Let Boys Be Boys

My son’s favorite activities are dirt biking, bicycling, soccer, baseball, golf, running—anything that’s outside. When Alex was first diagnosed with a bleeding disorder, my in-laws were worried about him not being able to just “be a boy” —riding dirt bikes, playing football, fishing, hunting, things like that. But I'm pretty open to Alex’s involvement in most activities as long as he takes the proper precautions.

With dirt biking, for example, he has to wear properly fitted protective gear and follow the rules. Alex plays baseball and I prefer that he doesn't pitch, because pitchers can get a ball right back in the face. But I don’t think he can get hurt any worse in baseball than he can in soccer or golf—have you ever been hit in the head by a golf ball? He plays catcher and all the other positions. His elbow has been injured before, so every year, he gets fitted for elbow supports that match his jersey.

We take other common-sense precautions as well. For instance, we infuse him right before activities. At least one family member attends each sport function, so there is always assistance available in case of an injury. Alex takes a medical bag with him, and I tell the coaches or teachers, “If you wouldn’t call 911 for your kid, please don’t call it for mine.” Because Alex doesn't bleed any faster than any other kid. I tell them that if Alex gets hurt, put ice on the injury, give me a call, and we can evaluate it at that time. He's not much different than you or me. On camping trips, we infuse him the day before we leave, a “just in case” precaution.

We also have a deal with Alex. If he jumps off the roof and hurts his leg, he will not get in trouble for jumping off the roof…well, not right away. But if he doesn't tell me he got hurt and he needs an infusion, he'll be in double trouble. It's more important that he gets care for his injury. Sure we’re also trying to teach him to exercise good judgment, so we will deal with jumping off the roof later. But he won't be in trouble for it at that point anyway. That's our deal.

I think we've done really well about educating Alex’s school, so we don't have any problems there. I've told Alex’s teachers and coaches that Alex is his own best advocate. If Alex says he's hurt, he's hurt. Send him to the nurse's room. If he needs ice, he needs ice. If he needs to go home, he needs to go home. If he comes to school on crutches one day, and the next day he's not on crutches, that doesn't mean he faked it. It's just that the medicine needed time to work. It took a while, but we finally got the information to all the people who need it.

If there's anything that I can pass on to other moms, it would be don't put your kids in a bubble. Don't make them wear bicycle helmets in the house. Don't keep them from going on the school field trip. Make sure they understand that they're worth a hundred percent just like anybody else, and that they're not handicapped. They're just slightly inconvenienced, that's all.

Children’s emotional health, to me, is far more important than their physical health. There's a lot of medicine out there that'll fix almost anything, but there isn't anything out there to fix a mental scar. Alex could wreck his dirt bike tomorrow, get all banged up—and I can have a truckload of Helixate^® FS here in two days. I could have a whole semi here if I needed it. But none of that factor is going to fix a self-image problem that he may develop by being put in a bubble, or being made to stay on a couch, or not being allowed to participate with other children. If you don’t allow them to be children first and hemophiliacs second, I don’t think you’re doing your kid justice.

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.