What being prepared means in my life as a hemophilia parent
The motto takes on new meaning when raising children with bleeding disorders
“Be prepared.” Scouts around the world have this motto ingrained in their hearts. While I was a Girl Scout for only a short time, this practice remains essential to me. I look ahead and consider the numerous ways a situation may manifest. As the mother of two sons with hemophilia, being prepared is a way of life.
In the early days of my oldest son, Julian, and his diagnosis, I felt like I walked on eggshells. Every bump and stumble sent my heart racing. I lived in a state of constant vigilance, always anticipating the next bleed, the next emergency room visit. I remember the panic that gripped me the first time I had to take Julian to the emergency room. I grabbed the single dose of factor in my fridge, packed toys and snacks in a bag, and off we went.
Being prepared that day made for a comfortable visit.
Years later, when my youngest son, Caeleb, was a toddler, complications from an inhibitor caused him to spend numerous days in the hospital. Because we lived several hours from the facility, planning was critical. Packing up clothes, snacks, and the comforts of home without knowing how long we’d be away was our new norm.
We can’t plan for everything
While I have a gift for thinking ahead and planning, there were several things I didn’t expect.
I wasn’t prepared for the emotional impact of having children with a bleeding disorder. Watching my sons struggle with infusions, joint bleeds, and missed school was almost too much to bear. I witnessed my children cry in pain, and I couldn’t take their pain away. I often felt that I lacked the tools to help Julian and Caeleb.
I didn’t expect to become a fierce advocate. I found the strength to ask questions and often pushed back on decisions that didn’t feel right for my sons. I learned to stand tall in the face of uncertainty, ask for second opinions, seek out specialists, and educate myself on the complexities of hemophilia. I became the voice my sons needed when they were too young or overwhelmed to speak up for themselves.
I wasn’t prepared for the strength I’d need to find within myself, but I discovered it in the most unexpected places. It came from sleepless nights spent researching treatments, countless conversations with doctors and nurses, and the deep love I have for my children. My heart may have been heavy with fear, but it was also filled with determination.
This journey taught me that preparing isn’t just about packing the right supplies or anticipating the physical difficulties. It’s about embracing the emotional and mental challenges of raising children who face unique health struggles. It’s about recognizing that while I can’t control everything, I can control how I respond — with love, faith, and unwavering support.
My all-encompassing love for my children fuels me. It’s the driving force behind every sleepless night, every difficult decision, and every moment of uncertainty. This love has made me stronger than I ever thought I could be. It keeps me going when the weight of it all feels like too much to carry.
I wasn’t prepared for how deeply I’d feel this love — so powerful that it anchors me through the most challenging days. It’s the kind of love that doesn’t just help me prepare, but also propels me forward, guiding me through the unknown.
This journey as a mother to children with hemophilia has taught me that preparation goes beyond what I can pack or plan for. It’s about preparing my heart to face whatever may come, knowing that, with love as my foundation, I can stand firm no matter what obstacles arise.
Ultimately, being prepared isn’t just a motto; it’s a way of life I’ve embraced because my sons deserve nothing less.
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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