My son is looking to the future, despite the setbacks of hemophilia

My youngest son, Caeleb, is completing his junior year of high school. He’s excited about his senior year and his plans for getting in shape. But there’s something else he’s even more enthusiastic about.

Caeleb is beginning to think about life after high school. It may seem late for him to start planning for his future, but my son’s life has been challenging. Due to his severe hemophilia A with an inhibitor, Caeleb experienced years of bleeding episodes that have resulted in numerous complications, including chronic pain and damaged joints. At times, I’ve even had difficulty imagining how Caeleb will get around in the world. His ankle and knee cause him great pain, and there are days and weeks when he’s unable to walk. We haven’t been sure what his life might look like after graduation.

But as Caeleb continues to mature, he’s begun opening his eyes and thinking about what lies ahead. His main concern is what direction to take his education, though now he finds the choices and options overwhelming.

I’m excited for my son to start branching out, but I know it will bring physical, educational, and emotional setbacks. I equate this struggle to building up an exercise regimen.

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Learning to take risks

When you’re new to exercise, you may start in a swimming pool, where the water can provide support and buoyancy. It can also be safer in some ways, as you’re far less likely to tumble and hurt your knee or fall on your face. My son has been exercising in the pool, so to speak, since he was born.

Under the protection of my husband and me, Caeleb’s needs have always been met, even in the worst of times. Because he’s faced medical issues above and beyond what most people will ever endure, Caeleb has been safeguarded, receiving help whenever he needs it.

But during his senior year, I want Caeleb to “get out of the pool” occasionally and start taking some risks. For example, while he talks with online friends daily, I’d like to see him expand his social skills by making friends in person. Perhaps he could even take an art class or start exercising more often.

Exercising on land can involve more risks; it’s easy to get skinned knees, broken bones, cuts, scrapes, and bruises. But greater risk can lead to greater reward.

I wish I could tell Caeleb that life after high school will be easy. It’s difficult to acknowledge that my son, who’s already endured more physical pain than many adults, will face more pain in his lifetime.

Not only will the aftermath of hemophilia with an inhibitor be a constant, but I’m also sure he’ll experience other forms of pain, such as a broken heart, a challenging loss, or difficulty at a new job. Life won’t get easier, but there are beautiful memories to be made, and every type of pain can teach a lesson.

I’m sure Caeleb will want to jump back into the safety of the swimming pool on occasion, but moving on to dry land and taking risks is where his future lies.

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, and are intended to spark discussion about issues pertaining to hemophilia.