Sunday, March 15, 2009


I am so lucky. I've been putting off housecleaning today. Well, not putting it off so much as taking too many breaks. It just gets to a point where it's overwhelming and I can't think about it too much all at once. And in my defense, if I don't take frequent breaks when it's this bad my allergies go nuts and I get to where I physically can't continue. But anyhow, during my breaks I've been surfing the net and visiting blogs at random.

Today I found this post by a woman who just realized that her baby is blind. He's been diagnosed with a congenital medical condition and when she was reading up on his illness she found out that his condition is usually associated with some other conditions. And when she read up on those, she saw that he had almost all the symptoms. On the list of symptoms was blindness and she suddenly realized that his lack of focusing on faces and objects, his responses to sounds more than sights... all the things she'd noticed and not put together... could be explained by his being blind.

This hit me so hard. Years ago I experienced a small fraction of what she's going through. Zaven was in kindergarten and he failed his vision screening. He'd failed others, but he'd passed some too. The doctors and nurses who'd administered them chalked it up to being uncooperative after having been poked and prodded and given vaccinations during the well-child visit that preceded the vision screening. But this time, I just decided that it was too many screenings to be a coincidence. Scott and his sister have awful eyesight, like 20/400 without glasses. So I decided to take him to an eye doctor and see what was going on. I envisioned getting glasses. What we got was 20/20 vision in one eye and near total blindness in the other. Possibly irreversible blindness.

He had a huge cataract in that eye. But you can fix cataracts, right. Well you can fix them in adults with no problems. And you can fix them in babies and toddlers with no problems. The problem comes in when your child has had one since they were born and no one noticed. In that case, in Zaven's case, you can remove the cataract but that may not make any difference at all. Because while you can fix the eye, you can't fix the fact that his brain may no longer pay attention to any info coming from that eye. It's kind of like a radio station. How often do you check to see if something is coming in on 91.1 FM? How often would you keep checking if every time you checked you only got static? Would you keep going back day after day to see if the static changed to music? No. Not really. Not if it had been static for 5 years. So even if we fixed Zaven's eye and suddenly the static changed to music, there was a strong chance that his brain wouldn't tune in no matter what. And it can't be fixed by glasses if your brain won't accept input from the eye at all.

Now that story is a long story, and I'm not ready to go into it tonight. It has things that we did right, things that we did wrong, and things that we were told were the only right way to go that later turned out to be heartbreakingly wrong. And I feel guilty thinking about all that I should have done, would have done, if I'd only known. But in the end it turned out OK. Not perfect. But OK. Zaven can see some from that eye. And even though he has sucky depth perception and hates to have anything thrown at him or have a lot of erratic movement around him, he does OK with it. Most people would never know.

But I remember the day that I realized that I should have known. I should have realized that my son couldn't see anything out of one eye for five years. And I think how this mother must feel to realize that the things she's noticed meant something that she hadn't put together. And I wanted to cry for her.

Because it's only by luck that my kids are healthy and other kids aren't.


kath said...


Scary stuff about your son... I am glad he is doing so well now.. I plan to read the post you linked to when I get home from work. The computer nazi at work blocks everything there...

No guilt woman.. you are a GOOD mom.. sometimes things just are what they are ..


Tara said...

I understand that feeling. I am still sitting here wondering how could I not know the boy couldn't hear? Looking back it seems pretty obvious but at the time it just wasn't, not to us.

Good luck on the house cleaning.