Wednesday, July 8, 2009

Life in shades of grey

I took Sabrina to Children's hospital today for a current diagnosis. I knew she had nystagmus (which is involuntary eye movement, where the eyes dance but move together not in random ways), is super sensitive to light (basically blind in the sunlight), and had very poor vision. But I needed specifics to get help from the state Assoc. of the Blind. We saw the head of Opthalmology at Children's Hospital. We still have another test we have to go back for to confirm his diagnosis, but he firmly believes she has Achromatopsia. If that's the case, it means her cones don't work at all and she sees the world in shades of grey. Now I know that things could be a lot worse. She could be completely blind, instead of just legally blind (20/200 up close and 20/400 in her far vision). Or she could be dying or something. But it makes me cry to think that she'll never see a color. I love color. I love sewing, design and photography. All the way home I was noticing the wild flowers, the shades of green in the forests and the beautiful blue sky. She'll never see any of that. I've been thinking of simple things like trying to wear matching clothes, or plug in the cords from the DVD player to the TV. On top of that she'll never drive. I'm sad for her!

She did really well through it all, better than I kind of expected. Spencer screamed through most of it, though. Sabrina and I talked a lot about going to the Dr. and how he was going to be very nice and she needed to cooperate, etc. She was shy, but ok, with the nurses. They asked questions and did an initial eye test. It's the dumbest test, for non-readers. It's totally stylized, like stencils, with some things I'd be very surprised for most children to know. The telephone is a style of phone I haven't actually seen in probably 15-20 years or more. Everything is disjointed, literally the fingers on the hand aren't even attached. It's probably a universal chart, because they've used it in every eye clinic we've been to. But it's idiotic. (here: http://www.pediatric-ophthalmology.com/images/sub/eyegraphics/childrensEyeChart.gif ). Some, like the phone, she had no idea what it was. The house and hand she got. The man on a horse she kept saying was a dog, even when it was a really large picture. Whenever it was one she didn't know, or couldn't see, she'd say, "I can't member." She said it in an embarassed voice and I felt so bad for her!

When Dr. Weiss came in, she got very withdrawn, and then super upset when he shined a bright light in her eyes to look at her retinas. I put Spencer down (and let him scream) so I could hold her and let her feel more comfortable. She calmed down a little. Then the nurse came back in and put drops in her eyes to dilate them... which totally freaked her out. Then we went to a waiting room and sat for about 1/2 an hour to give the drops time to work. She calmed down and we talked about how nice the Dr. had really been, and that he only wanted to help her. I got her to promise to smile at him! When we went back to see him, she was shy, but totally cooperative, and then loosened up and really smiled at him.

One thing she is happy about is that he said she shouldn't wear her glasses anymore ($400 down the drain... but now I don't feel so bad about that big scratch on one of the lenses). He said that the blurriness caused by her farsightedness and astigmatism, is actually less than the blurriness from her nystagmus. And somehow, by the effort of trying to see through the farsightedness and astigmatism, the eyes kind of dampen the nystagmus. I'm planning on doing my own test with her though, to see if she really sees better with them or without them.

So now I need to contact the Assoc. for the Blind, since we do know her acuity... whether the colorblindness turns out to be acurate or not. I've wondered for awhile if she was colorblind. She doesn't know any colors, and is very hit and miss on matching colors. What I think actually happens is that she matches the value, so if there are 2 yellows, they're obviously not the same as a darker red. However, if you show her one blue and ask her to find something that's a different value or hue of blue, she's lost. Even today in the Dr.'s office, I had her in a little skirt with big splotches of bright colors. She had on a green top that matched the green in her skirt. I asked her to find the same color as her shirt on her skirt and she kept pointing to patches of yellow.

So I stress about what life will be like for her. How she'll get around when she's a mom with 3 or 4 kids and can't drive. How she'll always have to cope with being basically blind in the sunshine, and never really enjoy a beautiful summer day. I'm crying for my sweet, sweet girlie who will never see colors. But then I remembered how much I love old movies, even if they're black and white... sometimes more when they are. And I'm happy that she loves to play outside at dusk and loves that time with her brothers and sisters, when she's so much more free. I know that she doesn't see anything differently today than she did a few days ago, I just understand it in a different way. And I feel humbled once again that I was prompted before she was even born, to homeschool my family. And I know she's a smartie and we'll make it work.

6 comments:

Eileen said...

I love you, DL!! And my sweet little beautiful Sabrina--so hard to think you'll not see the beautiful, colorful world as I can. I'm trying to wrap my mind around that!! So much I've always taken for granted that I hopefully won't anymore.

indavao said...
This comment has been removed by a blog administrator.
Lena said...

I'm so sorry to read this, Dielle... But let's not give up hope - 15 years ago it was not possible for people with a hearingproblem to hear - and now you get this thingie that makes them... Let's hope for a miracle!

And then - congrats on that beautiful little new prince of yours! He's totally gorgeous!!!

Hugs, Lena

Lynn said...

Hey...I am a fellow designer at FS and happened across your blog. I'm not sure what to say, but you wrote everything so beautifully. I just wanted to know that there's someone out there who just said a prayer for you and your daughter. It is a sad thing...but she still can do a lot of living, even without color, like you said.
I hope you have a blessed day.
-Lynn (TMA Designs)

Shera said...

What a sweet little girl...so sorry it was such a traumatic day for her, and for you. I totally agree with you about the eye chart for children, it really does have the craziest symbols on it, most of my children have looked very confused when asked to "interpret" it!

You put it all into words so beautifully.

Blessings!
Shera

Rick Barr said...

It must have been a weight of a challenge for you to see your child having a hard time. I hope your child will get well soon.