Sunday, August 23, 2009

We're All Just Waiting

We just got back from the CNIB picnic! It was lovely. The weather (for a change) was perfect. There was a petting zoo and tons of animals (it was on a farm/corral place) there was food, and hayrides and many many families with children who had vision problems. There were crafts for the kids, and all sorts of fun things to do. The ground was a bit wet, but that was alright.

When we first got there I was so intrigued watching the blind and low vision children and how they made their way around the world. It was pretty awesome to see that most of them were able to walk around just fine without any help. None of them had canes. They'd bump into things here and there, but otherwise you could hardly tell which ones were blind/low vision. We even watched some of them wondering is that the blind one or is it the sibling because it was so hard to tell. That gives me hope for Skyler's future. And a lot of them looked pretty happy, and isn't that the most important thing?

We didn't meet anyone who had the same type of condition as Skyler, but we did strike up a conversation with a family whose son has a rare form of leukodystrophy. We spent pretty much the entire time talking to them, and their story was pretty heartbreaking. We started off talking about the "normal" things that special needs parents talk about, how hard it was when we found out and how the doctors and experts don't always know what's going on or don't always listen to the parents. Their little one had a G tube so we talked a bit about that. I know some things about it because of Robbie at Fertile Hope, and the newest blog I've started reading (new to me anyway) Pipecleaner Dreams (which I absolutely recommend you check out, she is a well spoken, wonderful advocate for disabled children and her posts are well written and thought out.)

Then we started talking about the specific conditions our kids have. It made me realize just how much I have to be grateful for. Their son is blind, non-verbal, and developmentally delayed. He'll never be able to take care of himself. And the prognosis is that he will die, most likely within the next few years. Most babies with his condition die while they are infants, rarely some will make it to the teen years. He has to be fed through his G tube, his diapers will have to be changed so on and so forth right up until the end. It's a genetic disorder in their case and there is a one in four chance their next child will have it. They don't want to tempt those odds, and I can't say I blame them, even though they very much want more children. They obviously didn't know about it until their second son was born. They are afraid to adopt because they already have a 2 year old son, and the 11 month old with the leukodystrophy and are finding it very challenging to have enough time for both of them.

They clearly love both their sons very much, I could see just how much care and affection they showed them both. It was heartbreaking as the father was near tears describing his son's condition and their efforts at coping with knowing their child doesn't have a lot of time. I can't imagine knowing that my son is most likely going to die within a few years. I remember when we first found out that Skyler would have to take drugs his whole life, my first and most important question was life expectancy and would this condition kill him. I mean he will have to take drugs his whole life, and will never have his own biological children, but we are so blessed that his condition is not one that will kill him. I can't imagine just watching and waiting for my child to die.


Trish said...

Wow, that's really heartbreaking.
Though I am proud that we were able to be a source of connection for you guys. My little Robbie, spreading knowledge wherever he goes. ;)

I'm going to go check out the other blog you mentioned.


Stacie said...

Did Sky enjoy the day as well?

How did he react to the animal sounds and smells?

Karen said...

I can't even imagine how I would deal with that. I am so thankful that I don't have to. But I wish there was a way for no one to have to deal with it.

Azaera said...

Skyler was pretty good! He did start to get tired at the end of the day though. I'll have to post the pic of him meeting the goat tomorrow :D

Oh and I took him to the pet store the other day and he was afraid of the birds and the fish! It was cute. Honestly I think he was just over stimulated. Lots of sounds and smells and the birds and fish were very very colourful. Probably just a lot for him to take in. But otherwise he seemed to enjoy it.