My son with hemophilia is worried about living independently

As I sat in my office chair working on bills and other household needs this past Saturday afternoon, my youngest son, Caeleb, approached me and asked if we could talk for a few minutes. His mannerisms told me he needed to share something dire, so I stopped typing, turned to him, and looked him right in the eyes.

I must admit that I felt a little anxious about this conversation. What did he need to get off his chest? Was something wrong at college? This moment underscored the importance of our open communication, a value I’ve always tried to instill in our family.

I quieted my mind to focus on him as he began murmuring. I encouraged him to speak up, seeing his difficulty conveying what bothered him. While he searched for words, I tried to stay calm to help him say what he needed to share with me. No matter what I did, he still struggled to find the right words.

After a short moment that seemed like an eternity, Caeleb said, “Dad, I know I must live in a dormitory on campus starting in the fall. While I’m excited about being on my own, I’m also a little scared about messing up and not taking care of myself. What happens if I miss my weekly dose of Hemlibra [emicizumab-kxwh] and have a spontaneous joint bleed? What happens if I have an emergency? Who will take me to the hospital?”

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I paused for a minute to think about his concerns. I inwardly chastised myself for not asking him if he had any worries about living independently for the first time. I remember when I moved out of my home. I couldn’t wait to leave and see the world without parental interference.

But my family home and life were much different from Caeleb’s. He has hemophilia, a condition I’d never heard of until my oldest son was diagnosed. With Caeleb, it’s led to numerous hospitalizations and surgeries — experiences I’ll never fully comprehend.

Caeleb experienced a slew of complications related to his bleeding disorder. In addition to his many surgeries, he struggled through many hospitalizations that lasted for weeks, sometimes months, to stop his internal bleeding. As a result, my son was constantly playing catch-up in his classes because he missed too many days of school. He also missed opportunities to develop social skills with kids his age. Hemophilia took a tremendous toll — not only on his body, but also his psyche.

Fostering my son’s independence

As we continued our conversation, I looked into his beautiful green eyes and said, “Oh, my buddy. You must deal with many things I never dreamed of when I was your age. I don’t blame you for struggling at times.

“Your school, the University of New Mexico, sits across the street from the hospital that houses the hemophilia treatment center,” I said. “Let some of your friends know about your medical condition so they can help in an emergency. Also, always wear a medical ID bracelet or necklace listing your diagnosis and the phone number of the treatment center. This item is crucial in the event you can’t communicate with those providing initial medical treatment.

“These strategies, along with the support of our extended community, will empower you to manage your condition independently, Caeleb.”

Caeleb said, “I know those things, Dad. I feel nervous because you and Mom won’t be with me when I experience something.”

I put my hand on his shoulder and said, “I know what it feels like to be nervous, but you know we’re only a phone call away. Yes, our new home will indeed be 200 miles away from your school, but we have a lot of friends who can help until we get there. I promise everything will work out fine.” He thanked me for listening to him.

After Caeleb left my office, I attempted to return to work, but it proved useless. On the one hand, I was grateful that my boy felt safe enough to have a crucial conversation with me. On the other hand, I hurt for him. Although I wanted to do something to make his life easier, I realized he needed to find ways to live without my constant supervision and care.

Letting go is hard, but the joy when our loved ones realize they can find the resources they need on their own is more precious than gold.

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.