Dear Newly Diagnosed Duchenne Mom,
“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.
I’ve been where you are. I know what it feels like to force yourself out of bed each morning. I know what it’s like to cry yourself to sleep at night overwhelmed by fears of the future. I know what it’s like to feel alone. I know what it’s like to feel like no one understands how you feel. I’ve been where you are, but I’m not there anymore. I’m just a little further along on this journey than you, but I can see something that you can’t quite see yet. I can see hope, and let me tell you, it makes all the difference.
When my two sons were diagnosed with Duchenne it felt like my world stopped turning. It felt like the shock, denial, anger and depression would consume me. It felt like grief, because that’s exactly what it was. I had to grieve the life that I’d expected to live, before I could move forward. I had let go of all those hopes and dreams that I had for my life and my sons’ lives before the diagnosis. Only then, could I learn to enjoy my new life and create new dreams for the future.
You are feeling exactly how you’re supposed to feel. You’re allowed to be angry, bitter, scared, sad and overwhelmed. You’re allowed to feel however you feel. There’s no right way to handle a diagnosis like this. There’s no perfect way to deal with Duchenne, you just have to keep going one step at a time. I know that seems impossible right now, when all you want to do is go back in time to a place where your worries were trivial in comparison to this, but you can’t.
I went to a counselor shortly after my two sons were diagnosed. I was struggling with depression and anxiety, and I finally reached out for help. She started with one simple question. She listened to my story and then asked me how I was feeling. I sat there frozen. How do I answer that? Do I tell her that I feel overwhelmed by the flood of information, tests, appointments and difficulties that lie ahead? That I feel paralyzed by fears I’ve never experienced before. That I feel broken, fragile, anxious, bitter and completely exhausted. How do I say that I feel lost in a world that I never wanted to enter into?
“I feel like I’m drowning,” I said holding back tears. I was drowning. I was drowning in feelings of shock and fear that my child would leave this earth before me. I was drowning in so much pain that I could barely see above the waves. Feelings of denial, anger and deep sorrow kept crashing over me as I struggled to just keep from going under. I couldn’t breathe, let alone swim in such rough seas.
I know right now you feel like it will never stop hurting like it does now, but it will. I know it feels like you’re going to give in to the fatigue and stress, and just sink straight to the bottom. I know it feels like you’re not strong enough to make it through this part, but you are. Each wave you swim through will make you stronger. You just have to keep going and keep your eyes on the horizon. Keep your focus on the hope you have, not the pain you feel right now.
The counselor helped me realize something profound that day. Drowning starts with panic and denial. You start frantically swimming trying to save yourself. You splash around trying to stay afloat, but eventually you have to surrender to the sea. You eventually accept where you are and let go. Here’s the part to remember though, even when you let go, God doesn’t. You will one day learn how to swim in the rough seas ahead, because you must. And when you do, you can start to enjoy life again instead of just frantically trying to stay afloat.
I know it’s hard to imagine ever feeling different than you do right now, but one day you’ll accept this as your story. All those dark feelings you feel right now, will one day fade into the background and suddenly you’ll be able to see in color again. You’ll be able to love deeper and fight harder for a child that will amaze and inspire you every single day. You’ll find that there is an incredible life left to live. There are memories to make and moments to cherish. There’s beauty in the brokenness, and there’s a God who will never let go.
Be strong, they keep telling you, but they don’t see what I see in you or what I see ahead of you. I see the part where you stop trying to chase the life you wanted and start finding joy in the one you actually have. I see all the times ahead that you nurture your child with unfailing love and devotion. I see you get back up and fight like a warrior to give your children a beautiful life. I see you start to advocate, research and navigate this life like an expert. I see you begin to inspire the people around you without even realizing it. Your view is still on the pain, but keep going, and soon you’ll be able to see a different view. One that is breathtaking and life changing. A view full of love, faith, hope and a brand-new perspective on life. Don’t worry, you don’t have to be strong to get there. You just have to trust that one day you’ll learn how to swim.
With Hope, Faith, and Friendship,