And Here We Go...

I suppose there should be some sort of introduction to this soon to be horribly embarrassing blog. I am the father of a ten year old little girl who has Usher syndrome. Usher is the leading cause of deaf blindness in the United States and Europe and it’s a nasty disease. Bella, my daughter, was born deaf and is now slowly losing her vision to retinitis pigmentosa. She’s effectively night blind and her vision is slowly constricting on the periphery like she’s looking through an ever smaller tube. Right now there is no cure and no proven treatments for Usher and if things don’t change, she’ll most likely be blind by the time she reaches college. It's a bummer.

That’s where the bad news ends. Oh, wait, not quite. Usher kids also have poor balance so Bella sometimes staggers like a sailor on shore leave and it will only get worse as her vision deteriorates.

Now that’s really where the bad news ends. Here’s the good news. She’s got a great sense of humor and she’s the most adventurous person I’ve ever met. She also has a wonderful little brother named Jack who is a character in his own right and loves her like the sun and the moon. She has a mother who was so inspired by her daughter that she set up the Decibels Foundation to help kids with hearing loss and changed careers just to help kids like her daughter. She also has two dogs that like to puke in the middle of the night and who usually smell like wet hushpuppies. And she’s got me. OK, so maybe that’s more bad news, but still…

The point is that having Usher stinks but it’s just part of Bella’s life. It doesn’t consume it. Mostly she’s in to dolls and horses and drawing and horses and writing stories and horses and singing remarkably loudly and out of tune to her iPod. Did I mention she likes horses?

When I tell people about Bella’s condition, it usually dampens the conversation like a heavy fog. You can practically hear the funeral dirge in the background. But it’s not like that. It’s mostly sunshine and daisies with a few days of heavy rain. In short, it’s just life. Hopefully this blog will help shed some light on what life with Usher is really like.

Unfortunately, her chronicler is me so I’ll apologize in advance to Bella and the rest of my family for everything that will follow. Let the humiliation begin!