Our daughter is deaf.
Well technically she has “severe to profound sensorineural hearing loss”, but what that really means to us is she is completely deaf. Not partially deaf, not hard of hearing – flat out deaf. No sounds, no frequencies, nothing.
I know almost nothing about hearing loss – it doesn’t run in my family, I didn’t grow up with it, I don’t know anyone with hearing problems. Same is true for my wife Eliza. Sure I remember the occasional kid in grade school with hearing aids, but it was never a part of my day to day life. I was never mean to those kids nor had any ill will, it just simply wasn’t a part of my world. To say this was a surprise is a fantastic understatement.
I’m not even sure if I should call it “deaf”. Our audiologist never said the word – we couldn’t tell if she was just being nice, or its just not politically correct to use it now. I guess we’ll find out soon. “Hearing Loss” just doesn’t seem the right words – how can you lose something you never had?
So here we are 3 days after the diagnosis and still coming to terms. We’ve had the entire range of emotions: disbelief, denial, anger, humor, confidence and despair, often repeating in random progressions. Its almost like that funny scene in the movie Airplane where Leslie Nielson describes the various stages of food poisoning (“first they will vomit, then be confused, then have uncontrollable flatulence…”), all shown in ridiculously far-too-quick transitions from one to the next.
So here I am starting up a blog. I’ve never done this before, but felt strongly compelled.
Why? Many reasons and no good reason. I want to attack this problem and get strength from numbers. I want to share news with those who want to know, without upsetting those who don’t. I want to learn more about this condition and maybe, just maybe help others like me learn a tiny bit more. I want to (perhaps selfishly) have an outlet for my thoughts and feelings.
But I think above all I want to give Fiona the best shot of kicking ass in life, and I think sharing her story will help make that happen.
What I don’t want this to become is a “woe is me” outlet. We just don’t work that way. Sure there is some of that right now and I can’t promise it won’t resurface from time to time, but I really want this to be a productive, enlightening and (if I don’t F it up) an inspiring story we share along the way. I know Fiona is very lucky to live in the age we do now – there are many great technological and social resources available, and we have hands-down the BEST friends and family there is.
It really takes a village to raise a child. If you’re willing, come join us on this trip and I promise you you will grow with us as part of this journey.