Double Digits

We are approximately 2 weeks from reaching double digits in casting.  That's right cast #10 will await us October 17th.  I am feeling so many emotions as we approach this milestone.  We have many friends who have already entered the double digits and I can only assume they somehow felt some of these same things.  For us #10 means, 11 times under general anesthesia before his 3rd birthday.  William has also had major narcotics on 3 occasions for the side effects from the versed, he has had countless skin infections, he has felt pain more times then any parent can want for their child and he has slept on a plaster board for more of his life then most adults ever will.  On the flip side he has laughed, shared moments with new friends he would have never met otherwise, crawled, walked, swam in the ocean.  He has entered the OR 10 times and never been cut by a scalpel, had foreign material placed on his ribs or spine or spent an overnight stay in the hospital.  His blessing far outweigh the flip side of casting.  

Our friends and family are curious how much longer we have.  I have to be honest with you I don't have a good answer for you at this point.  William's x-rays still show significant abnormalities that need to be addressed before he will ever prosper in a brace.  I am going to put my bet on the fact that we are looking at another year maybe 18 months in cast.  I wish I had a crystal ball that could predict where and how this would all end but then again I am not sure I would have had the strength in the beginning I have now if I knew the journey was going to be this long.  All the studies so far address the most treatable curve (started casting under 50 & under 2 years old).  I have seen kiddos that meet both criteria and they are doing remarkable well.  I have also seen kids who meet one of the criteria attain their milestones and move to bracing.  William's curve started at 67 degrees and thankfully he was only 10 months old.  He had time on his side even though the numbers were not.  Although the literature put him in the category of unknown results with casting he still has a dog in this fight.  He has gained incomprehensible correction, his spine has stayed flexible through the entire process and we are blissfully still casting. 

My friend Kelly has always told me to write from my soul, it's raw and true and very relatable.  I can assure you this post is anything but from my soul.  I am feeling very numb as we enter number 10.  I have the shackles on person telling me you need to eternally grateful for everything you have. You have a living breathing child who is still fighting this damned curve in his spine with every minute.  He is not in imminent danger of leaving this world and he is under the best possible care.  The shackles off person is numb from the journey.  I am reaching and daring time to stand still in order to catch my breath.  I am creating projects to keep my mind from the racing it seems to do.  I am driving my friends and family nuts with this thought or that project in an effort to have control over something in this crazy journey.  If you have been placed on my project list I am sorry.  If you can bare with me I promise I will go back to status qua once we get through this next cast.  I will give you 10 weeks of normal before flipping out again.  When this roller coaster finally comes to a stop I will once again board the crazy train to the unknown as we spend the next 15 years monitoring his spine some more for any sign of movement that would mean he is once again regressing. 

Ongoing projects to keep my mind off casting include the following: Fundraisers for my nephews basketball team, cheerleaders at Bosse High School, Clean the flippen house so it can be appraised next week, write my letter to Robin's girls with my sister, finish the first LCC newsletter that will hopefully go out this Friday, complete homework for my Tuesday class, remember to call into my Tuesday class, finish the float for the lighthouse parade, start the float for the lighthouse parade, find a Britax seat for the new family from Evansville starting casting, work on web page for new business, work on business plan for new business, make contact with John Scoliosis this week, confirm the cabin for the LCC Mom's weekend, book the hotel for October 16th trip to Chicago, play with William so he isn't completely neglected, take the crap in the back of my van to Once Upon a Child, pick up the crap from Once Upon a child when they tell me the don't want it, organize PJ drive for the fall, email reminders to parent readers regarding bringing their own book, try to talk to principal about what I witnessed with kids being unkind to each other at Cody's school, purchase and install stuff in Chad's bathroom prior to the appraisal next week, pray the appraiser has a sense of humor, finish tutu's for the LCC girls and breath.  Sometimes it works and sometimes it doesn't but this is my coping mechanism for now.

Chad's niece Chloe posted "and when the night is cloudy, there is still a light that shines on me, shine on til tomorrow, let it be."  I am positive this wasn't meant for me, but when I listened to the song this morning it did give me some peace.  I can create all the mental chaos in an effort to distract my mind from spinning, but sometimes the simple answer is to just let it be.  Thanks Chloe! 

Learning and Growing

I received a friend request on facebook Friday from someone named John Scoliosis Isdell.  In my half sleep riddled mind I was thinking who would give their child the middle name Scoliosis, sick people.  I then clicked on his profile and realized he used the Scoliosis to get my attention.  It worked.  John and I are now friends on facebook.  As I perused John's profile I clicked on links which lead me to his web page: www.scoliosisinternational.org I don't know how John found me on facebook but I have to believe it was divine intervention.  John is a Scoliosis patient who was diagnosed at the age of 14 years old with a curve that progressed rapidly in a short time frame.  He is a survivor of rod surgery and has chosen to make his mission in life to improve the lives of those living with Scoliosis and raising awareness for the condition.  Already John and I are kindred souls.  As I continued to read further and click on more links, I found that John is in the process of creating a safe haven in Chicago for families enduring spinal surgery to recover in the comfort of a home he will call Scoliosis House.  WHAT AN AMAZING idea.  If you have been with the Lucky Cast Club since it's inception, you might remember the blog that was the catalyst to movement.  It was a long rant where I laid out my dream for us as patients living with Infantile Scoliosis. My biggest and most outlandish wish was for the Lucky Cast Club house for patients coming in for casting to have a home and haven to relax our night before OR.  Um John...you had me at hello, tear. 

After reading so much about John it was time to write my first Dear John letter.  I have reached out to John first and foremost to thank him for having the tenacity and courage to create something so amazing for families in Chicago as well as world wide.  I then offered to help him in whatever small way I can.  I shared a little about our Lucky Cast Club family and shared a few statistics with him regarding what our children are facing.  He replied and thanked me for sharing William's story and the Lucky Cast Club.  It is in the front of my mind to see if and how the LCC and Scoliosis International can join forces.  We know little about Juvenile Scoliosis and he knows little about Infantile Scoliosis, we have similar goals and platforms, and we both seem to be passionate about reaching others affected by the Demon Scoliosis.  I will keep you all apprised of where and how we can help each other.  In the meantime, please check out his web page. If you can donate to the Scoliosis House, please keep them in mind.  This is an amazing opportunity to have a truly tangible role in easing the pain families face when dealing with surgical intervention.  Today I thank who ever lead me John Scoliosis Isdell.  If we never have further correspondence, just knowing he had an idea and was able to see it through to reality has encouraged me to keep moving forward, learning and growing. 

Sincerely,
Catie ScoliosisSucks Diefenbaugh

Shine On!

I wanted to try to put into words what a wonderful weekend I had.  It has been hard to do justice to the memories I have locked in my heart.  I am going to try to see if I have the words to sum up the moments and memories that I now hold so dear. 

Friday I felt frantic to get out of town.  So many tasks to complete prior to leaving the solitude of my home.  Car needed brakes, William had his first day of school, Cody needed to be dropped off at school all of this was scheduled between 7:30-8:00.  Thanks to my husband, sister, & mom life was moving forward and I had to hang on for the ride that I would call Friday.  Car was picked up, William was picked up and now it was time to pack.  The car was loaded and it was time to head to the windy city.  My Aunt, Uncle and cousin Sarah were there to welcome us back to Oak Park.  It was nearly 10:30 when we traversed the cities late night traffic and finally landed feet first ready for sleep.  Saturday morning was over scheduled.  I decided rather then fight the schedule in my head I was just going to flow with the moments.  Our family made a beautiful breakfast and after my Uncle and mom took the kids to the park so I could shower and pack for the day ahead.  A treasure and treat for the kids was when we walked to a local yogurt shop for a frozen treat.  We live in the county and walking anywhere of interest would involve quite the hike and several very busy county roads.  The boys really enjoyed this new found freedom.  On the walk back to the house my beautiful friend Sarah called to say she and the girls were almost to Oak Park.  They arrived and shared lunch on the patio with my family.  I was smiling inside so bright at the thought of my daily phone friend sitting across the table from me with her beautiful girls.  If the day would have ended at that very moment, I believe the 12 hours of travel would have still been worth every minute.  Fortunately it was just the beginning of what was to be a night to remember. 

I know by now you are probably like get to the point of this post, hang in there it's building.  Sarah and I set course for Bolingbrook.  On the way I ran an I-pass toll and of course freaked out.  Fingers crossed my .80 toll won't turn into something huge.  We arrived in Bolingbrook at the Miller house for what was to be a celebration to remember.  Jackson Miller started casting a week prior to our Iron Will.  We have shared so many hospital moments and scared parent moments to recount.  The joy filled my heart when I was greeted by my fabulous Lucky Cast Club friends and their amazing family.  The Bouncy House in the front yard set the tone for the celebration of a milestone in the Miller's world.  Jackson faced Infantile Scoliosis and by God he set it straight.  They were celebrating the emBrace of their new lives cast free and with a fabulous new accessory.  I was fully prepared to celebrate the joy and camaraderie of THEIR moment. What I wasn't aware was this celebration was a catalyst for such hope for my own family. 

The Miller family could have created a party entirely centered on their joy, but that wouldn't have been what makes the Miller's the Millers.  They instead celebrated their beautiful family and all the families who are holding hands on this same journey.  The evening included a kid paradise of bouncy houses, pizza, & enough friends to keep kids enchanted for a lifetime.  They shared a slide show sharing their son's journey that included the soundtrack to our last two years, speeches of determination, tenacity in the face of adversity and a celebration of unlikely friendships formed from Infantile Scoliosis.  Hearts knit forever by the bond of kindred souls tossed into a melting pot free from discrimination we like to call the Lucky Cast Club.  The evening ended with me yearning for more.  More time with my beloved friends, more moments free from plaster and fiberglass in a hospital setting, more memories of these my beloved sisters.  If I could create a Utopia for our LCC families, it would mimic in sight, sounds and love the Cast off Blast Off of Jackson Miller. 

I would like to send a special thank you to the Adam, Chrissy, Natalee, Cameron, Jackson, Mom & Dad Sherman, Mom & Dad Miller, All the Sherman sisters, & Miller brother for making us feel so at home.  To my soul sisters Chrissy, Sarah, & Tracy oh heck I need to add Joe and Adam to this as well(You GO GIRLS) I love you all deeply! To Chrissy and Adam's friends who welcomed us with open arms and listened intently to our children's stories it was so kind.  And to all the fabulous donors who made contributions in Jackson's honor we pledged to do your generosity justice.  It is my hope that with donations made earlier and in Jackson's honor we will be able to share this feeling of home with all our LCC families through both a Mom's weekend and a Spring family outing.  You have all touched my life in ways you will never know. 

I pray we will always see ourselves in the same light we admire each other.  This is William's favorite song and I thought the perfect conclusion to our magical day.  Shine On my friends!

Cast Off Blast Off Party: Wish Lanterns to Heaven

emBRACe it!

It's a beautiful thing when your fears and doubts become moot. When the cloud of darkness that you convinced yourself is hanging over you, clears and you see that there really was clarity and light tentatively wrapping itself above you the whole time. When you swallow perspective and you take a breath and look back at the history of where you came from and how many beasts you slain and fires you walked through, suddenly, relief and a burdenless breath is your reality and you feel calm.

On September 7, Jackson was free. I say free with an elation and epiphany that continues to unfold before my eyes each day he is able to move more freely, touch his own skin and say, "that feels better!" or get into a tub of warm bath water whenever he desires. The list goes on... today I asked the boys, simply because I could..."do you want to go in the pool?" Do you know how long it's been since I could udder those words? Jack's reply, "...me too?!...yeah!"

Calm.

The simple things that for the last 22 months had not been so simple, I now understand are gifts and treasures and I will never take them for granted: he can puke and I won't have to wonder if it went down his cast. He can soil if it be and I will not have to recreate the tape job around the base of his cast in an hour process to try to salvage his shell. If it sprinkles? If it rains? Bring it.
Sand? Though I despise sandboxes, I shall not have to avoid them in fear. I can sign him up for swim lessons. I can get an hour of squishy hugs every day. EVERY DAY.

Joy.

The transition to brace life has been much less troublesome than I had worked up in my head. Despite the first couple of days when Jackson thought it was the status quo to remove the brace to go potty, there wasn't much of an issue. He has since learned that he CAN get up on the seat with his brace and will not get the brace wet. He has slept through the night since the first evening and has stopped wincing, "it hurts"...or "too tight"...when I adjust his straps and brace him up. I think I've even diminished the fear that I'm not putting the darn thing on correctly.

Relief.

The end all~be all of the emotional peek of brace life was marked by our Cast Off Blast Off party we threw for our Superhero on Saturday, September 10. I shall never be able to fully paint the picture of love and joy that wrapped itself around our home on that beautiful Saturday. Surrounded by both sets of his grandparents, siblings, cousins, aunts and uncles, family and peer friends, our son felt love. He felt happiness. He felt excitement and giddiness, gratitude and blessings....he felt free. Yes, he's three and cannot and will not be able to tell you these things himself, but as a parent observing this phenomenon...you just know. It was flowing through his soul. It was flowing through mine.

Gratitude.

I could spend much more time writing about all that took place that night, but no matter the choice words or antecdotes or visuals...it just wouldn't truly capture the magic...the miracle. That's what it was after all. The magic of being with my Lucky Cast Club soulmates NOT in the shared space of a hospital waiting room. The miracle of elating in the laughter of our beautiful cast friends frolicking around with smiles, sporting casts and brace with not a care in the world and no surgery looming in the next room. Beloved friends and loved ones, lots of tears of joy, reflection and empathy, singing, dancing, eating and drinking... celebrating. It was breathtaking.

Renewal.

More rewarding and breathtaking for Adam and I was the gift we were able to give back to our Lucky Cast Club family that night. At the close of our celebration, we gathered in the calm of the moonlit sky to share our love with our newfound family. To honor each cast friend in their own journey toward healing, correction and courage, we lit 23 wish lanterns and sent them to the heavens with the song, My Wish, by Rascal Flatts, serenading us. God whispered to me in that moment, I swear. He touched my heart or maybe he winked at me, I'm not too sure, but somehow I knew....I felt...I grasped and savored and embraced...that it is all going to be okay.

Letting go

My name is Cathy and I am a control freak. Having a child in a cast makes this condition much much worse.

We are on vacation so the goal is to have fun. Today we went to the children's museum here where we are and I had to face two fears for a kid in a cast. Water and sand. Yup. good times.

I want nothing more than for Kiya to be a kid and have fun. Sure she isn't even 3 yet and won't remember the things we did today but it is important to have the memories and the pictures/video. I love watching her face light up in pure joy.

Ok back to my point. We were with some friends and their kids today and all of the kids wanted to play with sand and water. I had to make a decision. Should I be the over protective parent and tell my almost 3 year old no you can't do this because of your cast or let go and see what happens? This is tough for me. I don't want sand in her cast. I don't want her to get soaked.

I took a deep breath and watched her dig into the sand. I kept telling myself to breath. We did get sand in her hair which is a whole other issue and a little down the front of her cast but that was easily removed with a baby wipe. Serious incident avoided.

Next up water. She saw the room and just screamed with pure delight. She demanded that she get to play in it and in her words "make a big splash". I told her to wait while I scoped it out. Truth be told I had read all about the room online the night before. I was terrified since they specifically said it might be a good idea to bring a change of clothes and a towel. I looked at the under 4 area and nearly had a panic attack. Every child in that area was soaking wet.  I quickly moved on to the other area. I looked. I scrutinized. I looked again. I checked out every kid. I looked for the aprons. I said ok. We might be able to do this.

I pulled out her waterproof bib. We put one of the museums aprons on top of that and let her have at it. She had the most fun I have ever seen her have. She screeched in delight she wanted more. She would have stayed there all night if we let her. And while I pulled her away from things that might splash too much, I let go. By the end I didn't pull her away from anything and you know what she left with slightly/barely wet shoes and arms. That was it. Her clothes were completely dry and as such so was her cast.

I let go. I let my big girl run and have fun like every other kid in the place. I let her be a normal kid. I didn't let that darn cast tell her no. I refused. We are on vacation. We are one month away from cast cut off and I said screw it. Smiles and squeals of delight were priceless. I wouldn't have changed a thing.

Letting go isn't easy for me but I did it and I would do it again. Life is too short and Kiya is only this fabulous age once. Her cast has never slowed her down and I wasn't going to let it stand in the way today. I will never forget today. It was perfect. Kiya had a blast and I let go and let her be a "normal" kid who just happens to have a pink cast.

New Adventures Abound, Time to emBrace It!

Today is a very special day.  My heart is briming over with joy as our beautiful friend Jackson Miller casts off for the last time and emBraces his new world cast free.  It is finally time for our very own Super Hero to spread his beautiful wings and start a new adventure.  Jackson started his casting journey nearly two years ago.  He is such a remarkable spirit and has an amazing family who has shown us all grace and determination in the face of adversity.  The cast never defined his world or his abilities, rather it enhanced the beauty of his inner soul.  Jackson Miller fought Infantile Scoliosis and set it STRAIGHT! Way to grow Miller family!  We are sharing so much love and unabashed JOY with you today. 

"It takes a lot of courage to release the familiar and seemingly secure, to embrace the new. But there is no real security in what is no longer meaningful. There is more security in the adventurous and exciting, for in movement there is life, and in change there is power."

-Alan Cohen

Super Hero Jackson at the beginning of his adventure!

Super Hero Jack helping Grandma Remove her LCC Bracelet today at Cast Off!

There is no COMPROMISE in your childs care

As our group has spread out to different centers you wonder how the care would differ from center to center.  The casts are all applied very similar, taped the best they can, & the kids are all given similar reports.  We are spread out from Chicago, Cincinnati, Greenville, Salt Lake City, Kansas City, & our newest friends are in Halifax & the UK.  At some centers our kids have wonderful advocates who are there for the parents as well as the child.  At other centers you go with the flow and hope to not have to confront any hiccups in your child's care.  We have some of the greatest minds in the country in regards to Infantile Scoliosis caring for our children's spines.  Who is advocating for their spirits? 

A lesson I have learned early on in William's care is there is no better advocate for William then Chad and I.  This is one aspect of his care that isn't open for compromise.  I have been told by some that we are very lucky to be at a Shriner's hospital and I feel this is absolutely true.  They have some of the greatest minds and technology at their disposal and the majority of the staff is what I would consider world renowned.  Gwen loves each of her babies with all her might.  She is a fierce momma lion when she thinks something is not right with their casts.  Linda is a constant level of support.  She is the wipe your tears kind of mother figure who keeps us moving through the months and years of care.  Tom always there with a smile and kind word when your child visits radiology.  Dr. Bonisara has always been our friend in anesthesiology who would just assume carry William to the OR as make him ride on his bed.  Ruby is the crazy eight in the pre-op with her happy juice and silly hand puppets.  There is the sweetest PACU nurse who never forgets a face or a set of chompers who for the last 5 casts since being bit by William as he woke up always says there's my little biter.  There are countless other faces and names to go with stories of our journey at Shriner's.  When something goes awry in the process it is hard at times to want to stand up for your child because everyone is so wonderful. 

I want to set something straight.  There are those out there who say you shouldn't complain because everyone at Shriner's Hospital is a volunteer.  OK so let's address that for a moment.  Shriner's is a no fee hospital.  Up until 2011 they relied solely on donations to keep their centers running.  In 2011 they made the switch to an insurance only facility.  This means they bill insurance for your child's procedure but will not balance bill the family for cost not covered under your plan.  It was a big move that has caused some of the changes we have seen at our center.  The staff at Shriner's and the staff doctors are paid employees of the center.  The Hospital is a wonderful place and I firmly believe we should be spreading the love they are giving and raising as much money as possible for our centers.  It however doesn't mean I shouldn't advocate for my child when I find something that isn't in line with how I feel his treatment should be handled.   

So what is the answer?  I pose this as a real question to all our LCC families irregardless of what center you are using.  If we see something that is not in the best interest of our child should we speak up?  Who should we approach and how should we approach it?  What are the important things to advocate and what would be considered petty?  I know this seems such an odd post, but it in the here and now.  I would rather we as a group come up with a game plan so future families will not have to tackle this obstacle.  Love to all!