Quality of life.
Ew. I used to hate that phrase. It still doesn't sit right with me and when it comes out of my mouth, I'm uncomfortable with it. Like it's not my son I'm talking about.
I have such a problem with it because I feel like it's something you say about someone when they're dying. I don't know where I got that from but that's how I feel when I say it. Like as in, "We're keeping her comfortable until she passes."
But I have to get comfortable with that phrase because Christian's life centers so much around the concept of how we make his life the best it can be. In other words...his quality of life.
We are at a turning point, folks. We're considering whether the Keto diet is helping or hurting or doing nothing. But the fact is Christian is not a happy guy these days and hasn't been for a few months now. It's not a pain issue because I know his pain cry. It's a constant state of discontent.
Of course - you all know me - I've got irons in the fire, things on the back burner, plan B's, and plan C's.
One of my "irons in the fire" is the VNS. We had the opportunity to meet Mason and his mommy, Sarah at the park. Mason is a beautiful little boy who has lissencephaly, which, among other things, causes seizures. Mason received a VNS implant last year and has done really well with it. He is older than Christian, but still considered young for a VNS implant so I wanted to talk to a real live mommy who knows the deal. And the bonus was that we got to meet long eye lashed Mr. Mason!
Now, I know we've been here before...Something new! Something new! But if we've learned anything, we've learned that a miracle drug/therapy/massage/diet for one may not be the miracle for Christian. My intention in meeting Sarah and Mason was, one - because I love meeting other local moms with special kiddos, and two - because I was wondering about the technical details. What's the procedure like? How long is recovery? Were there any complications?
I'm sure there are those out there wondering if we are jumping the gun on this. They will wonder why we keep going, why we keep experimenting. Answers don't come easy when it comes to Christian. But one easy answer, without a doubt, is that we will do anything at this point to give him a good life...a good quality of life.
No, I'm not in denial. And a very wise special needs mommy once said - I'm not looking to make my child normal. I'm looking to make my child the best brain injured child possible! I'm not sure that's verbatim but I agree with every word of it. (And that special momma knows who she is.) ;-)
So what do you do to ensure the best quality of life, to ensure the best brain injured child possible?
Ahhh, that answer is an easy one...everthing.
And when do you stop?
Another easy one...never.
March for Science
6 hours ago