Thursday, April 28, 2011

HOPE prevails; Scoliosis Remains



Here is a letter I wrote on Wednesday, April 27th, following our 8th cast at Shriners....

Family and Friends,
Not but about a half hour ago, I was not ready to sit down and share the update of Jackson. My head and heart were battling with the turmoil of an emotional tug-of-war Adam and I have been feeling since yesterday morning. We have had heavy hearts and a lot of confusion about how to feel and it's been very difficult for either of us to pinoint to ourselves, let alone anyone else, why we feel the way we do. But just as I was resting next to my superhero wiating for him to fall asleep...watching him quietly and peacefully fade to his nap, he opened his eyes and out of nowhere said, "Mama! " and then gave me a thumbs up. It was then I knew it was time.

Yesterday Superhero visited Shriners Hospital for Children for the 8th time. At the start of an early day, Jackson was alert, excited and already stoic and brave sporting his new Buzz Lightyear backpack and giving hugs to Nana who was staying with his brother and sister, ready to face the day. Driving through the dawn with raindrops falling, Adam and I were quiet and melancholy. We were fighting the blues of yet another long excursion and draining day of cast life. We were feeling sad. We were feeling angry once again with scoliosis and what it has meant to our son. Adam particularly struggled; we tend to trade off on each cast, but it was hitting him hard today. Neither of us, since early on in the journey, had felt this fragile going into a cast day. There was something about it that we just coudln't make peace with, and yet we were trudging forward with a fragile hope that maybe we'd get good numbers..good correction...good news.

We were also embracing the day with a bit of happines in knowing that a handful of our Lucky Cast Club family; some of my nearest and dearest friends in life now, and their beautiful famlies would also be there all together for the first time ever! Sarah and Ryan with Giana and big sister, Rylie; Catie and Chad with "Iron Will" and big brother, Cody, and Cathy and David with adorable Kiya. We walked into the "holding" area to the joy of the feel in the air: family, camaraderie, empathy, support, smiles, understanding, compassion, experience, love, love and more love. Sporting our "Lucky Cast Club" t-shirts (everyone), we absolutely looked amazing...like a team in uniform ready to face the big game. It was incredibly powerful and an awesome sight!

The pre-op process went smoothly and fairly quickly. The team at Shriners was on their game as well. And Jackson...with much dialogue the days leading up to casting about remembering this and that...the medicine, the pulse ox light, the "arm hugger", etc...he showed off his Superhero fight and shed not a tear. This was the first time ever in the journey that Jackson didn't even whince when nurse Maggie put the pulse ox hold on his tiny finger or when nurse Ruby gave him his "happy juice" medicine. We were indeed, very proud of our baby.

You know that expression, "the light at the end of the tunnel"? I think it's safe to say we see the light.

One of the many steps in prepping Jackson for the surgery is to have him go see our friend Mister Tom, the x-ray man. Like a pro, little man stood on the the pedastel and we play a game of "freeze" while Tom "take a picture" of his back. I had sworn to myself that this time, I would not look at the xray when given the opportunity as in the past. I just didn't want to see disappointment. I didnt want to see his hips shifted all the way to the left, unaligned with his spinal cord. I didn't want to see a curve. But Papa and Adam told me I had to come see. "You want to see this," I believe were their exact words. So I succumbed to peer pressure and did. I believe Tom's words were, "This is straight. I don't even know what you guys are doing here today."...Yet I still saw those hips...completely shifted to the left, so the beautifully straight spinal cord I was looking at took backstage to them and I coudn't nor didn't, rejoice. Yet.

Slighty before Jackson was to be taken back into the pre-op room, Dr. H came to the holding pen to answer questions we had previously emailed him about the lower curve and the hips. This face-to-face was new to us, so I wasn't really prepared nor did I know what to expect. I arrived to see him looking at Jackson's back and already talking with Adam about what he saw. It was later Adam told me that at first glance he said, "Looks straight.". Further discussion addressed the scoliosis as the cause for the hips shifting...for their "list" to the left and that the cast would never cure scoliosis, merely correct it for as long as possible. I didnt know how to feel with this..assurance? I didn't feel assured or relieved.

Jackson went into surgery for cast #8 around 10:00. About 45 minutes later we were paged to meet Dr. H and his head nurse/assistant, Linda to hear the update. Up until this cast, we had always been given numbers..not today. Today was something different. Today was something we have been praying for...today was shocking. Dr. H shared with us that Jackson did well. That things look good. These had all been said before, so it took me by surprise when he then proceeded to say that we could probably start looking at molding him for his brace. His plan was to see how this #8 would do...how he'll hold up when it's off and if it still looks solid and straight then he'll have one more cast at which point he'll be molded for his brace.

BREATHE..................life stops for a milisecond ..............SHOCK................. waiting for joy....waiting for elation.......waiting to feel.........something.

Dad cried. He hugged us huge. He smiled and shook us and with elation and rejoicement, reminded Adam and I that this is what we've been holding on for! What a happy day!

Let me start by saying, Thank God. Thank God for Shriners...for Dr. Peter Sturm and Dr. H...for the internet support site that led us to Shriners....for Dr. Min Mehta who is the pioneer doctor across "the pond" in England who is responsible for this type of Early Treatment EDF (elongation, derotation, flexion) casting procedure that has seemingly begun to correct our son's spine. There are many waves of gratitude that slowly are showing themselves to my heart. To all of you....who have religiously prayed for our son....for our family...for correction...we deeply and soundly believe this place we are now at is because of your prayers and your love and your never giving up on Jackson and our family...We are grateful.

But we are scared. We are confused. We are, to be quite honest, a but numb. For months, almost half of Jackson's life, we have been dreaming and hoping for this day to come. For the news of bracing to be something in our reality and to celebrate it. So yesterday was so so difficult when neither of us felt this immediate joy and exhuberance with the news. We felt angry at ourselves and confused at our lack of emotion. It may be something we'll never fully be able to explain to each ofyou. One unaware of the in's and out's of this beast might be upset to hear of our lack of joy. Shocked and confused by our blues and perhaps let down by our reaction. I wouldn't blame you. We don't expect anyone to fully grasp or get it, but we certainly embrace and want your happiness for us and our superhero! It might just help us get there, too!

At this point, we can only attribute it to this: Scoliosis does not go away. It will be everpresent in our son's life and though we are close to being rid of the turmoils and dread of casts, we enter into a new realm. We soon meet up against a new beast; the brace. I will not take this celebratory moment to go into details about what that entails. This update is not about the brace. It is not about bad news. And that is what I think Jackson's thumbs up in bed was telling me...

It is about this:
Soon...very soon..our son will be able to take bubble baths when his best friend and twin brother, Cameron, does. He will be able to sing and dance in rain drops and delight in what that feels like if the moment shows itself. He will say goodbye to being poked and prodded and x-reayed and put under anesthesia every 10 weeks of his life...He will be, in some ways, free. Of casts, anyway. And like any superhero does, he will lead the way...he wil teach his friends what the brace life is like...as my friend said so beautifully, "blaze new trails and chart new courses," and we know he will venture into new terrain, paving the way for others to follow with his red cape blowing fearlessly in the wind behind him.

Hope prevails!

Please continue to pray for Jackson. That his spine holds. That we as his parents...his advocates...stay strong and allow ourselves to embrace the joy we deserve to feel. That HE deserves for us to feel. That we make the right decisions that need to be made in the next few months about our trip to Florida and when to take him out of cast so that we won't compromise his progress and the chance at freedom.

Our heartfelt gratitude to all of you for what you've been to us through this and what you'll continue to be for us as face the next chapter of scoliosis. We so appreciate and love you for this.

Much love and gratitude and hope,
Chrissy and Adam

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