I had the amazing privilege of speaking to the women of the Gateway and Midwest hemophilia associations at their annual retreat for women with bleeding disorders. There is just something about folks in the Midwest. They are kindhearted, compassionate, and tons of fun. Every time I speak in that part of the country, I come away refreshed, renewed, and excited.
Regardless of where I am speaking in the country, I hear familiar themes from women as they travel the road of living with a bleeding disorder. But this time, I heard some words that struck my heart differently. A woman was recounting the diagnosis of her son’s hemophilia and she said, as her voice began to crack, that she wondered what sin she had committed for this to have happened to her son. She quickly followed up with a comment that told the audience that she knew this thinking was irrational, but even years after her son’s diagnosis, vocalizing her fears brought on deep emotions from the past.
My oldest son was diagnosed with severe hemophilia over 21 years ago. My youngest son had the same diagnosis over 12 years ago. I wish I could say that the memories of hearing the words, “Your son has hemophilia,” have disappeared. Unfortunately, each instance is ingrained in my soul as if they happened moments ago. The antiseptic smells of the room, the feel of the stiff hospital gown I wore, playing over in my mind my doctor sitting on the side of my bed and holding my hand.
The memories are far away and yet immediately with me, all in an instant. And immediately in my mind, upon my first son’s diagnosis, I began to think, “What did I do wrong? I drank a Diet Coke, and it had caffeine! What did I eat? What did I do?” I just wanted to know the cause of the diagnosis, and when I found out that hemophilia was a genetic disorder passed on by the mother, I had never felt the weight of guilt, shame, grief, and despair like I have in both moments for each of my son’s diagnosis.
What was my sin? What did I do that was so bad to cause my son to suffer? What did I do?
As a mother, I get it. I want to know why, and when there is no answer, I will keep asking and go to places I should not venture. As moms of children with a bleeding disorder, our minds know that there was not an instant that causes this condition, or a mistake in anything we did for our child to be diagnosed with a rare, genetic disorder. But our hearts — our hearts are a different story. Hemo Mama Bears will take on the worst of the worst, so their little cubs will not be hurt, and if we could take on the bleeds and the pain, we would. That is what tears our heart to pieces.
One thing I know for sure is that these Mama Bears are some of the mightiest of all creatures. They may not experience the physical pain of bleeds, but they are the ones who keep fighting for what is in the best interest of their little cubs. Their hearts will be broken over and over again as they see their little ones in pain, but their love — that crazy all-encompassing, unconditional, never waning love — is not the result of any kind of sin.
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 Services, and are intended to spark discussion about issues pertaining to hemophilia.