To Parents Whose Child Was Just Diagnosed With Muscular Dystrophy

Dear parent of a newly diagnosed child,

When our oldest son was 5 years old, we attended a Muscular Dystrophy Association (MDA) fundraising event. There we met a mother whose 17-year-old son has muscular dystrophy. We chatted during dinner, and as we were leaving to go home she said, “I know you don’t want to be here, but welcome to the family.”

So now as the (somewhat) experienced mother of children with congenital muscular dystrophy (CMD), I say to you:

Welcome. I know you didn’t plan to be here, but we are your new family. We will love you and your child!

I know how overwhelming a diagnosis can be. We struggled for years to find one for our sons. Then when we found it, it felt simultaneously like a blessing and a curse. We were relieved of the uncertainty we had felt for years, but we were faced with a diagnosis that had huge implications for our daily life as well as our future. So much new information to take in. And if you are like me and don’t have a degree in medicine, you are faced with the task of learning a new vocabulary, a new set of ideas, and basic genetics.

Give yourself time. Be gentle with yourself. I think that as a parent you have to take in the information that will help your child and process your own feelings about it. These tasks are two completely separate things.

I definitely went into “go” mode with my boys after their diagnosis, focusing on appointments, figuring out how the medical equipment worked, researching anything I could find on SEPN1, dealing with insurance. You don’t have a choice with this step. You have to do it.

And then when you have a moment, think about yourself and how you feel about the situation. When I stepped back to think about the diagnosis, I fell into the cycle of grief. Acceptance did not come quickly and some days I fall out of that place easily. It’s OK to feel what you are feeling. You are not being selfish if you feel angry or not eternally grateful for the diagnosis and modern medicine. You may ask why and that is normal too. However, I can tell you right now that there is no good answer to this question.

When you are ready, please connect with others affected with the same disease. If it’s SEPN1, you can find us on Facebook. We may be a small group of people but we are mighty. We come from all over the world with so many different SEPN1 stories. We can truly say, “We get it.” No explanation necessary.

Doctors are essential and many are a huge blessing to us, but they do not live with your diagnosis every day. We know the tricks and tips of using a Bipap and a Cough Assist. We can give recommendations on which wheelchair to purchase. We can send you pictures of our kids with their Bipap on when your kid feels like she is the only one who has to wear it. We can send you encouraging messages when your child has spinal fusion surgery. We will support you.

I don’t know what the future will hold for your family. You may have many shitty days ahead of you. You can also look forward to days filled with joy and hope. Most days will be a combination of both shitty and joyful. I do know that you will find strength you never thought you had. You will dig deep, put one foot in front of the other, and face another day even when you think you can’t. You will find your tribe who will support you, encourage you, and show up for you when it all becomes too much to handle.

So take a deep breath. Stop Googling. Give your child a hug. Cry. Go for a walk. Grieve. Pray. Find what peace you can.

Again I will say,

Welcome. I am so glad to meet you. I am rooting for you.