Still Life: The Portrait of a Child

It started with a picture, on Dad’s pc, of Dear Son sitting with his paternal Grandma. His face, smiling and full of life, was in drastic contrast to the teenager he had become. Gone was the excitement, gone was the energy and gone was the little boy. We hadn’t noticed how much Dear Son had changed until we saw that photo. The photo, reminded us of Dear Son’s younger days, walking on his knees into the kitchen, to let me know he was hungry and it was time to eat. I loved those days. I always felt it was important to acknowledge Dear Son’s communication efforts and that was how he did that. It wasn’t enough just to feed him at normal mealtimes, but to give him some food or a drink when he wanted. That was an accomplishment.

We talked about the picture and then let it be. From time to time over the past few weeks, the photo would surface and his Dad might mention how he wished he could do those things again. His paternal Grandma, would talk like that as well. This was a different position for her, after drilling me for years with the same question, “When is he going to be normal?” She asked me that for the first ten years of his life. I let it go most of the time, not wanting to state the obvious in full earshot of Dear Son, but on occasion, I’d tell her, “he’s never going to be normal.” At those times, my feelings would be hurt. There wasn’t any malice to her statements, but rather, it was more or less wishful thinking on her part, having never been around a child as disabled as Dear Son. Now she says, “I wish he could walk on his knees again” or she’ll say, “it would be great if he could do “x” like he used to” and then she trails off. The change from the question, was just another indication, that life for him was different and everyone was beginning to notice.

Dear Son hasn’t been able to stand since 2004. He had the g-tube implanted that year for medication only and there were some issues after that. A surgical nurse had put in the wrong size tube and kept trying to adjust it for months. That error, compounded itself and the too large feeding tube blocked the stomach opening which led to months of vomiting and missed days at school culminating in a 32 day hospitalization where the error was discovered. That wasn’t until he had lost over 10% of his bodyweight in a month and he had grown quite weak from the months of vomiting. He never regained his ability to stand again.

As time has passed, his body continued to fail him and he needed more support. We got a larger wheelchair, a new hospital bed, the hoyer lift, a hydrolic bath chair and switched to g-tube feedings exclusively. It seems almost that his physical abilities seemed to have diminished in direct proportion to his vertical growth, although we know that is not the sole or primary reason for his failures. I am also used to helping him more. Helping him roll over at night was just the beginning. First, it was just a roll and now I am lifting his hips up off the bed to complete the roll followed by lifting his head off the pillow and his shoulders to position him just right. You don’t notice those things really. They sneak up on you.

It wasn’t until I was talking to a new sitter this week that I became uncomfortable with some of the changes. The sitter, an aide in his classroom, is also his designated bus aide. She rides to school with him every morning and evening, in case of medical issues. I hired her to babysit this Saturday evening, since I am going out for the evening; I have been invited to a black tie affair for a non-profit fundraiser that benefits Special Needs children. This will be the first time she has cared for him in our home and I was telling her what to expect. It was then that I realized his life isn’t quite the same. You get used to doing things a certain way, a way that helps Dear Son and then, when you have outside eyes looking at it, it feels odd, almost like you have to defend your behavior, since it’s so out of the ordinary.

I was explaining that when she arrived on Saturday, he would be in bed. He goes to bed around 5 p.m. which is when I hook up the feeding tube for his dinner. Approximately fifteen minutes after that, I give him his seizure meds. He’s on quite a bit of meds and most knock him out pretty quickly, meaning he falls asleep. Once he gets the meds, it’s nearly impossible to move him and it’s just not safe, hence I put him in his bed at that time. He typically will sleep until the next morning, waking up for diaper changes and drifting in and out of sleep. He likes to listen to his iPOD while he gets dinner and sometimes I have the t.v. on but the mute button pressed so he has something to watch. Certainly, he’s not asleep 100% of the time from 5 p.m. on, but yet, it’s different. While I still need to change him, give him his midnight meds and roll him over every two hours or so, it’s our reality. But explaining that to an outsider, is well, different.

I guess I was really stuck by the contrast the other day, when I got him off the school bus. His head was lying on the right side of his chest, and his body was positioned in his wheelchair. There was no movement of any kind and if you didn’t know any better, you may have thought he was beaten up on the bus and left for well, you know. The inside bus aide* moved his arms and placed them back on his arm rests so he could maneuver him off the bus. Dear Son’s arms, don’t work very well. He has no use of his hands or arms so when they fall off the arm rests, they have to put them back on so they don’t get caught in the doorway as they roll the wheelchair onto the ramp. I joked to the bus driver and said it looked like Dear Son was beaten up on the bus, given his condition. Dear Son never looked up. He was just tired. Tired from a day at school. As I rolled him off the ramp, I kissed his head and rubbed his shoulder; I told him I was glad he was home.

The days take a lot out of him now. Just getting through the day is a major accomplishment. After he gets off the school bus, I take him in the house and use the Hoyer lift to get him out of the wheelchair and into the rocker. From there, he likes to lie his head on the dining room table and listen to his Christmas House. He used to look out the window but he can’t sit up well enough to do that anymore.

I glanced at the picture again and thought about him as his head lie on the table. The picture brought back memories of his spirit, his excitement and his wonderful smile. It’s kind of like aging, when you look at a picture of someone when they are younger and then you see them twenty years later as a senior citizen, with lines on their face that tell the story of how they lived their life. You see the smile lines around their eyes or maybe you see the frown lines on their head, or you see the lines above their lips to indicate they were a smoker. But what do you see when you look at the face of a child’s picture, of kids like Dear Son? You see the life they had. But not who they were allowed to become.

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Note:*There are three employees on the bus- a bus driver, an inside bus aide who does the tie downs for the wheelchair to the floor for safety, and then his female bus aide who rides the bus for medical issues.