Reflections on a Journey with PIS: One Superhero's Story.

On March 8, 2010, I gave birth to twins. Both miracles. Both beautiful gifts of Love and Light that changed my world forever. I didn't know then, that I had brought into the world a Superhero who would alter the lives of so many with his gifts and his example.

******

It is hard to believe that over two years ago our lives changed and the course of my son's destiny shifted toward where we are today. On September 23, 2009 our 18 month old beautiful boy was diagnosed with Infantile Scoliosis. Little did we know about those words. Foreign was no longer a word we associated with a language. It was a new normal and a curve in our son's spine that would come to take over his being and his body and our lives.

After a lot of research (too much actually), and a support group that guided us to think about casting as a treatment option, one chilly November morning we found ourselves in a waiting room at Shriners Hospital for Children in Chicago listening to a doctor we had just met, share with us that Jackson was a great candidate for Mehta casting and could we cast tomorrow.

In the orchestrated path of God's plan, that was certainly one of the major jolts we would become all-too familiar with along the way. With little familiarity, if any, about cast life and minimal time to emotionally, mentally, spiritually and physically prepare for the next day, we moved forward.

I won't even begin to try to describe what that night was like. Only a parent of a child about to enter into cast-life can truly understand what the first of many Cast-Eve's does to your soul...how you can't touch their skin so beautifully smoothe upon their back enough times...as if one more touch will etch how it feels into your fingers so you won't forget it for the next 12 weeks. How watching him frolic so naively and innocently in the tub with his twin brother is painful. How hugging him so that you can again, etch that hug into your heart begins to wrip your heart into pieces, one hug at a time. Crying yourself to sleep with an undisclosed horror and unknown as you whisper good-night to your old "normal".

******
On November 5, 2009, Jackson received his first cast; "Old Blue" as we call it with fondness. At and increasing 35 degrees and a RVAD measurement of aproximately 30, he was on his way toward healing in what would come to be a 9 cast- 9 surgery- 2 doctor- 20+ x-ray- and countless parental heartache journey of a superhero.

Our Superhero defied Gravity. He wore his cape proudly, bravely, mightily and effortlessly as he blazed into each cast day over the next two years with courage and conviction. He taught our family...and the many friends and family surrounding him along his journey, that even a little person such as himself can prove to have more tenacity, resilience, courage, spirit, humor, ease, light and love to offer in the face of adversity and struggle. I am in awe and indebted to my son for these life lessons.

His new "normal" became his friend. He never ONCE complained nor confined himself to "I can't". He never ONCE cried when he should have...I would have...I did. He never ONCE gave in to the obstacles presented to him, but instead, rose above them while often his cheering section couldn't do the same. He is my hero.


It is so joyful and humbling to be able to share the place where our son is today. In September of 2011, almost two years to the date of his diagnosis, he received his brace which he is still sports 23 hours a day. His correction in cast miraculously and maticulously straightened him to under 10 degrees which in Scoliosis terms, is "straight". If you look at his x-ray while in brace, he is infact, STRAIGHT. Another foreign word... we now say with delight and gratitude and relief.

The journey now...for Jackson... and our family consists of holding onto HOPE. Hope that the brace will hold him during his growing years. For how long? For as long as his spine needs the support. We do not look beyond today. HOPE that the many beautiful children we have come to know and love and pray for fighting the same fight will also have their moment. Their correction. Their answered prayers. HOPE that with a campaign of awareness about Infantile Scoliosis and Mehta Casting as an INITIAL treatment option, fewer children will endure unnecessary invasive procedures to hold or treat what could be done without the mention of rods and surgery. HOPE that more parents...more pediatricians...more specialists in the field of orthopeadics and spine care, will not accept "WATCH AND WAIT" or "WAIT AND SEE" as an option, but continue to learn about and act on casting as a successful and viable method of treating Infantile Scoliosis. My son is living proof. He is an example, a poster-child and a beacon of light for those behind him and beside him that HOPE prevails.

******
At Jackson's "Cast Off Blast Off" party we honored him with last fall, we shared a slideshow with family and friends to help them understand his story, his journey and what the last 2 1/2 years had meant to our family. It was meant to serve as a little window into Jackson's fight. We gladly share it with you here. Thank you for watching.

I(We) got your back!

" I got your back" or " We got your back" is a term we have heard over the years. It means I will protect you from harm. I will back you up if someone/something bothers you, or I will take care of you. For children with Infantile Scoliosis, this term goes way deeper. On a positive note, it means that we are here for you. We( LCC) are a group of people who are here for one another. We will not let anyone or anything(Scoliosis) cause you harm or distress. We will be there for you when you laugh, cry or want to scream! We will be there for cast #1 to cast #23. We got your back! This also brings our miracle.. the CAST into the picture. The cast literally has our childrens' backs. It is wrapped around them so tight and there to hug our children when we can't for 8-12 weeks at a time. The cast is protecting our children from harm(Scoliosis). It is our piece of hope that our children will have straight spines someday. On a negative note, scoliosis also HAS our childrens' back. It is causing them harm, discomfort, and twisting our babies' spines. It is saying to our children," I got your back!" So far in 2012,  2 of our casting children have been given the news that they are straight and will be cast free: Massimo and Cadence. To scoliosis we say, YOU DO NOT HAVE THEIR BACKS ANYMORE!" To our casting friends we say, "We will always have your back!" We will forever protect you from harm and distress. To the cast we say, " Please have our children' back!" because if it will make them straight we will be blessed!

We found Love....

This past Monday not only marked the holiday of MLK, but my first trip to the outpatient lobby of Shriners Hospital for Children in Chicago. First trip you ask? Let me de-confuse you. I did not accompany my superhero for his cast. I went to support my other family...my scoliosis sisters, my Lucky Cast Club. Of the 20+ beautiful children our community now wraps itself around, 3 of my near and dear were getting casted and the pull couldn'tve been stronger. I needed to be there. I needed to stand with them, if only in spirit, as they endured the long process and the emotional rollercoaster we all know and (don't)love as cast day.

Iron Will, Sweet Kiya and beloved "G" were getting casts 11, 6 and 8 respectively. Not only do I have a kinship of sorts with these beautiful babies (they're not babies, but like any mother, I endearingly do and will always refer to them as such), I share a kindred connection to their mothers. My beloved friends are the rocks and sounding boards of my scoliosis world and I theirs. That's how we are.

I haven't known them long, but any survivor of a tragedy or unexpected shift in your paradigm and perfect world, can tell you that those with whom you endure the fire, the fury and the battle with, are evermore your family. There is a split-second and constant connection that ties you and binds you in deeper and more profound ways than frienships shared over years or blood ties. It is the shadows of darkness and dread you experience together with an understanding only those who too, experienced that darkness can relate to and truly..."get". It is the scars of the fight, the pain of the loss, and the witness to the injustice that pulls you to one another closer each time.

But more beautiful and powerful I have found in these women, their children, their husbands, and their families are the gifts and the blessings that come out of the darkness. Integrity. Advocacy. Empathy. Tenacity. Faith. Encouragement. Laughter. Loyalty. ...and then there is love.

I love them because we have something special. We've seen one another in our ugly cries and in our joyous ones. We've lifted one another out of deep and deafening tidepools that keep joy out and anxiety in. We've been one another's life lines and beacons. We've held out our hands so that when down and weak and scared and timid in the face of fear, someone is there to pull us up into a stance whispering in our ear and in our heart, "you can do this." I love them because like me, they are mommies who have had to stand back and helplessly and often hopelessly, love a child who is fighting a constant battle in their body. They know what I know: agony, sadness, anger, depression, dread, fear, disgust, guilt, fatigue...the not so pleasant faces of being a parent battling Infantile Scoliosis.

I love them because their presence is a security that wraps me with love and understanding in the scoliosis moments. And trust me, those moments (even when your child is in a brace) are abundant and cruel. I love them because I trust them. This said trust runs deep with vulnerabilities of a parent blindly manuevering through the world of scoliosis; making mistakes along the way in the judgement of caring for my son and his cast..and his brace...and his self-esteem...and his well-being.

Their ability and capacity to allow me to be...to BE, is reassuring that I am in the company of companions. Whether it be in sharing a movie, a glass of wine, laughter, dancing or more profoundly still, my son's story and our similar paths, it is comfort. It is friendship. It is trust. It is unexpected delight in sharing more; life stories, love stories and perhaps even a naughty cigarette (or two) while hidden in the deep woods of Indiana ;)

But what I love most about these women is their beautiful and palpable spirits of hope. Either collectively or in the quiet of a personal text or phonecall, they have the capacity to lift me out and push me back...back into a better mood, a brighter place or a gentle reality check. They pour life back into me. With their smiles, their laughter, their hands to hold and hearts to cling to, they sense the alienating feeling of coming close to losing hope creep upon me and instinctively, they know exactly when to shine it back in...like yellow diamonds in the light. How blessed am I?

My list of beautiful friendships from my Lucky Cast Club community does not stop at these three, but it was in the giddiness of the joy, the calm in the news and the familiar of the hospital and the routine of that day, that I was awakened to the gift of what we have. Then yesterday, to magnify it even more, Catie texted me a song that brought it all home.

I had heard the song before and in fact, it sits in my playlist and is a frequent "kitchen dance tune" that my children and I will jam to. But in hearing it at that moment, it took on a deeper meaning. It translated what I've known for some time but perhaps have not appreciated to the degree that I should. That these four women (Kelli, you will always be included!) are special. They are unexpected presence I received in a lifetime of many gifts. And I know that those rare blessings that come along in a lifetime should not be minimized or taken for granted.

You gals are my rocks. You are my "yellow diamonds in the light...I just can't deny." The only difference is, I will not let go. I love you.

Cast #5

Yesterday we went for cast #5. It is hard to believe we have been on this journey for over a year now. Parts of me are very bitter. Very bitter. Parts of me are sad and parts of me are just grateful that we have a course to follow and have amazing friends to support us. Here is the nitty gritty of it.

I knew as us moms just do that Kiya's curve wasn't any better. I tried to be positive but I knew. She looked GREAT for like 3 maybe even four days and then the shoulder drop returned and my heart sank just a little. My hope was for any correction no matter how small but such was not the case. Dr. H says we are basically the same as where we started so around 60 and that Kiya is bascially straight in cast. It is frustrating to us and to him. He even went and double checked her MRI to see if something was missed but nope all clear. So we plug along and keep on casting and praying that someday the correction we see initially will stay even just a little.

To make things even more frustrating we now have another issue to deal with. Two of the doctors heard a heart murmur yesterday. It was mentioned once before 2 casts ago and not last cast at all or by any other doctor. That said Kiya doesn't go to the doctor much so it is very possible that it has been missed. She is due for her 3 year check up at which time we will be seeking a referral for a pediatric cardiologist. We need to first do an EKG and then depending what that reveals do an echocardiogram.  Fun. NOT.

Kiya is also due for an important blood test. One I have been putting off but we need to do it. She HATES needles and having her blood drawn so not at all looking forward to this.

All that said, Kiya weighed in at 30.5lbs and 38.8 inches tall. My string bean is sporting a dark green cast and doing great. Yesterday was rough. She didn't come out of anesthesia as well as she did last time so she was CRABBY. But we pushed forward and were headed home by 12:30ish. She watched more episodes of Olivia than I care to think about but she survived the day. She ate a little and slept great. I am so amazed by her constant resilience. She is amazing.

We were fortunate to meet sweet Lauren and her parents yesterday. It was nice to talk with another family. It was weird to offer support and advice as they are still new to this journey and I am used to being the new kid on the block. It was really strange but I was glad I could offer advice, tips and support.

So there you have it. We survived. We didn't get any straighter but we didn't get any worse so I will take it and move on. It's what we do.

Let me get this straight.....

straight.

Websters definition: free from bends, curves, angles or irregularities.

My definition: Miracle.


When you've lived for over 2 years fighting Infantile Scoliosis, there are certain words you come to despise: wait and see. water. sand. vomit. casts. surgery. numbers. anesthesia. x-ray...the list does go on. There are other words, if you're a treatment patient of Chicago, you just as equally come to favor: Shriners. Gwen. Linda. Tom. Ruby. Hammerberg. Lucky Cast Club. Hope. Brace.

But there is a word you don't expect. A word so sacred and special, coveted and desired, you just don't speak of it. You don't whisper or even say it to yourself in the quiet spaces of prayer or solitude. You long for it and hope for it and pray for it, but you don't really know if it's ever a word that will become once again, a part of your every day vernacular.

And in the company of your beloved family of friends also fighting; also longing for their day in the sun, it's actually painful to say out loud or in their presence when you finally reach the day the word is spoken.

Straight.

shhhhhh....did you hear that? That was my gasp. That was my heart. That was my soul lifting in disbelief.

Today, 36 days after Jackson received his brace, we returned to Shriners Hospital in Chicago to find out how well his spine is holding without the protective armor of his cast. We had little anxiety or trepidation because, honestly, we've been pleased with the way he has looked each and every time he gets his "break". I'm always petrified to look each time, but I can't stop myself, and what I see always gives me relief.

Yet there is always that chance. You know the one. It taunts you and looms behind you in creepy dark corners and steals your thunder? Pops your balloon. Kills your buzz? Yes. That one. It tapped me on my shoulder today as I drove us to the hospital this morning but I managed to push it back and bid it farewell once we walked into the hospital.

Jackson was a champ...as always, and in typical Shriners fashion, the warm, loving welcoming of our friends and the spoils of toys, books, games, crayons and smiles made us feel at home. We visited Jackson's friend Tom who takes his pictures and got a sneak peek before we'd return to have our clinic consult with Dr. H.

I am glad I was solo today (Daddy couldn't be with us). I would have probably squeezed his arm or hand so tightly and drained it of its blood supply if he had been. I had to contain my disbelief and giddiness as to protect myself from maybe a twist of reality or mis-read on my part. But I know what I saw. And it was beautiful, but yet that was all I was willing to say to myself. Remember...shhhhhhh, the word we don't speak of.

And then Dr. H met up with us back in our room. He strode in like a gallant knight... with his sword of protection and mighty steed---Oh wait. That was just my thought after the news. He pulled up the x-ray, zeroed in on the picture and proceeded to compare it to the x-ray taken on November 4, 2009. There they were. Side by side. Ever so clearly and candidly facing us. With confidence and what appeared to be surprise, he said it. He said IT.

"It looks straight!"

He proceeded to have Jackson remove his gown and bend over so that he and his observant and loyal interns looking on could also see for themselves as he traced his finger down my son's spine. And he said it....AGAIN! Let me get this straight...you're uttering that which we don't speak of TWICE?!

"It's looking really straight..." I have no real recollection of what was said after that. He lost me at straight.

With solid and excellent news of minimal rotation, aligned vertebrae and not needing to return for an x-ray for another 4 months, I glided out the doors of that hospital. I am not certain my feet touched the ground. I am certain that my superhero himself, held me close, lifted me up, and gallantly threw out his cape behind us. We then flew together with the wind of change and the gratitude to God carrying us home.

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