Helping my youngest son plan for a dorm after leaving home

“OK, son. It’s time to get out of bed and face the day.”

“But Dad, my leg hurts really bad. I don’t think I can go to school today.”

Many days when my youngest son, Caeleb, was in high school, he and I began our day with my boy admitting defeat. Try as I might, I could not get him out of bed. I lived in fear during his senior year that he wouldn’t receive his high school diploma. My anxiety grew with each day as I prepared myself for my son’s inability to overcome his pain.

Pain management became a key phrase in our home when my son attended after-school band practice in his first year of high school. One day, he called home in tears, complaining that his knee hurt too badly and that he couldn’t continue marching. This incident led to the realization that Caeleb, who has hemophilia, had severe damage in his right knee and ankle. Years of numerous internal bleeding episodes in his joints had eroded most of the cartilage.

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Throughout high school, Caeleb demonstrated remarkable courage and resilience in learning to manage his place in the world despite the pain. His determination to push through the challenges was a source of inspiration for us. As he prepares to move into a university dorm room in the fall, we hope he’ll continue to face his pain head-on and not let it hinder his academic or professional pursuits. We’ve exhausted every possible avenue to help him overcome his chronic pain, and his strength gives us confidence in his ability to navigate his future.

Luckily, we found a physical therapy clinic called Paradigm Physical Therapy to help him learn to navigate life with pain. The trained staff is incredible and offers a way to help Caeleb as he continues to grow into his adult self. Physical therapists have given my son valuable tools on how to move through the world when his knee and ankle didn’t feel their best. I appreciated their wisdom as they pushed my boy as far as he could go. The staff always complimented my son, offering support and encouragement as he reached different mobility goals.

At home, we consulted with our hemophilia treatment center concerning Caeleb’s struggles with chronic pain, as it limited his mobility. The medical team, especially his hematologist, played a crucial role in his care. They wrote prescriptions for a wheelchair when the pain got unbearable. Sometimes, when he needed less assistance and could put weight on his injured ankle and/or knee, he learned how to use a walking cane. Their support and guidance were vital to my son’s continuous recovery from bleeding episodes.

Learning is part of college

While he has some of the best treatment options available to him, my son still struggles with overcoming pain and honoring his scheduled commitments. As he graduated high school and entered college, his ability to overcome many rough patches improved drastically. Yes, he uses a cane or a wheelchair at times when the pain proves difficult. He continues to take the initiative to work through difficult days.

I fear the moments when his knee and/or ankle hurt will hurt while he’s living in a dorm. Will he take over the role of working through his pain? I fear that his grades may decline if he chooses to stay in bed. I know he’s 19 years old, and I need to let go and allow him to take ownership of his life. Maybe that’s more about me letting go and allowing him to chart his path. But I also hope that he’ll find the strength to manage his pain and continue his journey.

While I cannot knock on his door as easily once he moves away, I still admit that it’s hard to let Caeleb take care of his own medical needs. Ultimately, he needs to discover his path while equipped with the lessons he learned while living at home. I want to protect my boy and keep him safe, but I know that smothering my son doesn’t help him find his path.

It’s a journey of trust, hope, and heartache. I still struggle with the reality that I must allow my boy to make his own decisions. This work is gut-wrenching and not for the faint of heart. My task requires trust in my boy’s ability to manage his life. Ultimately, I must realize that my greatest wish is to give Caeleb wings so he can fly.

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.