Not sure what I’m doing up. Can’t sleep. But if I take those damn pills, I sleep until 9. Not good.
I’m having more nightmares. The ones that fast forward through all the shit we’re about to face and zooms on in till the end. The ones where I lose my son.
You know, the mind really is a remarkable thing. Your body shuts down when you find out your child is terminal. The only parts of you that are working are the ones that have to work to keep you going. The ones that help you pick em up and put em down. That’s it. Everything else gets hidden away, protected from the truth. I have actually managed to keep quiet to most of my functioning self that my son is probably only going to be here a short time on this Earth with us. So to experience the sensation of “discovery” when another portion of my brain gets the memo about the truth, well, it’s very surreal. Getting to experience it over and over again. The discovery. That’s a way of putting it. But each time another ….. layer of me, if you will, learns about Ian, I have to go through it again just like it was the first time. But i’m not saying it’s all bad. It’s not bad at all actually. It’s actually the hardest and most beautiful thing I’ve ever experienced. At no other moment is his life more precious, more weighted than it is when you find out how very fragile it really is. The instant you learn your child is dying, the instant your whole life shifts — and that child takes center stage.
The past few weeks have been worse since camp. The questions he’s asking are hard. He wants answers and truths and I can’t give it to him. he’s simply too young. Doc agrees. I’ll just keep deflecting until he’s a little older. He still thinks he’ll walk forever. I’m not going to crush the little guy and his spirit. I just won’t. Not until I have to.
He wants to know if he hands will gnarl up. He wants to know if his legs will twist and his feet will curve. He wants to know if he’ll need a feeding tube forever and a machine to help him breathe at night. All must be things he’s seeing at his age level at camp. he’s the only one of his group still walking.
I’ve taken a look around and realized what life has snuck in while we weren’t looking… my son now needs someone to pick him up every time he rises from the floor. He needs carried up and down the steps every time now. He can’t put his clothes or shoes on at all now. It’s harder for him to manipulate one step without a railing than it is 10 steps with a rail. Sad to watch. He needs carried every where we go, so we have to make sure the wheelchair is in the car at all times now. His arms and hands are losing strength as well. He’s no longer able to play with a few of his toys now that require any kind of hand muscle at all. He now falls – a lot. He falls so much someone has to hold him up as he walks. He hates holding hands, so you have to sort of hold his arm so you can catch him when he goes down. Cause he will go down. He messed up both ankles the past week by rolling on them.
Ain’t no way to stop it. No way at all. And the night mares will continue…