Originally published by Hemophilia News Today, May 13, 2020
I have celebrated Mother’s Day, as a mom, for 24 years. In those years I’ve experienced tremendous joy and insurmountable grief. Some of my deepest grief came right after both of my sons were born. Instead of a time filled with happiness, a cloud of despair loomed as they were both diagnosed with severe hemophilia.
As a young woman expecting my first child, I was filled with the joy of being pregnant. Sure, I was kept up at night by the flutters in my womb and the eventual kicking, but through it all I was filled with happiness beyond my wildest dreams. But I also still remember each time the doctors walked into my hospital room to give me the news about my sons. In those moments my joy turned into confusion, then anger, fear, and devastation. How could this happen? It was as if my heart fell out of my body. In an instant, the joy of being a new mother became despair. I remember it well.
I think about the new moms enduring the same thing right now. They expect a healthy, happy baby with an opportunity-packed life. Then comes the diagnosis, and everything changes. I want those new mamas to know that opportunities remain, and the pain and despair of the diagnosis will eventually go away. Maybe not completely, but in time you will heal from the loss of what you expected for your child.
Being completely present for your children is the best gift you can give. The diagnosis will work itself out, and the time you have with your children passes by in a flash. Everyone says it, and it’s true. Enjoy these moments with your little ones. Keeping up with babies and toddlers is not easy, and yes, they will have bumps and lots of bruises. But the truth is they want their mom to love them, play with them, and delight in them.
The days will come when hemophilia may take center stage for a while, but through it all one thing never changes … a mother’s love. It is my hope that mothers of children newly diagnosed with hemophilia and any other rare disorder understand the importance of seeing past their child’s condition. As moms we are wired to advocate and fight for our children, but let’s not forget about the important moments: smelling their hair after a bath, clipping fingernails, cleaning up scraped knees, and making their favorite snacks. You, Mama, are amazing.
