Parenting a Child With a Rare Condition Is Different and Spectacular

As an expectant mother, I dreamed about my son’s future. I imagined the sound of his voice, the daily rituals we would create together, and the way I’d simply hold and love him with every part of my being.

When my first son, Julian, came into the world, my dreams became reality as I held this amazing little creature in my arms. I continued to fantasize and imagine the future that lay before him. When he was diagnosed with severe hemophilia two days after his birth, the dreams and plans I had for Julian disappeared in an instant. A bright future with a beautiful newborn son turned into a time of confusion, anger, and fear.

Looking back almost 25 years later, I still grieve those early years of Julian’s childhood. While I embraced being a new mom with a beautiful baby boy, I allowed the uncertainty of hemophilia to be ever-present in my life. Instead of soaking in the priceless moments of having a baby, I often let fear and doubt take control and steal precious time with my son.

Yes, a rare diagnosis should be highly important in the life of a family with a newly diagnosed child, but I allowed the fear of what might happen to keep me from venturing out of my home unless absolutely necessary. I was terrified. A million different scenarios played in my mind.

What if I had an accident and Julian was injured and would not stop bleeding? Would I be able to get to the hospital in time? What if something happened to me and Julian was alone? Would the paramedics know to look for his medical alert bracelet? These are a few of the questions that kept me from venturing out of my home.

Fortunately, my family pushed me to leave the house with Julian to visit their homes, go to the park, and even attend church. Once I began to get out into the world, I realized that time had not stopped because my son had a medical condition. I simply needed to find a way to move in the world that would keep him safe and allow me to let go of my grief.

I grieved the loss of the journey I planned to take with my son. It was to be a journey that did not include a rare bleeding disorder. I allowed that grief to take over my soul, and I missed moments because of this sadness.

It took me a few years to realize that while I was traveling a different road than I had planned, the journey wouldn’t be any less spectacular.

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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.