Ben Young is out on the deck with his team, having breakfast through his tube. I wonder how that feels. He seems to be content with it, although I am having some trouble reconciling the fact that Ben does not get all the big tastes anymore. He used to love Milanos and milk after every evening dinner. It was a tradition. Sometimes we still give him a tiny taste just for old times' sake. He is so accepting. It's a marvel. He is the most accepting human being I have ever met, and he is very happy. Not all the time, mind you; he has a flair for impatience if he is going somewhere and there is a delay. He just yells! You know he is pissed. There is no stopping him. More power to you, Ben Young!
We had to stop feeding Ben Young by mouth because his lungs have become compromised by all the aspirating he does. It's a complex thing, eating. The body does a lot of work to protect itself and keep food out of the lungs. Ben's body is not working like a normal body does. Ben and Dustin and Uncle Tony are out on the deck listening to tunes on the computer and grooving. Ben's next support team is incoming for a shift. Uncle Marian and Ben Bourdon arrive in Hawaii today from the mainland, and the switch takes place around twelve-thirty. Time marches on. Because of the support, Ben has a very full life and keeps moving around, doing things, seeing people and going to events. I reflect on this. Life is good.
Tags: ben-young complex-health-care living-with-disability
Our family was starting. We kept on moving with our young lives, shortly afterward and took Ben Young with us everywhere. But pretty soon Pegi started noticing that Ben was not doing the things some other babies were doing. Pegi was wondering if something was wrong. She was young, and nothing had ever gone wrong in her life. People told us kids grow at different rates and do things at different times.
But as Ben reached six months old, we found ourselves sitting in a doctor's office. He glanced at us and offhandedly said, "Of course. Ben has cerebral palsy."
I was in shock. I walked around in a for for weeks. I couldn't fathom how I had fathered two children with a rare condition that was not supposed to be hereditary, with tow different mothers. I was so angry and confused inside, projecting scenarios in my mind where people said something bad about Ben or Zeke and I would just attack them, going wild. Luckily that never did happen, but there was a root of instability inside me for a while. Although it mellowed with time, I carried that feeling around for years.
Eventually Pegi and I, wanting to have another child after Ben, went to se an expert of the subject. That was Pegi's idea. Always organized and methodical in her approach to problems, Pegi planned an approach to our dilemma with her very high intelligence. We both loved children but were a little gun-shy about having another, to say the least. After evaluating our situation and our children, the doctor told us that probably Zeke dis not actually have CP-he likely had suffered a stroke in utero. The symptoms are very similar. Pegi and I weighed this information. To know someone like her and to make a decision about a subject as important as this with her was a gift beyond anything I have ever experienced. It was her idea, and she had guided us to this point. We made a decision together to go forward and have another child.
Tags: family disability unexpected stroke cerebral-palsy ben-young zeke-young
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