July 18, 2009
By Mark Dunning
I am not a writer. I am not a doctor. I am not an expert. I am just the father of a 10 year old girl with Usher syndrome.
I have taken my daughter to Iowa, Seattle, and Philadelphia. I've gotten advice from people in Sweden and Spain and Israel and England. She's had molecular and vision field and dark adaptive tests. She's had fundus photos and OCTs and ERGs. We've spent hour upon hour upon hour sitting in the dark or, worse, a waiting room. She takes vitamin A. We've eaten fields of spinach and an ocean of fish.
I attend monthly research calls and rub elbows with the best and brightest in the world. I have the top people at the Foundation Fighting Blindness, Casey Eye Institute, Harvard Medical School, and Children's Hospital on speed dial. I have access to the finest medical care in the world in Boston and speak frequently with the best people at NIH.
I know dozens of families with Usher syndrome. I maintain a web site on Usher syndrome. I write a blog on Usher syndrome. I tweet about Usher syndrome.
I am supposed to be different.
But I'm not. I am just the father of a 10 year old girl with Usher syndrome and my daughter's vision is still failing. It gets a little worse with every test. Her vision field constricts a little more. The amount of pigment in her fundus photos increases a little bit. The response on her ERGs gets a little smaller.
And I lose hope. I can't sleep. I constantly fight back tears. I lay in bed all day. I find no value in the warmth of the sun or the warmth of a smile. I think about death, not by my own hand, but by time. Will I live long enough to see her see? Salvation seems so far away, just a dot of pigment in the distance. I'm dying with her, one cell at a time.
I'm down. I'm staggered, stunned, my face on the canvas. The world wobbles and there is no way I can get up this time. This time I'll just lay here until I'm counted out. This time I'm finished.
Yet I still paw at on the ropes. The world settles enough for me to find purchase. I slide my feet underneath me.
And I get back up.
I owe some blog entries. I'll get caught up next week once I'm back on my feet. The fight's not over.