Tuesday, October 7, 2008

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.


Rachelz said...

I guess I think of the title of Shosh's blog "day by glorious day"- which was coined by another special family who had a special needs child.
Thank you for this post- it's a reality check pre-yom kippur and its nice to know I have such special people living in my neeighborhood.

Imma/Savta said...

Dear Sara and Benjie,
I just read today's blog and am sitting here crying. I don't have any motherly pearls of wisdom to offer that will help. I wish I did. Only know that you both are doing everything possible for Dovi and that you are making his life the happiest and best. Just look at his face, see his smile, hear his laugh, chuckle at his wacky sense of humor and know that you are giving this precious child such happiness and joy. We have no control over what Hashem decides for any of us. Just know that you both are the most wonderful parents Dovi could possibly have. And pray a lot.
With so much love, Mommy/Savta

Miriam said...

Let me tell you that I am sitting by the computerwith tears streaming down my face. Dovi is always in my tefilos. You are such amazing parents for Dovi- it's no wonder that he is such a happy, good-natured, charming guy. Your post really was a wake up call right before Yom Kippur- thank you!

Ilana said...

Sara- I never comment but your posting today was just so moving that I had to leave a little note. I have been so impressed with you and your family's strength and beautiful relationships. I couldn't possibly comprehend the difficulties you face and I really feel so much awe about the way you handle it all. Dovi is a great little boy and we have been and will continue to daven for him.

WriterGrrl said...

Oh, Sara.

We'll have to meet halfway between our homes and go out drinking.

DESJ and Company said...

you got it writer grrl sista!

elana said...

wow! your post truly hit home. i have no words to really say. we just have to daven for our children and do the most we possibly can for them. i know you are doing the most you can for dovi.when ever i would see you at therapy, dovi always would come in with a big smile on his face. he always looks sooo happy.

Shosh said...

this was beautiful and heartbreaking at the same time. i constantly struggle with the balance of emunah of believing that hashem can truly do what He wants at any time, but that we need to do our own hishtadlus as well. and i have to echo everyone else who commented that you guys are amazing parents. it shows in all your kids.

Amy (3Peas) said...

Hugs to you my friend...I wish I had some wise sage words to share...but alas I don't. All I can say is that Dovi is loved. And loved by SO many. YOU my friend have given him an amazing life by all that you do- and by all the people who because of you, are in his life. I mean Dovi is seriously practically a rock star! :) And for good reason- the boy is just a little piece of heaven :)

Stephanie said...

Writer Grrl - I don't recommend you going out drinking with Sara - she'll have half an amaretto sour and be asleep, preferably on a couch.

Sara - I have said many times, you and Benjie are amazing people and parents - you are grace personified.

And this blog is never boring - because it's just like having a conversation with you.

Alison said...

My son Andrew has an unknown type of dysauonomia. It is so very similar to FD but includes Adrenal insufficiency also. So at this point we know he has a degenerative disease of his ANS but we don't have an exact name. With the use of treatment protocols etc from Dr. Axelrod we have made his life more 'stable' as such. Andrew is on bipap at night at my biggest fear, as we know his heart rate drops low at night, is that he will go one night. He is on a monitor, for which I am thankful, but also fearful of the night it rings and things are very serious.

I wanted to send big hugs your way.

DESJ and Company said...

Hey-I know you from FD Support..

I didn't know you have a blog-I've added it to my reader.

Thanks for the support.