I know I'll never forget today for the rest of my life. It's one of those days that will be permenantly etched into my memory.
Today we learned that Christian has a bilateral sensiorneural hearing loss. He has severe loss in his right ear, and moderate-severe in his left. In the short 8 months that Christian has been with us, we've been on this emotional rollercoaster with his hearing. We always knew that it wasn't quite right. I should've been prepared for today. But, when our wonderful audiologist at Hopkins was explaining that Christian has particular trouble with higher frequencies, and that "He probably can't hear your voice because you are at a high frequency", I literally felt my heart break into a million pieces.
Nothing can prepare a parent for this. Nothing.
Taking all of this in, we learned that he could possibly benefit from hearing aids, and at some point, may be a candidate for the cochlear implant. And, we know that his hearing loss is probably not auditory neuropathy, which we were fearful of. We were urged to undergo genetic testing, something I can't even think about at the moment, although I know it's necessary. Our ENT, who is such a godsend, called us this afternoon and is seeing us afterhours to help us process all of this. And, Christian has a consult to get fitted with aids in the beginning of November.
When all of this first started with Christian, one of my dearest and closest friends gave me this story below, called Welcome to Holland. It definitely has helped me try to come to terms with all of this...I read it often. I read it when one of the nice girls in my playgroup complains about all the sounds on all the toys, and I seem to be the only one who wants louder trucks and music toys, just in case Christian can hear them. I read it today, when I realized that our family really is in Holland...
WELCOME TO HOLLAND
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.