I fear

That my blog is becoming boring. Mundane. A blog about nothing of substance. I mean, how many times can you all hear about my freaking basement? or the fact that despite the waterproofing, water got in last night? Do you really care? I doubt it.

So I will give you Dovi substance today. Deep, crappy Dovi substance. Substance that might make you cry. It makes me cry.

The FD family lost another member. This past Friday, October 3, 2008. He was 18.

I did not know him. He lived in California (I think), and his parents never posted on the FD lists that I'm on. They might have lurked, but never posted. So the only things I know about him are that he was 18, has an older brother with FD as well (I can't even imagine that), loved playing Uno, and went to Camp Simcha Special for quite a long time. Dovi's counselor from this summer did know him. I've been harassing him nonstop since I heard on Monday trying to get more details of exactly what happened. Was he on BiPap? Oxygen? Monitor? G-tube? Fundo? I need to know.

Because from what I've heard it's not good. He passed away in the same way that another FD'er that I know did, and I'm sure countless others-this seems to be the new way. They go to sleep and just don't wake up. That's all. No warning. Nothing. All seems fine, then they just don't wake up. It seems that in both cases that I know of (I'm sure there are more), the person in question was a little under the weather when they went to sleep. But nothing alarming-just a bit sick. But they just didn't wake up.

So yet again, Benjie and I have reason to be spazzing out. Is there any way to stop this from happening? Dovi is on BiPap. He's on oxygen. But when it comes down to it, will all this stuff actually change anything? If you want to get all spiritual, no, it will not. When G-d decides it's your time, it's your time. No amount of medical paraphernalia will change that in any way. But it's just so much more...obvious with FD.

My sister in law told me a story of her good friend's brother in law, who went to sleep fine on Saturday night, woke up at 3am vomiting, and is currently in a medically induced coma post brain surgery, and they are praying that he will have little or no brain damage. Now a story like that-it was unavoidable-there was NOTHING to be done-he was a perfectly healthy 30 year old man.

But with Dovi, who we know in advance is so fragile, and his health so precarious, it's easy to play the coulda shoulda game. Maybe if we'd do ________ then this won't happen. Will the BiPap change anything? The oxygen? The oxygen monitor? Or is it all a lesson in futility and we are stuck in this terrible limbo land of not knowing what will be in the morning? Because really, when it comes down to it, so little is known, both about the human body itself, and all the havoc FD wreaks upon Dovi's. Because, frankly, he. is. messed. up. Nothing works the way it should.

So we pile technology upon technology, hoping, praying, that it will work and Dovi will make it and not be one of the unlucky. That he will celebrate his 11th birthday. That he will go to camp next summer. That we will make him a Bar Mitzvah. That he will go to high school.

In the special needs world, there is a great emphasis on planning for when the kids turn 21. Because once they turn 21, benefit/programming wise, everything changes. But for whatever reason, I've never been so inclined to do anything at all. Zilch. Nada. And I think I've figured out why.

I'm just praying we get there.