I have been having a hard time with this term. "Special Needs" When this all began I went through a time of grieving Hewitt's future. There are a lot of unknowns with Doose syndrome. Many kids have severe developmental delays because of it. This has been one of the hardest things for me to accept. Much like the first week when I finally had to face God about letting go of his life. This has been my second "letting go" of Hewitt. He was born perfectly healthy. He lived almost 3 years perfectly healthy. Not just healthy, but smart and witty and feisty and fun. He is unlike my other children. I adore them all the same, but Hewitt is different. He is his own man.
As one Dr. put it, it's like he's been struck with lightning. I know I've posted that before, but it's so true. I was reflecting on this "letting go" yesterday and all the feelings of sorrow came rushing back. When the nurse came and she was telling us the things he qualified for she used words like: developmentally delayed, special needs, BLAH BLAH BLAH BLAH. She talked about the special programs at Shoreline here and all I could think about was him sitting in a classroom with all these developmentally delayed children in his little blue helmet, looking delayed but feeling lost. I can't think about it without crying. He shouldn't be there and even now it's hard for me to let this go. There's nothing wrong with those children, but when you have a healthy child who's mind and body are strong, it's hard to imagine how he might feel being surrounded by children who's minds and bodies aren't as strong.
When I was walking through this in the beginning I was terrified. I mean absolutely terrified of the idea of losing him...not physically, but his mind. I cried about it all the time. Of watching my little boy turn into something else, all our future dreams of love and life were suddenly stripped away. It seemed so unfair, so impossible. I carried this guilt because I honestly felt, and I didn't want to say it out loud, that it would be harder to deal with that than with actually losing him. I know that sounds so bad, but that is where I was at. I wish I could say that I had an amazing revelation that changed my perspective, but I didn't. Like before, I am resting in simple things. The fact that God knows and calls me by name. The fact that He loves Hewitt more than I do and He knows the hurt I feel for my son. The fact that this life is a vapor and the pain of today will be gone in heaven.
I am trying to accept the changes now. He has small bits of regression, largely medicine related in my opinion. I have met enough people that have positive outcomes that I no longer focus on this aspect of the syndrome. But, every once in a while like yesterday, it comes back to the surface and I have to deal with it again. Acknowledging that God is in control is the most comforting thing I can do. Hayden reminded me of something very simple but profound in the midst of all of this. God is always right. He is always right. He doesn't make mistakes, which means that He allowed this to happen to Hewitt and it wasn't a mistake. Right now I'm not sure what that means for Hewitt, but I know that He is teaching me a lot through it.