Tending a fire offers lessons for families new to hemophilia
Life's campfire teaches how to balance cautious isolation and warm connections
I love sitting by a campfire. Stories and laughter are shared, s’mores and hot dogs are roasted, and memories are made. Tending the fire to keep the flames burning requires constant attention, and it takes my mind off my troubles. Watching the flames leap and dance is mesmerizing.
However, the summer season is riddled with wildfires that can consume, destroy, and change lives forever. Something that can be beautiful and hypnotic can easily become a nightmare.
Raising a child with a rare condition such as hemophilia is laden with emotions. The first days and weeks of a diagnosis may be riddled with anger, fear, guilt, and grief. The emotional energy to anticipate what’s to come can be consuming, and then the caregiver has nothing left.
The beginning of my journey with a newborn was not what I expected. The fire was out of control.
Raising a child who’s living with hemophilia can be isolating, especially with the increased emotional energy spent figuring out life. No one will understand, we think. Who do I call for help? I’m alone.
Over time, we learn to manage the condition, find joy in small victories, and build a support system. Friends, family, and medical professionals become allies. Each step forward, no matter how small, is a testament to resilience, dedication, and love.
The isolation eventually begins to dissipate as connections are made with others who are raising children with hemophilia. Between local chapter gatherings, support groups, online communities, and national organizations, a network of people is ready to help and share experiences.
Learning the right balance
When my oldest son, Julian, was a newborn, I remember staying home unless I went to work or day care. Home was a sanctuary; I could lock out the rest of the world. I felt safe.
One day I was invited to a friend’s home for an afternoon pool party. I thanked her and declined. There was too much to get ready, with bottles, diapers, and a box of factor in case of a bleed — which hadn’t yet happened. It was just too much. Going out was scary because I saw everything as a threat that could cause Julian to bleed.
Fortunately, my friend came over unannounced, packed the diaper bag and factor, and insisted we come to the party. It was a turning point because I realized how isolated I’d become. I was missing out on the joy of my newborn son.
Attending that pool party was a revelation. Surrounded by friends, I saw Julian’s smiles and laughter and realized that my fears, however valid, shouldn’t rob us of precious moments. We played, laughed, and shared stories, and I felt a weight lift from my shoulders. I began to understand that while Julian’s condition required vigilance, it shouldn’t define our lives.
This experience taught me the importance of balance. While being prepared and cautious is essential, embracing life and creating joyful memories are equally crucial. Julian deserved a childhood filled with experiences, not one overshadowed by fear and controlled by hemophilia.
Reaching out for support and allowing others to help was pivotal in overcoming isolation. I started attending chapter meetings and connecting with other parents who understood our journey. Sharing our stories, exchanging tips, and being there for one another made a difference.
Raising a child with hemophilia is a journey of highs and lows. But with a strong support system and a willingness to face fears, it’s possible to find joy, resilience, and a sense of community. Like tending a campfire, it requires attention, care, and the understanding that while the flames may sometimes threaten to burn out of control, they can also provide warmth, light, and moments of profound beauty.
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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