Slip Sliding Away

Dear Son was looking forward to his birthday. We had been talking about it for weeks now. Typically, I’ll send a cake to school and they will celebrate there, in addition to our little party at home. Dear Son loves a party and loves it even more when everyone sings to him. I was looking forward to it too, but was trying to figure out what I could get him, in addition to some new clothes. What he really needed was a new leather rocker/recliner, like the one at his Grandma’s house. Her rocker/recliner is very large, made of dark brown leather and has a lot of padding. Most important, it has a tall back to support Dear Son’s head and neck. That, along with the large armrests, make it perfect for Dear Son. He loves to sit in it and look out the window. What’s nice is that if you are sitting on the sofa in the living room and say something to him, he can take his foot and swivel the rocker around to face you. I like that because it gives Dear Son a chance to do what he wants to do, instead of waiting for someone to turn him around. I think that is important. In addition, it provides more support, something he badly needs now that he is deteriorating.

I had made up my mind years ago, when he got his first wheelchair, that I’d never use that in our home as a chair for him. Eating in it was fine, or transporting him in it was fine, but just letting him sit in a wheelchair, seemed almost cruel. Sitting in the chair, without being able to move around unless someone did it for you, just wasn’t right. Once I found his first rocker, my problem was solved. He either used that or walked on his knees. Now he can’t really do either.

I got him a special chair, among other things, for his birthday. The chair, was a mission styled glider, with a burgundy leather seat cushion. What I really needed was a new leather rocker/recliner for him, but I couldn’t afford one. This chair was used actually, but would meet his needs perfectly. The back was tall to support his head and neck and the arm rests were not only wooden, but nice and wide, to provide support for his forearms. He had actually used the chair nearly two years ago, during a family outing at my sister’s fiance’s summer home. At his house, it was the only chair Dear Son could use. He was happy to get out of his wheelchair to sit in the chair. At that time, he couldn’t sit very long, let’s say three hours or so before he’d have to lie down. But the chair, he really enjoyed. He sat there for hours with us, rocking the chair by pushing his foot against the hardwood floors. Dear Son’s feet have always worked fairly well and although he can’t stand or walk, he can move them fairly easily.

A few weeks back my sister’s fiancé was looking to get a new chair for his house. He asked if I might want the chair for Dear Son. I agreed and he promptly bought the chair over. I decided to give it to Dear Son as a birthday present, along with some other items. I hid the chair in the garage and covered it up so he wouldn’t see it, until the big day.

His birthday arrived. I had the new glider sitting in the living room when he came home from school. He liked it and was eager to try it out. He sat in it and it supported him well. It took him a while before he used the glider portion though. He just kind of sat in there. I was excited that it worked for him. The only downside was that once he was in the chair, I couldn’t really turn the chair around, like I could his rocker. This was a bit problematic since once I sat him in the chair, I couldn’t move the chair to the dining room table so he could listen to his country music after school. He liked to sit in his rocker after school, with his head lying on the table and listen to his music. The glider then, was used mainly on weekends.

Typically, on a Saturday, I’d get him up and sit him in the chair. He had deteriorated enough that I could no longer use the rocking chair, since he’d fall over. The new leather glider had solved that problem or so I thought. Just last week, after sitting in it for a few minutes, he slid right out of the glider and onto the floor. I was right there to catch him, and he wasn’t hurt, but still, it was a problem. This week, we used the chair even more, while he was on Thanksgiving break, and it happened a few more times. Further evidence he was deteriorating. He’ll be sitting there, the tone just leaves his body and he slides right out onto the floor.

Soon, I began to do a work around though. I’d start him in the glider and then after he’s up for a little bit, transition him to his rocker and sit him next to the dining room table. Once he’s there, he’ll rest his head on the table and listen to music for a while. When he gets tired, he’ll yell out and that means he’s getting tired and needs to lie down. But today was frustrating. He couldn’t sit in the glider and he couldn’t sit in the rocker. Each time, he’d fall over to the right until I finally had to take the hoyer lift and put him back in his bed so he could lie down. It was frustrating because I wondered what I would do once he couldn’t sit up anymore. True, I could use the wheelchair but that is stationary. It was then that I realized that things were probably not ever getting better. I knew the path we were going down but I guess I expected that one day, he wouldn’t be able to do these things and then I’d know. Instead, it’s not really like that. They lose a little bit every day and you make adjustments, until one day, they can’t do it at all.

It reminded me of when he was little and learning to walk. I kept waiting for that big day when he could walk. I remember trying to define what that day would be. Would it be the day he took a step in his walker, the day he walked in his walker or the day he could walk by himself in the walker or what? It was none of those. It just happened gradually. And losing his ability to sit up, will happen the same way.

Note: Dear Son is seventeen years old and suffers from a progressive neurological disease and intractable seizures as a result of a random mutation of the ARX gene. This mutation causes Infantile Spasms, dystonia and severe mental retardation.

Photos are of Dear Son a few days after his birthday.