Diagnosis Day

We all remember that day. Sometimes the very thought of it can bring us to our knees in agony. Other days it simply acts as the line of demarcation, dividing our old life from our new one. Diagnosis Day is a day we never forget because what follows is a completely different way of life. Among the Duchenne community, this day is referred to as D-Day. Most of us have the date etched in our minds like a scar we cannot erase.

Nothing prepares you for that day. The only way to get to acceptance is to walk the difficult path in front of you. Only then will you get to a place where you can fully breathe again. It takes time, but somehow you learn to push the pain to the background and let the beauty around you become the focus. That picture you had in your mind of the life you anticipated slowly fades away, and you start to embrace your new life.

“D-Day” not only changed my life, it changed the very rhythm in which my heart beats. Now it beats in a way that somehow aches yet loves deeper with every breath. My eyes see the world differently now. I still feel the pain, but I also feel joy in a whole new way. Without that day, I would not be who I am today, and for that, I am somehow grateful.

Our journey with Duchenne began in a state of complete shock. We had not even heard of Duchenne until then. I had no family history. My two brothers were athletic, as were my two maternal uncles. We had no way of knowing what our future held, so when it came, it hit us like a ton of bricks.

Our two sons were perfectly healthy at birth, and aside from a mild delay in speech and motor skills in preschool, we had no major warning signs. Until suddenly, our oldest son seemed to be having trouble climbing stairs. Then one night, we watched as his leg buckled and gave out right from underneath him. He fell to the floor with a look of confusion. I felt a knot of fear in my stomach and scheduled an appointment with his doctor. My husband knew something serious was wrong, but I held onto denial awhile longer.

My denial, however, quickly disappeared when I saw the look in the eyes of our pediatrician. I saw fear, I saw sorrow, and I saw pity. After that, our days were a blur of tests, phone calls, tears, and hospital stays. Shock does not begin to explain the way I felt. I was heartbroken, confused, and terrified, yet deep down, I felt something powerful. Between the tests and the tears, I felt this strange sense of peace reminding me to focus on the purpose instead of the pain. God was with me, and I knew it.

Still, the fears fought for center stage in my mind. Endless questions flooded my brain. It took me a long time to grieve and find that mysterious peace again. Deep down, I knew that the only way to rest in the plan that God had for us was to let go. I had to let go of my anger, my fears, and my prior expectations for our lives. I needed to let go and simply trust. So, I surrendered. I made a choice to blindly, faithfully, and painfully trust in a bigger picture.

I still have days that sicken me with fear when I think of the future, but I also have days that overwhelm my heart with intense gratitude. Every day I am amazed by the love that surrounds me. I am honored that God chose me to nurture my children in a way that most parents do not get to. I was created with a nurturing and empathetic spirit, and now I know why. That thought makes me want to use the gifts I have been given with courage and grace.

I read a book recently called the Hiding Place, by Corrie Ten Boom. Her family famously helped Jews and underground workers escape the Nazis during the Holocaust. She often spoke of the “bigger picture” that came only through her suffering. Even as she and her sister sat on the dark, damp concrete floors of a concentration camp, she would speak of God’s promises. She faithfully spoke of gratitude in the darkest of circumstances.

Before diving into her story, Corrie ended the first chapter with these words, “Today I know that such memories are the key not to the past, but to the future. I know that the experiences of our lives, when we let God use them, become the mysterious and perfect preparation for the work He will give us to do.”

As I read those words, I immediately thought of our diagnosis day. All those heavy emotions came flooding back to me like a tidal wave. Just like God did for Corrie, he somehow turned that heartbreaking time in my life into a beautiful testimony of hope, faith, and love. While I obviously could not relate to the horrific events she encountered, I could relate to the fact that her purpose was also found through her pain. Suddenly I knew that all my memories before the diagnosis prepared me for the life I was always meant to have. The life of a faith-filled, hope centered, nurturing, and devoted Duchenne mom.