Originally published by Hemophilia News Today, March 25, 2020
Fear.
Millions of people are living with insane amounts of fear due to the outbreak of the COVID-19 virus. This includes fear that the food supply will be limited, fear of catching the virus, and fear of lost income. There is a lot for our world to fear. But there is one fear I have encountered in my life that surpasses anything this virus can bring to me: my eldest son’s hemophilia diagnosis.
When my first son, Julian, was born in 1996, I had no reason to think that he would be anything less than healthy. I prayed for 10 fingers and 10 toes. I never dreamed anything would be wrong.
After he was circumcised and wouldn’t stop bleeding, the doctors were extremely concerned because they couldn’t figure out why. The day the team of doctors entered my hospital room to tell me that my son had severe hemophilia A was a day that changed my life forever.
In those moments after the diagnosis, I was grief-stricken, and fear set into my soul. It’s not the kind of fear that you experience while watching a scary movie, but rather a fear that sends slow, creeping chills into your bones. It’s a fear that makes you numb and even desperate, because you aren’t dealing with something that you can change. And it is happening to your child, not to you.
In the early stages of Julian’s hemophilia diagnosis, I could only digest so much. The information was overwhelming and almost entirely clinical in nature, so it was easy to be fearful when I couldn’t understand what was happening to my son. Would he ever be able to ride a bike? Play sports? Have a normal life?
The questions ran through my mind constantly in those early months, but little by little, I began to seek answers. I spoke to people who were raising children with hemophilia and realized that I was not alone. Finally, fear had begun to lose its hold over my being.
Am I concerned about what is happening in our world? Absolutely. Am I fearful of what may happen? Definitely. I have stared fear in the face twice, when both of my sons were diagnosed with severe hemophilia. But I am grateful that fear did not get the best of my family and me.
We came out of those early days marked by fear of the unknown to a future filled with opportunity. I am optimistic that our world will be in a better place soon.
The fear of the unknown can be debilitating. May we all have hope for better days to come sooner rather than later.
