Unexpected

Today we took Thomas to be fitted for hearing aids. They will be blue. Yes, hearing aids come in blue, and a variety of other fun colors, and you can put stickers on them. I went for blue for several reasons. As James pointed out, they will be easier to find if dropped. They might also help people resolve the ever-present "which gender is this infant?" dilemma. He may enjoy having something besides taupe. But, possibly most significantly, it's my way of embracing the situation. I don't want the hearing aids to feel like something to be ashamed of, something he should try to hide or something that makes him inferior. They may make him different, but don't we all have something unique? Mostly, I hope Thomas's hearing loss won't define him. It will be just one aspect of the many that will make up our wonderful boy. And yes, he is already wonderful, very very sweet and rather a good sleeper.

Thomas did not pass his newborn hearing screen. The nurses wouldn't say that he "failed," just that he "referred," meaning they referred us to the audiology department at the children's hospital for another test because, honestly, after nine months submerged in liquid, it's a miracle anyone comes out without fluid behind their eardrums. Thomas, however, did not have fluid in his inner ears. After a few trips to the hospital and several more hours of tests, we learned that he has a mild hearing loss. Although he can hear many things, particularly at close range, his hearing is such that he may have a speech impediment or learning delays without the help of a hearing aid. Of course we want our son to have as much opportunity for success as possible, so he is getting hearing aids.

People's response thus far has typically been to say "I'm sorry." I think that's a normal and fine response, but for some reason I bristle at it. I guess it's because I'm not sorry, mostly because I don't look at the situation that way. We already have one imperfect child (aren't they all?), so it's not too upsetting to get another. When I think about it I feel a little overwhelmed, a little scared, but primarily I feel profoundly grateful.

I'm grateful that we caught the impairment so early. I'm grateful for the technology that allows newborns' hearing to be tested so comprehensively. I'm grateful for the technology that will help him hear more like the average person. Twenty-five years ago, that technology wasn't available to all children. I am grateful that Thomas is in a home with parents who will do all we can to love him, get him the necessary help and do what is necessary to maximize on his ability to communicate. And, having spent several weeks not knowing the extent of his impairment and reading about cochlear implants, sign language, and severe hearing loss; I'm profoundly grateful that the impairment is only mild. When you've been worrying about severe, mild is a wonderful place to be. I am grateful for the profound sense of peace I feel about it all and that I know our little boy is going to be just fine.

Because we are at the beginning of what, I suspect, will be a very long journey, we were handed an extremely thick notebook of resources at our appointment today. It may weigh as much as Thomas. Nevertheless, I know we are in good hands because this is what we found in the front of the notebook. It expresses perfectly how I have felt.

Welcome to Holland

by Emily Perl Kingsley

I am often asked to describe hte 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 is Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack you bags and off you go. Several hours later, the plane lands. The stweardess 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 youy 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.