I know people who constantly run around to deliver their kids. Soccer, swimming, acting, tennis, dance … and they find little, if any, time for themselves. We lived in the city for the past six years, and running my kids to sporting events was not the norm. My oldest son, Julian, was in theater and music and would have concerts and shows to attend. My youngest, my mighty warrior Caeleb, participated in the Lego and chess club, band, and piano lessons. It sounds like a lot, but in comparison to others, it was not much at all. The truth is that if Caeleb had been able to be on a sports team, it would have been his first choice.
It wasn’t until fourth grade that life had some normalcy. Caeleb began to ride the bus to school and did not have bleeds on a weekly basis. We focused on schoolwork and music because, honestly, he had missed so much school in the previous years that he needed some regularity in his day-to-day socialization in the classroom. Things were great.
We are now winding down our first month in a new place in a small, West Texas town of about 1,400 people. Fortunately, we are only 8 miles away from a much larger city, so we do not feel isolated. But something amazing has happened this month. In a small town, the kids play outside. They walk down the street to play at each other’s homes, and I told Caeleb, “Be home before dark!” I feel like I am living in Mayberry. But that isn’t even the best part.
For the first time, Caeleb is out shooting hoops in the driveway. He’s never done this before. His ankle always kept him from being active the way he wanted to be, but even after he began to feel better and did not have bleeds, I worried that one would start. Why chance it with basketball? I encouraged him to play golf, swim, and focus on music. His new friends across the street are baseball boys. Every day, they are out front hitting and playing catch. Caeleb has never done this before. Now he can.
Many would fuss at me and tell me I was overprotective, but with the complications Caeleb has endured over the years, taking a calculated risk with his physical activities was not worth it. I never told him he couldn’t; he was just not around kids in the neighborhood who helped foster those activities. Now, he is exposed to some of the normal things kids do in the summer to pass the time. No electronics! That is amazing.
This new adventure called Hemlibra has been amazing. At times, I am scared to even talk about it because it is going so well. But for the first time in forever (cue “Frozen”) I see a future for my son that is free of complications. I know that there will be bleeds still to come, but it looks like they will be fewer and farther between.
It’s a new world for my warrior, and he is living it up.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.