Originally published on Hemophilia News Today, February 26, 2020
Hemophilia has been a gift.
Let me explain. I know some people will struggle to understand my viewpoint. I realize that they have suffered great physical and emotional pain because of this bleeding disorder. Some have lost relationships, jobs, and mobility, and have a reduced quality of life. I get it. I truly do.
I understand the worst of what hemophilia can bring to a person’s life. My older brother lived for only five days due to complications from a head bleed. I see my 14-year-old son trying to cope with chronic pain as he uses a crutch on most days. So how can I utter the words “gift” and “hemophilia” in the same breath?
It’s all about perspective. Just as each of my sons said to me when they were about 8 years old, “I hate hemophilia,” I have hated it, too. I look back at my journey as a caregiver of someone with hemophilia from the other side: a place of calm, with fewer infusions or injections, and less bleeding. I can breathe deeply and see the gift of my experience.
I recognize how my life changed when I took a job that gave me opportunities to advocate and encourage others in the bleeding disorders community. I left a stable career and stepped into a position of uncertainty. I had no guarantees that the job would last, but I took a chance, and it changed the trajectory of my life.
As an advocate for and member of the bleeding disorders community, I have traveled across the country to meetings, workshops, and events. My role brought me in contact with people I never would have met had it not been for hemophilia. Some of them are now my closest friends.
During the times when hemophilia was rearing its ugly head and causing my sons pain, I couldn’t see any positive side to it. In those moments it took everything I had to focus on what needed to be done for my sons. I lived moment by moment and breath by breath.
I am grateful to be in a place where I can find the good that hemophilia has brought to my life. I can’t change the diagnoses or take away the nights of pain that my sons endured or the damage to their joints. I can’t take away the thousands of infusions and needles and the limitations of living with a bleeding disorder. But I can be hopeful. I will be a mom who strives to see the best despite the circumstances. And I also hope that my sons will have open minds and be able to recognize the positives in every situation.
