Hard lessons in the leap to a more independent life
As his second year of college begins, my youngest son faces disappointment
Many of my recent columns have focused on my youngest son, Caeleb, and his transition into adulthood. I’ve shared how we’ve empowered him to live his best life, including lessons on taking responsibility for himself as he navigates the world. He must take the baton that we’ve handed him.
We hope his experiences advocating for himself as a person with hemophilia continue growing as he discovers his increased independence. We started preparing him to leave the nest and fly on his own a long time ago.
As Caeleb’s adventure into the world of “adulting” shifts into high gear (as a second-year student, he’s been planning to live in a college dorm for the fall semester), he faces challenges that many young adults his age don’t have to face. Despite that, he’s shown remarkable resilience.
My son has hemophilia A and has experienced many internal joint bleeds in his young life. Because of his many struggles with his bleeding disorder, he must address issues related to joint damage. These difficulties often create mobility problems, frequently leaving him dependent on a walking cane or wheelchair.
Then came his bad news.
Caeleb recently received a letter from his college, the University of New Mexico, stating that no dorm rooms were available for him for the next semester, despite an earlier letter indicating that he’d get one. He looked at me with tears in his eyes and said, “This isn’t fair. I did everything I was supposed to do.”
Exploring the options
I hugged him and told him that I felt his pain. I told him that he needed to write to his campus Accessibility Resource Center (ARC) representative and ask for help. The ARC, a vital support system for students with disabilities, could potentially speak on his behalf. Since Caeleb doesn’t drive, getting an off-campus apartment won’t work.
We also discussed options if he can’t stay on campus. I told him he could move to Las Cruces with his mom and me — we’re each taking a new job in this new city this summer — and register at a community college until the spring semester. He could even investigate New Mexico State University, which is in Las Cruces. Maybe dorm rooms would be available there in fall.
As I talked with Caeleb, I felt anxious and frustrated. My first instinct was to tell him not to worry. Thankfully, reason took over, and I asked my son what he wanted to do about the situation. He said he wanted to talk to his ARC representative and find a place to live in Albuquerque, home of his university. I reminded him that he had to do the legwork and fight for himself.
Letting him fly alone proved to be one of the most challenging things I’ve had to do. It wasn’t easy to let go of the reins and let him fight his own battles. He needs to depend on the strategies his mother and I taught him when looking for a solution. Whether it’s an issue related to his bleeding disorder or advocating for himself in the face of life’s obstacles, Caeleb must stand on his own two feet and find the best solution for himself.
Of course, Caeleb will never be truly alone. He’s enveloped in the unwavering support of friends and family members who surround him with love and understanding. As his parents, we stand firmly behind him, providing the constant support that gives him the reassurance and comfort he needs as he navigates this challenging journey. We allow him to tell us which direction he chooses to go. This adventure proves hard for loving parents, as we believe we know which paths are best.
For now, I’m listening to what Caeleb feels is the right choice. I do the oldest trick in the world that parents have done since the dawn of time: I bite my tongue and let him lead the way. He knows beyond a shadow of a doubt that his parents will stand with him through thick and thin. Together, my wife and I say, “Lead the way, Caeleb. We’ll follow you everywhere and support you with all our love. We’re your greatest champions.”
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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