I am a very focused person, "too focused,” my husband says. So it is not surprising that I find myself often obsessing about the syndrome. Or as my husband so lovingly calls it "OATS", which probably comes from his military background and the need to make everything an acronym.
Anyway, I obsess, I obsess I obsess.
I read e-mails about Prader Willi Syndrome. I surf the net for research articles about PWS. I talk to doctors about PWS. I write a blog about PWS. My mind is always thinking about PWS. It's PWS, PWS, PWS! And it is all too often that I forget to just stop and enjoy my life, my family, my children, and the world.
Seems it's always Nick who snaps me out of it.
Yesterday was one of those moments....
I was sitting at our kitchen table finishing up discussions with Becky, our Oral Motor Specialist. She had just completed a therapy session with Nicholas and was recording his information into her laptop. As I was talking to her, Nicholas climbed up into my lap. He began to study my face carefully. I am continuing to talk and trying to ignore him at the same time.
"Mama, your eyebrow is broken."
"Yes, Honey." I say, completely unaware of what he just said.
"Mama, your eyebrow is broken," he says, this time a little louder.
"Yes Honey," I say, this time a little more impatient and still unaware of what he has just said.
"Mama, your eyebrow is broken," he says once again, only this time he takes my face into his hands and looks me lovingly in the eyes. Nodding, he says yet again,
"Mama your eyebrow is broken."
I finally stop talking and listen to this poor boy and realize that he is absolutely right. My eyebrow is broken. When I was a child, I fell off my bed and cut my eyebrow on the night stand. I was taken to the hospital for a handful of stitches, leaving my eyebrow permanently scarred.
I looked at my son and laughed,
"Yes, Nicholas, Mummy hurt her eyebrow when she was a little girl."
"I fix it!" he cries enthusiastically, and runs into the kitchen.
I continue on with my obsessive need to live, eat and breathe PWS.
He carefully opens the kitchen drawer...."rrrrrccccckkkk".
He reaches for the Band-Aids, the SpongeBob ones, not the boring tan ones.
He carefully opens the package and removes the Band-Aid, the one with pink Patrick Starfish wearing a pair of green and purple shorts, his personal favorite. He carefully removes the backing. He runs over to me, climbs into my lap carefully holding the precious dressing, trying to ensure it does not stick to itself. As I drone on about nothing important, he sits up on his knees, faces me and carefully places Patrick the Starfish smack, dab onto my broken eyebrow, a perfect placement, Marcus Welby, MD could do no better.
"All better!" he says proudly to himself. And finally I am silenced from my droning by this amazing child who "gets it".
My mouth hangs open, I am completely speechless. The blue plastic Band-Aid, taped carefully to the few remaining hairs of my eyebrow, has paralyzed me. My obsession is over at least for a few seconds. My son is looking lovingly at me like he has just cured the world of all disease and I realize…this is what's important.
It only took a small child with a SpongeBob Band-Aid to open my eyes.
To learn more about how we are enjoying our lives despite our family battles with Prader Willi Syndrome, ADHD, Aspergers and Dementia, come visit our blog at www.onalifelessperfect.blogspot.com. Thanks for reading!