Thankfully, Cassidy wasn't hurt, except for some serious emotional scars, including much additional anxiety. 'Daily Surrender' (to the One who knows the answers to my questions) and 'Going with the Flow' seemed to be the theme lessons of 2009!! Here's to hoping for a more peaceful 2010...well, starting in February, at least!

May God continue to bless each of you and your families....as you have blessed us by your presence in our lives!! Thanks for checking in on us!

Wednesday, October 14, 2009 1:35 PM CDT

I meant to post an update on Cassidy's 11th birthday over a month ago....but obviously TIME FLIES when you're having fun!!

I can't believe my 'baby' is getting all grown up on me! You can tell it in the way she talks....carefully picks out her outfits each day and the way she smiles and starts to whisper in my ear when she sees a cute boy!! :o) Oi Vey....where's my little girl going??!! But thankfully, she still likes to climb in my lap to cuddle and she promises to always be my baby girl.

Please say a prayer for her when you think about it. Cassidy's been struggling with a lot of extra back and leg pain the last many months and we're trying to get to the bottom of this (and other new interesting symptoms she's been having). She's really trying to be a trooper, but she often says...."I wish I was a regular kid and wasn't in pain all the time" or "I'm sorry I'm complaining all the time Mom, but my body's just not working right...it always hurts". It's hard for me to see her losing her desire/stamina/ability to walk as much as she always has (she often asks for her wheelchair now when we're going to a store, etc...) It's tough to see her frustrated and in pain most of the time. She and I are both weary of this new phase and needing some answers....

We've had lots of doctor appointments and extra physical therapy sessions lately. Now, they're finally running some extra tests to try to diagnose if this is an issue they can do something about or just a new phase we are entering....where her back/bones are just wearing down after years of walking in an unhealthy way (compensating for missing muscles in her legs/hips, etc...). Please pray for guidance/direction for the doctors and for me as I try to walk that fine line of being a MAMA BEAR advocate for my daughter (demanding answers....nicely!) but also needing peace/contentment about what the future may look like and helping Cassidy through all the emotions/logistics that entails....

We're starting our 3rd year of homeschooling. She participates in lots of enrichment programs, tutoring, field trips and still heartily enjoys as much PLAY time as possible with cousins and friends! Academics and learning are still very hard for her. Progress is slow and tedious at times...therefore, we try to balance out the day so that her self-esteem/confidence stays intact.

In SO many ways, Cassidy IS a 'regular kid' (her own terminology) and is a complete JOY to be around. But we need to remember the tough start she had, how severe her hydrocephalus really was and how FAR she has come!! God has amazing plans for her...and she has already made such a huge impact on her world. I truly count it as an amazing privilege to be her mom. Not to mention the fact that I'm so thankful I still have a 'little buddy' to hang out with now that our other two kids are busy and away from home alot...a sophomore in highschool and a freshman in college...YIKES!!

Thanks for checking in on us!! And thank you for your continued prayers....as the adventure continues!!

Saturday, May 9, 2009 6:09 PM CDT

Cassidy's on the tail end of a long couple months....but she's been a trooper and we're really proud of her. After her hospital stay, she had some residual tummy pain for a week or so, but then the pain and her anxiety started fading.

On April 3rd, she had an outpatient foot surgery to fix one of her big toes that was causing problems. Her ortho shaved some bone and put a pin in it. Then the doctor beautifully decorated her blue and purple casts with flowery artwork! (the other foot needed to be casted too, due to a blister that had turned into a pressure sore and wouldn't heal for weeks). This also happened a few years ago with a simple sore on her heel. It wouldn't heal (due to poor circulation in her lower legs) until we put a cast on it for 4 weeks.

SO...Cassidy has been using her wheelchair full-time the last 5 weeks. She's been pretty brave about it, but she's definitely experienced some frustration w/ not being able to get around easily and having to rely more on Dad and Mom. The casts came off a couple days ago, but she's avoiding walking b/c her legs are weak and she's pretty protective of her toes/feet. She'll get new braces in two weeks so hopefully she'll be able to get back to normal soon.

It's been interesting to see her 'process' what's been happening the last couple months. She's asked some tough questions about life and why she's 'different' from other kids. It's hard to know exactly what to say sometimes .....we want to validate her very real feelings... but also help her appreciate her strengths and gifts and be content with who God made her. The other day, she surprised me with a comment after we had been to the store to find some shoes she could wear while in her chair to protect her feet w/out braces on. To my surprise, she ended up picking out sandals, and on the way home, she became enthralled with the fact that she could wear flip-flops for the first time in her life (for the next 2 weeks before her new braces come in). Then, she said... "Mom, I wish spina bifida just meant having a shunt and these holes in my belly (her stomas). I'd be okay with that. But I wish I didn't have to wear braces 'cause I want to wear flip-flops every day. Why can't I?"

The adventure continues! Thanks for checking in on us!

Cheryl :o)

Saturday, May 9, 2009 6:09 PM CDT

Cassidy's on the tail end of a long couple months....but she's been a trooper and we're really proud of her. After her hospital stay, she had some residual tummy pain for a week or so, but then the pain and her anxiety started fading.

On April 3rd, she had an outpatient foot surgery to fix one of her big toes that was causing problems. Her ortho shaved some bone and put a pin in it. Then the doctor beautifully decorated her blue and purple casts with flowery artwork! (the other foot needed to be casted too, due to a blister that had turned into a pressure sore and wouldn't heal for weeks). This also happened a few years ago with a simple sore on her heel. It wouldn't heal (due to poor circulation in her lower legs) until we put a cast on it for 4 weeks.

SO...Cassidy has been using her wheelchair full-time the last 5 weeks. She's been pretty brave about it, but she's definitely experienced some frustration w/ not being able to get around easily and having to rely more on Dad and Mom. The casts came off a couple days ago, but she's avoiding walking b/c her legs are weak and she's pretty protective of her toes/feet. She'll get new braces in two weeks so hopefully she'll be able to get back to normal soon.

It's been interesting to see her 'process' what's been happening the last couple months. She's asked some tough questions about life and why she's 'different' from other kids. It's hard to know exactly what to say sometimes .....we want to validate her very real feelings... but also help her appreciate her strengths and gifts and be content with who God made her. The other day, she surprised me with a comment after we had been to the store to find some shoes she could wear while in her chair to protect her feet w/out braces on. To my surprise, she ended up picking out sandals, and on the way home, she became enthralled with the fact that she could wear flip-flops for the first time in her life. Then, she said... "Mom, I wish spina bifida just meant having a shunt and these holes in my belly (her stomas). I'd be okay with that. But I wish I didn't have to wear braces 'cause I want to wear flip-flops every day. Why can't I?"

The adventure continues! Thanks for checking in on us!

Cheryl :o)

Tuesday, March 3, 2009 10:36 PM CST

Thanks to so many of you who have been praying with us for Cassidy's smooth and speedy recovery. We have felt truly cared for and reassured that we are not alone on this journey. I'll try to post updates below (each day) b/c it's been hard to find time to get back to each of you who have been asking how she is doing.... THANK YOU!!

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Friday, March 6, 2009.....We are HOME!! Very thankful and very tired! Cassidy was very nervous when we left the hospital...Mom is nervous when she still complains of some stomach pain when she eats. But we're starting to relax and enjoy the freedom of being in our own 'private' quarters and not being attached to tubes!!

The tears (that have been storing up for over a week in my heart) finally let loose when I opened our frig and found it stocked with food from friends and family. Another friend cleaned our house this week, my mom and sister brought me a warm breakfast each day and snacks so I didn�t have to leave Cassidy. Her cousin Shoshanna came to watch movies and do crafts with her to help pass the time. Her other cousins Hannah and Tiffany would pack up some toys and come set them up on Cassidy�s bed and play with her each day. Visits, cards, gifts and balloons cheered us up! The realization that so many have been literally 'holding us up' with encouragement, support and prayer.... made me realize how very weak we feel right now.

BUT there is great hope that this episode is behind us...and life will continue on, normally, next week!!

Please continue to pray that Cassidy would rest peacefully and continue to recover (she's sore all over and is nervous about walking again b/c her legs feel so weak)

May God continue to bless YOU as you have blessed us.

Joel & Cheryl :o)
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Thursday, March 5, 2009.....She is definitely on the road to recovery! It's so nice to see some color in her cheeks again and a few smiles here and there. :o) We'd still appreciate your prayers regarding her anxiety (that has been at an all-time HIGH the last 2 days). She's had a couple tough experiences with IV's that caused alot of pain and ended up needing to be replaced. Along with all the stomach pain and other pokes/prods/procedures in the last week, she's kinda reached her LIMIT of being brave. She even summed it up herself..."I just can't be brave anymore...I just can't". But she got alot of tears out last night while we tried to talk about all these tough feelings she's having. It's hard to see her so fearful all the time and it's kinda overshadowing the happiness of knowing she's on the road to recovery. Some therapists will be talking to her throughout the day today to try to help with this.

But the GOOD NEWS is that we are set to go home tomorrow!! :o)

Thank you for your continued encouragement and prayers! It really has made a difference!

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Wednesday, March 4, 2009....Pain is down to minimal now and x-rays show that things in her abdomen are considerably better! She's starting soft foods this afternoon and if all goes well, we can go home on Friday. Yay!

She's tired (and a bit grumpy right now...believe it or not, she doesn't have any desire to eat and is mad at Mom for making her take some bites!), but she had a FUN morning when cousins came to visit and we took a walk around the hospital and even got to go outside and enjoy the gorgeous weather!! Fresh air and sun never felt so amazing!

Please pray for her anxiety level to go down. It seems to increase each day and she gets downright frightened and upset when she has to get blood draws, new meds in her IV, moved in her bed, etc... I think she's just maxed out and tired of any new pain inflicted. Please pray for a peaceful heart and a calm spirit.

Thanks for checking in on us.... :o)

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Tuesday, March 3, 2009....Things DO seem to be looking up here and Cassidy IS feeling a BIT better! WooHoo! Considerably less pain, a handful of smiles today and x-rays that show that things are �clearing up� in her abdomen. They still don�t know why this all happened (there�s still a small chance that scar tissue could be causing a partial blockage in her colon), but tomorrow we�ll start taking small steps towards being released (maybe by Thursday). Yeah!!

Tomorrow, she gets to start on liquids to see how her tummy (and other things) tolerate that and then we can hopefully move to soft foods tomorrow evening. (I am VERY excited about this �cause it sure bothers a mom�s heart to not to have her child eating or drinking for 6 days)!! If the pain doesn�t return and things start �moving� (and there�s no evidence of things getting blocked again), then we can break out of this joint!! WooHoo! :o)

Amidst the tough stuff, we have had some memorable moments with Cassidy. Most of you will appreciate the fact that sometimes you just gotta laugh to relieve some stress! She�s definitely NOT been her �talkative self� during our stay here�but here a few things that have come out of her mouth�.

*On the first day, after getting poked, prodded and (in her mind) �man-handled� for hours, Cassidy only had one thing to say�. �I so wish all this was happening to JOSH!� (her big brother :o)

*We had a knock on the door one day and a volunteer rep opened the door and asked Cassidy if she would like Darth Vader and 2 Storm Troopers to come in her room. After taking a look at the big scary-looking guys standing behind the rep�.Cassidy politely said� �No, not really�.

*Other cute comments�.. �Does everyone have to come in here and press on my belly and put tubes in me?��.�Why does everyone think you�re pregnant Mom?� (after the dozeneth time I was asked that question as we were wheeled to Radiology for x-rays)�� There are sure a lot of interesting people walking around this hospital� (after having dogs, guitar bands, and many fun �characters� knock on our door to visit, including a huge pink pig!)

In the midst of processing all this, as parents, and being so sad that Cassidy�s had to go through more tough stuff (on top of what she already deals with daily), we�ve been gently reminded how incredibly well she�s been doing the last several years. We�ve not had the infections, hospital stays, complications and surgeries that are typical with spina bifida�and we are reminded not to take the LITTLE things, including health, for granted! And, as Joel said to a friend�. �God is good and very present in this situation. We certainly don�t always agree with the methods or understand His will but we do acknowledge that He is sovereign and will continue to trust Him to meet all our needs. Our hope and prayer is that Cassidy can grow in her faith and dependence on God during this tough time.�

Thanks again for all your thoughtful messages, prayers and practical helps the last week�we are so thankful for YOUR presence in our lives!

~~~~~~~~~~~~~

Monday, March 2, 2009....Cassidy has had a long 5 days�..but continues to be a trooper. Today though, we can definitely tell that she�s getting very tired and frustrated about all the pain, poking, prodding and testing. Hopefully we can get some good sleep tonight and tomorrow morning there will be new hope and less pain!

Everything takes SO long here�.getting answers to our questions, tests done and waiting, always waiting, to be updated by the docs (b/c the different specialists have to communicate w/ each other first). It�s been a �trial and error� type thing to figure out what exactly is going on�but hopefully we�ll have more specifics and some good news tomorrow.

To summarize for a few of you who aren�t even sure how we ended up here��.Thursday, Cass was diagnosed with a bladder infection and we started on antibiotics (which is not uncommon for her�.every 3-4 months). But Thursday night she was up ALL night with intense stomach and back pain. We attributed this to bladder spasms which probably meant it was turning into a kidney infection. Pain went down a bit during the day Friday�.but then Friday night, the intense pain began again. We ended up in the ER early Sat. morning and went home w/ some new meds and hope that the antibiotics were gonna get working and all would be better. But by Sat. afternoon, we couldn�t manage her pain at home anymore and we headed back to Children�s. They started thinking the pain wasn�t bladder/kidney related�and started investigating other things.

X-rays showed a full abdomen caused by possibly a small bowel obstruction. But hard to figure out WHY it was happening. Could be due to adhesions/scar tissue from past surgeries she�s had on her colon OR due to the decreased motility and nerve/muscle function she has in her colon due to the spina bifida.

Anyway�.trying to make a long story shorter�..we�ve been doing many intense bowel cleanouts and meds and more tests. Seems like things are going in the �right direction�, but there are still questions to be answered. I�ll admit I�m kinda frustrated right now b/c we probably won�t get any answers until later tomorrow. But maybe it�s just the tiredness catching up with me�.

I�m guessing on this (again, no firm answers at this point)�.but in my mind, best case scenario we�d be home by late Wednesday�.or worst case scenario, she would need surgery�.but we�re hoping that last option will get �ruled out� tomorrow.

Please continue to pray for wisdom/guidance for the doctors to make the right decisions. We know that God is in control and has all the answers we need�.we are just praying that He makes it clear to us that we are on the right path and doing the appropriate things. For the most part Cassidy has been very quiet and brave, but gets very anxious and worried when poked and prodded or in pain. She often breaks out into prayer spontaneously when she is anxious or in pain (i.e. �Dear Heavenly Father�.help me now! I need you God!�) Nurses and doctors often are around when this happens�.it�s interesting seeing the looks on their faces. We just pray that this little girl�s faith during these tough times is strengthened�.not discouraged when answers don�t come as fast as we�d all like. But God is good and we do feel His presence�.especially through each of you and your care/concern.

Sorry we haven�t communicated with you all as much as we would like�.but we�re trying to play �catch up� right now. Thanks for being patient with us.

Hugs to you all,
Joel and Cheryl

Friday, September 14, 2007 0:04 AM CDT

My baby is 9 years old!!

VERY hard to believe that it's already been that long.
But then again, it feels like Cassidy has been a part of me forever.

What would I do without this child in my life? Who would I be if I wasn't Cassidy's mom? It's hard to even imagine......

Not be who I am now? Not know what I've learned?

Not experience what this mysterious path --off the well-traveled road-- had to offer?

Not know the amazing people we've met the last 9 years? Not seen the beauty and miracles along the way? I can't fathom missing out on those opportunities!

It's been the hardest thing I've ever done....but also the best thing that I've ever done.

My eyes have been opened now.....to so many sad people 'out there' who are searching for their purpose in life....unknowingly, in the wrong directions.

But here's the beauty that is almost impossible for them to see......

THAT is what I was GIVEN......that is what I was lovingly HANDED.

My purpose. My reason.

A soft, warm GIFT that needed everything I could give her.

In her dire need, my daughter has shown me what I need. And where to get it....

I needed her....... as desperately as she needs me.

I need God....... as desperately as she needs me.

It is overwhelming at times.....

She needs me........ to protect, to advocate, to filter, to listen, to laugh, to be patient, to decide, to plan, to solve, to care, to research, to guide, to explain, to remember, to watch, to pray, to balance, to dream, to validate, to prepare, to carry, to discipline, to smile, to hug, to help, to hope, to teach, to relax, to cuddle, to lift up, to love unconditionally, to steady, to wipe tears, to remind, to anticipate hurdles ahead, to spend time, to see the positive........and to DO the many daily things that need to be done to keep her healthy and growing!

She also needs me to challenge her.......gently push her out of the safe place that she would love to stay forever......to learn how to fly on her own!

He's doing the same with me!!

I�ve been forced out of my �comfort zone� and been asked to do things that I never imagined I could do. To go places�I would never have gone before. Get to know people� I had never felt comfortable around before.

Cassidy has always needed COMFORTING from me......and instead of that becoming less of a need as she gets older, lately that need has increased. She seems to need that safe haven in the midst of a world that involves some pain at times, people's stares....and frustration in her mind as she struggles to learn. Answers to many questions, a hand outstretched, constant assurances about the future�..a stable presence.

I've found that COMFORT is very hard to give unless my own heart is comforted-- by Him....who can see the bigger picture, the perspective, the purpose, the reason and the hope!

I can't give, what I don't have.

I am her comfort.....He is mine.

She needs a safe haven...a place where she is loved and accepted unconditionally. Where she is perfect when she crawls, wears a diaper, cries in frustration or struggles to find a word.

He is MY safe haven. A shoulder to cry on�.a lap to crawl into�peace on the journey.

She looks to me for answers to life's tough questions....
I have NO choice, but to look above her searching eyes.... to Him....who holds the answers.

She needs me to steady her, balance her, and catch her when she falls. And then to pick her up, dust her off and wrap up skinned elbows, bruised knees or a hurting heart.
She needs me to laugh in the face of fear and to see the rainbow in every storm.

I need all these same things. I need them desperately.
So, yes. A little blonde, blue-eyed girl taught me to recognize my own need.

And then, the One who made her, revealed Himself to me. The answer to all of OUR needs.

As I carry her....He carries me.

When she reaches out for my hand, His is already outstretched to mine.

When we cry....He is there. We are not alone.

It's become an automatic reflex...she and I......me and Him.

The path ahead is still uncertain and it winds around turns ahead that I cannot see around.

But mysteriously, it's not so scary anymore. 'Cause I know He's already walked it and knows what lies ahead.

He will guide us each step of the way and give us the next rock to stand on in the midst of the rushing stream.

He will provide the next soft place to lay our tired heads.

He will meet our needs and ultimately, my daughter WILL be healed in Heaven someday....

��.and we'll live the rest of forever, marveling at what we were taught here on this place called Earth.

This gift is NOT a burden, but a blessing that will continue forever......
~~~~~~~~~~~~
I love you Cassidy! I am so thankful that I was chosen to be your Mom!!

YOU are MY present!

9/9/2007

"I knew when I met you an adventure was going to happen" - from the Winnie-the-Pooh print that has always hung above your bed!

******************************

Yes, the adventure continues!

A few bullet-points of the last 5 months:

*We had a FUN summer with lots of camping and play-dates!
*Cassidy relishes time with her favorite people - Hannah and Tiffany!!
*A new measure of anxiety came upon Cassidy in May and has stuck around. Please pray with us for peace in her spirit and that she learns to give her worries to God.
*Cassidy is working hard on her reading with a great new tutor. We're going back to the basics!
*God did give me peace and total confirmation that homeschooling would be the best thing for her this year.
*We're both transitioning into our new schedule and this new 'dynamic' in our relationship.
*I'll admit I'm a bit overwhelmed, but I really do KNOW that it will work out and I will treasure this extra time I get with her.
*Cassidy loves: Highschool Musical movies and songs, Full House, Littlest Pet Shop, playing 'house' and dolls, watching 'A Baby Story' and reality-themed medical shows, Little House on the Prairie, eating Cheetos and "choco" cereal, dressing up, singing, being mom's little shadow, AND we often overhear her playing the role of 'doctor/nurse' or 'teacher/tutor/therapist' with her dolls!!

Thank you for your thoughts and prayers!

Thursday, April 26, 2007 9:06 AM CDT

Wow! Time is just flying by! Some of you have been 'at me' to update Cassidy's journal for some time now! So here goes.....

It occurred to me that maybe I've been subconsciously avoiding trying to summarize the last year because I'm not sure quite what to say. Overall, things are SO positive and God is so good! Cassidy is healthy, happy, blossoming and as sweet as ever!! But she has been dealing with some tough things (as far as learning disabilities and the frustration/self-esteem issues that accompany this), so it has been a tough year in a way...emotionally, for she and I.

Cassidy is 'almost 9' (as she reminds me frequently), although her birthday is still 4.5 months away!! She's growing so fast!! What a delightful kid she is! Lately, I am often overcome with emotion and love bubbling over me as I watch her and realize how blessed I am to be her mom. How did I get so lucky to get to be one of this little girl's favorite people!! (along with her daddy, her sister, her grandmas, and her 'best friend' cousins, Hannah and Tiffany)

She communicates her thoughts and feelings so very well and I am so thankful that we can talk about the things that are on her mind and tugging at her heart.

Along with that, comes some tough questions though. Like the other night, after sitting on the potty for her ACE, cathing, meds, taking off braces, putting bandages on her stoma, stretching, etc....she says to me: "Mom, look in my eyes...I need to tell you something. Why do we have so many medical things to do every night? It is just so much. Why doesn't Jamie have to do this? Why do I have spina bifida? Why can't it just go away? I just don't understand.... I just want to cuddle with you and watch Disney...."

Unfortunately, Cassidy has become acutely aware of her differences and limitations in the last year or so. Sometimes her comments and questions catch me completely off guard and an arrow pierces my heart as I grasp for the right thing to say and pray desperately for wisdom straight from heaven to comfort her soul and give her peace about the way God made her.

Yes, she is able to walk and valiantly tries to keep up with her peers. We keep her wheelchair in the back of my vehicle for long distances, field trips, etc. We talk about how her ability to walk is a blessing and we should be very thankful and focus on the positive side of life.

But realistically, Cassidy does often feel the 'eyes on her' and she is at an age where she is really trying to process what she experiences daily in life. That it's hard to keep up with friends and it is sad to not be able to run, jump, climb and skip rope. And unfortunately, she has had kids say some unkind things to her about her differences....so that has made it extra hard this year. Sometimes, as a mom, it's hard to walk that 'fine line' between wanting to fiercely protect her from the prying eyes and unkind remarks, but then also knowing that we need to walk alongside her and encourage her to develop her own strong self-esteem because unfortunately, there will probably always be people around who aren't sensitive and caring and see her who for WHO SHE IS!! Please pray with us in this...that God instills in her a peace and contentment for WHO He created her to be and HOW He wants her to walk through this life, despite the struggles and hurdles to overcome.

The academic struggles she's been experiencing have also added to the 'mix'. Her learning disabilities (which were diagnosed thru' neuro-psych testing last Fall) are most likely due to her severe hydrocephalus at birth (which is not typical for most babies with SB). BUT...we are VERY thankful that we do have a bright little girl who is fully interactive with her world and very much FULL of life (as opposed to the bad prognosis the doctors first gave her). But there are still some tough things for her to deal with. And I'm praying desperately for God's wisdom in how to handle her education next year.

The private Christian school she has attended for 3 years has been wonderful for her. They've provided much 'special services' support and it has proved to be a safe and nurturing place for her to be. I am so thankful that she was even able to attend here b/c for several years after she was born, I never dreamed she'd be able to attend our alma mater and have the same opportunity as her brother and sister.

But now we're to the point where she is falling considerably behind and we just need to take some time to go back to the 'basics' of reading and math and give her time to master those. Her peers are far ahead of her, and a typical third grade classroom, would just be too big of a leap for her, next year.

I've never imagined myself as a 'home-schooling mom', but in the last year, I feel more and more inclined that this might be the best thing for her. The opportunity for one-on-one daily learning to go back to 'her level' and go slower, MIGHT be just the ticket. Making sure concepts are solidly mastered before rushing ahead....then she can have success and build a stronger foundation (and confidence) for future learning.

My heart is still torn though because I can see many positives with each type of education and I want to absolutely do what's best for her. I would want her to have various teachers/tutors in addition to myself and I would want her to be involved in a variety of activities and exposure to a day (or two) a week of being educated with other home-schooled children to develop relationships, etc....

This is one of those times, when I absolutely long for Jesus to knock on my door and come sit with me for awhile and tell me what the BEST situation would be. I would do IT!! Whatever it was....I would do it!!

Through my own fears and uncertainty of it all...I am confident though, that this revelation (and peace) will come in the next couple months as we explore our options, have some more testing done and get final input from her teachers at the end of this school year. Please pray with us for wisdom and guidance from above!!

AND....please know that there is so much HOPE and pure JOY in my heart as I anticipate the future and seeing the plan for Cassidy's life unfold. What a privilege it is to have been chosen to be 'along for the ride' and be 'in on' the blessings of this journey!!

I'll close with lyrics to another favorite song. This has been 'Cassidy's song' since she was a baby. (I love it when someone puts a piece of my heart into WORDS!!)

Thank you for being a part of our lives!!
Hugs, Cheryl

I HOPE YOU DANCE
by LeeAnn Womack

I hope you never lose your sense of wonder
You get your fill to eat but always keep that hunger
May you never take one single breath for granted
God forbid love ever leave you empty handed
I hope you still feel small when you stand beside the ocean
Whenever one door closes I hope one more opens
Promise me that you'll give faith a fighting chance
and when you get the choice to sit it out or dance.....

I hope you dance
I hope you dance

I hope you never fear those mountains in the distance
Never settle for the path of least resistance
Livin' might mean takin' chances but they're worth takin'
Lovin' might be a mistake but it's worth makin'
Don't let some careless heart leave you bitter
When you come close to sellin' out reconsider
Give the heavens above more than just a passing glance
And when you get the choice to sit it out or dance.....

I hope you dance......I hope you dance
I hope you dance......I hope you dance

I hope you still feel small when you stand beside the ocean
Whenever one door closes I hope one more opens
Promise me that you'll give faith a fighting chance
And when you get the chance to sit it out or dance
......Dance.....I hope you dance

Monday, February 6, 2006 9:34 PM CST

It's been a while, so I thought I'd post a quick update on Cassidy. She's growing and blossoming into quite the little lady with such a fun personality!! She turned seven years old in September and is halfway through the first grade now!

She's a trooper and is trying hard in school, but it's been a bit of a tough year academically. Her teacher and the support services teacher have been great at the private school she goes to. But, in November, we all determined that she was falling behind and may need some extra help. Reading and Math are not quite 'clicking' in her mind yet. Hopefully, it's just a function of timing and she's just on her own little development schedule.

For now, in order to keep her IEP (Individualized Education Plan) current, we've enrolled her for one day a week at our local public school. This will allow them to monitor her, test her and give her some additional help w/ special services.

We are praying for God's guidance and wisdom as we make decisions about her future education. We're just going to take one year at a time.

Cassidy is doing great socially and has lots of friends. Her current school is such a 'safe' and nurturing place for her. She enjoys recess now and says that P.E. is her favorite class! Go figure!

Cassie loves nothing better than having a 'playdate' and someone to play with. When she's bored and wants someone to play with, she'll say to me...."Mom, I'm boring!" :o)
She absolutely loves to spend time with her many cousins here in town. On our way home from a playdate....she's already asking when we get to see them again!

Thanks for checking in on us!! We look forward with anticipation to what God (and the journey) has for us ahead as we watch this little girl continue to grow and blossom!!

"Trust in the Lord with all your heart. And lean not on your own understanding. Acknowledge Him in all your ways, and He will direct your paths". Prov. 3:5-6

**********************

The chorus of the song below has become very special to me!!

In My Daughter�s Eyes � Martina McBride

In my daughter's eyes I am a hero
I am strong and wise and I know no fear
But the truth is plain to see
She was sent to rescue me
I see who I want to be
In my daughter's eyes

In my daughter's eyes, everyone is equal
Darkness turns to light and the world is at peace
This miracle God gave to me
gives me strength when I am weak
I find reason to believe
In my daughter's eyes

And when she wraps her hand around my finger
Oh, it puts a smile in my heart
Everything becomes a little clearer
I realize what life is all about

It's hangin' on when your heart has had enough
It's giving more when you feel like giving up
I've seen the light
It's in my daughter's eyes

In my daughter's eyes I can see the future
A reflection of who I am and what will be
Though she'll grow and someday leave
Maybe raise a family
When I'm gone I hope you see how happy
she made me
For I'll be there
In my daughter's eyes

Tuesday, June 21, 2005 9:27 AM CDT

Cassidy is doing well and having a fun summer!! We've only had a handful of miscellaneous appts. each month and we're continuing on with her speech therapy and some tutoring with last year's teacher. Her stuttering seems to be making a comeback occurrence, so we are trying to help her out with that.

She had fun at Jr. Wheelchair Sports Camp again this year and really enjoyed playing tennis! She's going to attend a little clinic for adaptive tennis in July and we're also hoping to get her involved in Sled (Ice) Hockey this winter. It's time for her to find some fun sports to participate in like her siblings.

Cassidy's dad has (yet again!) been sidelined this summer due to a dirt bike accident, injuries and surgery. So again....we are reminded that God knew that Cassie would feel very comfortable in this family which seems to be full of casts, crutches and wheelchairs!!

Thank you for your continued encouragement and love for Cassidy. Please pray for her upcoming school year with the start of full-time school in first grade. It will be an adjustment for her and a challenge as she finds her place in a class with many new kids. Our prayer is that she meets a couple special new friends and finds peace with the whole "recess scenario" and her own ways to have fun and participate!!

Thanks and God Bless!

*********************

A favorite song of ours.....

God�s Will
by Martina McBride

I met God�s Will on a Halloween night.
H was dressed as a bag of leaves.
It hid the braces on his legs at first.
His smile was as bright as the August sun, when he looked at me.
As he struggled down the driveway,
it almost made me hurt.

Will don�t walk too good.
Will don�t talk too good.
He won�t do the things the other kids do in our neighborhood.

I�ve been searching, wondering, thinking�..lost and looking all my life
I�ve been wounded, jaded, loved and hated��
I�ve wrestled wrong and right.

He was a boy without a father,
And his mother�s miracle.
I�ve been reading, writing, praying, fighting, I guess I would be still��
Yeah, that was until��..
I knew God�s will

Will�s mom had to work two jobs
and we�d watch him when she had to work too late.
And we�d all laugh like I hadn�t laughed since I don�t know when.
�Hey Jude� was his favorite song. At dinner he�d ask to pray.
And then he�d pray for everybody in the world�. but him (self)

I�ve been searching wondering, thinking�..lost and looking all my life
I�ve been wounded, jaded, loved and hated��
I�ve wrestled wrong and right.

He was a boy without a father,
And his mother�s miracle.
I�ve been reading, writing, praying, fighting,
I guess I would be still��
Yeah, that was until��..I knew God�s will

Before we moved to CA , his mother said they didn�t think he�d live.
She said�.�Each day that I have with him�..
well, that�s just another gift�.
And I never got to tell her,
That the boy showed me the truth��

In crayon red on notebook paper�.he�d written �Me and God love you�

I�ve been searching, praying, wounded, jaded�..
I guess I would be still,
Yeah, that was until�.
��I met God�s Will on a Halloween night,
he was dressed as a bag of leaves�.

Friday, May 6, 2005 7:10 PM CDT

Cassidy is doing very well!! We are happy to report that it has been a very uneventful 4 months! Her surgery last Fall was successful and we are so thankful for the degree of continence she has (with catheterization, no leaking and her ACE for bowels). Cassidy has settled back into school and it�s hard to believe that summer break is a few short weeks away!! WooHoo!

Cassidy is asking lots of questions lately about life and WHY she has different abilities than her peers. She gets frustrated at times and it�s hard to have those types of conversations with a six year old and know exactly how to answer her. But God is faithful and I pray daily that He will cover our weaknesses and fill in the gaps in her heart as far as understanding and acceptance in the days and years to come.

One quick cute story�.most of the girls in her kindergarten class like to chase and tease one of the first grade boys. They've named him �The Cute Boy� and they bug him mercilessly at recess every day. Well, Cassidy can�t run and chase him like the other girls do, but she loves to watch and cheer �The Cute Boy� on. And lately, guess who has been getting attention from �The Cute Boy�?? Yep!! He encourages Cassidy when she tries to climb on the playground equipment and she often says he pats her on the back and smiles. The other day when the recess bell rang, he came alongside and took her hand and offered to walk her to her room!! That was cute for me to see, as I just happened to be on �recess duty� that day. Lord�.thanks for the smile!!

Yesterday, one of Cassidy�s friends with spina bifida (who was six years old also) passed away. It�s been so hard to process this unexpected, sad, sad news. As our hearts turn to God in prayer for her dear parents, sisters and family�..we are reminded that this Earth is not our real home�..we are just passing through. We love you Viviana and we�ll miss your sweet, shy smile. But we'll see you soon on that Heavenly Playground!!

The following two writings have meant so much to me in the past couple years:

"And one day when all of us parents are in Heaven, we'll be the ones who will never get tired of seeing our little ones with their perfect bodies and perfect skills. Can't you just picture it? There's a Heavenly playground with kids all over the slides and swings and jungle gyms. And all around the playground are parents sitting and chatting and watching with great joy.

One angel says to the other, "Why are all these saints just sitting here watching the little ones? Don't they know they don't have to watch them? Don't they know they're safe?"

And the other angel will respond, "Oh, those Saints are the ones who never got to see their children do those things on earth. They're not here because they have to be, they're here because they don't want to miss a single minute."

By Susan Mahserjian-Smith

*******************

Below is an excerpt from the book �Deadline� by Randy Alcorn (pages 251-253) *This is a wonderful novel about 3 close friends who are in an automobile accident. Two of the men died in the accident�.one of them goes to Heaven and one of them goes to Hell. The third man is only injured and left on this Earth to figure out what his eternal future will be. If you read this book, you will never think of Heaven (or Hell) the same again!! Below is an excerpt that may give us some insights into some Biblical principles about Heaven.

�Zyor (a heavenly guide) led Finney into a great hall that opened into an expansive meadow. It was disorienting, because the hall, gigantic as it had appeared on the outside, was only a fraction the size of the meadow within. And before he had entered, behind the hall, he had seen a landscape much different than what he saw now. Like many of heaven�s doors, it seemed to lead to a world of its own, a world within a world.

Thousands were gathering here, looking toward someone who was speaking. Whenever he paused in his speech, as if for a translation, little discussions broke out everywhere�..There was no rudeness to these midcourse discussions. On the contrary, it was the intense interest in every word of the speaker that prompted them. Once explanations were made(by the angels), attention went back to the one up front like iron filings drawn to a magnet, and he resumed speaking as if there had been no interruption. Everyone listened because they wanted to learn. What flowed from the speaker was fresh water to a thirsty mind. Finney was again exhilarated by his vastly improved ability to retain, yet challenged that every new thing in this lecture seemed eminently significant and worthy of retaining.

Finney was engrossed in the speaker�s words, which seemed a direct extension of his life. This one had the wisdom of a thousand mentors. Finney was inexplicably drawn to him and kept asking himself who he was. His face seemed almost a hybrid of a child�s face and angel�s face. Why was this face so familiar? Finney gasped!

He knew this face! It was the face of Little Finn! But Finn was still back on earth. And yet�.

Of course, Finney thought. It was his face, the pure delighted face of what was called on earth�.the Down�s syndrome child. This professor around whom gathered the students of heaven (some of whom had been professors on earth), was a Down�s child� rather a man with the enduring qualities of a child. How had he obtained such wisdom and eloquence? Was it from his long residence here in God�s world? From an intimate acquaintance with God that preceded his entrance to this world? Finney theorized he might even be a part of a unique order of being, a special strain of Adam�s (the human) race. Not a genetic accident, inferior to the norm, but one challenged in some conventional senses, yet in profound and invisible ways, superior to the norm.

He listened as the man, this eternally young man, spoke. Even the texture of his voice reminded him of Little Finn and Finney marveled at his words:

�When our Lord Christ walked in the dark world, we are told �People were also bringing babies to Jesus to have him touch them. When the disciples saw this, they rebuked them. But Jesus called the children to him and said, �Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these. I tell you the truth, anyone who will not receive the kingdom of God like a little child will never enter it.�

�Again, Christ said, �I tell you the truth, unless you change and become like little children, you will never enter the kingdom of heaven. Therefore, whoever humbles himself like this child is the greatest in the kingdom of heaven. And whoever welcomes a little child like this in my name welcomes me. For he who is the least among you all�he is the greatest. But if anyone causes one of these little ones who believe in me to sin, it would be better for him to have a large millstone hung around his neck and to be drowned in the depths of the sea.��

�To those who wanted to silence the praise of children, Jesus responded, �Have you never read, �From the lips of children and infants you have ordained praise?� Again Jesus said, �I praise you, Father, Lord of heaven and earth, because you have hidden these things from the wise and learned, and revealed them to little children, ��

�The young man (the speaker) surveyed the audience and seemed to achieve the impossible by establishing eye contact with all the thousands at once. �I, who stand before you today, and all those of my kind, are testimonies to the truth written in still another place: �But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong.�

Finney found himself wondering if Little Finn would someday occupy this role of teacher in the new world, and if he would have the privilege of sitting at his son�s feet. The thought caused his spine to tingle, and even as he wondered it, he knew the answer would be yes. Finney listened in rapt attention as the young man moved on to develop the favorite theme of heaven: �God�s Son is Alpha and Omega, beginning and end�..�

The child-like voice became more powerful with every sentence, his angelic face racked with synchronous joy and pain, the latter at the reference to the scarred hands of Jesus.

This young man had been �handicapped� in the other world. Disabled and unable to deal with life in conventional ways. He could never make much money, never hope to be Time Magazine�s Man of the Year. The majority, on knowing what he was, would elect to take his life before he was born, or let him die of neglect afterwards. But here in God�s realm, his value was so obvious that it showed such thoughts to be unspeakably evil�. unthinkable to the sane mind.

On earth, he would not qualify for a seat on the orchestra. But here and now, he was the conductor, surrounded by rapt and attentive musicians�.. Finney could see the coat and tails, the flying hands and baton. He felt the line between audience and orchestra blur until there was no audience now, only orchestra, conductor, music�.melodies and harmonies�the music and praise of Heaven, directed towards it�s Creator.�

Sunday, January 2, 2005 1:21 PM CST

What a Christmas gift we received!!!

Cassidy bravely got her last tube out a couple days before Christmas (it was thru' her abdomen going to her bladder and NOT fun to get taken out!). Six weeks of recovery from surgery finally drew to a close!! WooHoo! But the doctor said it could still be 1-3 months before the irritation caused by the surgery would calm down in her bladder. Only then would we know whether the bladder enlargement worked and whether her bladder capacity would truly increase. And whether her newly constructed bladder neck would hold the urine in.

BUT Christmas morning during all the fun holiday chaos....we cathed her and we were amazed at the full bag we got!! 250cc's!!! Excitement got the best of me as I held it up for Grandma and the rest of the family to see!! (oops!) This is a normal bladder capacity for a child her age!! (before we only got 90cc's) She's not leaking in between cathings and we continue to get MUCH more urine out than we've ever gotten before!! She's even been able to have the sensation/feeling of a 'full bladder' for the first time and asks me to cath her!! She's ready to graduate to fun, new underwear, but emotionally she's not quite ready to get out of diapers (b/c she's afraid of accidents). So we'll work on that....

It is such a relief (and a praise to the Lord!) that the last tough 6 weeks were not for nothing!! Two years of prayers are finally answered!! She still has significant pain every few hours from bladder spasms. Hopefully this will decrease over the next month or two. She continues to be a trooper through it all. Yesterday, she packed up a little medical kit of REAL first aid supplies which she plans to "save for someday when I'm a real doctor, Mom".

Thank you for your continued prayers and encouragement. We are so thankful!!

May God continue to give us all His peace that transcends all human understanding!!

Thursday, November 25, 2004 10:33 PM CST

A few days before we entered the hospital for Cassidy's recent surgery, one of the pastors from our church asked me to write an article for the church newsletter for Thanksgiving. I agreed to, but the timing was interesting....at first, all I could think was "it's just one more thing I have to do". Things were stressful that weekend as there was so much to do to prepare the family for the hectic couple weeks ahead. I had been dreading this surgery and recovery for over a year. I was frantically praying that God would work out all the details....big and small, because they seemed more overwhelming each day. But as always, God had His hand in the timing of this 'assignment' given to me. He knew I needed to take the time to sit down and write what He has taught me about thankfulness. He knew I needed to (once again) relinquish the control back over to Him. He gently reminded me that "Be still and know that I am God" (Ps. 46:10) is applicable for every moment in our lives.

Here's the article....

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�Thank you Lord�. A familiar phrase that is usually not too hard to say....we do have so many blessings in our lives! But in June of 1998, when our unborn daughter was diagnosed with spina bifida and severe hydrocephalus, the tough stuff of life came crashing down and really tested the basics of my faith. I found myself on a journey that would take me places I never expected to go.

�All things� Lord? You�ve asked me to be thankful in ALL things? (1 Thess. 5: 16-18) But THIS Lord? My child is going to suffer! Her prognosis is not good. How do I summon the strength? How do I let go of hopes and dreams for her life? Can I really rise to the challenge of parenting a child with special needs? Is there really a plan for good amidst this grief and sadness?

However, slowly but surely, God did bestow the amazing gift of a �peace that passes all understanding� (Phil. 4:7). He brought me through that dark storm of tough emotions to the other side where His rainbow of promises was shining brightly! How could I NOT be thankful when I was lovingly picked up by the Creator of the universe as I lay prostrate before His throne? I was gently brushed off and set upon the path ahead with a strong arm around my shoulder. Thankfulness pervades my soul!!

Today, I can say with every ounce of my being....Lord, thank you for this precious child! Thank you for the journey! Thank you for breaking me out of the trap of �my will� and showing me the amazing gift of YOUR will and purposes! Thank you for promising to weave a beautiful tapestry out of our lives, despite our limitations on this earth. Thank you for the priceless lesson that in this life, we ALL have weaknesses and dis�abilities�...BUT you have chosen to show Yourself and reveal Your awesome power and glory, even through our limitations and imperfect lives! (Is. 43:7, 2 Cor. 12:9-10, 1 Pet. 1:6-7, John 9:1-3)

Recently God reminded me of this praise chorus (as we faced another serious surgery for Cassidy) �In all things��In all things...In ALL things...I will worship you. When trials....seem to come arising....I will praise Your Holy name�.

Yes, thank you Lord.....for making me dependent on Your strength every single day. Thank you for carrying me as I carry her. Thank you for causing me to slow down and appreciate the little joys in life. Thank you for giving me a new longing for heaven where we will all be whole someday! Thank you for the precious lesson that I humbly serve YOU when I serve the �least of these��.my children. (Matt. 25:31-40) Thank you for not letting go of my hand when I don�t have the strength to hold on and for loving me, despite my many failures and inadequacies.

Thank you for � assigning me my portion and my cup� (Ps. 16:5) ~ a cute little kindergartener with a quick wit and sparkling blue eyes! I get the privilege of holding her hand for the rest of my life! I am so blessed....

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UPDATE for December 17, 2004 ~

It's been just over a month since her surgery and Cassidy is still being quite the trooper. A week ago, she got 3 of the 4 tubes (coming out of her abdomen) taken out and her staples removed (which was MUCH harder and more painful for her this time around!) She's decided she wants to become a "staple doctor" so she can take out kids' staples much more gently!!

She still has the main 'super pubic' tube in until right before Christmas. She's been experiencing painful bladder spasms off and on the last couple weeks. This little kid has been such a trooper through it all, but we are both starting to tire of the poking and proding she must endure (and mom must administer) throughout each day. The other day she said...."Mom, I'm just going to write S-T-O-P on my hand (her palm) and show it to you each time you have to do something with my tubes!!

She's been back at school (off and on) for two weeks. Mom visited her classroom every couple hours to empty her leg bag and give meds. Again, for the most part, Cassidy takes it all in stride!

It won't be until the first few weeks of January, that we'll be able to see if the bladder augment has expanded her bladder capacity and been successful. Please continue to pray with us that this whole ordeal was worthwhile for her bladder/kidney health. We still need some miracles!! She is still having quite a bit of bleeding out of her ACE stoma (which might continue indefinitely) and that is unsettling for Cassidy and causing her some anxiety.

Cassidy was worried about the school Christmas program (which was on Dec. 10) and having to sing and stand in front of "all those parents!". The kids had to sit down on the ground and get back up again about 10 times, which was hard for her. But she did beautifully and did all the fun hand motions and at times I could hear her voice out of all the rest! (probably just a 'mom thing'!) Cassidy's favorite song that night was "I Can Only Imagine" (by Mercy Me) which talks about trying to imagine what it will be like being in Heaven and seeing Jesus for the first time. All I could think of (while they sang this song) was how I couldn't possibly imagine THIS day, six and a half years ago when we were given an awful (and hopeless) prognosis for our unborn daughter.

Have a blessed and memorable Christmas! Thanks for checking in on us!

"Now to Him who is ABLE to do immeasurably more than all we can ask or imagine, according to His power that is at work within us. To Him be the glory!!" Eph. 3:20,21

Wednesday, November 17, 2004 5:53 PM CST

Here's a quick update on Cassidy:

Yesterday, Cassidy had bladder augmentation surgery. They took a piece of her colon and added it to her bladder to increase it's size and capacity. This also helped reduce the pressures in her bladder which will keep her kidneys healthy. The procedure went well and the doctor also was able to do some repair work on her bladder neck and ACE stoma. It took over 5 hours.....but thankfully a nurse called us hourly to let us know how things were going. Needless to say we were pretty ansy!! (Okay....I was pretty ansy! That last hour I was pacing the floor and ready to go wait outside the operating room doors!!)

Cassidy's been a trooper as always, but she is in a lot of pain. She is quite good at not moving her body an inch (even when we turn her from side to side) and is going through a stack of movies we borrowed from the library. She's sleeping a lot and doesn't complain, but often has a few quiet tears running down her face. It's tough to watch her go through this and know she's still too young to understand why this all needs to happen. Tomorrow, hopefully she will be able to drink water!! (WooHoo!!) And we can get her down the hall to the playroom in a wagon.

We expect to be here for a few more days. Please continue to pray for no infections and a smooth recovery. It'd be nice to get some sleep too!! Hospitals are not real condusive to a good night's sleep!! The little baby in the room next to us cries half the day and night. Last night, Cassidy wanted to pray for him to feel better. Then when he stopped crying once, she said..."Mom, I think the nurses are dancing for him".

Cassidy has three tubes coming out of stomas in her belly for the next month. The adventure continues!

Thanks so much for your thoughts and prayers! It means more than you know!

Joel and Cheryl
********************************

UPDATE FOR 11/19/04

We're still hangin' out at the hospital. She's on a liquid diet finally and is enjoying popsicles. She hasn't eaten since last Saturday night, so she's REALLY looking forward to eating a bag of chips that she packed up on Monday for when doctors give her the thumbs-up to eat again!!

Cassidy's ODing on "Full House" re-runs that we taped for a couple weeks before we came. She and her sister LOVE that show. She get's pretty distressed though when I try to explain that Michelle is really 'twins' and they are 18 in real life!! "No Mom....sorry but you're wrong about that!"

Mom got some good sleep at home last night while Daddy spent the night with Cassidy. Jamie had to shake me to wake up...."Mom, the alarm's been going off for 15 minutes!!" It's amazing how sleep and a long shower transforms you into a REAL person again!!

Hopefully we'll be home by Saturday night or Sunday. We need to get her eating a regular diet, sitting up and getting by with less pain meds. Again we're reminded never to take 'typical family life' at home for granted!! It'll be great to all be under one roof again!

Thanks for your continued prayers!

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UPDATE FOR NOVEMBER 21, 2004 ~

There's no place like home....There's no place like home.....There's no place like home!! (sorry.....we just watched Wizard of Oz last night!)

Cassidy is now settled in her own bed or perched on a comfy couch in the family room! Daddy graciously camped out on her floor last night in a sleeping bag to help her and get her through the pain she's having. And Jamie is doing a great job as Cassidy's personal entertainer and cheerleader!!

Friday night and Saturday morning, at the hospital, were a bit rough as the emotions of the last week (and trauma of surgery) hit Cassie hard. She got frustrated, irritable and sad. She starting asking some tough questions about why she had to go through all this. What do you say to a six year old who wants to know...."Why can't I be like you? Why do I HAVE to have all these tubes coming out of my stomach?" Please continue to pray with us that God will give us the appropriate words....but most importantly, that HIS strength and peace will comfort her heart and mind in the weeks to come. It HAS to come from Him b/c only He can speak to her soul and give her peace and contentment with the 'portion and cup that He has assigned to her'. (Ps. 16:5)

As great as it is..... to load her in the car to go home.....it's always accompanied by a little bit of fear in my heart as the responsiblity for her care is now just on our shoulders. It's scary to realize that the doctors and nurses are no longer there to help monitor her temp, pain, meds, incision, fluids, flushing tubes and irrigating her bowel and bladder manually, etc. Please pray that we make good decisions and are always alert and aware of what's happening with her. We'll all be glad when the next month is over.

Again, thank you for your encouragement, prayers, cards, gifts and meals! It means so much to know we're not alone in this.

God bless,
Joel and Cheryl

Wednesday, September 8, 2004 3:59 PM CDT

Happy Birthday Cassidy!! Six years old....hard to believe!! Going off to school, losing teeth and becoming her own little unique person....pretty amazing!!

Here's a quick update about what's been going on in Cassidy's life the last few months.....

We started the summer with a fun family reunion. It was a dream come true for Cassidy to have 12 cousins around for a week!! But amidst the fun, Cassie got a bit side-lined for the summer. One day when we had our boat out on the lake, Cassidy got a small burn on her heel from the sand or a rock. Unfortunately, this small innocent sore turned into a HUGE problem and would not heal. It got worse and worse....finally she ended up in a cast for 5 weeks and unable to walk for 7 weeks!! She was a trooper, as always, but her lack of mobility was tough and caused her to develop new anxieties and more dependence on us. She did get proficient in using her wheelchair and she really enjoyed Jr. Wheelchair Sports Camp in June. She even tried out a handcycle and sled hockey on the ice!

We enjoyed several camping trips this summer and Cass became a pro at navigating for Mom when we took long rides on the 4-wheeler together. She talked the WHOLE time, loved exploring the outdoors and kept telling me to "go faster!"

Last year, Cassie had a great 'exposure' year of Kindergarten. Because her birthday is so close to the cut-off and because she has had to catch up so much developmentally the last three years, we knew that she'd be doing two years of Kindergarten. She's attending the same school as her siblings this year and is finally settling into the new routine. The first couple weeks of school were unexpectedly tough!! She had much new anxiety about being in school and staying there all day.

It finally hit us that she's slowly realizing that she can't keep up with the other kids, all the time. She has begun expressing fears of being left behind when the bell rings, or when she's climbing the stairs slowly, etc... Last year, she was afraid to play on the playground equipment and would often just "hang out" (as she puts it) on the edge of the playground by herself. My heart dropped a few days ago when Cassidy finally expressed to me her worries about going to recess...."Why do they have to have three recesses Mom? I don't like recess...."

A new chapter in our lives is beginning..... Since she was born.....I've wondered, worried and prayed about which direction to go with her education based on her needs. Always in the back burner of my mind.....What should we do? Where will she go? How will she do? Will the 'world' accept her? Letting her leave the safe and protected environment of our home to go, on her own, out into the big world that might not see her the way we do.

Based on the original awful prognosis the doctors gave us....I really never dreamed she could go to the same school as her siblings. When she finally started to walk and talk when she was three years old....a piece of me began to hope it could be a possiblity. Because this school is private, it will only be able to make basic modifications and accomodations for her. So we still wonder what the future holds and is this really the right place for her. But God has opened the doors for now and we're just going to have to trust Him for wisdom and guidance for the future.

Through both Cassidy's and my tears and fears the last few weeks....God has been faithful and provided peace and comfort. A couple little girls have come alongside her and befriended her the last three weeks. In my mind, this is a miracle, because it is rare for young children to possess the type of compassion and empathy to see through another child's limitations and 'differences'. Months ago, I prayed for special little friends for Cassidy this year..... and now, to see their faces and learn their names...these 'buddies' that God hand-picked to ease Cassidy into this transition. These little girls hold her hand in between classrooms and stay by her when recess ends and the rest of the kids run to the school. I am in awe and so thankful!

Today, after I catheterized her at lunchtime.....I peeked out a window to watch her on the playground below. She was with her friends...following them around on the grass, amidst a bunch of kids playing soccer. She kept up the best she could (she gets really tired after walking for more than a few minutes straight). The girls would run ahead at times, but then slow down when they realized she was behind. She was really being a trooper keeping up with them. I was really proud of her.

Yes, it was bittersweet....looking down on this big playground full of 100 or so kids. It struck me as a small representation of the bigger world outside those fences.....organized chaos with all the different activities, sports and games to participate in ....various abilities, strengths and weaknesses....running, yelling and playing going on all around her. But she was holding her own. She had a smile on her face and friends by her side. I walked away with a just one tear and a small smile knowing that this was just the beginning of a new chapter in Cassidy's life. God constantly looks down on us like I was watching her. But He intimately knows her thoughts, her fears and her needs and He's with her every step of the way. The song playing on the radio when I got in my car was...."I Will Rest in You" by Jaci Velasquez. Just what I needed to hear. The future was coming whether I liked it or not. God is in control. My job is to surrender to His will and plan. And once again, I'm so thankful I'm not the one at the wheel!!

Cassidy has her bladder augmentation surgery on November 16th. We went through that whole process last summer and it's a pretty rough surgery and recovery period. It will again be several hours in surgery (a portion of her colon will be added to her bladder to help her hold more urine). Currently, her bladder only holds 1/3 of what it should for her age. She'll have several days in the hospital and several weeks of recovery w/ tubes, a leg bag and quite a bit of discomfort. Hopefully, this will allow her to stay dry between cathings and get out of diapers. But most importantly, it will reduce the high pressures in her bladder so that her kidney's aren't damaged. We'd very much appreciate your prayers when the time comes!! But for now....we're enjoying watching Cassidy blossom and grow! The adventure continues....!!

Thanks for checking in with us! God Bless!

Tuesday, April 6, 2004 11:05 PM CDT

Well, it's hard to believe Spring is here already! As I work in my flower gardens, cutting away the old, dead growth from last year.....the new green life is revealed and sweet flowers appear out of nowhere!! Every year, I love this reminder that God brings new beauty and growth out of the tough seasons of winter in our lives. His gentle pruning is sometimes so painful, yet so priceless as our hearts and perspective change and we see how He brings a rainbow of color and beauty out of the ashes.

Cassidy had her 7th surgery in March to do some revisions on the ACE and Mitrofanoff procedures that she had done last July. The urologist injected Deflux into her bladder to hopefully stop the leaking so that her bladder could try to expand in size and capacity. He re-did the opening to her ACE stoma that was scarred over. He also looked into her ACE tubing (part of her appendix) to see why it has been so hard to insert a catheter into it each evening when we do her bowel routine. Unfortunately, he didn't find anything definitive and easy to fix, so we continue to struggle in that area. He tried the Deflux as a last ditch effort to avoid another big surgery....bladder augmentation. So far it seems to be working marginally. The leaking is less during the day, but she still leaks at night. I have to cath her more often b/c she feels the pain of a full bladder. So we'll see what happens in the next few weeks.... (Update: Another deflux injection surgery is planned for May 26th. Please pray that this will work to help her bladder capacity increase and stop leaking. We REALLY don't want to do the bladder aug. surgery. It would really be a tough thing to put her through again and it could create more problems for the future....)

The girls (Cassidy, her sister and their cousin) and I enjoyed a fun trip to CA for Spring Break to visit family and play on the beach! Cassidy was in awe during her first trip to Disneyland and proved to love the fast rides, just like her sister! She begged to go on Splash Mountain and Thunder Mountain over and over again! Pretty amazing for a five and a half year old! The girls all enjoyed the treat of less time in waiting lines b/c of Cassidy's wheelchair. By 10pm that evening, the two older girls were trying to figure out a way to all stack themselves in the chair b/c they were so tired and couldn't possibly walk any further!!

Cassidy's enjoying Kindergarten (at a public school) and her new friends. It has been interesting dealing with a few instances of some negative (inquiring) comments that a couple kids have made to her regarding her braces or how she walks, etc..... She is pretty good about telling us when someone has hurt her feelings or made a comment, so that we can talk it through. This is just the beginning, I'm sure....so we're praying for much strength and wisdom for the future! Cassidy will attend another year of Kindergarten next year at her brother and sister's private school. She's made great progress in catching up to her peers and this year has been a great introduction for her. I have to keep reminding myself that she's only been walking and talking for 2 and a half years. Wow.....She HAS come a long way!

Cassidy is a bright kid and has quite the sense of humor. Over the years, I've tried to write down some of the cute things my kids have said when they were young. Cassidy continues to crack us up! Her "perspective" (based on her life experiences) has made many of her comments unique and so very interesting.....Here's just a few (all of them in the last month or two):

*One day, when I was tucking her in bed, she said...."You know what was really rude today mom? ("rude" is her new word that she's using a lot this week....last week it was "nasty!" and the week before it was "usgusting!") Today, Jamie wanted me to play 'dance class' with her and I was in the middle of a surgery! That was SO rude! I couldn't finish my surgery on a little boy (doll)...I had to stop and play with her!"

*She was crawling around in the morning right after she got out of bed and said...."Mom, I need to walk so I can carry this baby and all her stuff"....so I said, "Okay, I'll go get your braces"....and she said, "Mom! You know I need two socks, two braces and two shoes and my belt!! You KNOW that?!" (like DUH! mom!!)

*When "changing" her baby doll's diapers, she noticed that there was a seam line straight down the doll's back and she matter-of-factly remarked that "Oh, that must be her spina bifida!"

*The other day as we were driving early in the morning to Children's for her surgery, Cassidy piped up from the backseat...."Mom, since I have to go have this surgery today, when we get home tonight, can we take Jamie to get her allergy shot. That's only fair you know!"

*Last night, she noticed that one of her dolls had a "hole" (let's just say...down there in her 'private area'). Her eyes got all big and I was thinking....oh dear, she's going to figure out that if we put water down the hole in her mouth...it will come out in her "potty area"!! But she remarked excitedly..."Oh good mom, now I can finally cath her!!" She went right to her closet to get out a catheter! It also bothers Cassidy when her baby dolls don't have belly-buttons b/c she can't understand why they don't have a hole in their belly button (like she does) to cath through.

*The other day, I asked her if she wanted a piece of toast with jelly on it. She exclaimed...."Ew gross mom! I don't want that jelly stuff that you put on my catheters!!" (KY Jelly) "I want honey on my toast!"

*When Josh was little, he used to call the 'long white jet contrails' that you see up in the sky, 'a shot' )....i.e. "Look mom, the plane's making a shot (through the sky)!" Because of this, Jamie called them "shots" too. So the other day, Cassidy asked me what was "that" up in the sky. So, in keeping w/ family tradition, I explained that the airplanes sometimes make smoke as they're flying, and that Josh and Jamie called it "making a shot through the sky". She was quiet for a few moments and then said very matter-of-factly......"Oh, yeah Mom. I see it. It's sharp and pointed like the shots they give me all the time at the hospital." Needless, to say, I was speechless and didn't even know what to say.....

*This question sent me rolling...."Mom, do you have to think when you cath me, like Grandma and Aunt Jeanni have to?" Cassie loves to talk (a lot!) and also does a great running commentary on how to do the cathing process when her Grandma and Aunt "get" to do it. Sometimes, they have to tell her to "Please be quiet for a just a minute, so I can THINK about how to do this"

*When I gave her a dose of her meds the other day...."Mom, this blue stuff is usgusting. I need "taste". I am not gonna have this one more time in my life, okay?! It's not the bestest and I am so serious about it. You have to believe me!" (hmmm....what do I say when she has to take it 4 times a day....)

*The other day, I was holding her hand as we were navigating through some snow and ice outside. She let go for a minute and fell down and exclaimed..."Mom, you slipped me!"...then she chuckled. "I'm just kidding...I slipped myself!"

Well.....thanks for indulging me and letting me share about the little girl who makes me giggle (and think) throughout MY day!!

Thanks for your prayers and being a part of our lives!

Thursday, November 20, 2003 12:31 AM CST

We thought this would be a fun and easy way to continue Cassidy's story for family and friends (her birth through 3 year story web site address is listed below). But we most importantly want to provide encouragement and hope to other parents who have a newly diagnosed child w/ SB. We were given a very grim diagnosis and prognosis for Cassidy's future when I was 21 weeks pregnant. There have been many tears of joy and tears of pain along the way. But we wouldn't trade her for the world!! We have a different outlook and priorities than we used to. We definitely don't take the little things for granted anymore. God has taught us so many lessons along the way. The future is still uncertain and will hold some obstacles, but we know we're not alone and we know every step is worth it!

It's hard to believe Cassidy is 5 years old now and attending Kindergarten! But first, we'll give a quick update of the last 2 years:

A few months after she turned 3 years old, Cassidy began to walk!! She didn't like her walker, and would only use her crutches to hold out to the side to help her balance! Her Daddy (who was sidelined on the couch for a few weeks due to a bad knee injury and surgery) would bribe her w/ M&M's to walk back and forth across the room! Soon she got the hang of it and began walking everywhere (she only needs braces & her twister cables). During the same time period, she began talking! We were amazed that this little girl who could only say a handful of words and a handful of signs, all of a sudden began talking in complete sentences!

She enjoyed preschool for two years and we had some amazing teachers and therapists who spent so much quality, caring time with her! She learned to write her name the week that preschool ended! She has come such a long way!

I wish God could have given me a snapshot of her as she is now....back in that dark, scary ultrasound room when the doctors gave us such a grim prognosis for her. The process of grieving, crying, praying, searching for answers and finally surrendering our little girl and her future to God was necessary, but oh, so hard. Now, I know what a privilege it is to be her mom and I wouldn't trade the journey for anything. God is faithful, even when it continues to be overwhelming at times....I am learning to trust Him with every single little detail of our lives. He does give strength when we are weak...we just have to ask! Each night when Cassie gets tucked in, we tell her that if all the 5 year old girls in the whole world were lined up, we would walk for miles until we found her, and say "We want THAT little girl!". And then she proceeds to tell how she would choose each of us!

This past summer was a bit rough on Cassidy. She had a minor surgery on her toes and then in July had a major abdominal surgery and was in the hospital for a week. It was a rough process to go through. Quite a bit of pain, meds and a 6 week recovery period. But it has gotten her on the road to continence!! Her rewards were new underwear (which she has never been able to wear before) and sitting on the potty for the first time in her life (but she's glad she only has to do it once a day!). Believe it or not, she wasn't too thrilled with either of those things at first! But someday she'll appreciate it! She had the ACE procedure done (stoma in her abdomen which allows us to do a nightly bowel program by putting warm water through an IV bag in order to flush out her system). She also had a mitrofanoff procedure done which created a stoma in her belly button which we now catheterize her through. These are pretty amazing procedures and they enhance the lives of many children w/ SB. Cassie will most likely have another surgery in April to expand her bladder and revise the ACE a bit. We're still praying for a miracle though. It's hard to imagine having to go through that whole process again.

Cassidy is making friends and doing great in Kindergarten. She got an award last month for always being cheerful and showing enthusiasm for whatever they are doing! She is catching up in many areas and knows most of her letters. She always has a pencil and paper in hand and writes misc. letters and pictures everywhere!! She loves to talk and has quite the sense of humor (hard not to have when you're in this family!). She is walking well and is even starting to try stairs. She only uses her wheelchair for long distances or when mom's back is aching.

Cassidy is developing some sweet little friendships with other children w/ SB. It's been so special to watch....and so helpful! She knows she's not alone in different struggles. When she asks questions about why she is different or can't do the things other kids do....it is really neat that we can discuss the issues in the context of knowing others with it. She can list off all of her friends who wear braces, and glasses, and get cathed, and have surgeries, and take yucky medicine, and can't jump, etc....then we talk about all the things she CAN do ~ like worship dance class, horse-back riding, four-wheelers, camping, bike-riding, boating, and so much more! :)

Thanks for checking in on us! May God bless you and show you His strength and guidance on YOUR journey through life!

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