Living with hemophilia taught my son to always have a plan B

We received some unexpected news this week from the University of New Mexico, where our youngest son, Caeleb, is a rising sophomore. Although we had thought he’d be able to move into a dormitory on campus this fall, it appears he’s still on a waiting list, and the chances of him finding a dorm aren’t looking good. Of course, there’s always a chance that the school’s housing department will call him, but as the summer progresses, things are not looking promising.

We are holding out a little bit of hope, but we’ve also created a plan B. If Caeleb can’t live in a dormitory in Albuquerque, he will stay with us at our home in Las Cruces this semester, attend the local community college, and complete the necessary academic requirements to transfer to the university in the spring, should the housing situation change. He checks his email every day to see if something has opened up. For now, the only thing keeping him from attending the school of his choice is the lack of adequate housing on campus.

While he would rather be at the university in Albuquerque, he understands that he cannot seek off-campus housing. He needs to live on campus because of the pain he sometimes suffers from past complications related to hemophilia. Numerous episodes of spontaneous internal bleeding in his right knee and ankle left Caeleb with little to no cartilage, which often prevents him from walking without assistance. Most of the time, he uses a walking stick, but when the discomfort becomes too great to stand, he uses a wheelchair.

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Caeleb is a fierce warrior against the lingering effects of his internal bleeding. He learned very early to always have a plan B in the event of unexpected challenges directly related to his bleeding disorder. Over time, he learned how to call his hematologist to discuss the options available to him when unforeseen circumstances related to hemophilia arose. He discusses his feelings with his medical team, talks to his mom and me, and decides on the next course of action.

I watch my young man do the best he can in any situation, and I am proud of the choices he makes to equip himself to reach his goals. I must admit that a part of me wants to protect him like I did when he was younger. I feel like telling him, “Don’t worry about anything, son. I have everything under control.” I then imagine myself being able to convince the relevant authorities to change their policies and allow my son to stay in a dormitory.

But reality reminds me that he must advocate for himself. I no longer have the power to fix things for him. He must find solutions to his problems. Often, he must fall back to his plan B because the initial solution is unattainable. He does not have to give up on his initial ideas, but moving forward with an alternative proves much better than coming to a standstill.

I look at Caeleb, and a part of me is sad. I can see the disappointment in his eyes, and I want to say, “Hey, bud, let me shoulder this burden for you.” When I want to step in and take control, I must remember he is a grown adult. It is time for him to fight his own battles. I take a step back and let him find his solutions. My wife and I raised him to search for answers when he cannot discover a quick resolution to his problems.

As our family ate lunch at our dining table the other day, Caeleb brought up the difficulties he was facing regarding his living arrangements. He said, “Guys, I know that I will most likely stay in Las Cruces for the fall semester. I will continue to fight and hope that something will open up. If it doesn’t, I have a plan B. I am disappointed, but I know that when I return to Albuquerque, I will have several courses that I won’t have to take. That’s a good thing.” He also shared his feelings of disappointment and frustration, as well as his determination to make the best of the situation.

My wife and I told him that he is moving forward and still headed in the right direction. We reminded him how proud we are of the man he continues to be. I said, “In a year, this will be a blip on the radar screen. I think you will be glad that you completed some necessary courses, allowing you to focus on your major. Hold on, son. You’ve got this. I love you.”

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.