Since we started casting November of 2009, I have always had in my mind a timeline for how things would go. The dreamer in me was sure I would request a brace break during our second summer in cast. He would have been casting 2 years and had earned his break at this point. Summer 2011 approached and I couldn't allow myself to bring it up. We took a slightly extended break, still short of two weeks, for our vacation and then stayed the course. This summer June once again approached and the need to stay the course once again won over the urge for his Independence.
I have always been a firm follower when it came to William's care. My overwhelming need to scream and cry has long since subsided with acceptance. Each small victory on casting day, strengthened my resolve. I believe in the process. I believe it will work. Even if the odds were never in his favor, I believe. I believe to a fault that can come across as callus or staunch to so many. The process does harden you and just like a sheet of ice, a hardened heart shatters with little force when hit.
As I write this it seems so silly. Vacation planned March 2012 for July. We chose our week after doing the standard count which has become our life. Previous cast date, 1,2,3,4,5,6,7,8,9,10,11,12=Freedom , Cast on 13. After carefully counting the weeks from our January cast put us off on the 14th and back on July 23rd. We learned early in June our cast date would have to be pushed back a week. I panicked, prayed and accepted it as an answer to our longing for William to have a little more time. Thursday the phone rang again and showed the hospital... cast date had to be moved out another week. 1 day shy of 3 weeks out of cast. There was nothing the hospital could do. I completely understand the move. What I as a mother face now is worry. Will his spine hold for 3 weeks unprotected? What does a set-back do to his long term outlook? How long can we keep him in cast while at the beach? Is it fair to him to ask him to look at the sand and sea only to say don't touch? No, it's not.
I have been through the bargaining and even the pleading for him to get a brace before our trip. It's not in the cards. Insurance will not pay for a brace and 30 days later pay for a cast. Our Insurance covers $272.00 of a $13,000 casting bill, essentially nothing, bill them for the brace, they may actually reimburse something. With this offer off the table I am now struggling with learning to trust the answer. Our last 3 years have been about protecting him. It sends me to terror when I try to understand how something meant to be magical may actually cause him harm.
I am packing and planning. I am getting the sunscreen, swim shirts, new shorts for one, swim goggles for the other and I am smiling on the outside and screaming on the inside. I have amazing friends, truly incredible friends, who have shared every pearl in their arsenal. The most important...God doesn't always answer our prayers in the way we think we want. They are however always answered. It is time to trust in the answer, trust his spine will hold or not hold, & trust the answer may have been to a question I never thought to ask.
I am tired. This process is long & I put on a brave face around every corner. Our journey has been considerably shorter than some of our friends and you carry that guilt when you allow yourself to be sad. I often wonder if I am trying to fool others or fool myself.Smile, though your heart is aching
Smile, even though it’s breaking
When there are clouds in the sky
you’ll get by
If you smile through your fear and sorrow
Smile and maybe tomorrow
You’ll see the sun come shining through
for youLight up your face with gladness
Hide every trace of sadness Although a tear may be ever so near
That’s the time you must keep on trying
Smile what’s the use of crying
You’ll find that life is still worthwhile
If you’ll just
Miracles come in moments. Be ready and willing. ~Wayne Dyer
Getting Ready. Until Next Time, Keep it Curvy~
Catie(Scoliosis Sucks) D.