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?

BE THERE OR BE SQUARE!

DON'T FORGET!!!!!

PICNIC TODAY:COMMUNITY PARK (BY HOME DEPOT)
TIME: 5:00 P.M.

BRING YOUR FAVORITE TREAT/SALAD TO SHARE!

HOPE TO SEE EVERYONE THERE!

PICNIC POLL!

PICNIC!

What day is good for your family? June 20th or 27th? Let me know!

AMBER
:P

Um, repeat the question, pls?

We had a transition meeting for Gareth this morning. I was reminded once again how much I have to learn about this whole disabled child spiel.
I guess I don't really trust myself when it comes to my kids and what's good for them. When the early childhood development specialist asked me for information regarding Gareth's needs, I was tongue-tied. My first thought was, "I don't know! That's why I'm here!"
I know a lot about Gareth's personality, his likes and dislikes etc. And I know that he has limitations (duh). But I don't know what to do to foster growth in those areas. I admit that I rely heavily on the information I get from his therapists and vision teacher. They're so much more familiar with things to look out for, tendencies, red flags, etc. than I am. For example, before we had Gareth diagnosed, he was already rocking at six months. Without his vision teacher, I wouldn't have known that was a problem (or at least not as soon as I did. I just thought it was one of his little idiosyncrasies).
Anyway, I guess what I'm saying is that I still feel like I'm floundering sometimes. I still wonder if I'll ever get good enough at this parenting a disabled child thing to be ahead of the game and have suggestions for his development. I appreciate that Gareth's doctors and coordinators trust me so much. But I'd be lost without them. Seriously, folks, I consider you guys to be the experts. Would you hold my hand, please (believe it or not, I'm a relatively independent human otherwise ;)?

Easter Egg Hunt Changes

Here is the latest news from James.... they have moved the event to Freeman Park near the Pavilion or Band Shell. It will still be at 11:00 am and include both the VI kids and their young siblings.

For more info or directions please call James (681-6666) e-mail at James.Casper@qwest or myself 589-2032. Hope to see you there!

Kathryn

P.S. - Thanks for those who have responded to let me know they have recieved this updated info!

EASTER EGG HUNT-HOW FUN!!!

QUEST IS MAKING THIS HAPPEN FOR US! HOW NICE HUH? PLEASE TRY TO COME SO THAT THEY CAN SEE THE NEED FOR ACTIVITIES FOR OUR KIDS!!!! I have a feeling that if there is a good turnout they might do more things for the VI kids in the future!
thanks, see ya there!

Amber

Here is the info.

We will be hosting an auditory Easter egg hunt at Tautphaus Park in Idaho Falls. It will be held on Saturday April, 11th at 11am at Lilac Circle in the Park. We encourage you to bring your whole family and we will also have an Easter egg hunt for siblings who are not visually impaired.
Please call James at 208-681-6666 or use e-mail at James.Casper@qwest.com if you have any questions or if you need directions to get to the park.

AMEN!

Lessie-
It is so funny you mention this! I am living it right now! I have finally come to terms with the fact this summer that nobody should compare kids to each other! I am always thinking that "Averi isn't doing this or that like so and so's kid" and I am really sick of therapists and others telling me how they think she isn't caught up to her age group or that she doesn't act quite normal, and that maybe something may be wrong with her! DUH! She was in a coma for 5 months and lost her vision for heavens sake! Can you really seem normal after that? I am going to just plug my ears and run the other way screaming! I have gotten ulcers from people suggesting that Averi has something wired wrong in her brain or that she may be Autistic! Who cares!?! I finally went to a specialist and my doctor and asked them if they think she has something wrong with her brain and they both told me NO! Hallelujah!

Finally, I have started using the term "that's normal for Averi"! Yes, she still wears diapers and eats baby food and she is 6 years old which is very abnormal, but it is "normal for Averi"! The good thing is that seeing "lines on the sidewalk", spinning in circles, playing piano, riding the bus, going to school, identifying people by their fingernails, smelling everyone, listening to music, jumping on the trampoline, playing with siblings, etc. is normal for my "blind" child! So whatever! There are a lot of "not normal" people in this world, and being "blind" is pretty good compared to some things I've seen out there. And the bonus is that she won't have to see it! She won't have to see a lot of crap that I wish I could block out of my mind!

Lastly, I know a lot of blind people, and they give me hope! I know that all of these kids have the potential to do so much! The only restriction I can think of is driving! And, we can find ways around that-no problem! I think the more awareness the public has, the more "normal" being "blind" will seem. That is part of our responsibility as parents! I am making it my goal to not be worried and embarrassed and to let others learn from my beautiful, wonderful, "normal" child!

P.S.-It gets harder as they get older, sorry! I just wanted to warn you now so you know! But, that is my new "normal", we will just keep adjusting.