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w July 14, 2002

A random huzzah, in fact

For the realization--finally--that our daughter's life is not necessarily going to be massively constricted because she is visually impaired. Bean has something called microphthalmia in her left eye, along with sclerocornea; essentially, a small eye and something that looks like, but isn't, a cataract over her iris and pupil. She is getting into these things called clear conformers starting on Tuesday, and it will help to stimulate the growth of the eye socket and tissue so that eventually she will be able to have a balanced brow and a prosthetic shell covering that eye. Right now we're still waiting to see what the situation is in the right eye. After a nervewracking exam under anesthesia (for Mum at least :), our ophthalmologist at Stanford had to inform us that all the structures of her right eye were in some way abnormal and that her vision was likely to be "poor". That being said, we were also told that kids can be very surprising in terms of their compensation, development, etc.

At any rate, for a while, I was pretty depressed, wondering what she was going to have to face being "different" in a world that likes to bleat piously about being inclusive, but we all know bloody well is not. It's been particularly difficult since a few of our friends have recently had babies too---none of whom appear to be facing anything more challenging than the normal newborn stuff. Don't get me wrong, I wouldn't wish a disability on the child of my worst enemy, it's just frustrating and not a little lonely. The good news is that I finally took myself to task today and decided that it was time to start looking at what Bean is going to be able to do, not what she won't be able to do, and stumbled upon a number of websites and organizations that are dedicated to blind and visually impaired athletics and recreation. The most overarching one is USABA, or the United States Association of Blind Athletes. It's incredibly encouraging to see that there are going to be a variety of sports available to her, and of course, her dad is most thrilled about sailing! I'm more inclined to steer her towards swimming or judo or something like that, but I'm just a landllubber, I guess. I also disovered that there is a center here on the Peninsula that offers a lot of resources for activities that I honestly thought would be barred to her.

I recently read somewhere that having a child with a disability is like planning for a trip to Italy for a long time, and then being told before you get off the plane that you've landed in the Netherlands and sorry, you can't go to Italy. It's a little discombobulating at first, but soon you learn to appreciate the fact that while you aren't seeing the canals of Venice, you are seeing tulips and Rembrandts and frankly, the canals of Amsterdam. So here's to Holland. And here's to Bean.

by at July 14, 2002 9:02 PM | TrackBack Comments

Heather, you have always been an inspirational individual. But the resolve and resilience you are showing in the face of these disappointments is truly above and beyond. I admire you so much, and I thank you for reminding me what hope is all about. A short quote from a new book by Nancy Guthrie, who writes about parenting disabled children: "All the other nurses had been amazed by the joy and peace in which she had accepted her Down's Syndrome baby. The couple had always planned on adopting a special needs child someday. But what struck me most was the description of how they prayed. Early in the pregnancy, instead of praying, "God, give us a healthy baby," they began to pray, "God, give us the child that you want us to have." Their submission to God amazed me ... "

Posted by: Mary on July 17, 2002 6:35 PM

Oh, my world. It is ok

Posted by: Stephan on June 12, 2006 4:13 PM

Oh, my world. It is ok

Posted by: Stephan on June 17, 2006 12:52 PM
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