The Chair

Photo of Dear Son, Age 11

I remember the conversation distinctly, as if it were yesterday. The geneticist told me that a disabled child’s average lifespan was five years after they first started declining. In my mind I knew exactly when that happened. For Dear Son, that year was 2004. That was the year he got his feeding tube put in, just for meds, and the surgical nurse who did all follow up visits kept messing with the size every time he had a visit, trying to find the right size but to no avail. The tube was either too tight or too loose. It wasn’t long before Dear Son began vomiting. He vomited on and off for seven months and had numerous hospitalizations before the radiologist, Dr. X, figured out the too large feeding tube was blocking a small pyloris (the stomach opening) and not allowing the food to empty. In addition, it scratched his entire stomach, leaving multiple abrasions that were easily viewed from the upper GI. And the food, well, it just sat in the stomach until it putrified and then he would throw it up. He was hospitalized month after month that year with no results until that last hospitalization in December of 2004/January of 2005 was when they figured it out. Unfortunately, by that time, Dear Son was weak. He slept the next ten months or so and never recovered. He wasn’t able to go to school. Prior to that error, he was a happy young man, who walked on his knees. Yes, he could walk on his feet with his leg braces in a special gait trainer, but for home use, he walked on those knees. Needless to say, I’ve never forgotten that nurse or that hospitalization. It was the beginning of the end.

Photo of Dear Son, age 13, in January 2005, after he was released from the hospital, where he lost of a lot of weight from the feeding tube error.

A few years prior to that, I had purchased a rocker for him. My husband and I had been looking for dining room chairs for our kitchen table and were in a furniture store. They had a wonderful maple rocker there and as Dear Son started to fuss in his wheelchair, I placed him in the rocker. He loved it. So much in fact, that we bought it for him. He used that rocker for years up until that hospitalization.
Photo of Dear Son's first rocker; he had almost outgrown it at this time. He used this rocker for about nine years.

After that hospitalization and recovery, he needed more support. The maple rocker was fine but with his long legs and lack of tone, he required more back support. It was hard finding a rocker for him with a tall back. With a rocker, Dear Son was able to rock and to scoot the rocker around a bit to get around the house. Granted, he couldn’t go far but it did give him a little independence to look out the window or to spin around and watch t.v. Since he needed more support, a regular chair wouldn’t work very well. Soon, I found a taller rocker with a wide back, much like a Windsor chair. With that rocker, he was in business again and could look out the window. It was important to keep him active. At least if he couldn’t walk on his knees, he would still be able to use the rocker. Photo of his next rocker.

Soon, he outgrew that one as well. More important though, was that the rocker wasn’t sturdy enough to move him. He soon lost his ability to move around very well by himself in the rocker. He could no longer use his feet to turn the rocker and I’d have to turn the rocker with him in it. This required a sturdier rocker with a tall back and more support. After looking around, I found this rocker on-line. I went to check it out and it was perfect.
Photo of his last rocker.
That rocker lasted a year or two until Dear Son grew some more. By this time, he was pretty tall. Not only were his legs longer but his torso had grown. No longer could he sit upright without falling to the side or falling forward. His progressive disease was kicking in and he could no longer sit upright on his own. It was then that I had to move him from the window, which he loved to look out, to the dining room table. From there he would sit at the table and look out the window. Sometimes, he’d lie his head down on the table. But it wasn’t long before he couldn’t do that and soon, he couldn’t lift his head up but instead would just lie his head on the table and listen to music. Photo of Dear Son listening to his Mr. Christmas music box.

But last year, he lost that ability. Soon, he had no tone and when he’d lie his head on the table, it left big red marks and he would cry. It didn’t matter if you put a pillow or anything on the table first, it was just that he couldn’t support himself and the weight of his head was too much. By that time, we knew we had to get him more support so we got him a recliner. The recliner would support him more and the swivel action would allow him to turn the chair so he could watch t.v. or look out the window. Photo of his recliner that swivels.

Photo of Dear Son in August of 2009.
But that’s all about to change. He’s been falling over to one side in the recliner for a while now so I have to prop him up. He no longer uses his feet at all to swivel the recliner. Instead, he sits exactly where you put him. At times when he sits there, he looks like an old man in a retirement home, one with dementia who has lost his ability to move. The only difference is that Dear Son is much younger. He’s getting tired though. Not only does he cry from the pain from sitting but he just looks exhausted in the chair, as if his body can’t do any more.

After I got the recliner, I moved the other rocker out of my living room and into the garage. I placed it near the gait trainer that he no longer uses and hasn’t used in five years or so. Somehow getting rid of them is hard. It means he’ll no longer use them. I know that, but the reality is that those items represent the life he once had. If I get rid of them, I must admit to myself that he’s getting progressively worse. As parents, it’s easy to see our children in terms of their milestones, their first shoes, their first words, etc. As parents of special needs children, we wait a long time for those first anything’s to occur. Now, we no longer count the milestones that he has achieved, but the ones that were taken away. Who needs a health history when you can just look at the chairs? And one of these days when he's lying in bed, I'll look back at the chairs, and remember the good old days, when he could sit.

Note: Dear Son is eighteen years old and suffers from intractable seizures, dystonia and severe mental retardation as a result of a random mutation of the ARX gene. In addition, he suffers from a progressive neurological disease.