Sunday, October 26, 2008

Defining Moment/Not Me Monday

I'm renaming my "Not Me Monday" Post. Reason will be obvious as you read.

First I will give you my not me's:

I did not have my kids' backpacks packed up, lunches, snacks, and homeworks, all ready to go, at 3pm this afternoon. Thank G-d for the end of vacation!

Remember the car from last week that smells like something died?

Well I would NEVER still be ignoring said odor and just toodling around in the stinkiest minivan known to man. Kinda still hoping Benjie will deal with that.

Now onto my most major "Not Me"

I don't ever, ever wonder what my life would be like if Dovi had not been Dovi. As in if he had just been Dovi, and not "Dovi with FD". Ooh, deep. You didn't expect this, didja? You were expecting my usual funny not me's. Well, I gave you those. This is a blog about Life with Dovi, not Sara's life. So you're getting the Dovi crap now.

Some people can easily pinpoint the defining moment of their lives. The exact second when their lives changed forever. I am one of those people. Dovi was born at 7:31 am on November 13, 1997. At that exact moment, my life as I previously knew it was over. There's before, and there's after. And there is really no correlation, no similarities between the two. At 7:30 am, I was the blissfully ignorant, immature, clueless 20 year old about to have her cute little baby-toy honeymoon baby with her hot hubby of 8 months (yes, he was one month early, all you jokers out there). At 7:31 am I was the parent of a terminally ill child. But I didn't know it yet.

My entire life has been changed by that minute. Seriously. My child spacing plans have changed. My family size plans have changed. My career plans have changed. How I spend my time has changed. My friends have changed. My attitude has changed. Everything has changed.

I had this vision of having my kids crazy close together. Like MckMama close. (hey that's my mention back to MckMama on Not Me Monday). Like Benjie and I joked when I was pregnant with Dovi that we should just buy a double stroller because we'd be filling the second seat within a year or so. Instead I have an almost 11 year old and three 6 year olds. That's not exactly close together.

I wanted kids. Lots of kids. I love being pregnant (I know, I'm a freak). I love kids. I insanely love babies. Everyone knows that. I'm the nut at the park who grabs your baby, holds it for a while, and smothers it with kisses. While you watch to make sure I don't kidnap it. I have four kids. That's not a small family, by any stretch. But who know what will be in the future? The D man keeps me busy.

I was going to be a CPA. Instead I am a bookkeeper. I work maybe 26 hours per week, but my hours are dictated by Dovi's doctor/therapy schedule, not by my kids' school hours. I physically can not work more hours, no matter how much I'd want to. Because Dovi needs stuff.

I now spend much of my spare time running from doctor to therapy to school. Special ed school. I also spend much other time on the phone, fighting and cajoling people to give Dovi what he needs, what he deserves. It is not fun.

I have two close friends from before Dovi. That's all. I don't think anyone else was ready to deal with the enormity of Dovi meant to me, and by extension, them. Things change. Friends change. Which brings me to:

I now have a low tolerance for crap and bullsh**. Benjie teases me about it all the time. But here's the bottom line. I don't have time for crap. I've got things to do, people to fight with see, and don't waste my time.

So I wonder, what would it be like in my life, with no FD, no Keshet, no Chai Lifeline (speaking of which, if you live in Chicago, have kids, and like entertaining them, or even don't have kids but like having a good time, please come to Chai Lifeline's event this Suday-EsKape! Benjie has worked his tuches off for this event!), no Camp Simcha, no ENH Therapy Clinic, no Speech with Gail, no Walgreens, no midnight pharmacy runs, no nurse overnight in my house five nights a week, no DSCC, no fighting, no exhaustion (Dovi was up 10pm-2am Saturday night-we seem to have cycled back into a non-sleeping mode), no ...anything.

What would I do? Seriously? How would I spend my days? I can't even imagine.

But all this rambling brings me to one ultimate conclusion:

How I spend my days, how the D man is, is exactly the way G-d wants it to be. I can not, and will not ever claim to have any understanding whatsoever why G-d found it necessary to give Dovi FD. Frankly, I think it 100% totally sucks. I cannot in any way, shape, or form, no matter how much I wrack my brain, come up with one redeeming factor of the FD for Dovi. I got to make lots of friends I would never have met, etc etc etc. But that's for me. For Dovi? Not so much. Frankly, there is no good, in my humble opinion, in, for example, waking up every. morning. of. your. life. retching. As in he'd be puking if he didn't have a fundoplication. It's not enjoyable.

So instead of killing myself trying to understand, I have to say that obviously it has to be that G-d has a plan for Dovi, for me and Benjie, for my family, for the world at large, greater than me, or Dovi. If I spent time dwelling on that, I would literally be living in the loony bin. I would not be able to carry on. So, I know, I truly believe in my heart of hearts, that for whatever reason, my life is exactly how it should be. It's nothing like I planned. As you read, NOTHING like I planned. Seriously-who's life is this? Certainly not what I mapped out. But it's how it's supposed to be.

So that's that. Deal with it. (remember, I have a low tolerance for bullsh**!)


WriterGrrl said...

I have thought about this so much lately, that blissful ignorance of Life Before D. Back when I just had the girls and everything was so. damn. easy. And how the only life Baby J. has known is life with a SN sib. And how being a SN mom completely defines me.

Oh, I so hear you, Sara. I don't know if that makes any difference at all, but I so hear you.

DESJ and Company said...

oh writergrrl...wishing you lived here, not there.
I think we'd be friends.

Anonymous said...

I sure do know what you mean. And I had my FD child when I was in my 40s, so I already had my career and was okay with scaling it way back. The moment my life changed was when he was two weeks old and the pediatrician said, go straight to the hospital and do not even think about going home first, and here are the directions to the hospital. Yup, lots of great people in my life, but what's in it for him? Suffering, but he's a joyful child anyway. Illness, but as soon as he's better it's as if he were never ill. Disability, but he just creatively figures out ways to be totally himself regardless. Shunned by other children, so he lives in a rich world of his own imagination. I could go on and on. Thanks for the deep thoughts today.


Orah said...

So poignant

Anonymous said...

Man makes plans G-d laughs.

Shosh said...

i am in constant awe of your ability to be so darn organized and everything with all that you have on your plate. i know its how you stay sane, but still, its totally impressive. this was an awesome post, if everyone shared like this, if everyone wrote about their real struggles, and didnt show their happy face all the time, i think we'd all be a little nicer to each other and the world would be a better place, u know?

connie said...

I can't even think of my favorite part of this post; there was one after another. We could be sisters. Except you, the one who says it better!