With my son entering adulthood, we both face a big transition
Navigating a new chapter of Caeleb's hemophilia management
My youngest son, Caeleb, recently graduated from high school and, at 18, is legally recognized as an adult. This milestone brings a host of new responsibilities and rights: He can vote, buy and sell property, sue or be sued, and enter into binding contracts. Despite all our preparation for his coming of age, there’s still much to do in helping him transition into this new stage of life.
The most significant consideration for Caeleb as he enters adulthood is his health. As a young adult with severe hemophilia A with an inhibitor, he’ll transition from pediatric to adult care at the hemophilia treatment center. This shift involves more than a change in doctors; there’ll be new protocols, a different support system, and a greater emphasis on Caeleb’s independence in managing his health.
For years, I’ve been his primary caregiver. From managing joint bleeds to dealing with hospitalizations and a lack of mobility, I’ve had to learn how to navigate the complexities of hemophilia and an inhibitor. But as we move forward, I find myself in a new season of parent caregiving. While I’m proud of Caeleb’s progress and resilience, I also feel a bit lost. This transition is as much about my adaptation as it is about his.
My evolving role
Instead of accompanying Caeleb during his appointments, I’m no longer allowed in his exam room unless he asks me to be present. Of course, I completely understand his need for privacy, as there may be personal issues he wouldn’t want to discuss in front of me. If he chooses, he can add me to the list of those who can speak on his behalf. I hope he allows me to be a part of his team, because I fear he won’t speak up, ask questions, or advocate for himself.
Becoming an adult can be especially tricky if the young person isn’t moving away from home. While Caeleb will be responsible for managing his health and schoolwork, he must consider other responsibilities as he continues to live with us. Being a productive member of the household is nonnegotiable. Finding a way to engage him in adult tasks without nagging or treating him like a child is difficult and frustrating. I must be patient and understanding as Caeleb takes on these new responsibilities.
When a bleeding disorder is involved, the process of entering adulthood is even more complicated. Not only do I see my son’s role in his care changing, but my role is also evolving. I’m learning to offer support while allowing Caeleb to take the reins on his health management. It’s a delicate balance, but I’m committed to walking this path with him, ensuring he feels confident and empowered to face the challenges ahead.
I’m grateful that Caeleb will attend the University of New Mexico in the fall. He’ll commute during his freshman year, but I consider it a bonus year of living at home with support from me and his dad. Caeleb is more excited about college than I’d dreamed, given that his last two years of high school proved difficult because of his health.
Together we’ll navigate this new chapter, embracing the changes and celebrating the milestones. While there may be moments of uncertainty, I believe in Caeleb’s strength and our shared resilience. It’s a new season for both of us. With faith and determination, we’ll find our way.
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.
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