Wednesday, January 12, 2011

I'm kind of over it.

How it's supposed to be. I don't really care anymore how it was supposed to be. Had things been perfect, had Froggy not been born with CF, had our marriage lasted, had things turned out the way you hope it will in the beginning .... when you're standing in a room full of family and friends in a white dress and everything is ahead of you. And it is all hope from that moment on.

As Madeleine says to the tiger, in Froggy's favorite movie, "poo poo."

This best laid plan went awry, and guess what? Oh well.

I love my kid. I love being alone. The work, the time involved, the responsibility I have is overwhelming, but at the end of the day I think this: I live in Los Angeles, where it is perpetually 70 degrees. I have friends that if you looked up the definition of the word in the dictionary you would find their pictures, smiling and asking, "what can I do?" My family although far away supports us in a million loving ways.

We are not hungry. We are free. We are able to live our lives without the threat of malaria or warfare, without poverty or destitution. My child has healthcare. And even though it is a major pain in the ass, we have it, and we are the lucky ones. We have a lovely apartment 100 feet from a park. We live two miles from the Pacific Ocean and ten miles from the mountains. I have two bosses. One is a writer, the other a director, and they are both the nicest guys in Hollywood. After every assignment or project they thank me profusely. My hard work is appreciated.

I struggle and somedays I have to repeat a very loving mantra so I don't strangle a certain someone, to 'live and let live, live and let live, live and let live," and later, I feel better and can go about my day because it is not my job to live anyone else's life. I am only accountable for me. And that took a long time and a lot of therapy to realize.

Tonight I went to a Kindergarten open house and met with the principal of Froggy's potential school. I told her that my kiddo has CF and asked questions about the nurse's schedule and their health policy. And at the end of our conversation she gave me that look that a lot of people give when I tell them my kid has CF, that "oh poor you" look. And I didn't want it. Defensively I said, "Froggy is totally healthy, I just want to make sure she stays that way."

There is such a fine line between pity and empathy. It's only distinguishable by moms of kids who have 'special health needs.' On one hand you want people to take your child's healthcare seriously and not say stuff like, "Oh I'm sure they'll find a cure," like "I'm sure Diet Coke will come up with a more tasty formula." But at the same time, you don't want that LOOK, that "Sweet Jesus, you're child is dying, how do you cope? I'm so glad my child is healthy, but I feel guilty, so I'm just going to stare at you with major sympathy," look. We all know that look because we know how we would look at someone had our best laid plan actually happened.

I could scream a million times a day to people who don't get it, who don't know how lucky they are, I could say, "Your kids are healthy, why, why are you bitching about how it took your Pediatrician 35 minutes before they saw you, when we are at the doctors office for 7 hours!" And I bite my tongue because I know that when I complain about our hospital or PFT's or CF stuff, someone with CF in their 20's or 30's, who has had a transplant or two, who has lived through and survived the darkest hour is saying the same thing to me, "Who cares that she spent 7 hours at the CF clinic, your kiddo can breathe. Enjoy these years. Because later, later, later?"

It is all perspective. It is all perspective. Everyday I must remind myself of this. It would be easy to say, "I'm a single mom of a kiddo with CF, my career is on hold, my husband left, my dreams are deferred, I don't know what will happen, poor me." But I'm over it.

I am so lucky. Not everyone has a Froggy. Being a single mom was not my plan. This was not my idea of "perfect" but who cares? There is no point to the what-if's. What-if's are for people who have the time to feel sorry for themselves. And I don't. My kiddo is five and then she's ten and then she's thirty. And I don't know what that will look like. I don't know how much time we have where she has the breath to swim and climb and play. So I don't have time for 'supposed to be.' Who cares. This is our life. Our life and it deserves to be lived. No matter how long. No matter how perfect. No matter. No matter.


Azer's Mom said...

(applause) I don't know how you do it girly, but you always manage to write down exactly what I feel. It's so weird that you feel so exactly what I think.

I had to quote you here.

"But at the same time, you don't want that LOOK, that "Sweet Jesus, you're child is dying, how do you cope? I'm so glad my child is healthy, but I feel guilty, so I'm just going to stare at you with major sympathy," look." --- Umm ... YEAH. I hate that, and get that daily. Your exactly right.

Thanks for putting things in perspective. I don't know how it will be in 10 or 30 years.

Anonymous said...

Well said! We all need a little reminder about how lucky we are to have children like froggy in our lives. Max makes us laugh, makes us think... We've met some great people IRL and online because of the cf diagnosis...

BTW, Lisa Greene has some great suggestions for starting school on her site.

Ratatosk mom to max age 7 wcf

Jamie said...

I'm new to your blog, but I just wanted to say that I love your writing. Very powerfully written. And I think I may one of the people giving the 'I'm so sorry' look for lack of knowing how else to look. Mostly I don't say anything because I don't know what to say, and I don't want to sound insensitive or say the wrong thing.

PicklePits said...

Thank you Elise. I needed that. I really, really needed to read that today.

Dammit, You are such an amazing writer, mother, friend, amazing EVERYTHING.


Rach said...

I'm so happy to have you as my friend. You have so much guts, so much honesty and so much heart. And, you're pretty good at putting words together, too. xx

Froggymama said...

Thank you everyone. I'm so fortunate to have such a great online community of friends!

Anonymous said...

gosh...this is good...xoxoxo jcn

T-Rex said...

I love you, Elise! :)
Froggy too.

iColossus / Monster said...

Hey girl...about time for a Pitfire Pizza dinner!

Well done. I don't want to say "I'm proud of you" because that sounds patronizing. So I'll say I'm proud FOR you.

This attitude you have earned and won is really amazing and extraordinary, because it's the triumph of perspective over circumstance. Seriously.

Your humanity moves me, and I hope it moves you as well.

You really ARE lucky, FM. Froggy is healthy, and she is such an incredible, unique, WITTY, intelligent girl who is making an impression on this world. Gosh, I hope you're so proud of that!!!

Every now and some compassion to yourself. Because you're pretty effin' your character, as a woman and as a friend.

I'm proud to know you!

T-Rex said...

I love your yearly book review list! each year i copy/paste suggestions from you i the hopes that someday - maybe someday - after college I will read tons of books for pleasure! :)

I do have history of love sitting on my bookshelf already but haven't read it yet - i picked it up based on a used book store worker's suggestion. now it looks like i really need to read it!

thanks elise! xoxo

PicklePits said...

Hope you don't mind but I'm tagging you for an award. Stop by tomorrow for the nitty gritty. If Hollywood won't recognize you, I sure as hell will.