Wednesday, October 17, 2007

He Can Hear Me In His Heart

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...

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.


Amy said...

Tina and Chuck,
We have no idea what you must be going through but we wanted to tell you how much we love you and are praying for you and dear Christian!

Lots of love!

Multi-talented but unemployed, J.D. said...

I love you. And I'm looking forward to exploring all wonders that Holland has to offer.

Jenny said...

Christian is the luckiest little boy in the world to have two parents who have fought so hard for him in his short little life! We're thinking of you...

Love, Steve, Jenny and Caroline

Karen said...

As somone who has been living in "Holland" for a long while, I say welcome and may your journey be a beautiful one with many by your side.

Mom to Toes said...

Hi, Tina!

Thank you for sharing your blog and your story with me.

We also had a roller coaster ride with Erin until we recieved her final diagnosis. It can be both frustrating and overwhelming.

I was telling another parent of a deaf child today that in many ways, I am glad we had the roller coaster. It gave us time to accept the reality of the situation slowly, rather than having a "slap in the face" moment.

For us, it somehow made it easier.

Please email me any time you ever need to "talk".

Drew's Mom said...

I am just "getting to know" Christian...thank you for leaving the blog address on Drew's blog. I look forward to catching up on him.

We received this poem, too, in the beginning. I blogged about it in December, I believe, if you want to check it out.

We believe that we are headed to Italy! It's just going to take us a little longer than others to get there. We are going to have some delays and lay overs; we might even have to drive or walk at times. But we know with the right amplification and intervention we will get there.

So will Christian...and your family!