Paul led me to conclude that walking is overrated. It was something that we were really concerned about when we got the initial diagnosis, at birth. Our kid would be different, and it would be obvious because he wouldn’t be able to walk. My initial feeling was that we had to get him walking, no matter how much work it took. I think it was important to me that Paul would be “normal”.
Of course, Paul was delayed in most of his physical development. He had a lot to deal with his first year, just to survive. Closure of the lesion and placement of the shunt to drain CSF were very early surgeries. He had three shunt revisions his first eight months, and a very nasty brain decompression surgery at about six months that was hell. At eight months he started breathing very weirdly at night. Every time Kathie took him in, he would not have any problems, so I am sure they chalked it up to nervous parents.
Then in July 2002, Kathie took him in yet again because we were worried about his breathing and he actually did his weird thing in front of the doctor. He said we were getting an ambulance and going directly to the hospital. Paul was sucking in his chest in order to get air because his vocal chords were blocked. I was at work, so I am not sure how Kathie convinced him to let her drive Paul and she called ahead to make sure he could be admitted instead of going through the nasty ER. He got a tracheotomy that visit.
We learned to take care of that and went through 3 more shunt revisions in Paul’s first year or so. We had night nursing to make sure he kept breathing and we learned to catheterize his bladder. This is getting to be long and depressing list, I know, but I have a point to make.
After a few more months we could remove the trach. He was breathing on his own and his vocal chords were compliant enough! He was eating and breathing and soon started to make sounds with his voice! All these decisions, emotions and stress on our young family in less than 18 months. And we had no idea what might be coming next, but we had something that seemed like progress at last.
So, when people would look at Paul and imply, or say, something like “Poor kid can’t walk”, that made me laugh after a while. I kind of felt sorry for the person who thought that way. I could give a crap less about waking anymore, he was alive and talking and learning and enjoying his life. If we could keep him walking great, but it was no longer was the most important thing to us.
After Paul grew to be a bigger kid, he no longer walked, but Paul did walk for many years with the help of crutches. The highlight of his walking was getting yelled at by Mrs. Rear at Belleville Grade School for running in the hall during a parent-teacher conference. We all couldn’t even pretend to be upset about it. When he ran he sort of skipped for joy, and none of us took even one of his steps for granted.