At first I felt nothing. Listening to him I felt numb, as though all life had just been drained from me. I stood frozen unable to move or think. I watched as the Doctors lips moved while he spoke to me. His tired red eyes teared as he looked into mine. Deep inside me, I already somehow knew what he was telling me. But now listening to him it became my heartbreaking reality.
For some reason memories of sitting in my prenatal classes amongst all the other happy anxious parents to be flashed through my mind. Maybe, it was because for the first time in my life I finally felt like I had a purpose, a real meaning to be here, in this world. A time in my life when I was in love and over joyed to be living my dream. I was with child and cherishing how alive it made me feel. I drifted back to a place in my life when I was surrounded by other females, who also embraced this new adventure. Other young women, excited, scared, and in love with the life that grew inside of them. Together we sat in the arms of our partners, expressing our fears, anticipation and the expected joy that was ahead. Briefly I returned to a time when I did not feel betrayed by faith and was not tormented by death.
The present interrupted me abruptly. Very softly spoken I heard the words "I am sorry". A single tear trickled down my cheek. In an instant my world changed. At that precise moment all that I had hoped and dared to dream left me. I stood motionless with my heart shattered, knowing all to well this pain I was feeling right now, was only the beginning of my new journey.
Holding my beloved child in my arms, slowly, I unleashed my sorrow. As tears silently streamed down my face I felt pieces of me die. Desperately, I wanted to feel the same joy I felt when he was born. His beauty captivated me as I looked down at this perfect little baby that I held. " I am sorry" echoed in my head. All around me I felt our world crashing and there was nothing I could do to stop it. I was sorry too. Sorry, that after all these years the medical world still had no treatment or cure for Duchenne. Sorry that more boys would still have to endure all the pain living with Duchenne caused. Sorry, that we would have to continue to cling to hope for a cure to get through each day. Most importantly, sorry that my beautiful baby would be sentenced to a life of living with a devastating disease, that shows no mercy in its unrelenting attack on the human body. Sorry that my son would slowly suffer from a disease that would take his life eventually, only after imprisoning him for years in a weakened body.
Often I will see or read something that triggers an event from my past. Awakening emotions neatly buried inside, quietly resurfacing. In those moments I am left with explosions of feelings and memories. Experiences that scream to be unleashed with a purpose to be shared in some enlightning way. I read a posting today on FB regarding the question, "Who believes in miracles?" Something inside me stirred. While reading some of the responses I came across one response that said, " no I do not believe in miracles, every thing is cause an effect". I stared at the word no for awhile. Only one response from a DMD mother had answered differently to that question.
It was over eighteen years ago when Duchenne personally reappeared into my world.
Those feelings when my son was first diagnosed controlled me for months. At times almost making getting out of bed impossible. Somehow though I did. I found the courage and strength to accept every challenge that laid ahead of us. But if you had asked me in those months if I BELIEVED IN MIRACLES- my answer would have been NO. It would have been an answer coming from heartache and fear. It would have came from a mother who felt despair consume her after being just told her son had a terminal disease and there was no treatment or cure.
Today I am a single mother of three sons. most of you know my two youngest sons both suffer from an unrelenting terminal disease. They also struggle with a cognitive delay. The past seven years of raising them alone has been anything but miraculous. We have struggled through some very difficult times that personally has only made me stronger in my perseverance to see my sons and I succeed. Do I believe in miracles the answer is, yes. Do I think I have personally experienced anything miraculous the answer is, no.
What I have experienced is the devastating effect Duchenne has had on me and my sons. I have seen them loose the ability to walk, to raise their arms above their heads. I have watched my sons completely become dependent on me for things most of us take for granted, like scratching the top of their nose, or rolling over in bed.
Do I believe a miracle could happen, yes. But I am not willing to sell it short. It is not miraculous that I am providing for my sons and even putting one through college as a single parent. That is the effect of hard work and personal sacrifice. While I am thankful my sons are still with me and we live comfortably it is the effect of my commitment to care fort them and Gods plan that it is not their time to pass. If Cody or Josiah rose out of their wheelchair tomorrow and stood unsupported, yes, that would absolutely be miraculous. If love walked through my door and swept me off my feet today that might just qualify as miraculous too. I do believe where there is love great things can happen. I believe Angels exist and walk amongst us. I feel prayer is powerful to the heart and mind and that hope and faith is essential to surviving tragedy. I also believe that there is a great plan and we are all a very important part of Gods design. The thought of something miraculous gives us hope and in times of despair for some of us that might be all we have to hold onto.
The joy we feel when we first hold our new born child can almost be described as a miraculous feeling. Some times some of us will refer to finding the one with whom we want to spend the rest of our life with as miraculous. In any event the belief in miracles is not meant to challenge us. If believing in miracles helps us to survive the effects of this world that in itself is a blessing.