April 13, 2011
by Mark Dunning
"Those who dare fail miserably can achieve greatly." - John F. Kennedy
My daughter has Usher syndrome because of me. She has my genes. I gave them to her. I gave her the mutation that causes a certain protein to be produced incorrectly. I am the reason she was born deaf. I am the reason she can't walk a balance beam. I am the reason her vision is getting worse.
When she trips over the dog, it's my fault. When she bumps in to the door frame, it's my fault. When she can't see at night or can't hear the teacher or knocks over the glass that she couldn't see, it's all my fault. I'm guilty.
Guilt is one of the many traits of Usher syndrome. Deafness, vestibular issues, vision loss, and guilt. Parents are not alone. People with Usher feel it, too. My daughter dumps a glass of chocolate milk during dinner at Grandma's house and apologizes a thousand times. It's her fault. Her little brother never spills the milk. He's younger than she is and yet Grandma has to clean up after her all the time. Not him. Grandma says it's OK. She tells Bella it's not her fault that she has Usher. Bella doesn't agree. She spilled the milk. It IS her fault and she feels guilty about it.
Adults with Usher feel it, too. A husband needs to go to the doctor so his wife has to take a vacation day to drive him. He feels guilty. A girlfriend feels lost at loud, dark parties so the boyfriend not only doesn't go, he doesn't even mention the invites. She feels guilty. A father can't teach his youngest child to drive. A grandmother trips over her grandson and knocks him down. A mother has to ask her parents for help driving the kids to school while her husband is away on business. They all feel guilty.
I hate that life is often tough for my daughter. I hate that little things are a struggle some times. I hate that I can't make her problems go away. I'm her father. I'm supposed to take care of her, to protect her, and I can't. It tears at my heart. It's all my fault.
In February my daughter's sixth grade class held a fundraiser for the Decibels Foundation to help children with hearing loss. Bella is passionate about helping little kids like her and the kids in her school were inspired to raise $20,000 to help. It was a lot of work, $20,000 in $10 and $50 and $100 increments from aunts and uncles and neighbors and friends. Two kids shoveled every driveway in their neighborhood after one storm and gave all the money to Decibels. It was an effort that stirred the soul. Our future is in good hands with kids like that running the show. And at the heart of it was my daughter.
Because of her efforts Bella's school superintendent nominated her for a Make A Difference Award given by the John F. Kennedy Library in Boston. The library gives the award to 100 kids each year that show leadership in charitable endeavors. Bella's school had submitted kids in the past but none from the school had ever been honored before Bella was chosen.
The award ceremony was held at the prestigious JFK Library overlooking Boston harbor. It's a place where world leaders have spoken. The superintendent and all her teachers left school early to attend. The words of John F. Kennedy were read. "Ask not what your country can do for you..." Bella shook the hand of the State Treasurer when she picked up her award. The thousand people in attendance gave the kids a standing ovation.
It tore at my heart. I have never been more proud. That was my little girl. She had my genes.
There is good and bad with Usher syndrome. For every spilled milk there is an astonishing accomplishment. John F. Kennedy is one of my heroes, but most of my heroes have Usher syndrome. As families with Usher, we can't take the blame for the bad and not take credit for the good. My daughter is an inspiration who manages daily to exceed my highest expectations for her. I am lucky. My daughter and my son make me proud every day.
And it's all my fault.