Too Early for That

November 10, 2010

by Mark Dunning

My daughter's vision is getting worse. It shows up in a lot of little ways. She plays street hockey with my son but can't see the ball as it comes to her (to the screaming frustration of her ever sympathetic little brother). She's told to pick up all the Legos, which she does in good faith. When told she left some behind, she sweeps her hand across the floor like someone searching for a lost earring under a bed. She needs an elbow to get from the car to the house in the dark. She knocks over more glasses. She trips over the dog more often. She walks in to more door frames than she walks through.

I see all of these things, I expect them, I internalize them, but somehow I don't believe them. My little girl can't really be losing her eyesight. I hope that it's my imagination, delude myself to believe that she has always been this way. I just recognize it now that I am aware of her diagnosis. It's a bias, not a reality. It can't be reality.

Then the school calls. They notice that she is holding her books a little bit closer. She is missing lines on quizzes, skipping sentences when she reads. It's small. It's subtle. Her grades have not changed, but they will. My daughter needs more help and the school wants to offer it. It would help them make the case to the pencil pushers and green eyeshades if they had her latest vision tests. You know, the ones that will inevitably show that her vision is declining, that will confirm what we all know to be true. The last results we have were from 18 months ago. Has she had any tests recently? No, huh. And none scheduled for another six months? Any chance you could move up them up to, like, now? 

No, I'm sorry, I can't. Whether it's right or wrong for her to have the tests, whether it's necessary to get her the services she needs or not, she's not having it. My argument is that it's too difficult to reschedule. No, wait, my argument is that the ERG is too taxing for her and besides she really can't afford to miss another day of school. I cite mouse studies and the effects of light on the retina and all those flashes in her unblinking eyes and it's just too dangerous. I make most of it up. 

No, I'm sorry. She can't have the test. I don't want proof that her vision loss is progressing.

I'm too scared. 

.....

I recently met a friend for dinner, an adult with Usher syndrome. When I got home later than usual, Bella asked where I had been. I told her about my dinner guest. She asked matter-of-factly "Is he blind yet?" I was staggered by her lack of emotion as much as I was by her comment. I didn't know that she fully understood the possible end game for her diagnosis. "Do you worry about losing your eyesight?" I asked. She shrugged. "Nah," she said as she returned to her drawing of a horse, "it's too early for that."

Is it too early for that? Is it too early to worry?

I'm the level-headed parent brimming with life experience. I'm in charge of the 'be carefuls' and the 'brush your teeths' and the 'don't stick your finger in the sockets'. I'm responsible for evaluating the risk and protecting her welfare. I'm responsible for her future.

But Bella is twelve and she is living in the now. She's as tall as her grandmother and she makes her own lunch and tacks up a horse and goes out trick or treating with her friends without a chaperone. In the dark. On a street with no streetlights. She doesn't have time to worry about the future. It's too early for that.

......

Families have a tremendous influence over the care a person with Usher receives. They drive to appointments and schedule tests. They talk to school systems and translate doctors. They encourage and discourage, cheer up and calm down. And they worry. 

The trick is in identifying when certain emotions are influencing a decision to the point that it may no longer be the right decision. Usher syndrome progresses slowly. A day or two does not make a great difference. Heed Bella's advice and realize that you don't have to make any decision immediately. There is time. There is always time. Time to think. Time to sort through the fears. Time to be certain you are acting rationally and not emotionally. "I'll have to think about it," is always an acceptable response. Then go for a run. Take a bath. Write a blog post. Cry in the garage when no one's around. Clear your head, drain the emotion, then decide what is best.

The reality is that while the disease will not change, your attitude about it can, and families and caregivers could do worse than to take their cues from the Usher patients themselves--even if the patient in question is only twelve. 

Well, we've taken time and thought about it and we are not rescheduling Bella's vision tests. We're not rescheduling because missing more school at this point will only put her farther behind. We're not rescheduling because she has access to professionals who can teach her techniques that will allow her to keep up, at least for now. We're not rescheduling because the teachers feel they have a strong case to get her more services even without test results to back it up. But mostly we're not rescheduling because my wife and I had a logical, sane, emotionless discussion about what was best for our daughter and decided this was it.

We're not acting out of fear for the future because, like Bella said, it's too early for that.

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