by: Derek Markley
As a father, I will be the first to say that learning about hemophilia leads to a number of questions about the life your son will live. This is highly dependent on your own childhood. Hemophilia mainly affects boys. There are women who suffer from hemophilia and other bleeding disorders, but hemophilia often discriminates. It likes to live in boys.
No one can stereotype exactly what a boy’s childhood will look like. Personally, I forecasted my son’s future based on my own experiences. We lived out in the country, and growing up, our daughter was happy being outdoors. With a son, I expected that we’d have someone who was simply a replication of me as a child, and also loved being outdoors.
I like to be outside. As a youth I played outdoors, shot BB guns, fished, and often did things that resulted in falling, tripping, slipping, or sliding. None of this was out of the ordinary. Little boys come back in the house dirty, sweaty, and bleeding sometimes. I was no different.
My fondness for being outdoors also meant that I was constantly playing a sport. My parents enjoyed that, and let me play year-round. Baseball, soccer, and basketball took up most of my year. With all the sports seasons running end-to-end, I picked up a stream of kid injuries, such as broken fingers, twisted ankles, bloody noses, and all manner of bumps, bruises, cuts, and scrapes. Those things were just a fact of life. Rarely was anything bad enough to warrant a trip to the hospital or 24-hour clinic, but we did end up there a couple of times.
How do you raise a boy with hemophilia, based on that kind of a childhood?
Bubba’s diagnosis immediately made me confront my own notions about what little boys “should” be able to do. Because of my own childhood, I had an irrational fear that he wouldn’t ever have a fully “normal” childhood. I never had to be the kid who sat out of the game, avoided jumping off a slide or tree branch, or shied away from a backyard game of football.
As boys, those are things we’re supposed to do, right?
After the diagnosis, my brain was trying to immediately construct a vision of what Bubba’s life would look like for his first 18 years. He’d miss everything that had made my childhood fun. He’d always be on the sidelines. He’d never get to enjoy the benefits, and the associated consequences, of taking the risks that little boys take when playing, fighting, or just being rough-and-tumble kids.
The problem was that I’d already imposed my childhood on Bubba. I guess that’s a natural reaction for some fathers. You are given someone you expect to be a little copy of yourself. The idea is that this little person will have to grow up to learn how to be a boy and later a man. Immediately, you begin using your own experiences as a model for how that might look.
Another problem arises when it begins to sink in that everything is not under your control. You didn’t get to vote the genetic mutation occurrence up or down. It’s something that just happened. It suddenly becomes apparent that you only have an illusion of control. Life likes to make a point occasionally.
There are times when one of the worst things we can have is an active imagination. Of course, it’s fantastic when you’re a kid: without an imagination, floors cannot become lava and castles can be constructed with pillows. But grown-up life can turn an imagination against you. This was particularly true for my wife and me in the first few days post-diagnosis, as we tried to envision what life would be like for our son, a boy with blood that does not clot.
We would soon meet with doctors, nurses, physical therapists, and social workers who would help us manage Bubba’s condition and our own fears, insecurities, and concerns. But prior to those incredibly helpful first meetings, we wondered exactly how we were supposed to raise a child who is different. We were desperate for someone to help us make sense of how we’d navigate the coming years.
As parents, we had to make a decision: either let Bubba play, or begin to guide his interests in a direction other than sports. When he started preschool in Tupelo, we learned that his teacher and her husband had lost a child at a young age. During one of our first discussions with this teacher, we found a common ground in our desire to make sure that Bubba was limited as little as possible by hemophilia. His teacher agreed fully, and told us that she and her husband had felt the same way about their son. I still remember her saying that she’d never regret the fact that they had always let him do as much as his medical condition would allow.
Overcoming our initial fears was not easy, nor would those fears disappear immediately when Bubba’s first soccer game ended without incident. So much of Bubba’s life is defined by the fact that he has hemophilia, but that does not have to be a bad thing. Playing soccer has been great for him, and a few people have even learned more about hemophilia because of his presence. The biggest leap wasn’t his to take; it was ours. Our decision to let him play sports ensures that we’ll always feel apprehension at game time, but it also means that our son will make valuable memories as a member of a team, and as a little kid having fun on the soccer field.
Derek lives in Saltillo, Mississippi, with his wife Ashley and their children Abbey and Bubba. He is executive director of two University of Mississippi regional campuses and assistant professor in the School of Education. Ashley is a fifth grade math teacher in the Tupelo Public School District.
©LA Kelley Communications, Inc. Reprinted with permission.
Publication: PEN 05.18
Column: As I See It