the Duchenne Warrior

I held my phone in my hand. I was at a loss for words as I  looked at the posting of a friend on Face book. A single tear rolled silently down my face.  My heart broke for her as I  studied  the photo.  The beautiful photo of her next to her son, as he laid in bed.  It also broke for  her family and it broke for her amazingly brave son, who had given everything in his fight for life.  I breathed in deep.   I  hated this disease with a passion. I knew the sorrow it brought to  the families  that were touched by its unrelenting attack.  After all I had been living  with it my entire life.   I understood the anger, the fear  and the tormenting loss.  But even I  at this time was at a loss for words.  What do you say to a mother as she is saying the final  goodbye to her terminally ill son.   What words of comfort can you offer to the  family that has gathered around their beloved for one last goodbye.  I tried to imagine what I would want to hear.  I had nothing.  Nothing except that,  I would want to know people cared. I would want to know that it mattered in some way that my son  would no longer be here. I would want to feel  the out pour of love in the most purest form.

The DMD community had been sending words of heart felt support honoring this brave young warriors decision to cease in his battle with Duchenne.  As best we could from different corners of the globe we posted prayer hands and hearts.   But the harsh reality was at 27 years his young  life was ending.  The day had come for him to fly.  He like  most of us in  the DMD community understood, this was a battle he would never win.  All the machines that had assisted him this far only prolonged the end that would come, no matter how hard we hoped or prayed for a treatment, or a cure.  This very brave young man had made a decision no young man should ever be faced with.   A decision many of us parents with  older sons living with this disease fear we may one day be faced with ourselves, far far to soon.  A very brave decision that would finally give him peace and end his immense suffering.

I wiped at the second tear that had begun to form.  My son  Cody had just turned  25 years old. Oh yes, how I hated this disease.  I sat alone in silence thinking about what being 25 years old means to a terminally ill young man.  The grim stats are all there in the Muscular Dystrophy medical journals.   I also thought about what it meant to me, the parent of a son who was approaching a medically defined expiration date.  I felt the fear and the deep sorrow.   The fear that is so intertwined in my daily life it has now become  a permanent part of me.  A  fear, that is sacred and that I cant allow to be treated lightly so I keep it hidden.  The daily sorrow  as a DMD parent I  keep silent from the world. The sorrow of  knowing the fate to come.

It  is a cruel and harsh reality for our sons.  One that we as  Duchenne parents struggle with daily.  We will watch helplessly.  Worn and grief stricken as our sons eventually,  lose  in their battle. But only after suffering for years with this monstrous muscle wasting disease.  This is a journey that somehow we have been chosen for.  A fate  destined with heart break and loss.

I looked at my friend in the photo and then I glanced at my own reflection through  the window I  was sitting by.  We were both  just mothers. Mothers to young men whom we loved unconditionally.  Young men  in battle for life.  Mothers who watched their sons dreams die as Duchenne progressed. Mothers filled with fatigue but who  learned to be strong even when overwhelmed with fear.  Mothers who faced each day with unconditional love for their courageous sons.   

I looked back at the photo once again. Blinking back  even more tears.  I hated this disease so intimately.   But even in its ugliest form I have been honored to embrace a love unfamiliar to many.   I now saw not only a Mother but, the essence of love in the most purest form. I saw the joy she held for her son.  The deep joy in sorrow that brings us the most perfect love.  I embraced in the warmth.  Yes her heart I knew was breaking but the spirit of the love between her and her son spoke of compassion and truth.  This love I  understood.

On this journey we will undoubtedly at times cling to hope and prayer.  But in the end when our hearts are broken  we will turn to our circle of family and friends for love, support and strength.  My prayer for my friend and the many other Duchenne families that have lost a loved one to this horrific disease  is " May you never feel you are on this journey alone.  May you find  strength when despair is near.  May love always find its way to you and keep you."