PPMD President Pat Furlong and Colorado FACES Coordinator Ivy Scherbarth discuss the bravery of their sons, and all young men fighting Duchenne. Please, share your thoughts after reading this month’s co-blog.
Weakness. A familiar word in the context of Duchenne, but one that seems to expand far beyond the lumbering gait, the inability to race up and down the stairs with ease, the amount of effort required to lift a fork or comb your hair. When my son Chris died, one of his friends commented that Chris was the strongest person he had ever met. Strong, as in never giving up, always doing his best, always the good sport, always kind, always supportive of his friends.
Too often we allow words to take us down a path and all too often we are stopped by what other think. The social stigma of ‘weakness’ tends to color our vision, invade our thought process, and blur our view.
Our sons cannot keep up with their peers. It is true. But we live in a world where accommodation and adaptation is necessary, required, and possible. I think it makes sense to sit on the other side of the fence. Our son’s peers cannot keep up with them… their wisdom, their drive, their commitment to live – fully live – the life they have.
Pat Furlong is the Founder and President of Parent Project Muscular Dystrophy. Follow Pat at her blog.
Gravity and Fresh Air
When I look at my son, I don't see "weakness." How could anyone see "weakness" in a person who is so passionately himself and no one else? Rain laughs out loud when there are waffles for breakfast. He kisses with all of his might. He roars and yells and plays rough games and often turns into a T-rex or a raging bull or a hungry polar bear. He throws himself into a wailing, kicking-and-screaming-on-the-floor tantrum like no other person I have ever seen. I look at my son and I see tremendous strength-- strength of emotion, strength of imagination, strength of mind, and strength of character.
Of course, my son does have Duchenne and I can see that too. I remember how very hard it was for him to gain basic skills like sitting up, eating and walking. I see the shape of his face and body, how exactly his physique matches the other boys we know with DBMD. I can see how he moves. I see his medical bracelet and his wheelchair. But I don't like to think of those things as "weakness."
I prefer to think of Rain's Duchenne as being simply a case of too darn much gravity around here. I'm telling you, if that kid lived on the moon he would spend his whole day jumping up to the sky and dancing jigs and winning running races. You see? He's not weak, he's just a moon child. Nothing unusual about that!
Or maybe he's really from under the sea. He was born in the water on a rainy day, after all. And he's been swimming since he was diagnosed at age 15 months. Every single one of his important gross motor skills developed first as a breakthrough with his therapist in the swimming pool. I think that in the pool is the place he feels most at home. I love to see him swimming and floating and jumping around under the water. He cries and protests every time we have to leave, no matter how blue his lips have become from the cold.
I like to tell him that if only we could build him a little aquarium on wheels, he could stay in the water all the time and never have to give up the freedom of movement it affords him. Oh, except that his skin wouldn't like that at all. And there is the problem of air. Unless he can grow some gills in a hurry, he'll have to come out to breathe. And there isn't any air on the moon either.
I guess he's better off on Earth after all. I think (privately, in my own mind) at least he can breathe here for now. At least the breathing machines we have nowadays are effective as far as they go. At least I don't have to actually worry about space travel or living under water because I know I already get seasick and I don't want to even think about how spacesick I might expect to be on the kind of crazy rocket we would have to take to get to the moon. I love living on Earth, even with its drawbacks. If I'm really honest with myself I know that even if we could move to a low gravity environment for Rain's sake, I would probably refuse to do so and choose to keep my family together here on Earth and learn to live with the effects of Duchenne. Which, since I have to do that anyway, is pretty good to know.
So, if we're not moving to the moon after all, I guess I should admit that I say silly things like that to combat that other, most difficult and insidious kind of gravity, emotional gravity. Just like the physical kind, a little bit of gravity is necessary or we would helplessly drift off into outer space. But too much gravity and I can't move or breathe. I need emotional and spiritual fresh air just as much as I need the physical kind. I can't live very long without the kind of fresh air that comes from being silly, from tickling my kids and enjoying their raucous laughter, from spending time with really good friends who get it, from the sparkle I can still see in my husband's eye when he looks at me sometimes, from the pure joy that can well up inside when I find a moment to relax and really count my blessings and appreciate this life I have here on Earth-- right now just as it is.
I'm not going to admit to "weakness." And I'm not going to dwell on what we "can't do" right now. I'm going to take a deep breath, and relax, and get back to work on my antigravity machine.
Ivy Scherbarth is a Colorado/Wyoming FACES Coordinator for PPMD. Follow Ivy at her blog, My Son, My Rain: A personal, biased account of one family living with Duchenne Muscular Dystrophy.
Pat Furlong, Founding President, CEO
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