Sunday, October 11, 2009

If Only It Were Just Blindness

So a friend sent me a message on facebook today. He told me he'd seen some special on PBS about this new technique that allows some blind people to see, at least on a minimal level. While I'm sure this friend meant well, as Gareth gets older, I worry less about his vision and more about the other medical conditions that he was born with. Why isn't everyone concerned about fixing those?

Many blind children also have either debilitating or potentially debilitating diseases that accompany their blindness. With Gareth, it's SOD. Missing a septum pallucidum isn't a big deal. Having an under-developed pituitary gland is. It puts him at higher risk for diseases like diabetes, could potentially stunt his reproductive health and will almost certainly affect his ability to grow normally. From what I understand, there could also be potential cognitive issues that arise if he doesn't receive treatment. Maybe I'm insensitive, but doesn't blindness pale in comparison to these other issues?

But ironically enough, blindness is the "visible" part of his disease. It's the part that everyone else can see when they meet Gareth. He still determinedly rocks his head back and forth. He still walks into table edges if you don't warn him in time. He stumbles over toys in front of him. Daycare workers, family members and your average Jane on the street can see these symptoms. And they think they can potentially relate to them as well. They think, "Gee. That would suck to live in the dark all the time," or "oh, the poor blind child. I bet he's gonna be another Stevie Wonder when he grows up. I'll give him free music lessons. To hell with his sighted sibling." And so they spend all their pity and condescension on fixing that.

But they don't see the cysts in his brain. They don't see his almost non-existent pituitary gland. They don't see him two years down the road when he's receiving hormone shots everyday of his life until he hits a potentially induced puberty. And frankly, next to those worries, I'm not so much worried about the fact that he can't see. That's normal for Gareth. As far as he's concerned, blindness is business as usual. Not that there won't be the occasional insensitive playground bully. Not that he won't face some discrimination. I do realize that it's going to be something he'll have to deal with. But being unhealthy isn't normal for anyone. When your body starts to rebel against what you think it ought to do, you're going to notice--regardless of whether you can see or not.

And who are we kidding? The diseases that accompany most children's blindness are what's going to cause their families the most worry financially as well. Luckily most of us are covered by some kind of state program or other. But we all know that given a sudden rise in income, or an improvement in functionality, our children could lose that coverage and then who's going to pay for that? I admit this keeps me up some nights.

But again, these are the parts of our children's conditions that people don't see. And so they don't send us news about stem-cell research regarding gland re-building, or fighting blood related or auto-immune disorders. We get access to that information through our service coordinators, doctors, etc. But for me at least, it sometimes gets irritating to have family members and friends send me stuff regarding only the blindness, wanting to fix my poor broken child who, if they really took a look, is actually a pretty normal kid overall, but who will also face some serious health challenges as he ages.

Lastly, I know these people mean well. But seriously, folks (and I'm talking more generally. Not to the people who read here. Most of you have been incredibly sensitive in real life), don't be afraid to ask me questions. Don't make assumptions.

Cross-posted.

6 comments:

angryyoungwoman said...

I'm glad you were more in-depth about Gareth's disabilities here. I didn't really know that much about them before (not that I know that much about them, now). I know it can get really frustrating to have people send all sorts of info or even question your choices when it comes to disability-related stuff (I always feel like directing people to the section of books I have on neurology and epilepsy, and asking them if they think I really haven't heard their "cure" before).

Lessie said...

AYW, I know what you mean. People are constantly telling me about the new miracle surgery that's going to restore my son's vision, like he's broken or something. Drives me nuts. I try to handle it diplomatically when they approach me. But I felt safe venting the frustration here.

kpnblog3 said...

您好

D'Arcy said...

Lessie,

I had no idea and I feel so glad that you felt safe venting here. No one is broken. People are who they are and for some reason (especially in religion) we have this obsession with perfection (and a crazy idea of perfection)...with that comes constant dissatisfaction. I'm so over it. I love my imperfections and believe that's what makes us who we are, I don't want to them to go away.

Thanks for helping to educate me a little too.

I just think you are one amazing person!

Lessie said...

Thanks, D'Arcy :) I think you're an amazing person too.

It's interesting that you mention religion's obsession with perfection. A lot of my Mo friends and family kept praying for miracles, asking God to heal my son from his blindness. My mom, up until her untimely and (according to priesthood blessings) not-going-to-happen death, kept bearing her testimony of God's power and telling me that she knew Gareth would be healed. In the end, isn't better to just face reality?

D'Arcy said...

I agree completely. I know this is a weird comparison, but it's like all the times that I was given a blessing or made a promise that I would get a husband...like I couldn't be a functional member of the church without that other person. It really did make me feel incomplete for a long long time. It would be awful if any of those thoughtless hopes would influence Gareth to think he was anything other than complete and amazing.

You're a strong person. I'm so grateful that Gareth has you for a mother!