Tuesday, September 27, 2011

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! 

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