Originally published by Hemophilia News Today, March 27, 2024
I vividly remember the playground at Our Lady of Fatima Catholic School in Galena Park, Texas. The monkey bar dome was the place for the risk-takers, who climbed to the top and faced the ground. I preferred the swings, which catapulted the brave ones as they flew off in a competition to see who could land the farthest away. I, on the other hand, brought the swing to a stop before getting off.
But the seesaw was my favorite. Slivers of the old wood planks, painted red, would sometimes give my hands splinters, but I never stopped going up and down—up and down, up and down—and sometimes the down was a hard thud.
That playground is a metaphor for how we play out our lives. While some people climb the corporate ladder to gain power and control, others are content working without recognition. Regardless of a person’s station in life, though, we all have one thing in common: We all know ups and downs in finances, jobs, or relationships, and we all know many hard thuds may occur along the way.
Living with a chronic illness such as hemophilia with an inhibitor is filled with ups and downs. My youngest son, Caeleb, a senior in high school, has had his path derailed by the ups and downs of this condition.
I know that many living with hemophilia say they don’t experience limitations. In Caeleb’s case, however, those hard thuds are an unfortunate part of his journey.
Because of damage from bleeds, Caeleb has extremely painful joints. They cause him to rely on a wheelchair at school, as the distance between his classes is far. He recently took a trip to Washington, D.C., with his dad, knowing he’d need to walk a lot. His dad and I said he could postpone the trip, but Caeleb insisted on going and using the wheelchair when needed.
Instead of limitations, he found a way to experience freedom.
The up times of hemophilia have given Caeleb the opportunity to walk without issue. At the down times, however, he cannot get out of bed.
But he also has the in-between times. That’s where I find myself especially proud of Caeleb. He knows he could easily stay in bed, but he gets up, loads his wheelchair, and keeps moving forward. He often needs encouragement and prodding to get out of bed when he’s in pain, but I don’t want him to give in and feel his only option is to stay in bed. He struggles the most during those downs, and my heart breaks.
With his graduation near, Caeleb is preparing to venture into a new season of life. He understands how life with a bleeding disorder can sometimes dictate his day. When he moves into the world with the power to make choices regarding school and work, I hope he experiences freedom at the top of the seesaw.
