Success in school looks different for my sons, who have hemophilia

I never understood why graduating from high school was such a big deal.

I grew up in a home of educators, and getting good grades and attending college were expected. Not pursuing higher education was never a consideration. I excelled academically and enjoyed my high school years; they were some of the best of my life. My next step was to go to college and earn a degree so I could begin my career.

Years later, I expected that my children would have the same experience. Didn’t everyone enjoy high school? It was an idyllic time for me, so I blamed myself when my sons struggled academically. What did I need to do differently? Why was it so difficult for them to succeed?

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Despite hemophilia and anxiety, my son keeps moving forward

The answer was right in front of me

My youngest son, Caeleb, is graduating from high school this year. Since pre-K, his academic pursuits have been plagued by complications from hemophilia with an inhibitor. While many young men and women with bleeding disorders are successful in school, others struggle. Caeleb is one of the latter.

For years, I expected my sons — including my oldest son, Julian, who also has hemophilia — to have the same drive my husband and I had in school. We both wanted to get straight A’s, participate in extracurricular activities, attend college, and start a family. I pushed my sons to study, do homework, and get involved in activities, but my insistence fell on deaf ears. The fights, screaming, crying, and slammed doors remain fresh in my mind. I cried in the shower many nights, wondering what I’d done wrong.

One day, the mother figure in my life, Minnie, reminded me of something. “Cazandra,” she said, “your boys have dealt with a medical condition that you don’t have. Of course they don’t have the same experience as you.” At that moment, my heart sank. How had I not seen that before?

Caeleb’s journey with hemophilia and an inhibitor has been arduous. He’s contended with physical pain, joint bleeds, mobility challenges, hundreds of school days missed, needles, ports, and approximately 15 surgeries, among other issues. Despite those challenges, he attempted to keep up in school, with much prodding from his father and me.

I grew up with parents who loved me and ensured I had everything I needed to succeed. My sons grew up with the same things — plus a bleeding disorder.

I’ve taught my boys not to use hemophilia as an excuse when life is complicated. That concept is so ingrained in my being that I’d forgotten how devastating hemophilia has been for Caeleb.

I couldn’t see what was right before my eyes.

Caeleb has been accepted to the University of New Mexico, where he wants to pursue a degree in digital arts. A few years ago, I couldn’t imagine that he’d go to college.

I look forward to watching Caeleb walk across the stage to receive his diploma. Seeing my son, who has depended on a wheelchair over the past year, walk on his own is breathtaking. He’ll have a slight limp and may need to use his cane, but it won’t take away from his accomplishment.

Now I understand why graduating from high school is a big deal.

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.