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Paul the Kid

By November 2, 2017 No Comments

Paul was not Spina Bifida.  He was born with SB, but he identified himself as much more than just that.  He related to being an athlete, a student, a friend, a brother.  I don’t miss the SB.  I have visited with lots of the other SB families and medical staff since he passed away, the people are still great.  But I don’t miss the appointments and surgeries and anguish.  I miss the stuff he did as a boy having fun, interacting, and learning.  He was a great kid, not just a great SB kid.

He really liked everyone he met.  I don’t remember him disliking anyone or complaining about anyone at school.   As parents, probably our biggest fear, other than health issues, was that he would feel left out or be picked on for his disability.   I often hear how kids have gotten soft and too sensitive compared to how things used to be.  I can tell you, I sincerely appreciate the fact that Paul’s classmates and friends were taught that being different is to be appreciated instead of ostracized.  Paul was aware of what people thought of him, and he had enough confidence to be chatty and friendly with people.  We saw it again and again at his celebration and since – kids we didn’t even know who introduced themselves as Paul’s friend.   That was all Paul, we were pretty powerless over that part of his life.

He loved to compete.  He really loved baseball. I had loved playing softball growing up, so it hurt me that he couldn’t play that.  Little league was one of the things I felt I really missed out on.  We did play catch and he got kind of good catching and throwing while in his standing or sitting chair out in the yard.  I loved that and will always remember those days. He also worked on track events starting in 7th grade.  He rarely had any competition, but when he did he had his best performances.  And there was good teasing after the events with the competitors, one way or another.

Hockey was his main sport.  Like all hockey parents, we spent a fortune on equipment, travel and hotels to play hockey all over the country.   He saw the sacrifices we made as he got older, and knew he should give all his effort on the ice, since it took so much to get there.  In the early days of the team, they mostly played high school teams who had never been in a sled before. The Madison Fire Department played us every year too.  The Skeeters (or Warriors at first) won easily most times.  Then, we started playing other sled teams from Minnesota and Chicago.  I know Paul looked forward to those weekends because he got to play against real competition – sled kids his age and older that knew how to play.   He was going to be one of the oldest kids on the team this year, and was looking forward to being a team leader.  There are several new sled teams in the Midwest this year, and he was ready to play a bunch of new kids.

I have learned a lot about what we appreciate as a grieving family and what we don’t appreciate so much.   Everyone that tried to help was appreciated for trying.  I know that before this happened, I was probably not a good helper when a friend of mine suffered a loss.  Just like I would not have understood being a parent of a handicapped kid before that experience.  So maybe this helps someone like it would have helped me.

People asked if we need anything, but we didn’t know what we needed.  We appreciate people who just did stuff for us those first few weeks.  People who offered to take us out for a meal or a drink, even if we said no.  When we started saying yes, it helped us to be out.  People who brought food, or photos of Paul, or sat and chatted about Paul, that was all good stuff that I will remember.

People ask “how are you?”  From me, this gets a response like “good”, because I don’t think you want to hear how crappy it is, if it is at that moment.  I prefer when people have a minute to ask “How are you doing today?” because somehow it sounds like you really want to know specifically how today is going for me.  But mostly I just like it when people say his name, share a memory or ask something about him.  Even if I heard or told the story a million times before, I still enjoy it.  So, I share things that you might already know for my own benefit.  If you get something out of it too, all the better.