We Are In A Race Against Time...

Every parent of a child with Duchenne muscular dystrophy remembers the moment they heard the diagnosis. Inevitably they asked, “What can we do?”   The simple and unthinkable answer?  “Nothing.”   When we first hear it, however, most of us don’t understand how profound that ‘nothing’ is.  A Duchenne patient cannot exercise to get stronger.  He can’t “work harder to battle the disease…”  It won’t “get better with time.”  Nothing we expect is true.  We are raised to believe that we can surmount any obstacle if we work hard enough.  The challenge of this diagnosis is that ‘working,’ in the way we often think of it, speeds the disease.

Birthdays may be the most obvious example of this. We celebrate the fact that we’ve been blessed with another year with Trenten, and we mourn the fact that another of the too few precious years that Trenten will be alive has passed.

It’s as if my son is a perfect ice sculpture of himself and I desperately want to stop him from melting… I know, however, to complete the metaphor, that I can’t simply put my son on ice – he is a boy who wants to play in the sun. So I let him, and I find joy in his vibrancy and life.  Trenten is magic, like Frosty the Snowman. And like that mythical character, he won’t be held back. “And he said, let’s run and we’ll have some fun now before I melt away…” So I watch my son melt because I love them too much not to let him.

In the world of DMD, the words “conventional progress” make no sense.  In fact, when it comes to DMD, the only ‘progress’ we can depend upon is the steady ‘progress’ of the disease – which is no progress at all. It is, of course, the exact opposite, the ongoing regression of Trenten's physical abilities.  It may be that hard reality – coupled with the fact that Trenten can’t work to stop this disease, that we, his parents, his community, are driven to work so hard.

But our time is short. At 12 years old, it is possible that my son has just 6 years.  We are in a race against time, time is not our friend, and I am scared we won't have enough time...

Until next time

~Jeri

Dear New Parent Of A Severely Disabled Child

Dear new parent of a severely disabled child,

You are about to enter into a whole new world. Your life is about to be turned upside down. Nothing is ever going to be the same again.

Your are going to spend more time in hospital than you ever thought possible. You will see things there that you hope to never see again...but you will, over and over and those things will be happening to your child. Those things will be done to your child. You will learn to hate the hospital, especially the smell...

But one day, if your child makes it, you will go home with that child and that's where it really starts...or ends, depending on how you look at it.

You will work harder than you have ever worked, sleep less than you have ever slept, spend money at an alarming rate. You will do things you'd never even heard of, and things you'd heard of but hoped you would never do. You will acquire an intimate knowledge of body fluids, and of pain...your kid's and your own.

And there will be choices to make: awful, terrible choices. Some will involve life and death. Most will involve the lesser of evils. And no matter which choice you make, someone will tell you that you are wrong.

Then you will lose many friends, and some family.

And you will be scared to death. And you will cry...a lot. And, in the end, there are no guarantees that you are going to make it through.

But, you are not alone. You're not the only one doing this day to day. Some of us are, indeed, making it through, and not only making it through but actually living and providing a life for our severely disabled child. You might make it too.

If you learn to see the doctors as merely human, and medicine as an art, if you do your own research as well as consider their views, you might make it.
If you learn to trust your gut and then speak up, you might make it.
If you learn to pace yourself, ask for help, seek it out where it's available, you might make it.
If you learn to let go of everything you thought life was "supposed" to be about, all the norms and expectations, if you learn to live with less and appreciate what you have more, if you develop creative ways of finding respite and joy, you might make it.

You will have to confront pain: not mix yours up with your kid's. You will have to learn to deal with your own and accept that you can only do your best to mitigate your child's. You will learn that feeling guilty is a waste of time and energy and can only paralyze you. Then you might make it.

You will have to let go of the future and deal only with the present. You will have to deal with everything one day at a time...sometimes one hour at a time. Then you might make it.

You will need to understand about "blame". God or devil, karmic debt, random fate; you will never know "why" it happened. You can seek compensation where compensation is due, with the understanding that it won't change your reality in the end. Your only defense is your attitude.  You might make it if you let go of blame.

In time, the fear will ease, the tiredness become routine, the new life you are leading okay because it's your child. You will love that child deeply and immeasurably. There will come joy in unexpected ways. You will see strength and not just vulnerability. You will understand your child is some "one"...someone who is here to live life just as you are, and has the right to do so, as fully as possible. And you will learn to do that together...and you will both "make it".

Until next time

~Jeri