I try to focus on the positive, but hemophilia makes it difficult
A mother shares her journey from negativity to resilience
When I was a young woman, I was very negative. I would look ahead to a situation and immediately imagine the possible pitfalls. I never considered everything would work according to plan. When plans went better than expected, it was a bonus. As a former glass-half-empty kind of person, I now try to focus on first seeing the good in every situation. But I’m not always successful.
My new approach of positive thinking was tested when I became a mom and learned that my son had hemophilia. I never dreamed I’d have a child with a chronic illness. Ten years later, having a second son with hemophilia was devastating.
I’m glad I didn’t know back then that I was a hemophilia carrier. If I had, my pregnancies might’ve been filled with fear and doubt instead of joy for the new life to come. I’d simply hoped for my sons to have 10 fingers and 10 toes.
Another test
Currently, I’m in a negative place. Actually, I’m pretty angry.
My youngest son, Caeleb, is a senior in high school. For me, senior year was idyllic, involving parties, decorating floats for homecoming, dances, pizza, band trips, and football games. I wanted the same for my sons.
But when Caeleb hears me talk about high school, he cocks his head to the side in disbelief. Instead of driving, going to parties, and hanging out with friends, his senior year has been filled with physical pain, an ankle surgery, and numerous missed days of school because of lingering complications of his joint bleeds. Caeleb is having a difficult time looking to the future.
My oldest son, Julian, struggled with school as well. Bullies in middle and high school hurt him physically and emotionally. There was a period when he didn’t speak about school because it was too painful. He eventually earned his bachelor’s degree, but it was a difficult journey.
When Julian was diagnosed with severe hemophilia A in 1996, people in the community warned me not to be overprotective. There are some moms who keep such a tight rein on their children with bleeding disorders that the kids end up not participating in extracurricular activities. I vowed not to be one of those moms.
But what’s disappointing is that none of Caeleb’s bleeds were even caused by his participation in activities. The bleeds into his right knee and ankle were often spontaneous. There was nothing in his lifestyle for him to adjust. And now, after years of bleeds, hemophilia has taken over his life … again.
I do my best to focus on the positive for my sons. I feel like I need to be the one who holds everything together. I need to be a Spartan cheerleader, but I just don’t have the “perfect cheer” right now. Caeleb is suffering the repercussions of years of bleeds, and my heart aches for him.
Looking to the future is overwhelming. Instead of lining up the possibilities of what could go wrong, it’s time to change my thinking. The tricky part is that while I grieve, I must be the voice that pushes and encourages him.
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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