Eight Days

Eight Days (orig. published 7.3.12)


Here we go again. Not to sound like a child, but, I don’t wanna go.


Exactly eight days from now, my son is scheduled to begin the best/worst operation he will have to go through so far in his little life. He’s excited. He dreams of walking “just like Cayleigh”. But, to be honest, it’s taking every ounce of willpower I have not to call the hospital and cancel. His favorite time of the year is summer time. And his summer will end in eight days. Phineas and Ferb say there’s 104 days of summer vacation; Colson is holding them to it.


Summer is the only time of the year Colson can get out and be free. The only time he can use his wheelchair and do the things he wants to do, the only time he truly can explore and have races with his sister and “run” around with the neighborhood kids. And his summer is ending in eight days.


And he’s excited.


I have to remember that part. Because for me, it’s heart wrenching to see him in pain, to know that I made this decision and I can’t help him. It breaks my heart to know that these are his last few days of summer vacation. No more swimming, no more exploring, no more racing his sister or trekking through the fields at Gramma and Papa’s house.


Colson will be undergoing a leg straightening procedure, one leg at a time, in which he will be fitted with an Illizarov frame external fixator device. The purpose is to straighten his leg while allowing bone growth in an effort to get him to walk. The process takes approximately three months per leg and we will be going through this all again in October sometime. To say I’m terrified of this one is an understatement. These pins are in his little leg bones and they stick all the way out to where I can see them. Once or twice a day (will have official updates during surgery time in a couple weeks), Nick and I have to turn the knob on the tension bar on the frame of the fixator. I believe it’s about a one millimeter turn per day which will slowly straighten his leg out. It looks horrific. Something similar to a medieval torture device. His will be from the thighs all the way down and into his feet. We will be spending lots of time at home, so please, visit us. Send Colson some mail; call him on the phone, Skype with him.


It’s just one summer. It’s just ONE summer.


He's excited.

There will be more summer vacations. And I guarantee he will enjoy all 104 days of them every year. And maybe, just maybe, next summer, he will be able to enjoy some of it WALKING.


Much love.


-J-


“Summers can be tough. The world moves so easily, going to camps, swimming, spending time with friends – while we are stuck working 100 times harder just to get out of the house now and then. But the one thing that makes it easier is that we are together, and I am the luckiest mom in the world”. – Adapted from HopeLights


UPDATE: Thank you Tracey Shalk!! There is hope that Colson might still be able to swim! And maybe they can adapt his wheelchair so he can still get around. I learn so much from Tracey all the time - I will keep you all posted as to what we find out.


This picture, while just a snapshot, reflects Colson's feelings so much. This was taken on Easter and Cayleigh and I were down by the river throwing rocks in. I turned around to see Colson staring longingly at Cayleigh and the river, and you can see on his face how he just wishes he could go out there too. (I did pick him up and carry him then so he could throw some rocks in). Hopefully someday he will know a world with LESS restrictions, and this surgery should head us in that direction. 



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