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.
Tuesday, December 28, 2010
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.
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.
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. Sunday, November 07, 2010
Paper Moon
If I wrote down my life on paper what would it look like?
I am a thirty-three year old divorced mother of a child with chronic illness. I work as a personal assistant where it is my job to pick up drycleaning and make dinner reservations, so someone else can live a successful life. I basically do what no one wants to, what we would all pay someone else to do if we could afford it. That's me. On paper.
I'm five pounds fatter than I was pre-kid (okay seven), and 15 pounds fatter than I was pre-husband. I sweat the small stuff, drive a 98' Saturn, clean my own toilet and scoop kitty poop twice a day. Everything I own is from a thrift store or donated. Our eclectic apartment is basically a permanent garage sale where nothing is actually for sale. Crayon hieroglyphics decorate the walls and Martha Stewart would probably drop dead if she saw how frightfully mismatched our color schemes are. My living room looks like a disorganized preschool, Trader Joe's cooks most of our meals and dog hair rolls down my hallway like tumbleweed.
I'm a writer but I've never been paid for writing. Not a cent. I've been published, but never paid. I have two degrees, and have only used them for crossword puzzles or Jeopardy questions.
I'm a writer but I've never been paid for writing. Not a cent. I've been published, but never paid. I have two degrees, and have only used them for crossword puzzles or Jeopardy questions.
On paper I am not a success. 'I am only a paper moon sailing over a cardboard sea.'
Ten years ago, this would have killed me. If my 23 year old self met my 33 year old self, she would cry. I remember working on my resume in my early twenties, anticipating a writing career. It was full of silly accomplishments and awards I thought would one day lead to a dreamy life. I was so full of myself, so sure I could conquer the world, positive that by 25 I would be writing for HBO. I couldn't wait for my ten year high school reunion where I would brag to all the cheerleaders, "My friend Jen is reading my script....Aniston, you know... oh sorry, I call her Jen. Nothing's set in stone, but she did say it was the best script she's ever read." I had high hopes, a vision of success that would somehow manifest itself into a British accent. Don't ask. Money, husband, child, house, a passionate career doing what I love.
And yet, and yet.
I have a job that allows me to spend everyday with my child. Because Froggy was diagnosed with CF, I decided not to work full-time. I saw her first steps, heard her first words, first everything. When I think about all those hours we've spent doing her respiratory treatments, reading stories, snuggling cheek-to-cheek I think, how lucky am I? I get to hold my daughter everyday for at least one hour without interruption, to tell her how much I love her, how incredible she is, how lucky we are. We read Stuart Little, Dr.Seuss, and her favorites, Peter Rabbit and Benjamin Bunny. Because of her seizure disorder and g-tube we sleep in the same bed. Every night I go to sleep to the most beautiful face. Every night this little body snuggles into mine, her hands finding my face, and I think - This is it. This is what it's all about. I couldn't imagine better.
If success is measured in hours, in moments of pure awe, of watching life happen and being a part of the grand scheme, well I am the guru, the president, the queen bee of success. Yes, I spend a lot of my day on the phone with pharmacies, Blue Cross, restaurant dinner reservations. Most of the time I am taking care of someone else's day, someone else's plans. I make theatre reservations for plays I would love to see, trips to India and Budapest, trips I would love to take. And sometimes I wish I was on the plane, at the dinner, in the writer's room. Sometimes I wish someone else would scrub my toilet. But what would I give up?
What would I give up of this beautiful, chaotic, insane life for one on paper?
I have a job that allows me to spend everyday with my child. Because Froggy was diagnosed with CF, I decided not to work full-time. I saw her first steps, heard her first words, first everything. When I think about all those hours we've spent doing her respiratory treatments, reading stories, snuggling cheek-to-cheek I think, how lucky am I? I get to hold my daughter everyday for at least one hour without interruption, to tell her how much I love her, how incredible she is, how lucky we are. We read Stuart Little, Dr.Seuss, and her favorites, Peter Rabbit and Benjamin Bunny. Because of her seizure disorder and g-tube we sleep in the same bed. Every night I go to sleep to the most beautiful face. Every night this little body snuggles into mine, her hands finding my face, and I think - This is it. This is what it's all about. I couldn't imagine better.
If success is measured in hours, in moments of pure awe, of watching life happen and being a part of the grand scheme, well I am the guru, the president, the queen bee of success. Yes, I spend a lot of my day on the phone with pharmacies, Blue Cross, restaurant dinner reservations. Most of the time I am taking care of someone else's day, someone else's plans. I make theatre reservations for plays I would love to see, trips to India and Budapest, trips I would love to take. And sometimes I wish I was on the plane, at the dinner, in the writer's room. Sometimes I wish someone else would scrub my toilet. But what would I give up?
What would I give up of this beautiful, chaotic, insane life for one on paper?
This is a rich life. Even though I am not rich. My resume is not impressive. But I don't live there. I live here, in my Froggy's heart. And it is a beautiful place.
Right now, a producer is considering me for a tv show.
Right now, a producer is considering me for a tv show.
Ten years ago I would have been cuckoo, putting all my writer eggs in this basket of 'what dreams may come.' And the disappointment of not getting it would have left a bruise. In all honesty, I would love a writing job, but now it doesn't define me, what's down on paper (ironically) doesn't decide my happiness, my worth, my life's value.
And maybe this is where I needed to go. Maybe before I was allowed to taste the fruit, I needed to climb the tree. I have lived a hundred years in the last five. And now, now I am ready. To write. To live. To find success, whatever that means.
And maybe this is where I needed to go. Maybe before I was allowed to taste the fruit, I needed to climb the tree. I have lived a hundred years in the last five. And now, now I am ready. To write. To live. To find success, whatever that means.
"Say it's only a paper moon sailing over a cardboard sea. But it wouldn't be make-believe if you believe in me. It is only a canvas sky, hanging over a muslin tree, but it wouldn't be make-believe if you believed in me. " - from the song 'Paper Moon' by Harold Arlen and lyrics by E.Y. Harburg and Billy Rose.
Saturday, November 06, 2010
Thursday, October 28, 2010
I'm collecting underwear!
A great organization headed by Jane Goodall just received a grant providing sanitary napkins for girls in over 200 schools in Uganda.
Young women in Uganda miss at least one week of school every month because they do not have supplies for their periods. The grant covers sanitary napkins, but not underwear.
A mom friend at Froggy's preschool has taken it upon herself to collect 2300 pairs of underwear for these girls (age 13-17). It's hard to believe but most of these girls will drop out of school because of the simple fact they do not have underwear.
My goal is 100 pairs of undies for these girls. Please help me reach that goal. I'm going to hit Costco and get a couple ten-packs of Hanes-her-way! Email me and I will send you my address if you would like to send a pack of undies. Or send me a check and I'll pick up a pack for you! Thanks.
A great organization headed by Jane Goodall just received a grant providing sanitary napkins for girls in over 200 schools in Uganda.
Young women in Uganda miss at least one week of school every month because they do not have supplies for their periods. The grant covers sanitary napkins, but not underwear.
A mom friend at Froggy's preschool has taken it upon herself to collect 2300 pairs of underwear for these girls (age 13-17). It's hard to believe but most of these girls will drop out of school because of the simple fact they do not have underwear.
My goal is 100 pairs of undies for these girls. Please help me reach that goal. I'm going to hit Costco and get a couple ten-packs of Hanes-her-way! Email me and I will send you my address if you would like to send a pack of undies. Or send me a check and I'll pick up a pack for you! Thanks.
Monday, October 04, 2010
Eight Years Later
Tomorrow is our 8th wedding anniversary.
It's strange to have an anniversary without a celebration, a birthday without cake, Christmas without lights.
Tomorrow will be like any other day, and nothing will be said. The elephant will be hidden before it's officially in the room. But we'll know that this was the day that promises were made, our families gathered, and our lives began.
As strange as it is, the way it turned out, isn't so bad. We are still here, living, breathing, loving Froggy. I think it's important not to throw the wedding toppers out with the bath water. There were good times, a wonderful wedding where two families came together in love. And of course Froggy.
I read somewhere that no matter how terrible the story, if the movie has a rewarding ending, people will walk away feeling like it was one of the best films they've ever seen. We are obsessed with happy endings, no matter how cheesy or contrite. But I'm going to concentrate on the happy beginning, and know that in real life there are always rewrites, a little editing and in the end, even if things don't turn out with the guy getting the girl, or happily ever after, life, real life goes on.
I happen to like movies with a twist. Happy endings make me uncomfortable because they are so forced; a man running to the airport before the plane leaves, a taxi that FOLLOWS THAT CAR, a wedding broken before the vows are read because someone speaks before holding their peace. Life doesn't work out that way because airport security won't let you pass the gate without a ticket, the taxi driver won't risk the speeding ticket, and the wedding must go on because everyone paid too much money for it not to. Life is messy. And in a way I'm glad it is.
This is not the life I thought I would lead. But here we are. My only wish for a happy ending would be that the decisions we make for Froggy are actually about her. That's it. That's all. Froggy happiness. Froggy health. Froggy love. The end.
It's strange to have an anniversary without a celebration, a birthday without cake, Christmas without lights.
Tomorrow will be like any other day, and nothing will be said. The elephant will be hidden before it's officially in the room. But we'll know that this was the day that promises were made, our families gathered, and our lives began.
As strange as it is, the way it turned out, isn't so bad. We are still here, living, breathing, loving Froggy. I think it's important not to throw the wedding toppers out with the bath water. There were good times, a wonderful wedding where two families came together in love. And of course Froggy.
I read somewhere that no matter how terrible the story, if the movie has a rewarding ending, people will walk away feeling like it was one of the best films they've ever seen. We are obsessed with happy endings, no matter how cheesy or contrite. But I'm going to concentrate on the happy beginning, and know that in real life there are always rewrites, a little editing and in the end, even if things don't turn out with the guy getting the girl, or happily ever after, life, real life goes on.
I happen to like movies with a twist. Happy endings make me uncomfortable because they are so forced; a man running to the airport before the plane leaves, a taxi that FOLLOWS THAT CAR, a wedding broken before the vows are read because someone speaks before holding their peace. Life doesn't work out that way because airport security won't let you pass the gate without a ticket, the taxi driver won't risk the speeding ticket, and the wedding must go on because everyone paid too much money for it not to. Life is messy. And in a way I'm glad it is.
This is not the life I thought I would lead. But here we are. My only wish for a happy ending would be that the decisions we make for Froggy are actually about her. That's it. That's all. Froggy happiness. Froggy health. Froggy love. The end.
Thursday, September 30, 2010
Where I go.
"You will not be punished for your anger, you will be punished by your anger." -the Buddha.
This quote hit me like a ton of proverbial bricks. I have been angry. I am angry. And it doesn't matter if I have a 'right' or am justified in my anger. It is all encompassing, it consumes my thoughts, it paints grey on the canvas of my day. It is ugly.
When Froggy and I are alone, I feel like myself again. I'm happy and joyful, motivated by love. I am me, content, silly, and self-sufficient, a little tired... okay alot tired, but at the end of the day we read stories in bed and snuggle and there is absolutely no place I would rather be. It is bliss.
After she falls asleep (and I do dishes, sweep, take out the garbage, let out the dog, boil nebs), I light candles, listen to music, read and write. I actually like being alone, more than I thought I ever would. There are no dishes in the sink, clothes on the floor, tv/radio blaring, life is just ahhhh.
Normally, I am one to fill in the silences, to add words to the spaces, to cover the white with color. Silence and alone have always scared me, but now, now it is a blank page, a tale waiting to be written. And I am patient to put down the words. The story is unfolding, but quietly, in the pauses of life, the moment where we take a breath and imagine what will happen next.
This is where I need to be. I know people jump from divorce to dating, but I have no desire. I am in love with Froggy. My focus, my love, my heart is with her. And nothing could make me happier.
Anger is not healthy. But it is here. It is disappointment, frustration, sorrow, worry, sadness, loss, hurt and betrayal. My anger is 10 years of work, of showing up, of being there 100 percent and being met with apathy. It isn't fair. And I realize life isn't fair, but I'm not okay with it. I don't understand, because I always thought that if gave everything, and believed hard enough, life would work out. I thought we were in it together. But we weren't. One day I was under water and my oxygen tank failed, and I swam and scrambled and drowned but finally made it to the surface. And here I am. Angry that it didn't turn out the way I'd wanted, but alive, still floating in this beautiful sea of life, looking up towards the sun and waiting for the wind, to push me in the direction I am supposed to go.
This quote hit me like a ton of proverbial bricks. I have been angry. I am angry. And it doesn't matter if I have a 'right' or am justified in my anger. It is all encompassing, it consumes my thoughts, it paints grey on the canvas of my day. It is ugly.
When Froggy and I are alone, I feel like myself again. I'm happy and joyful, motivated by love. I am me, content, silly, and self-sufficient, a little tired... okay alot tired, but at the end of the day we read stories in bed and snuggle and there is absolutely no place I would rather be. It is bliss.
After she falls asleep (and I do dishes, sweep, take out the garbage, let out the dog, boil nebs), I light candles, listen to music, read and write. I actually like being alone, more than I thought I ever would. There are no dishes in the sink, clothes on the floor, tv/radio blaring, life is just ahhhh.
Normally, I am one to fill in the silences, to add words to the spaces, to cover the white with color. Silence and alone have always scared me, but now, now it is a blank page, a tale waiting to be written. And I am patient to put down the words. The story is unfolding, but quietly, in the pauses of life, the moment where we take a breath and imagine what will happen next.
This is where I need to be. I know people jump from divorce to dating, but I have no desire. I am in love with Froggy. My focus, my love, my heart is with her. And nothing could make me happier.
Anger is not healthy. But it is here. It is disappointment, frustration, sorrow, worry, sadness, loss, hurt and betrayal. My anger is 10 years of work, of showing up, of being there 100 percent and being met with apathy. It isn't fair. And I realize life isn't fair, but I'm not okay with it. I don't understand, because I always thought that if gave everything, and believed hard enough, life would work out. I thought we were in it together. But we weren't. One day I was under water and my oxygen tank failed, and I swam and scrambled and drowned but finally made it to the surface. And here I am. Angry that it didn't turn out the way I'd wanted, but alive, still floating in this beautiful sea of life, looking up towards the sun and waiting for the wind, to push me in the direction I am supposed to go.
Wednesday, September 22, 2010
Iowa State Fair 2010
Now THIS is a turkey leg. Cro-Magnon Froggymama!
This was taken at the new birthing center at the fair, where you can watch piglets, calves, goat kids and sheep gittin' borned! 
The fattest hog! Over 1100 lbs.
The highlight was watching the chicks hatch. One chick after hatching, helped his friend out by cracking on his egg.
Every year they build a giant sandcastle. This year's theme "Star Boars." If you don't like kitch, you won't like the fair. I happen to LOVE this stuff!
We spent 2 hours in the bunny barn. Gee, ya think someone wants a rabbit?
She petted every single rabbit. There were only about a thousand.
True to Iowa fair weather, it was 100 and humid.
Froggy eating a wonderbar. She ate the entire thing and this kid never eats all her food. Maybe a diet of fair food will be the cure-all to her weight issues. Mmmm fair food.
She milked a cow on her first try!
A giant pumpkin and an even bigger twit!
Everything at the fair is giant! Even the slide.
Auntie Honka and the Frog.
Tuesday, September 21, 2010
Monday, September 20, 2010
Saturday, September 18, 2010
Froggyisms and Body Talk
Froggy: My friend at preschool has a car that's a Volcan-wagon.
While getting ready for bed the other night I was having a tough time with her g-tube. The adaptor wasn't fitting and it came apart and formula went everywhere. I put a towel down because I was too tired to change the sheets. An hour later I hear her calling and she is lying in bed in a pool of formula. After finding a new adaptor and taping the hell out of it, replacing the first towel with a second because now I was even more tired, Froggy says to me:
Froggy: I want a plain body.
FM: What do you mean a playing body?
Froggy: No a plaaaain body.
FM: What's a plain body?
Froggy: Without the mic-key. I just want a normal body. I want my normal body again.
I hugged her and told her I know and she fell asleep. Then I went into the livingroom and had a good cry.
I can't believe that at the age of five she is so aware of what 'normal' is. We were desperate to have her gain weight and so thrilled with her progress, I'd almost forgotten that she will have to live with this thing, this piece of plastic that pushes her shirt out and sets her apart. Her preschool friends love her and no one has said anything unkind. In fact her little friend A. jumped up and down and said, "I wanna see your mic-key!," when we got back from the hospital.
We made a decision for her body. We decided that she would have this hole in her belly. And even though I believe it was the best decision, it seems unfair to make a decision about someone else's body. She wanted a plain one and we give her this. I hope someday she'll understand.
While getting ready for bed the other night I was having a tough time with her g-tube. The adaptor wasn't fitting and it came apart and formula went everywhere. I put a towel down because I was too tired to change the sheets. An hour later I hear her calling and she is lying in bed in a pool of formula. After finding a new adaptor and taping the hell out of it, replacing the first towel with a second because now I was even more tired, Froggy says to me:
Froggy: I want a plain body.
FM: What do you mean a playing body?
Froggy: No a plaaaain body.
FM: What's a plain body?
Froggy: Without the mic-key. I just want a normal body. I want my normal body again.
I hugged her and told her I know and she fell asleep. Then I went into the livingroom and had a good cry.
I can't believe that at the age of five she is so aware of what 'normal' is. We were desperate to have her gain weight and so thrilled with her progress, I'd almost forgotten that she will have to live with this thing, this piece of plastic that pushes her shirt out and sets her apart. Her preschool friends love her and no one has said anything unkind. In fact her little friend A. jumped up and down and said, "I wanna see your mic-key!," when we got back from the hospital.
We made a decision for her body. We decided that she would have this hole in her belly. And even though I believe it was the best decision, it seems unfair to make a decision about someone else's body. She wanted a plain one and we give her this. I hope someday she'll understand.
Thursday, September 09, 2010
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