Guest post by Ivy Scherbarth. Ivy is a Colorado/Wyoming FACES Coordinator for PPMD and mom to Hazel, age 8, and Rain, age 6. Rain has Duchenne muscular dystrophy. Follow Ivy at her blog, Living Duchenne.


Ongoing Traumatic Stress

I was talking with one of our doctors recently about the recurrent nature of some of my more irrational thoughts about my son's health and safety in the light of Duchenne. The doctor, half-jokingly, remarked that so many of the parents of his patients in the neuromuscular clinic seem to have some kind of PTSD (Post Traumatic Stress Disorder) from the diagnosis of their child. I replied, no, we don't have post traumatic stress, our traumatic stresses are definitely ongoing. Parents, siblings, and loved ones of people with fatal, degenerative disorders live every day with the knowledge that our family members are falling apart before our very eyes and there is not much that we can really do about it. We have Periodic Recurrent Traumatic Stress and Re-Stress Disorders. We have Continuous Traumatic Stressing.


It is only when our beloveds finally succumb to the ravages of their disorder, only when our dear ones are dead and buried that we see an end to the ongoing traumatic stressing that is the scaffolding of our daily lives; only then can we begin to enter into a phase prefaced by the word "post." But when that day comes, we will not call it PTSD. We will call it grief. A shorter and much more brutal sounding entity. Grief implies finality, closure, something our mothers told us we would come to in the end. Only it won't be the end either.


Knowing that our sons' life expectancies are less than a third of our own; that's traumatic. Watching them lose the war against gravity, battle by battle over the years; those milestones are each traumatic, with a cumulative dose of trauma in equal measure to the growing duties of caregiving. Each IEP meeting, each wheelchair, each use of that darn parking spot; they traumatize a family again. We were supposed to be watching our children grow.


I used to have a hard time leaving Rain to sleep by himself in the evenings. I used to sit with him, listening to him struggling to breathe and I used to wonder if he would be alive when I came back to check on him. I used to wonder if I would wake up bereft. I used to check on him several times each hour, grateful, thrilled, and pained at each horrible, snuffling snore and catch in his throat. Anticipating pain is no antidote to it. I almost decided not to marry my husband because I felt I loved him too much. I was terribly afraid of the grief that I can still feel coming, overwhelming even in its nascent looming, possibly not even to occur. He's older than me, you know. Death will come for us all.


This is why I always come back to the metaphor of Tolkien's elves. They know that they are losing the world and all that is dear and wonderful and beloved in it. They are "fighting the long defeat," fully aware that they can neither conquer the forces of decay nor surrender before they have exhausted every possible fiber of themselves in the trying. It is poignant and painful. It is a bitter, brutal struggle with much suffering and regret. And yet, there is surely some taste of sweetness in the bitter.


It is sweet to love and it is sweet to love our boys. How dear is it to be needed by children whose ages would rightly put them beyond the need for dependence, which was once the basis of our relationship to them as parents? And it is sweet to see them win small victories of competence after efforts that would daunt their careless, able-bodied peers. I'm thinking of how Rain always used to wake up smiling, oblivious to my long nights of worry about his sleep troubles. I'm thinking of his giggling little voice telling me how fast his wheelchair makes him feel. I'm thinking of the day when his teaching team helped him get up the rock-climbing wall at school just like all the other little kindergarteners.


It may be that joy is the opposite of trauma – just as sudden, just as recurrent. There is no way of preventing the bitterness of life to seep, like ink, into each layer of our lives. Yet, open the pages, and there is written joy right alongside, throughout the whole book.

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Comment by Mena Shaher on April 23, 2014 at 6:19am
Well said even though I'm his aunt but I feel exactly the same way
Comment by Lauren Ferrari on April 6, 2014 at 10:51pm

Best article I have read in along time about being a parent of a child with Duchenne.  Thank you for posting this.

Comment by Carol Keskeny on April 4, 2014 at 10:28pm

Frankie Butler said it best.  You have captured our feelings as parents.  The long drawn out grief is so unbearable at times.  Yet, we love the joy, the simple joys of even a smile our child gives us.  It's a very long road full of many bumps along the way.  Thank you for expressing these feelings, I almost feel as though I wrote these words myself.  With much gratitude, Carol

Comment by Frankie Butler on April 4, 2014 at 4:47pm

Wow, nothing has resonated quite this intensely with me for a while. you've articulated this feeling of loss and sadness we parents feel alongside the pure happiness of simply loving our child.. so well. thanks for sharing it. i just want to hug you.

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