“Be strong,” people keep telling you, but they don’t know how it feels to hear the doctor confirm the diagnosis you feared most. They don’t know that his words keep haunting you like a song you can’t get out of your head. Duchenne Muscular Dystrophy you keep hearing over and over again. They don’t understand the trauma that takes place inside a mother’s heart when she hears that her child has a degenerative disease. They don’t, but I do.
No parent should ever have to tell their child they have a degenerative disease. There is no parenting book in the world that will prepare a mother to tell her two sons they have Muscular Dystrophy. How do you tell your six and eight-year-old sons that their lives will never be the same again? There is just no possible way to prepare your heart for such a task, but after I got that dreaded call that’s exactly what I had to do.
I live in two worlds.
One is the world we all live in. Everyone is familiar with how to navigate this world. There are endless maps, books, and guides to help people find their way around. Support is freely available to anyone trying to learn how to thrive here. I still live in this world, but it’s no longer my home.
I remember the day I became a mother like it was yesterday. I remember vividly how it felt to hold my precious newborn for the first time. I remember the tiny fingers and tiny toes. I can almost smell that heavenly newborn skin aroma when I think about it. Oh, how I love that smell.
On November 6th, my whole world changed. I found out that you were gone and nothing has been the same since. I keep expecting you to walk through the door and make everything okay again. I just can’t seem to grasp this new reality without you in it.