Help from the hemophilia community made me stronger, not weaker
After my sons' diagnosis, I wanted to be the mom who could handle everything
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Training for a marathon takes real commitment and determination. Athletes spend weeks or even months getting ready, following a schedule of running and rest days. Crossing the finish line and achieving their goal is incredibly rewarding, as the challenge was their choice.
Raising two sons with severe hemophilia A with inhibitors was never a challenge I wanted. Their diagnosis shocked me, but once my anger faded, I did what I knew best and began learning everything I could about hemophilia and inhibitors. I told myself I would do everything “right” to give my sons the best life possible.
I soon learned there is no single right way to raise children with a bleeding disorder. What helps one child might not help another, even if they have the same diagnosis. I kept reading and attending conferences and webinars. My husband and I chose to learn as much as we could and figure things out together.
Soon, though, I realized we needed help. With no known family history of hemophilia, we felt lost. Our local hemophilia treatment center (HTC) taught us the clinical basics, but something was still missing. I needed to connect with other parents raising children with a bleeding disorder. Admitting this made me uncomfortable because it meant asking for help.
When I met people in the bleeding disorders community, I felt a huge weight lifted from my shoulders. This was what I needed. Hearing stories from other parents in similar situations comforted me. Comfort might sound like a strange word, but it meant others understood me and had also been through those early days.
I thought asking for help meant I was admitting defeat. It made me feel like I was failing my children. But sometimes, asking for help is what keeps us moving forward.
Last April, a college student was about 200 strides from the finish line of the Boston Marathon when he collapsed. Most runners kept going, but then something amazing happened: Two runners stopped and helped the young man, carrying him across the finish line. The men were all from different countries, but that didn’t stop them from sharing their hearts. The two helpers gave up their chance at a faster finish for something more important: helping a fellow runner achieve his goal.
Other parents in the bleeding disorders community carried me in a similar way. They had already walked the path I was just starting on and shared their experiences, offered encouragement, and understood the fear that came with every new diagnosis, bleed, or medical decision. Their help didn’t make me weaker. It made me stronger.
I still wanted to be the mom who could handle everything, who knew what to do, and who could protect her children. But I learned that strength isn’t always about doing it all yourself. Sometimes, strength means admitting you don’t know, reaching out, and letting someone else walk or run beside you.
If you’re just starting out with a little one and a new diagnosis, remember this: The finish line may still be ahead, but you do not have to cross it alone.
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.
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