Letting Go

I didn’t want to see my kids jumping on a motorcycle or a dirt bike when they were five and seven years old—you know, zooming, and jumping, and burns, and crashes, and flying in the air—and all the things that boys like to do, but I did want them to experience life as it is, to the extent that I could. We did everything that we could to protect them but we let them be normal. The happiest I’ve ever been around my children was seeing the smiles on their faces when they were doing something that they enjoyed.

I think it’s important to understand that you’re entitled to your fears as a parent, but not to project your fears onto your child. When you have a child with a disability, whether its hemophilia or anything else, you have to keep that in the forefront of your mind, because you have more fears than the average parent.

When you impede a child’s growth, physically or emotionally, when he or she is younger, in my mind you’re setting the tone for problems down the road for that child, whether it’s a lack of sense of security in who they are or something else. I’m not saying, “don’t protect your child.” Even now I still protect Peter and he doesn’t live at home anymore! I still wish that there were times when I could put him in a piece of bubble wrap and prevent him from doing something like racing motocross, but you can’t do that and think that you’re going to raise a well-rounded, happy-go-lucky child.

When my kids wanted to learn to ride a bicycle I was paranoid. I mean, I was paranoid. My husband and I went and bought—I think it was a seven-inch bicycle—very low to the ground. We put helmets and knee pads on them. Then we took them out on the side hill of the yard, and told them to hold on to the handlebars, put their feet out and practice balancing going down the hill. When they did it a couple times I went in the house—not because I didn’t want to share in my boys’ excitement, but because I had to go in the house to cry.

I cried for two reasons. One, every time they crashed, part of me said, “Oh no, more factor—you know, bruises, problems, things are going to happen.” But the other part of me cried with happiness because my kids were learning to ride a bicycle!

I started a summer camp for boys with hemophilia in New York state, called High Hopes, about 18 years ago. I wanted to do it because I felt there was nothing in our area to draw together kids who had hemophilia and show kids that they weren’t alone. I had to travel two hours to go visit a family that has kids my sons’ ages. Nobody should have to travel two hours to have their kids play and feel safe and comfortable, but that was the way it was when my kids were little. So, we started this week-long summer camping program.

In the first year of the program, three quarters of the kids that went to the camp didn’t know how to ride a bicycle, and they were teenagers. So we brought bicycles to the camp.

And the kids learned to ride.

Before your child begins any physical activity, always consult with a doctor or Hemophilia Treatment Center to make sure the activity is right for him or her.