Today has been one of those days. We got to spend Sunday morning at the local urgent care facility. Obviously this was not a planned stop, but not one that was unexpected, either. First, let me be clear – there was no risk to life or limb. Everyone is basically fine. The trip resulted from the Vesuvius-like eruption of a cyst that had developed on our son’s smallish posterior. Ian is thin. Skinny is a better description. This is partly due to genetics (not my side) and to his cerebral palsy. He carries about 2% body fat, though he eats like a bear just out of hibernation. Sometimes I count our china to make sure that he didn’t accidently wolf one of them down in his feeding frenzies.
So, how does all this link up? Bottom line, he has very little fat on his backside, which sometimes results on a little too much pressure when he sits. The result sometimes is the development of a cyst. Sometimes they go away by themselves. Twice now, they have not. This was the second one. In those cases, the doc numbs the area, pulls out the scalpel, and incises them. It isn’t pretty. Then for the next several weeks, I wind up packing it with special strips to allow it to first drain and then heal from the inside out.
Now for the really important question – Why, Mark, are you grossing all of us out with this story?
The reason is that it got me thinking. I spent a good deal of time thinking back on past medical procedures and other related things. In doing so, several things kept popping into my head. First, over 19 years, we’ve seen the doctor way too many times. I’m sure there are others of you out there that are nodding your head in agreement on that.
The second thing that popped into my head was just how these kind of medical distractions impact Ian and other kids I see with disabilities. In many cases, the impact is somewhat more pronounced than it is for a person without disabilities. Just the additional stressors on the body from insult or injury have to take a toll. I will probably need to make arrangements to get Ian to and from his classes at community college this week. Normally he drives without any problem. But just the added distraction of sitting on the incision is enough to be a real problem for him. Something like this event would bother me, but it really does impact Ian and his ability to function. I think sometimes that these things act as that additional monkey wrench in the machinery, just bringing long practiced processes to a halt. I’m guessing other parents reading this understand exactly what I’m talking about when I talk about these kinds of additional impacts on the child with a disability.
That then led me to the third thing that popped into my mind. That was how even when there are these medical issues that show up and impact the lives of these kids, how these kids just keep getting right back up and moving on. I have seen so many kids with disabilities, when something goes wrong, just keep plugging away and moving forward. Whether it is something like this cyst, or a broken arm, or some kind of surgery, it really doesn’t matter. The attitude I often see is one of ‘ok, can’t do anything about it, so how do I get around it and get where I want to go?’ They may be down for a while, but usually they just want to get through it and get moving again.
I always think back to when Ian was about 6, and was learning to walk independently. He was still using a posterior walker to get around. Anyway, he fell off a bench and needed stitches in his forehead. He was not happy about it. When finished in the E.R., he took off in his walker, headed for the door at full gallop. At the first turn, he promptly rolled the walker. I took one look. Mom went and scooped him up, and I looked at the doctor and nurse and said, “please don’t go anywhere with the stitch kit.” They looked at me and said, “WHY?” And I told them, “Ian just rolled his walker, and my guess is that he just busted every stitch you just put in.”
I was right. This time, Ian got two additional internal stitches to make sure everything held together, as well as replacement ones for those that were busted. Ian was MAD. Not about getting stitches, but about the fact that he had places to go and things to do, and all this stuff was just interfering with getting on with his business. It was, in the great big picture, a little thing. But I see this kind of attitude with so many kids. They have the drive and the desire to go and do. They don’t want to let anything hold them back. Right now, I’m being told that things in the backside area feel better. The incision hurts a bit, but no pressure from the cyst. Ian’s concern is if he can drive this week and what about going to exercise. This is just something else that he needs to deal with so he can keep moving on.
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