Managing fear while raising a child with hemophilia
Over time, I've learned not to let the 'what ifs' control my life
Raising two sons with severe hemophilia A has been a journey filled with ups and downs, joys and fears.
I lived in constant fear when my first son, Julian, was a baby. Not only was I concerned about feedings, diaper changes, and making sure he was breathing in the middle of the night, but the “what ifs” of a bleeding disorder were debilitating. What if he fell and started bleeding? What if he had a spontaneous bleed that I couldn’t detect? What if he needed emergency care and I couldn’t get to the hospital quickly enough? What if he had an internal bleed in his brain?
These thoughts consumed my mind and cast a shadow over the joys of having a new baby.
Caring for a newborn with a rare genetic bleeding disorder felt like living with a ticking time bomb. Unsure of what life would look like for my son, I took on the weight of the what-ifs that plagued me.
Finding joy amid fear
Every day, the what-ifs presented new challenges. For example, watching a baby roll over for the first time is exciting. But when a baby with hemophilia rolls over onto their toys, it often leaves significant bruising on their torso. These bruises were upsetting to see. And when we were out in public and Julian’s legs or arms were riddled with bruises, people stared. I’m sure some considered calling the authorities, as I’ve heard stories of bleeding disorder parents getting home inspections from child welfare workers.
While I lived with heightened fear for Julian, seeing his resilience helped me find joy instead. Julian crawled despite bruises on his legs. He laughed and giggled, and continued to be curious and explore. It was a joy watching my son discover the world.
I look back to the early days of his diagnosis and understand the depth of my fears. As time passed and I learned more about hemophilia, I was able to make peace with this chronic condition. Even though Julian is now 27 years old, I admit I still have fears. The problem is that I sometimes still live in the land of what-ifs, even though both of my sons are adults.
While my fear has never disappeared, it has become more manageable. Fortunately, Julian’s hemophilia journey has been relatively smooth. He is a thriving adult pursuing his dreams of acting and singing. While the what-ifs remain, they no longer control my life.
My faith is essential to managing my fear. Faith plays a crucial role in my life, especially in navigating the emotional and psychological aspects of raising children with hemophilia. I found strength in prayer and believing we weren’t alone on this journey. Embracing the sacredness of our path helped transform fear into faith, worry into resilience, and isolation into a deeper connection with those who understood our struggles.
In raising my sons, I’ve learned that the challenges and fears brought on by hemophilia are just one part of our story. Our lives are filled with joy, laughter, and accomplishments. Through faith and resilience, we’ve learned to navigate the complexities of this condition. Watching my sons grow, thrive, and pursue their passions reminds me daily that there is always room for hope and happiness, even in the presence of fear.
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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