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. I'm sure you've all had a similar experience. I don't know about you, but 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?

I know I'm not the only one here whose blind child also has either debilitating or potentially debilitating diseases that accompany his 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 alone here, 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 of our children's blindness are what's going to cause our 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.

Once again, what's it like for you guys? How do you deal?

40 comments:

Anonymous said...

You brought up a crucial fact. Only those disabilites we can "see" are the ones that are real to us (the average person). Have you ever saw someone park in a "handicapped parking spot" and they appeared perfectly healthy? Our instant reaction is to think critically in our heads. Only when we know the facts do we realize that our judgement was wrong.

I find that relatives and friends alike try hard to help our children. Their intentions are good - but sometimes they don't realize the full picture. Sometimes we don't share the full picture with them because it is too hurtful for us to talk about.

I agree, that there are alot worse conditions than blindness - especially those that can reduce our child's life span or create safety issues for our child. Sometimes just expressing our feelings to others about our concerns will help them understand. Easier said than done I know.

Sometimes in restraunts when you hear someone criticizing your child's behavior and you know he is in pain because of a health issue- the correct thing I guess would be to tell them that there are underlying conditions - not just the spoiled child syndrome. It's easier to glare at them and hold it in. Unfortunately when we do this, we stew about it for quite a while and the person is still ignorant of the truth. I bet they would apologize all over if a simple explanation was given.

Our true nature is to hold things in and not share. This can be detrimental to our mental health as well as ultimately helping others to see what we need.

By reaching out to us tonight, it shows that you really want to get this off your chest and feel a resolution.

My 3 year old grandson has undergone genetic testing since he was 6 months. He has an "unknown syndrome." Do you know the feeling that that entails? It is scary, frightening, like waiting for the next shoe to drop. Is the syndrome going to end up being fatal... or a mild one? Will he be cognitively impaired or not? And on and on.....

He was born with Cortical Vision Impairment - the least of my worries when it comes to this "unknown syndrome". And try looking up syndromes on the internet to self -diagnose and you drive yourself crazy. The other symptoms are the scariest- you are correct. Like last December - was he going to survive his heart surgery???? Witnessing a young girl die while he was there almost sent me over the edge. I cried for a long time over the girl and her family. A lady came over to comfort me, and when I told her why I was crying, she said she was the girl's grandma. I think she was touched that I cared so much for their feelings. All I can say is that I know how I would feel if that were mine. He did make it through - only to find out he will eventually need another heart operation.

Yes, Lessie, you are so correct. Other things do precede the sight - but just know that people try their best, and yes, they do have tunnel vision at times.

How do I cope? I think of what Jesus said -

Matthew 6:34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

I live and try to visualize my grandson a healthy adult and doing things like other people do. I try and set worry aside and help him live life to the fullest. Of course, that is easier said than done at times.

My prayers are for you and your family, and I send an extra special prayer to Gareth.

Sincerely,
Cecelia Lewis

Lessie said...

Cecelia,

You're right that I write these posts partly to get this frustration off my chest. But I also do it because of our "true nature to hold things in and not share." I blog in several other places. And the reason I blog is to foster community and form places for people to come and know that they are not alone. Because as you said, "This can be detrimental to our mental health as well as ultimately helping others to see what we need." I'm all about raising awareness. And that's not gonna happen if I keep my mouth shut.

Secondly, you're right that the people who send us these bits and pieces of information absolutely mean well. And I do realize that. Perhaps I should have mitigated my criticism of their efforts. I certainly want to foster understanding, not make people feel like I have a chip on my shoulder and scare them away from asking me more questions about my son's condition.

Thirdly, thank you so much for sharing more information about your grandson's condition. I would be truly terrified to try and live with the uncertainty that comes with his health problems right now.

Perhaps you could do a post on your own fears and frustrations?

Lastly, thank you for your kind thoughts. It's good to know I'm not alone and hearing from other people helps me put things in perspective. I truly appreciate that.

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