With a rare disease, a child’s road can diverge from a parent’s

I spent some of the best years of my life at Galena Park High School in Texas. I participated in clubs only if they didn’t interfere with my work with band, and my grades were excellent. When I met my now husband in college, our drive to be our best was a common thread in our relationship. When I dreamed about raising a family, I hoped my children would have the same wonderful school experiences. My husband and I did great in school, so surely, I thought, our children would also excel.

With the birth of my first son, Julian, hemophilia came into my family. I felt like every dream I had for my son was shattered with his diagnosis. Eventually, realizing that hemophilia wasn’t a death sentence, I looked at Julian’s future. He could have it all, I believed, even with a bleeding disorder. I was so relieved that his health wouldn’t limit him.

Julian’s move with us to New Mexico in fifth grade was difficult, made worse because he never spoke to me or my husband about his struggles. He endured relentless bullying. He was physically assaulted in high school, with injuries that required extra infusions. It was a frightening time.

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Julian’s academic career was marred by bullying that began in elementary school. His bleeding disorder didn’t help, as his peers often saw him as different — and kids often don’t appreciate difference. I was disappointed because his school experience wasn’t like mine; instead, it was a constant struggle.

When my youngest son, Caeleb, was born and diagnosed with severe hemophilia A, I knew his medical condition would be challenging. But surely, I thought, he wouldn’t have as many academic problems. I never dreamed that Caeleb would suffer complications from an inhibitor, which often kept him out of school and in the hospital. Thus, academics became a struggle for him as well.

I’ve learned so much from my children. First, they’re strong men. A severe bleeding disorder taught them to be resilient in the face of adversity at a young age. Second, they learned a language their school friends never knew, with words like infusions, factor, inhibitors, half-life, and target joints. Finally, they excel at classes in living with a rare disease, though their traditional academics may suffer.

Julian recently graduated college and is looking forward to his future. He sings and acts (and is getting paid to do it!), and the world is his oyster. Caeleb is preparing for his senior year in high school, and I pray that his final year will be his best.

Children don’t always follow in the footsteps of their parents. Watching them make mistakes is difficult, and as a parent, I realize such mistakes are often a challenging, painful experience. Yet when a rare, chronic condition is part of a person’s life, everything else pales in comparison.

Yes, there are some aspects of my sons’ lives that aren’t exactly what I’d hoped. Instead of thinking about the what-ifs, I choose to celebrate my sons. I honor their beautiful souls and their humor through the difficult times.

Most of all, I thank God that I’m blessed with these two amazing men. They’ve taught me how to have compassion for those who are hurting, to advocate for what is right, and, most important, to love with my whole being.

The experiences my sons have endured make them who they are today.

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.