TSC is something that we can't escape. It's an every day reality around here. We do our best to provide Jack with a "normal" life. We go to playgroup, we go to the park, we can now have family meals together. But there is no getting around the fact that he has almost daily seizures. That half the time our plans change because he is too wiped out from a seizure to make it to playgroup or the park. That we have to be very careful where we go out to eat because we have to make sure there is something on the menu he can have. That we have 2 therapy session a week, soon to increase to 4 to make an attempt at getting him caught up. There is no way around that he is behind in ever area developmentally.
People often tell me that I am "the perfect mom for Jack" like I was somehow destine to have a child with special needs. Let me tell you, NO ONE is prepared for anything like this and I refuse to believe that God would plan it this way. It gets thrown at you and you either step-up, or fall completely apart. Some people do both. A vast majority of children in the foster care system have either medical needs or special needs or both, and sadly there is a reason for that. People aren't picked for this, it just happens. Believe me, if you ended up with a special needs child, you would have the same choice, and I promise, you don't feel special or at all prepared for it.
We can't help but feel luck that Jack is doing well compared to some. We also can't help but feel sad and guilty at the same time when we see children quite a bit younger than Jack do things that he can't do yet. It a very strange mix of emotions that I don't really know how to put into words. We are lucky that Jack "only" had heart tumors. Only heart tumors. Who feels lucky for that? We know that kidney issues, eye issues, brain tumors are all still on the table. I scan his face constantly for any little bump that might be a facial tumor. Because as benin as facial tumors would be, it would be an outward sign that would set him apart forever.
I think overall our attitudes and contexts have been pretty good. Lets face it, no matter what he has or how bad it gets we will always love him to pieces! He really is ADORABLE and honestly the sweetest child ever. He loves to give hugs and kisses. He asks for high fives from his friends and knuckles. Yesterday on the boat he would scream "hit it!" when he wanted to go fast and we discovered that he is a little speed demon! He also tries to comfort people when they are sad and if he bumps something he will give himself a kiss and say "all better".
We are on a roller-coaster and there isn't much we can do but hold on for the ride. We enjoy the good times and make it through the bad while fighting for him every step of the way. I can cook, but even that doesn't seem to be doing much good lately. So this is why we raise money and walk, because the only way to really make his life better, is better treatment, every therapy we can through at him, and possibly a cure. Finding a cure really is a reach, and I don't know if it will happen in our lifetime, but anything is possible. I refuse to dismiss it because it seems hard.
So we raise money and we walk for Jack, for his friends with TSC, and for all of the families who have been put through this hell and who live in it on a daily basis. Because maybe, just maybe it can help in the long run. The Jollyville Sertoma Club has graciously bought our team t-shirts and also offered to match all donations up to $3,000. I am hoping to at least raise that so we can get the match. All donations need to be made by Thursday evening though so I can pick up a check on Friday morning to take with us to Dallas.
If you are willing and able, please make a donation. Even $5.00 helps! Click here and read more about Jack's story and to make a donation. This little boy is worth it!
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