Monday, March 14, 2011

Froggyisms

I have been terrible lately about writing down Froggyisms.

A week ago on a hike Froggy ran down a hill and said, "Go for it Mother Nature!"

When we came to a grassy clearing, she said, "It's so bright it looks like we're in a cartoon." And it did. After the rains, the greens were almost neon and surreal. It was one of the best hikes we've ever had. She's at this incredible age where she wants to know EVERYTHING. And now that I own a smartphone Mommy can google all of her questions! And I appear much smarter than I actually am.

Today while reading some of the tsunami news on my computer while doing Froggy's treatment, she saw a photo of the earth from space, and quipped, "Do earth cameras work in outer space?" I told her they probably have special cameras that can take photos of things from far away in great detail. To which she replied, "Can we get one?" Yeah honey, let's put space camera on your birthday wish list.

Sunday, February 27, 2011

Dirty Laundry

I have written 50 blog posts I can't publish.


I can write about being a mom, I can write about CF, about Froggy, about being a writer, about Los Angeles, about a million things. But I can't write about the big D. How could I write about that without hanging our dirty laundry on the cyberspace line?

And yet it encompasses so much of our lives. It is our everyday, our new life, yet it mostly remains private. We have to keep up appearances and pretend that a family didn't really break up, that everyone is still whole. That a child isn't in the middle. Because that would be embarrassing. So we'll smile and nod and just hop over that great chasm that is... well you know.


I can say that I'm tired, disheartened, frustrated, over-worked and angry.

The other day I heard a quote that made the hair on the back of my neck stand up:

"Anger is like drinking poison and expecting the other person to die."

Every day I drink this poison, when I come home to dirty dishes, a list of calls, a stack of bills, a dusty house and there is no partner, no one at 9pm when the dog needs to go out and the clothes are in the machine downstairs, and I still have nebulizers to boil, meds to prepare, and all I want to do is say, "Someone else do it!"


Someone else get up in the middle of the night, someone else wake up to the dog and the cats and the kid, just for one day." And when I do ask for help, there is instant regret. Because the repercussions of entitlement, apathy, or passive aggressiveness are worse than just doing it myself. Okay, maybe a little dirty laundry. Just a bra or sock. What do you expect?

When I ask for help it's what a mom must feel like when she asks her teenager to clean her room. Clothes shoved under the rug, a naked mattress, and a moldy cheese sandwich in the closet. The bare minimum, just enough to say, "I did what you asked, geeeeez." But it never resembles actual help. And ultimately, I come in, rake the clothes out from under the rug, put the sheets on the mattress, and throw away the moldy cheese sandwich.

And then I find myself chugging poison like it's red kool-aid in a South American cult. Because asking for help and getting half-ass is worse than nothing. It looks like help, it smells like help. But it isn't help. It's the cardboard cut-out of help.

Every night I go to bed with the weight of the world on my shoulders. Ultimately, realistically I am responsible for Froggy. What doctors she sees, what school she attends, if her clothes are clean, if she's had her meds, if her bed is made, prescriptions called in, if her teeth are brushed. It's up to me. And it's tough and it's even tougher keeping it to myself. So I'm sorry if I threw in a sheet or two, a towel from the hamper. But you should've seen the other 50 posts.

Monday, January 31, 2011

Books Read 2010

Memoir

Sixty Five Roses - A Sister's Memoir - by Heather Summerhayes Cariou - incredible book about a family dealing with CF. Told from the sister's POV. It was tough to get through emotionally, but the parents were incredible. Their devotion and endurance was something I will never forget. Not sure I will ever live up to their tireless dedication.

The Kid - by Dan Savage - Hilarious memoir about a man and his partner going through the trials and tribulations of an open adoption. David Sedaris has nothing on Dan Savage. It was laugh-out-loud, pee your pants funny and then cry a little kind of book. Not for the faint of heart, so if you're even the slightest homophobic, don't read, and yet, maybe you should.


Non-fiction


Parenting Children With Health Issues - by Foster Cline and Lisa Greene - I have to re-read this one. It had fabulous advice for kiddos struggling with treatments and the emotional junk that goes along with CF. It stresses how important natural consequences are and if you protect your child from consequences you're not protecting them, you're robbing them of experience. Loved this book. I hope to live up to it. Not only will I no longer protect my kid from her consequences, but I'll never protect anyone else. This book goes to the heart of the 'enabler,' and says, "knock it off!" Lesson learned.


When Everything Changed - The Amazing Journey of American Women From 1960-the Present - by Gail Collins - Wow, this book taught me that I learned nothing in school or college. And I took a ton of women's lit, feminism classes, but still learned so little about the actual history of women... what a great book about how far we've come, and how far we have to go. Even in the 1970's a woman who paid a parking ticket dressed in pants was sent to jail for not wearing a dress! I am so thankful for the brave women who paved the way for jeans, my job and freedom!

The Good Divorce - by Constance Ahrons - You mean I'm not an evil woman going to hell for getting a divorce? Whew. This book was incredibly insightful and helpful about the horrible process of divorce. It sucks by the way, the process, not the book.

Stiff - the Curious Lives of Human Cadavors by Mary Roach - A good book to follow The Good Divorce. Anyway, I'm always keen on the macabre, and this one takes the decomposing cake. A fascinating read on what happens after. Surprisingly funny.

A Case for Creation - by Lee Strobel - I've been meaning to write this play about a man who becomes born again, but three years later I'm still doing the research, anyway.... This was a very interesting book about the miracle of life. It doesn't matter which side you stand on, creation vs. evolution or a combo of the two, how we came to exist is fascinating.

Stranger Danger - How to Keep Your Child Safe by Carol Soret Cope - A great book to keep your kiddo safe.



Short Story Collection


Too Much Happiness - by Alice Munro - Okay, I appreciate the art of the short story. It is one of the most difficult literary forms. But I've found most compilations too easy to put down, unlike a novel. Not so with this one. I read it during Froggy's treatments, doing dishes, walking down the hall. It was beautiful, impossible to put down, one of my all time favorites! Thanks Grandma W. for this wonderful gift.


Bad Dirt - by Annie Proulx - Another incredible book of short stories. Beautiful, dark, stark, simple.


Fiction


The Lacuna - by Barbara Kingsolver - I've read just about everything Ms. Kingsolver has written. She is a master storyteller. Love, love, love her.

Dear American Airlines - by Jonathan Miles - Very funny book about a father stranded in an airport on his way to his estranged daughter's wedding. What begins as a complaint letter, ends as a life confession that is a wild, funny, meaningful ride.

Away - by Amy Bloom - Very enjoyable novel.

A Separate Peace - by John Knowles - Pretaay good.

The History of Love - by Nicole Krauss - Go, buy, read. My favorite novel this year. Lovely storytelling, interesting characters and a whole lotta lovin'. This was the first book since The Shadow of the Wind that it actually hurt to reach the last page.

One Good Turn - by Kate Atkinson - I know everyone is coo-koo for The Girl With the Dragon Tattoo, and I am too. But Kate Atkinson is underrated. Her mysteries are fantastic.

Little Bee - by Chris Cleave - Just okay. Loved the first half, but it lost it's fizzle and believability in the second half.

A Visit from the Goon Squad - by Jennifer Egan - I didn't expect to love this book about a band and it's players as they aged. But it was suprising, funny and the only novel I've read that in one chapter took you on an African Safari and the next, a lesson in powerpoint.

Research for Work:

State of War - The secret History of the CIA and the Bush Administration, by James Rise

Vice: Dick Cheney the Hijacking of the American President by Lou Doose and Jake Bernstein

Bush at War by Bob Woodward

What Happened: Inside the Bush Administration and Washington Culture of Deception by Scott McClellan

Cheney: The Untold Story of America's Most Powerful and Controversial Vice President, by Stephen F. Hayes

No comment. I have enough problems. :)



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.

Monday, January 10, 2011

Early Christmas in LA






Christmas in Iowa

One of her favorite presents was a Barbie and her pooping dog.

Froggy decorated the tree with kitty toys and pipe cleaners. Of course!

A very ugly ornament I made as a kid that somehow
always makes it's way to the back of the tree.





Christmas Eve.




Iowa Winter 2010 Part II.













Saturday, January 08, 2011

Iowa Winter 2010 Part I.



Froggy and Cousin E-boy. Two silly peas in a pod.


I LOVE the joy on her face.



Tuesday, December 28, 2010

Froggyisms

Froggy comes downstairs in her undies where Auntie Honka and I are watching TV. She has her mimi under one arm and a box of Nerds in her other hand and says, "NOW it's a party."


I dropped Froggy off at my dad's vet clinic while I did some last minute Christmas shopping. Grandma S. works there too, and my dad had the day off. Froggy stood at the door waiting for the animals to come in. She had a box of treats and wanted to great them as they entered. After a while of no visitors...

Froggy: Why aren't there any animals here?

Grandma S: Because Papa isn't here. And they come to see him.

Froggy: Well what do you do?

Grandma S: I do the books, pay bills, clean, file, make calls.

Froggy: Oh, so you do the WORK.


Froggy playing with a doll.

Froggy: She's sick and has a disease.


FM: What disease is it?

Froggy: Apopopria

FM: What's that?

Froggy: A very bad disease.


FM: What does it do to her?

Froggy: It tries to kill her lungs.

Froggy is trying to process CF and it comes out in her play. She always has one stuffed animal, doll, figurine with CF. A few days ago, while playing with her ponies, this was her conversation.

Froggy picks up her purple pony and explains to the other ponies:


Froggy: This one has Cyxtic Fabrosix.

Her pony plays with the others for a while and then in an empathetic voice says to the other ponies...

Froggy: She isn't free. Cause she has Cyxtic Fabrosix.

Thursday, December 09, 2010

CF Clinic

Froggy had her CF Clinic Appointment Friday. She weighs 37 pounds, is 108 cm. And despite a nasty cold was still 100% on her PFT's. Her smaller airways were only 93% but that's to be expected with her cold. She's in the 25th percentile for weight and 50th percentile for height. The nutritionist thinks she should have gained more weight, so we're switching her formula to one where the proteins are already broken down so her body has to do less work.

Her bloodwork was a-okay! We're just waiting to hear about her sputum culture. So far, no pseudomonas! Woo Hoo! Tomorrow we'll know more. Night night.

Froggyism

Froggy loves playing with her doctor kit. She heals all of her dolls and stuffed animals with potions and shots. The other day Froggy was trying to find my heartbeat with her stethoscope and after listening intently for a while she said, "just as I suspected, you have slow heartbeat-itis." Well, there you go.

Thursday, December 02, 2010

Lilies by Mary Oliver

From her book HOUSE OF LIGHT


Lilies


I have been thinking
about living
like the lilies
that blow in the fields.


They rise and fall
in the wedge of the wind,
and have no shelter
from the tongues of cattle,


and have no closets or cupboards
and have no legs.
Still I would like to be
as wonderful


as that idea.
But if I were a lily
I think I would wait all day
for the green face

of the hummingbird
to touch me.
What I mean is,
could I forget myself

even in those feathery fields?
When Van Gogh
preached to the poor
of course he wanted to save someone-


most of all himself.
He wasn't a lily,

and wandering through the bright fields
only gave him more ideas


it would take his life to solve.
I think I will always be lonely
in this world, where the cattle
graze like a black and white river -


where the ravishing lilies
melt, without protest, on their tongues-
where the hummingbird, whenever there is a fuss,
just rises and floats away.



by Mary Oliver



This poem is one of the many reasons I am in love with Mary Oliver. She writes simply, without pretension, and packs the world and all of it's complexity in just a few words. "I think I would wait all day for the green face of the hummingbird to touch me." That lines strikes me now as I am in wait for a new life, in this strange in-between world. And "there is no shelter from the tongues of cattle."

Across the road from my parents house cattle grazed and one day, I stood on the fence face-to-face with a cow. I was studying the length of her eye lash, when she licked my cheek. Her tongue was the size of my kid arm and the intensity, the strength of her tongue was like someone slapping you in the face while screaming "I LOVE YOU!" It wasn't sandpaper it was like a sandblaster exfoliating my face with bovine slime. Her breath was milky, which I never quite understood. And then this big beautiful beast looked at me like, "That's love lady - shocking, painful, wet, milky and kind."



It was such a profound experience and in my fleeting childish devotion, I became a vegetarian for one week. What I love about her poetry is she takes you back to a moment when everything made sense and elegantly simplifies that moment. Life, love, cows. Oh my.

Tuesday, November 23, 2010

Froggy Gorilla Grandparents

Today we hit the zoo and Froggy bonded with a grumpy gorilla. It appears both needed a nap.

An old school house winery in Arroyo Grande.


Papa enjoying the sunshine and a nice pinot noir.

Grandma S. basking in the Central Coast sunshine.


















Papa G. and Grandma S. were in town and we drove to the Central Coast for a winery tour and on to one of my favorite cities San Luis Obispo. We also visited the mission in San Juan Capistrano and LA. Zoo. It was such a wonderful week and went by waaay too quickly. Love and miss you already.