It hurt to even open my eyes. My head was pounding and I could feel an ache run up my spine. No, I was not feeling the symptoms of the flue or a virus, at least not in the physical sense. I was experiencing something much more complicated. I peered out with lids that felt dry and weighted. Scanning the room I began to feel a numbness rise from the pit of my stomach almost choking me. I wanted to hide, or at the very least be told it would all be okay. It was now morning and I realized I would have to at some point come out from under the hidden comfort of my covers. But to what- another day fighting a battle I would eventually lose to. An explosive journey with my sons where the scars of dueling with the unseen enemy wears heavy on them and rips at my heart, as though it is being pulled through a shredder.
I listened a bit longer to the somber breathing of my youngest son Josiah who lay across the room from me sleeping. Peaceful and rhythmically he inhales and exhales. I looked over to wear my son Cody laid, a sense of relief filled me momentarily. I had not heard a cough for the last 5 hours. I held my breath as I embraced my thoughts looking at the clock, hoping, that my thankfulness would not interject a force that would in some way disturb the tranquility I was embracing. One battle after another flourished with in our world it seemed. Just as we accepted and surrendered to one loss we were forced to battle another. I stretched out quietly on the fold out bed I had spent the night on, in my sons room. I ached and yearned for something to help me to move past my present flood of emotion. THERE WAS NOTHING. In spite of all my efforts to maintain a healthy balance in our world it was no match for the despair that stalked me now. The current Holiday season screamed at me with reminders of a hidden cruelness in reality.
Watching the progression of Duchenne in someways is like falling slowly to the ground from a distance. You can see the earth below. As you are falling you realize you will not survive the landing. The hands and obstacles that reach out to you along the way slip through your fingers, merely grasping at you, for what seems to be only seconds. Even if someone can grab tight of your sleeve they can only hold on for a short period of time. As you near the ground below your lungs and heart feel tremendous stress. As your descent continues you struggle to breathe. Genetics- possible friend or foe, determines how long your fall will last and the hurdles you will have to jump over along the way.
I can feel our rate of falling increasing each day. I only have to look in my Josiah's eyes and I can see how frail and tired he has become. I look at the machines that have slowly invaded our home, in hopes to help aid my sons in their fall to- Duchenne. I am reminded of the harshness growing up has brought into their delicate world. The loss they have to endure as the events that should accompany their teen years are stolen from them. I am consumed with emotion and with out words.
It is a time of Thanksgiving, and yes I am indeed grateful we have out lasted another Holiday together. I am joyously blessed to have family to share the day with. I am more than grateful to have my sons still with me and that I can still manage caring for them. We have also all survived yet another Thanksgiving mystery dinner. As I fantasized while creating our characters I felt a moment of peace. I was happily lost in my writing a script for us because, it let me forget Duchenne for a short period. It let me create a world, though briefly, that we could escape to. Dinner is over and we solved the crime for that story. But I am now brought back to the present, and behind my smile I am worn and tired. More drained than I have ever felt, not because caring for my sons has increased but because showing the world JOY IN SORROW, takes everything I have. I feel a new sense of loss as I look around at my family, a deep sense few will understand. A loss I know many of my DMD families can share. As my sons surrender to less muscle function and the presence of physical pain, the world around them soars. I find myself struggling with accepting this and the disconnection they have come to know. Knowing as each Holiday approaches we will lose more. AND THAT MY FRIENDS IS THE WORLD OF DUCHENNE.
But as I move out of this Holiday and prepare for the next I turn to my sons for strength and courage. I will still have those days that make even getting out of bed difficult. But I will, not because I have to, but because I know my sons are my everything. It is through them that I have been truly blessed. WITH THEM I HAVE LEARNED TO NOT DOWN GRADE MY DREAM TO FIT REALITY, BUT TO UPGRADE MY CONVICTION TO MATCH MY DESTINY.