Thursday, February 1, 2007

A Letter to Ashley

My dearest Ashley,

Someone asked me yesterday if I could snap my fingers and cure you of your deafblindness, would I do it. This person went further to ask if in an ideal world I could keep any other child from having deafblindness, would I? These were not easy questions, and I had to ask the person to give me some time to think about my answers. I tossed around concepts in my head like “making you better”, “improving your health”, making decisions for you which would mean society would be more “accepting” of you. The lines between decisions to improve your health and well-being as opposed to “making you better” began to blur. Of course I will always do whatever I can to keep you healthy and well, but I just couldn’t think of a way to “make you better”. In my eyes, you are the best you can be – perfect in every way. And, I honestly don’t give a damn about what society thinks – but I had to ask myself, do you? I wondered if you felt you might be “better” if you could see with perfect vision and hear all the special sounds you miss now. Would you feel your life was more enjoyable, less difficult, without your disabilities?

After a long, sleepless night with these questions playing chess in my mind, I believe that for now, I would not cure your deafblindness. I watch you enjoy every moment of every day. I see the joy on your face when you smell a flower and feel its petals. I watch the wheels turning in your brain as you study the pictures in your children’s dictionary, your face less than an inch from the page. The pleasure you experience lying next to Miss Amy, your hands touching her face and lips, trying so hard to feel how to say a new word relaxes your entire body. Bubbles and snow globes hold a mystery that never grows old for you. Sitting on the sand at the beach, inches from the surf, your eyes closed to take in every sensation, is a masterful portrait of peace. You are a happy person living life your unique way. I don’t believe you feel your life is any more or less difficult than that of the average person. Everyone faces challenges throughout their life, just different types of challenges. The difference for you is that you have taken your challenges and turned them into sensory works of art.

So, if I could snap my fingers and restore your full sight and hearing, would I? Yes, but only if you asked me to. Would I hope that in an ideal world no other child would have to endure the difficult times you have endured? Yes. Would I like for all children to have the opportunity for an appropriate education, friendships, belonging to a community and a family? Yes. Would I like to wipe away any pain you have had to endure and will yet have to endure? Yes.

But always know, my darling daughter, to me you are perfect in every way. You are a gift – a special person with vision and hearing impairments who has sharpened both my vision and hearing. I don’t think you realize the impact you have had on me and the others in your world. We are better people, and the world is a better place because of the way you are.

I love you,


Karen said...

Beautiful letter!

kidsus8 said...

Thank you for sharing your insight. Two of our children were diagnosed with Ushers Syndrome Type 1 1.5 years ago.