The extra cargo of college life that’s putting my son in the driver’s seat

“Long-sleeved shirts,” I say to my younger son, Caeleb, as we run down the list of things he will need for his dorm room.

“Check,” he replies.

“How about pants, deodorant, toothbrush, wheelchair, cane, Hemlibra [emicizumab-kxwh]?” He confirms he has everything packed and ready to go.

We continue packing, but my eyes can’t help but return to the top of the list. A wheelchair? A cane? A bicycle? Medication for clotting? I wonder how many students returning to campus for the spring semester have to pack mobility aids. My heart sinks a little.

I am grateful that Caeleb can live on campus on his own, but to navigate his way around the campus and get to his classes, he needs assistance. Due to constant bleeding episodes when he was younger, he no longer has cartilage in his right knee and ankle. Caeleb can walk short distances without too much pain, but he can’t walk from his dorm room to a classroom across the campus. When he tries to go too far, he experiences pain that makes it impossible for him to support himself. He must depend on something to keep him mobile.

During the fall semester, Caeleb rode a bicycle. He used to go everywhere around the campus, and even rode it to doctor appointments and other places he needed to go. With the pedals, he doesn’t need to apply as much pressure on his knees and ankles. But if his right knee and ankle aren’t up to pedaling a bike, Caeleb can use a wheelchair and a cane.

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Taking the reins

I often worry about how Caeleb manages his pain without his mom and dad to help him, but he is very good at determining the help he needs. He knows when the pain makes him unable to do anything except sit in a wheelchair. While he knows he can call home if he needs anything, I am proud of him and the way he takes the reins on his own healthcare. He sits in the driver’s seat and manages his medical needs independently.

He still asks questions of his mom and dad, but he proves to us repeatedly that he has what it takes to manage his bleeding disorder.

After we finish the checklist, we load the car and make the three-hour drive to the University of New Mexico.

Once we are inside his dorm room, I start planning where to put things. Caeleb stops me.

“Dad, I’ve got this,” he tells me.

I look at him, preparing to plead my case. I want to tell him I only want to help him, but I know that letting him stand on his own means he must make his own decisions.

He finds a good space for his wheelchair, his cane, and his bike. I smile and affirm his choices. Before I leave, I hug my mighty son, tell him I love him, and say I know this semester will be more successful than the last one.

I smile as I drive away. Caeleb has everything he needs to be successful. I just need to trust him and know that he listened to the many lessons his mom and I taught him.

Here’s to a great semester, my amazing son.

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 consult your physician or another qualified healthcare 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.