Quiet Place
The following "post" was not written by me, but by another blogger. A friend passed it on to me, as a beautiful example of what it must be like to lose a child with Sanfilippo. I just had to share it.
THE QUIET PLACE
For a long while, I’ve been of the understanding that parents of sick children do most things out of a combination of love and necessity. She’s 5 years old and has a brain tumor. She’s our daughter and we love her and this has to be done. He’s 17 years old and was in a car accident. He will never be the same as he was, but he WAS and we love him. He IS and we have no choice.
But there’s a deeper reason I’ve come to know--a third space of which I’ve become intimately appreciative.
While she’s still here, he sets his alarm every two hours to reposition her in the bed, provides her medications through a feeding tube and diligently records the hundreds of seizures, each of which rock the bed and break his heart. And those on the outside wonder why, and how? We want it to be over because it seems to hard---so time consuming and fruitless.
And when it’s over, and he packs up her room and her things and appears more tired than we’ve ever known him to be, we expect him to be sad and to miss her. We expect his hand to quiver as he runs his finger over the smile she wore in her Kindergarten graduation picture. We expect him to look down at the scuffed tile floor when he hears someone call out “Daddy!” and realizes that it wasn’t for him.
But we shade our eyes from the worst part, even though we know it is coming. The moment when he sits down, exhausted, on his couch and notices that he has absolutely nothing to do. No, he’s not thinking of her unfinished life--of graduations and weddings or even of 1st grade. He’s thinking, oh, what he wouldn’t give to have a diaper to change, sheets to clean or an IV pump to silence. Because he has been doing somethingfor so long that it’s physically painful, now, to be still.
The black idleness of his present engulfs him; it wraps him up in a damp blanket right there on the couch and he throws his hands over his ears to block out the shrill, desolate silence. At that very moment, he would rather have her back broken still, instead of whole, just so that he would have something to do.
The quiet place. It’s why people work in factories and flick their pen caps.
It’s why you listen to talk radio on the way to work, or your iPod while you vacuum. It’s why you dread getting into the shower, for fear of working your hair into a good lather and forgetting about the present tasks at hand, thereby leaving room for It.
Because the quiet place isn’t about loss or emptiness, for those things can be filled, if only with a memory. The quiet place is about a silence that no sound can pierce and a nothingness so hollow you wonder if you could be lost in it, and never find your way out again.
But there’s a deeper reason I’ve come to know--a third space of which I’ve become intimately appreciative.
While she’s still here, he sets his alarm every two hours to reposition her in the bed, provides her medications through a feeding tube and diligently records the hundreds of seizures, each of which rock the bed and break his heart. And those on the outside wonder why, and how? We want it to be over because it seems to hard---so time consuming and fruitless.
And when it’s over, and he packs up her room and her things and appears more tired than we’ve ever known him to be, we expect him to be sad and to miss her. We expect his hand to quiver as he runs his finger over the smile she wore in her Kindergarten graduation picture. We expect him to look down at the scuffed tile floor when he hears someone call out “Daddy!” and realizes that it wasn’t for him.
But we shade our eyes from the worst part, even though we know it is coming. The moment when he sits down, exhausted, on his couch and notices that he has absolutely nothing to do. No, he’s not thinking of her unfinished life--of graduations and weddings or even of 1st grade. He’s thinking, oh, what he wouldn’t give to have a diaper to change, sheets to clean or an IV pump to silence. Because he has been doing somethingfor so long that it’s physically painful, now, to be still.
The black idleness of his present engulfs him; it wraps him up in a damp blanket right there on the couch and he throws his hands over his ears to block out the shrill, desolate silence. At that very moment, he would rather have her back broken still, instead of whole, just so that he would have something to do.
The quiet place. It’s why people work in factories and flick their pen caps.
It’s why you listen to talk radio on the way to work, or your iPod while you vacuum. It’s why you dread getting into the shower, for fear of working your hair into a good lather and forgetting about the present tasks at hand, thereby leaving room for It.
Because the quiet place isn’t about loss or emptiness, for those things can be filled, if only with a memory. The quiet place is about a silence that no sound can pierce and a nothingness so hollow you wonder if you could be lost in it, and never find your way out again.
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