A day of reflection

Today has been a day of reflection. It’s one of those days when I feel a bit off. A bit down, a bit low in gumption to push on. We have a round tomorrow and as I am measuring out doses, and getting frustrated at dropping these tiny little capsules all over the place, my son walks in circles around the kitchen behind me. I am tempted to stop him but I remind myself that he can’t help it. Sometimes, for no reason he just walks in circles around and around while talking to me.

I spill the contents of another perfectly measured capsule all down my shirt. Damn. Have to remake that one now. For some reason my fingers always turn into mismatched digits of clumsiness when I have to mix this stuff. I don’t know why. After three years I should be able to mix it in my sleep. Oh wait, I have done that and I can do that.

My son is talking excitedly on and on about how he wants the picture he made to be in an art gallery like the real artists. Meanwhile, he goes round and round and I stop in between capsule making to stir dinner. Yep, here we go again. Another three days of less sleep. Sure, I am tired of it, really tired of it. I know I have to continue anyway. This is round 62 and we have a long way to go.

Earlier today we had to go on an errand. When we pulled in and parked I turned off the car and my son said “mom I wish it was 2007 again”. I asked him why. He said “you know why mom.” Except I didn’t know, and put his head in his hands. I said, “aw honey what’s the matter, why do you want it to be 2007 again?” He said, “mom because then I could see my grammer again”. He started crying. This is the first time he has ever let out tears about his grandmothers death and it was two years ago when he was 4 years old. He has talked about it; he’s visited the cemetery, and all that. But he had not shown any true emotion of loss. He acted as though she was still here, and talked about how he missed her. This was so out of nowhere today. I consoled him and we talked about looking at his “grammer book” when he got home. He asked if we could visit her grave and bring her flowers. I said we would when the weather got better. As I drove on to the next place, it dawned on me that he had not cried about her loss until now. Was this a sign of him being able to finally express emotions in the same way we all do? Maybe.

I ran my errand and we moved on to our trip to the library. My son desperately wanted to look for some books and videos. He did pretty well there. Sometimes he has a hard time there if it takes too long. He also tends to talk a bit louder than most people do there, but there are usually some ill-behaved children to take the attention away from us. He found the movies and books he wanted. He had the surprise pleasure of getting his first library card today! Now that he can write his full name, he can get one. He was so excited. All the way home he talked about what this meant. That he can get whatever books he wants now.

He was old enough to get a card last year, it never occurred to me to get him one. He was not writing well enough to sign it and for some reason I don’t always think he is as old as he is. It really is amazing how far he has come from where he was.

Last night we watched a documentary called “Beautiful Boy” about a family’s struggle to get treatment for their autistic son. They had video of him when he was a baby and up until he was 2 years old he was normal. He began changing after that and by the time he was 3 he was gone as we say in the autism community. He had regressed into autism. It was sad watching this boy change and watching his parents and knowing exactly how they felt, because we felt it too. As we watched it together, after the kids were in bed, we were feeling that this could have been our son. That could have been us. If we didn’t catch this as soon as we did. If he had been born a year earlier and gotten more vaccines……so close we were to fully losing him.

I wanted to write this mom a letter or send her an email…saying there is way to help her son. I don’t know if they would listen nor how to find them. I would like to see PBS air this movie again in the next few months. It needs to be seen by every parent. People need to know. This little boy has mercury poisoning.

As we prepare for round 62, I will gratefully take the inconvenience of spilling alpha lipoic acid down my shirt, or dropping capsules over and over while my son walks in circles behind me, because we are the lucky ones. My son can express loss now, even though I wish he didn’t have to feel it and he can sign his own library card. It’s more than we ever thought we’d see.

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