Froggy Mama

February Froggyisms

2012-02-02T07:40:00.000-08:00

"I wish I had a cheetah so I could run with it all day, and never catch up." - Now she knows how I feel.

While playing with her stuffed mouse, Froggy put a sea shell up to the mouses ear and said, "She's talking on her 'shell' phone."

We've been reading Charlotte's Web and the very last word Charlotte writes in the web is "humble." Froggy asked the meaning of the word. I told her it means that you're not full of yourself or think you're the best person in the world. She thought for a second and said, "Yeah, I'm not humble." I agree, but atleast you're honest.

2012-01-08T22:32:00.000-08:00

The Journey
By Mary Oliver

One day you finally knew
what you had to do, and began,
though the voices around you
kept shouting
their bad advice—though the whole house
began to tremble
and you felt the old tug
at your ankles.“Mend my life!”
each voice cried.
But you didn’t stop.
You knew what you had to do,
though the wind pried
with its stiff fingers
at the very foundations,
though their melancholy
was terrible.
It was already late
enough, and a wild night,
and the road full of fallen
branches and stones.
But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into the world,
determined to do
the only thing you could do—determined to save
the only life you could save.

Fab Froggyisms

2011-12-31T22:22:00.000-08:00

While at dinner the other night I told my Aunt J. she should come visit us in California. I was explaining that ticket prices aren't that expensive and they would be welcome to stay with us. Froggy looked up very seriously and authoritatively and said, "Our house is not a hotel!"

Papa Gus was telling Froggy that he didn't really listen to music that much anymore. He used to listen to it as a kid, but didn't care for it anymore. Froggy could not believe her ears and said, "Papa, not liking music is like not liking puppies."

In the meantime

2011-12-25T20:21:00.000-08:00

Froggy is terrific, healthier than she has ever been. Her BMI is 50, her lung function between 106 and 114 (PFT's), her bronchoscope was wonderful and she has very little mucus in her lungs. Her Pulmonologist said her lungs are beautiful. Beautiful! CF lungs - beautiful. Wow.

She's thriving in Kindergarten. The kids at school love her. She is a good friend. She's learning to read and her teacher is one of those rare souls who harnesses the true joy of learning. I volunteer and cannot believe the dedication and energy that goes into each lesson. And most importantly, they are teaching kids to be good people, stressing empathy and responsibility. The kids in her class are smart, funny, interesting children. It blows my mind.

Life is tough as a single parent. Managing Froggy's health care on my own, working 2 part-time jobs, taking care of three pets, fundraising, and coordinating custody has taken its toll. I'm busy, exhausted, but complete. As tired as I am, there is fullfillment, appreciation, and with new joy in our home.

I know I can never do it all. Living two thousand miles from my family, I do not have the natural support system that allows me to do it all. I'm always failing someone, my boss, Froggy, the house. It is impossible to do it all. And I try to forgive myself for not being able to manage it with grace. My kid shows up to school late, her homework isn't always complete. But she's healthy. She's healthy and THAT is my numero uno. Everyday I make sure she eats a huge breakfast, lunch and dinner, gets plenty of exercise, does her treatments, a sinus rinse, feeding tube and meds. After school, I make sure she has some good ole unstructured playtime. We read atleast 30 minutes every night. I schedule the appointments and talk to other parents, I read the literature about CF and parenting. I prioritize and if I fail at having the best dressed kid, or the most punctual, if dinner isn't gourmet, if her hair isn't always brushed, well, I am doing the best, the best I can, running myself ragged for sometimes the very least.

There has been plenty of judgement, snarky tones, rude looks, rolled eyes, unkind words, and it is so difficult because no one really understands. People think they can step into our shoes, but unless you're here, doing it, there is no room. I prioritize in ways I never thought I would have to. When we wake up, Froggy has a g-tube feed, meds, treatment, a sinus rinse, usually a bowel movement (that is contingent on everything else), plus a big breakfast, getting dressed, hair brushed, teeth brushed, lunch packed, so sometimes we're late. I understand that her sleep is important, sending her to school with food in her belly is important (because she won't eat at school), knowing the sinus rinse will prevent yet another sinus infection is important. And she can't do any of it until she poops. Because she has gastritis and chronic constipation, and doing her treatment at 6am before all of this hurts her belly, so I deal with the rude comments from people who don't get it. And I get an earful about what a terrible parent I am for taking Froggy to McDonalds twice a month. And I know I shouldn't let these ignorant and defensive attacks hurt, but they do. And the moment I say, "Instead of judging me, why don't you help me," those comments die down for a while.

I don't judge anyone anymore. The last six years I have learned that. Big time. You never know what someone goes through, what they are up against. Unless you are a fly on the wall in every moment of someone else's day, forgetaboutit. You don't know nothin'. I was judged for introducing my child to my boyfriend. I was called horrible names, called a bad mother. As if suddenly I was not the same mother I've been for the last six years. Suddenly, as a single woman, I am wreckless and carefree. Of course I was careful. I always am. I introduced this new person slowly and as a friend, transitioning him from a part of "the gang" to part of our life. And now this person is not only a huge part of my life but Froggy's as well.

There are many mornings when I wake up and think, "I just can't." But I do. I'm not winning any awards. I lose my temper. The cats are neglected. Our sink always has dishes in it. Always. I know I'm not perfect but I do my best.

Froggy struggles with anger and obstinance. She is a tough cookie with a short attention span and more sensitive than she lets on. I know this divorce has affected her. I know she is changed because of it. I also know that it was the right decision and looking back, I cannot imagine living the way we did. I did the right thing. But still.

There is joy in our home, a sense of family that we've never had. There is kindness and respect, dinners around the table, consistency and love. When my friend had a baby, she said that her husband loved the new babe, but his first priority was her. That support allowed her to take care of the baby. And without that, she would have not been the best mother she could be. I understand that now. You need the man to support the woman so the woman can take care of the babe. As caveman as it sounds, it works. And it isn't selfish to have a partner. It's necessary. It's beneficial. Good for Froggy and me. Good for all of us. And I'm going to stop defending myself because my friends and family know how hard I work, how my numero uno has been and always will be Froggy. Always. And everything else is just noise. In the meantime I'm going to enjoy this girl. This incredible, frustrating, intelligent, funny, complicated, smart, sweet little Froggy.

Pillow Talk with Froggy

2011-10-18T22:41:00.000-07:00

After three books and many pleadings from me to "GO TO SLEEP!," Froggy asked me to tell her a story about when I was little. She's now six years old and has been asking this question for the last four. I'm running out of material. Big time.

So reaching deep, I remembered a story with a pertinent moral. Pertinent because sometimes she is lacking in empathy and sensitivity for others. I thought I was oh so clever. Tired, but clever.

Froggymama: When mommy was little, I was helping Grandma S. in the garden. She was reaching down into the soil, pulling weeds and tending to all her plants. I stood next to her, watching, as a bee landed on her back. Because I loved my mommy so much, I wanted to make sure she didn't get stung. She had no idea the bee had landed there, so I thought it was up to me to save her! I reached down and picked up that bee, holding it in the palm of my hand. I was so proud of myself for rescuing my mama, I forgot that the bee was still in my hand. And do you know what happened? That silly bee stung me! But the moral of the story is: When you love someone, you would rather get stung than have them hurt. And that's how I feel about you. That's love.

After a long silence, where I thought perhaps the Frog was processing the concept of sacrifice and contemplating her love for her own mother, came this unexpected, yet very Froggy reply:

Froggy: Well, if you'd just left the bee alone, it wouldn't have stung either of you.

And with that, she fell fast asleep.

Froggy Froggy Froggyisms!

2011-10-11T17:14:00.000-07:00

Turns out Froggy is the next Bobby Fischer. While teaching her to play chess, I explained that the goal is to take the King away from your apponent. Froggy reached over to my side of the board, grabbed my king and said, "I win."

While doing homework (yes, homework - Kindergarteners not only go to school a full day, but they have a ton of homework). So while doing homework, Froggy was supposed to cross out the one thing that didn't belong in a row. For example, in a row of sailboats, there was a cat. So I said, "Put an X on the item that doesn't belong." So Froggy put an X on the cat, to which I replied, "Excellent." And then my little punster said, "Xcellent, cause I put an X on the right answer!"

When we come home from anywhere, our dog Buddy freaks out with ecstactic jumps and barks like we've been away a year. A few days ago when Froggy walked in the door and was met with this excitement, she said, "Buddy does his victory dance when we come home!" And we don't even watch football.

I've been trying to teach Froggy empathy. Humor comes easy for her, empathy - not so much. And she does have it, but she has a hard time showing it, or conjuring it. So when it springs forth naturally, I jump on it and explain how important it is to be empathetic and show empathy for others. Around my birthday, Froggy's dad asked her what she'd like to give me as a present. He listed some things and Froggy said, "I'd like to clean the house for her." I thought that was so awesome that instead of wanting to get me something fun, she really thought about what would be a good present for me. And it's true. I'd take a clean house over flowers anyday.

Also on empathy: Froggy's friend at school has had some separation anxiety from her mom. I volunteer on Tuesdays and witnessed this: They all sit on a carpet on the floor during lessons and storytime. Her friend was wimpering and holding back tears. Froggy sat next to her and rubbed her back until she felt better. Brought tears to this sappy mama's eyes.

A slice of our summer

2011-10-09T22:40:00.000-07:00

Froggy's graduation from preschool. On to more mature ventures.

Or maybe not.

Everyone came together to celebrate the big day!

Froggy and mama in Big Bear on a vacation.

Our cabin had a barn with bunnies and llamas!

It was so beautiful and relaxing!

Disneyland with our favorite pals!

Froggy's 6th birthday party. It was a Halloween/disco theme with a disco ball pinata!

Auntie visited too!

Froggyisms

2011-08-30T21:35:00.000-07:00

Last weekend we drove to Big Bear and went camping. After a long drive up the mountain, we found a very cool place to hike. After getting out of the car and walking up the hill, Froggy said, "We've arrived at our destiny!"

After dinner the other night, we stopped at a store for coffee. Froggy found saw a toy, picked it up and said, "Well that got caught in my eye!" I think she meant, 'that caught my eye.' But I like her expression better. Very visceral.

Froggy is really picking up on wordplay and puns. I couldn't be more proud! The other day she put a slinky on her arm and said, "It's armor! Get it? Arm--or?" Yeah, we got it kiddo!

A bedtime conversation:

Me: Froggy, it's time for bed.
Froggy: Really Mom, really? I expected more from you!

Sissysnuggiekins (Froggy's sister) is a model now. She's been traveling around the world and has become quite successful. While talking to Froggy's Grandma, I asked her where Sissysnuggiekins was. Froggy picked up on the conversation and said, "New York, Paris, Hamsterdam?" Hamsterdam!

While drinking a diet ginger ale the other day, Froggy asked if she could have a sip. I said, "No, it's not good for kids, it's diet." Froggy replied, "Is it called die-et, cause you die from it?" Yikes, didn't really want to have the aspertame conversation. Maybe she's onto something.

While at Big Bear, we walked into a very cool toy story. Froggy walked in and immediately found a big bin of stuffed animals. She already has a million, and I am not keen on buying her more. She found a meer cat and asked if I would buy it for her. When I replied 'no' she said, "So we came here for nothing!" The woman who owned the store almost peed her pants.

She's ALIVE!!!

2011-08-12T19:01:00.000-07:00

It's been a while since I've spilled my guts.

Sometimes when writing, I think about the bloody visual of words; guts exposed, an open rib cage on a table, a disgusting but honest display of our insides; the innards of a person; a life, a marriage, a divorce.

I see a surgery where parts are taken out and placed in a kidney-shaped pan. Scissors and clamps are passed around, quiet murmurs of 'hand me this' and 'hand me that,' with some blame and bleeding, but in the end, the patient taking in new breath. Chest rising and falling. Day after day. Because it's necessary.

Catgut sews up the wounds of a sentence, piecing together the fragments of a paragraph, a life. And somehow, somehow when I look down at the table of all the pieces apart, a person suspended above their own surgery, the body dissected, I see the whole story.

Words thrown into the air - a Scrabble game knocked over, letters falling to the floor, forming a jabberwocky that suddenly makes sense. And I know.

What took place in the subtext of our anatomy, what fell apart.

Organs starved of oxygen. Pieces, although scattered, are still alive, red, beating, In a new body, a new life. Miraculously, the patient survives.

For the first time. In a long time. I am excited. To wake up. To take in a deep breath of this new life. Whole, pink and thriving.

Neurology Update

2011-08-02T21:02:00.000-07:00

Froggy's neurologist called and said that indeed her EEG was normal. I was so happy that I forgot to be angry about how they screwed up and thought it wasn't. Apparently she had 'normal' spikes on the EEG because of the type of sleep she was in. They were higher than normal brain waves, but it was normal for sleep cycle. So, we can start tapering off her seizure meds. So from good news to bad news, back to good news again - tis never a dull moment.

CF Clinic Appointment

2011-07-25T22:05:00.000-07:00

Froggy had her CF appointment on Friday. Our new hospital is WONDERFUL! They are very aggressive and want to do a bronchoscopy and GI scope. Because Froggy cultured pseudomonas and a cousin bacteria to b. cepacia (a while ago) they want to go deep into her lungs to search for bacterias that maybe hiding out and not showing up on her throat cultures. I'm not sure how I feel about it, because it is so invasive and they need to use general anesthesia. But I also feel like this clinic has a genuine interest in Froggy's well-being that I never felt with our old clinic. It will take a week or two before we receive the results of her latest throat swab and blood panel, so wish us luck on both of those! She also has a CT scan this Thursday to check out her lungs and sinuses.

Froggy rocked her PFT's and scored a 112% on her FEV1, 107 on her FVC (full volume capacity), and she weighs 40lbs and is 44 1/4 inches. We need to increase her weight a little, so we may add some bolus feeds in the day. But for now, we'll stick with what we've been doing.

In other health news, Froggy had an EEG a few weeks ago. Her neurologist was out of town so another neurologist called to tell me the results were normal. But tonight her regular neurologist emailed saying that her EEG was abnormal, so he doesn't want to decrease her meds. I'm crushed because I thought her seizure disorder was on it's way out. I'll know more tomorrow and hopefully and we can figure out what's going on.

A lot is happening with Froggy, even though she is thriving and healthy and doing great, we will always be awaiting tests. But I think that is the personality of Cystic Fibrosis, even when things are going well, there will always be something lurking in the shadows. It is the nature of this beast. But for now she is healthy, super active, enjoying gymnastics camp, and having a fabulous summer. So no complaints. She's happy, healthy and loving life. What else is there?

Froggy Goes Surfing

2011-06-19T21:12:00.000-07:00

Pro-surfer giving Froggy some advice.

They said that she should go out like a queen!

So she did!

The Mauli Ola Foundation is a non-profit foundation where professional surfers donate their time and expertise to teach kiddos with CF how to surf. Salt water and swimming are incredible respiratory treatments to help loosen mucus in the lungs. These pro-surfers fly in from Hawaii and all over the US, to teach kiddos like Froggy how to surf. It was very touching to see these "dudes" get so emotionally invested.

Froggy surfed her very first time trying. The water was chilly and she got some salt water up the nose, so she wasn't too thrilled at the end. But she did great, and we were so proud of her!!!

Funny, Fabulous, Froggyisms

2011-06-10T11:24:00.001-07:00

Froggy shows me her stuffed animal shark and says:

Froggy: You can tell it's a shark by it's extra fin.

And then she looks at me like she's not sure I'll understand, but goes ahead anyway.

Froggy: It's called a dorsal fin.

We haven't been to Iowa in a while, evident by this next question:

Froggy: Does pork come from a porcupine?

And the other day on our walk to the car, this was our conversation:

Froggy: I wish I was a dingo so I could eat animals.
Froggymama: You eat animals.
Froggy: I eat ants.
Froggymama: No you don't.
Froggy: Yes, I do. Everyone does.
Froggymama: Your friend Beeman doesn't.
Froggy: Of course not! He's a vegetarian.

And some great Confucius Froggyisms:

Froggy: We're not the type of people who litter.

and

Froggy: I'll wear my bathing suit to the sun.

and

Froggy: I wonder what's really on the dark side of the moon?

On a hike the other day, Froggy takes two sticks and swings them in the air and said...

Froggy: I'm conducting nature.

When I told Froggy we would see her friend Mr. O the next day, she said:

Froggy: We can't see Mr. O. tomorrow because I will be busy making evil plans.

I'll leave you with that.

Where Have You Been Froggymama?

2011-05-28T23:39:00.000-07:00

In Topanga, climbing mountains.

Searching for WILD things.

Rock climbing with good friends and Buddy!

Enjoying the view.

Swimming, like a frog of course.

Hunting for Easter Eggs

In her Easter dress that she picked out. Can you say Fancy Frog?

Eating lots of candy.

Finding tons of Easter eggs

Posing.

This Easter Egg stuff is serious business.

Getting lots of snuggles from Daddy.

No time for kisses, must...find...more...eggs!

Found a secret garden.

Opened up treasures.

Raised money for the cure.

Swam in the ocean.

It was too cold for mommy. She's a wimp, says the Frog.

And sported very cool Froggy goggles.

So as you can see, we've been a bit busy. I wrote a script, fundraised, and have been entertaining a very busy little tadpole. Life is good.

2011-04-15T22:46:00.001-07:00

This essay on divorce really hit home. Click HERE to read.

Seester in town

2011-04-15T21:59:00.000-07:00

My sis came for a visit in March. Legoland, the San Diego zoo, Stone Brewery, and just relaxing at home...ten days of sister bliss. We miss her so.

Froggyisms

2011-03-14T09:57:00.000-07:00

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.

Beautiful California, Beautiful Froggy

2011-03-06T12:40:00.000-08:00

Dirty Laundry

2011-02-27T22:37:00.000-08:00

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.

Books Read 2010

2011-01-31T20:28:00.000-08:00

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. :)

2011-01-12T22:56:00.000-08:00

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.

Early Christmas in LA

2011-01-10T22:04:00.000-08:00

Christmas in Iowa

2011-01-10T21:19:00.000-08:00

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.

2011-01-10T20:47:00.000-08:00

Iowa Winter 2010 Part I.

2011-01-08T16:30:00.000-08:00

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

I LOVE the joy on her face.

Froggyisms

2010-12-28T08:02:00.000-08:00

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.

CF Clinic

2010-12-09T23:33:00.001-08:00

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

2010-12-09T23:24:00.000-08:00

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.

Lilies by Mary Oliver

2010-12-02T09:31:00.001-08:00

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.

Froggy Gorilla Grandparents

2010-11-23T21:13:00.000-08:00

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.

Waiting for my real life to begin - Colin Hay

2010-11-07T18:02:00.000-08:00

Paper Moon

2010-11-07T17:58:00.000-08:00

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.

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?

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.

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.

"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.

Tour de Frog

2010-11-06T18:55:00.000-07:00

Froggy learned how to ride her bike yesterday and she is already SUPER fast!

2010-10-28T22:59:00.000-07:00

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.

Eight Years Later

2010-10-04T19:09:00.000-07:00

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.

Where I go.

2010-09-30T22:57:00.000-07:00

"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.

Iowa State Fair 2010

2010-09-22T07:36:00.000-07:00

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.

The only thing we forgot to visit was the butter cow, which is just criminal. It's like going to Disneyland and forgetting to visit Mickey Mouse. I'll post a picture from their website, because I know how much you are all dying to see it!

Froggy and Cousin E-boy

2010-09-21T08:49:00.000-07:00

Fishing in Iowa (August)

2010-09-20T20:36:00.000-07:00

She caught a fish THIS BIG!

Froggyisms and Body Talk

2010-09-18T00:15:00.000-07:00

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.

Iowa Trip Part 1.

2010-09-09T22:28:00.000-07:00

We rode the Boone train and visited the Reiman Butterfly Garden in Ames.

Birthday Girl!

2010-09-08T21:35:00.000-07:00

I guess "five" doesn't necessarily mean mature.

One of Froggy's best buds The Beeman.

It's Great-grandma B.'s birthday too!

Our little Frog turned five today. We had a small birthday dinner with family and a couple friends. She designed her own cake, as you can see. It's a giraffe in a row boat. That's what she wanted, a giraffe rowing a boat.

Froggy had a great day and said that this was one of the best days of her life. That is music to this mama's ears. I can't believe my baby is five.

Wino Girls Weekend

2010-08-31T23:06:00.000-07:00

One of my very best friends J. had a bachelorette weekend in Los Olivos/Arroyo Grande. And I had my first weekend away from Froggy. The wine helped.

The company of these incredible women, the wine, the landscape, the food, facials, and a weekend away was the perfect medicine for a tired mama. It was so relaxing, I almost started to panic. There was NOTHING that had to be done, just to sit, to eat and drink, to talk and bask in the love of girlfriends. Wonderful, wonderful.

CF Clinic and fabulous news!

2010-08-31T19:21:00.000-07:00

Froggy's PFT's (Pulmonary Function Test) today went fabulously of course! Her FEV1 was 114 percent!!! Woo Hoo!

Her weight is 36.3 pounds - 28 percentile for weight.
Her height is 41 in. 3/4.
Her BMI is 38th percentile. (considering she'd fallen to 5-10%, this is GREAT news).

It was a long day. We arrived home last night from our trip to Iowa at 1am (which was 3am Iowa time). Thankfully, Grandma W. came over today and did treatment and sat with us for five hours at our appt. So door to door, our day was 7 hours. I'm tired and speaking in CF tongue. Anyway, VERY GOOD news for the Frog. Think good thoughts for a clean throat culture.

I'll post Iowa pics soon!

Catalina

2010-08-11T22:35:00.000-07:00

Looking through the viewer to see the girabaldi, leopard sharks, and bat rays.

Froggy learned how to snap her fingers. She does it while barking commands.

The water was cccccc...cold. A mere 65 degrees. Froggy LOVED her goggles and flippers and did not want to be bothered while relaxing in her little ocean lounge chair.

A week ago we sailed to Catalina with FD's parents. Froggy is a master sailor, no sea sickness, total confidence in the water. We both sat at the bow for most of the way and watched for whales! We didn't see any, but we did see dolphins and sea lions. It was wonderful, so beautiful and relaxing. We snorkled, swam, ate, and soaked in the sun.

Even though FD and I are no longer together, I hope we can always give Froggy little vacations and holidays together... for a day or two, to put our differences aside, and be a family in our love for her.

It's Not About the Bike

2010-07-30T15:14:00.000-07:00

It’s not about the bike.

Today I went for a bike ride alone for the first time since Froggy was born. I thought I would be tired. I thought I would be sore, that my body would have forgotten how to pump, how to move with a machine, to take corners and switch gears, to prepare for hills and headwind.

But I wasn’t. I wasn’t tired. I wasn’t sore.

The wind was pushing me back, and I considered turning around. I thought -- oh Froggy will be home soon, maybe I should get meds ready, maybe I should clean the bathroom or do my invoicing, maybe I’ll be sore tomorrow, maybe someone is trying to call and I left my phone at home, maybe I don’t want to be reached, maybe I left my cell and credit card, my backpack, my everything at home because I need this. Maybe I should trust the world to go on without me, at least for one bike ride.

Riding by the wetlands I watched the cranes and pelicans dip their long, resplendent beaks into the water, and heard the breathy song of wind in dry grass. I rode past the marina where the harbor meets sea. I watched a man pull a fish out of the water and children digging deep holes in the sand. I watched them jump in and jump out. I watched how there was nothing more important in the world to them than repeating this glorious ritual of digging, jumping and filling a hole with water. I watched how there was no purpose, no goal, just sand.

My bike is fourteen years old. I bought it in college, and now the seat is falling apart, held together with yellowed packing tape. The brakes squeak, and the gears shift, but only when they want to. I didn’t care. I didn’t care, as bicyclists whirled by in their tight gear and custom water bottles, I didn’t care that I was wearing my sweats that double as pajamas, my blue monkey socks and dusty helmet. My frumpy sneakers don’t click into the pedals and rust has painted crimson over the shiny silver handlebars. I watched the girls on beach cruisers sporting skimpy bikinis and giggled at the thought of what my out of shape mom butt would look like on a bike. I knew I wouldn’t be bragging later on Facebook that I rode 150 miles up hill. Because it was only a few miles and mostly flat. I was passed a lot, passed a few people myself (they were elderly and walking, but still) and there were a few times when the seat felt more like a torture device than a place to sit.

It wasn’t about the bike. It was about being alone. Being a part of the world not as a mom or wife, or someone’s something, not there to do or clean or mend. Just breathing and moving, watching the tide go out and come back in, pumping my legs into the wind and feeling for the first time in a long while, that nothing can hold me back.

Gingerbread Froggyisms

2010-07-27T13:25:00.000-07:00

Froggy and I made gingerbread yesterday, can't wait to make the cookies today!

Just a couple cute Froggyisms before I forget:

Froggy: I like the livingroom. It's where I do most of my living.

While getting dressed this morning...

Froggy: It's a good thing I put on long underwear, in case someone throws an imaginary snowball at me.

Blah blah blah

2010-07-19T20:51:00.001-07:00

I'm tired of being the boring friend with problems. I'm tired of calling my family and having nothing pleasant to say. Or worse, faking happy. I can't hide that I'm angry, sad and overwhelmed. I don't want to be this person who is so dreadfully unpleasant, who complains constantly, who can't get a grip. I know everyone in my life right now takes a deep breath before they answer my call. Oh, it's Froggymama, brace yourselves for emotional projectile vomit! Thar she blows!

I used to be fun, now I feel like a big bitchy poop. That's right. A big bitchy poop. As a writer, I've dug deep into my descriptive vocabulary cavity and waaaa laaaa big bitchy poop. Brilliant, right? I'm angry at everyone, irritated at the slightest infraction, holding onto my sanity with dental floss. I'm so sick of myself. I don't know if I have a right to be angry or if I'm projecting, and after the anger blows, after the volcano erupts, there is this lava of sadness, this seeping, deep, hot depression. It is an ache like someone has died, but we're all here, just different, unrecognizable.

I can't place it. I can't wrap it neatly into a category and then 'work on' those feelings. It's chaos. I don't know who we were or who we are now. I don't know what our lives will be like, what is best. I'm just lost. I've never felt so completely out of my element. It's like being picked up by a wave and dropped on the beach, mangled and half-drowned. I'm not dead, not paralyzed, just stunned, waiting for someone to pick me up. Waiting for a rescue that never happens.

I watch shows like "Intervention" where families ask their loved-one to go into rehab and I think, "You lucky bastard, GO!" Twelve weeks of therapy and self reflection, time to think and just take care of yourself. I want mom intervention. I want to go to a mom resort where I write in a notebook about my day and progress and walk on the beach and just "reflect." When I get help with Froggy, I spend that time working or cleaning. And every self-help guru and therapist and everyone says, "You really need to take time for yourself." Really? Brilliant. Let me just go meditate, pray or exercise while the dog craps on the floor and Froggy burns the house down and my boss makes his own calls. When exactly should I make time for myself? Who will cover for mom? Who can do Froggy's treatments and meds?

I'm just tired, a big bitchy poop who is tired.

I want to be a positive person again. I don't like this girl. And on top of everything that is what is really killing me. I hate myself right now, because I cannot rise above this. I cannot stay patient and positive. I cannot be the mom I want to be for Froggy. I'm like Fragglerock, a crazy puppet mama who churns out laundry and PBJ's and tells the dog to shut-up when he barks at the skateboarders and I'm so angry at CF. I hate it. I hate it. I hate it.

Froggy has a cold and is coughing big time, her new g-tube equipment is driving me bonkers and I just hate this f*cking disease. I want a cure now. I want some rest and peace and I just want everything to be okay. I want comfort and a partner. I want someone to hold me and say, "it's going to be alright." But I'm alone. And I keep trying to get comfort from someone who is incapable of comfort. It's futile and sad and I wish I would just keep my mouth shut because what I'm looking for isn't there. It just isn't. And I feel stupid when at the other end of my words is just silence. Always. Silence.

Everyone says this is going to get better, that our lives, because we deserve it, or because statistically they just have to... but man, oh man, I don't believe it anymore.

Mary Oliver

2010-07-16T00:49:00.000-07:00

From The Book of Time, by Mary Oliver

I rose this morning early as usual, and went to my desk.
But it's Spring,

and the thrush is in the woods,
somewhere in the twirled branches, and he is singing.

And so, now, I am standing by the open door.
And now I am stepping down onto the grass.

I am touching a few leaves.
I am noticing the way the yellow butterflies
move together, in a twinkling cloud, over the field.

And I am thinking: maybe just looking and listening
is the real work.

Maybe the world, without us,
is the real poem.

From Mary Oliver's Poem "Work"

2010-07-16T00:45:00.000-07:00

and what could be more comforting than to fold grief
like a blanket ---
to fold anger like a blanket,
with neat corners ---
to put them into a box of words?

This poem is sooooo Froggy!!!

2010-07-16T00:40:00.000-07:00

From Mary Oliver's Poem "Flare"

Nothing is so delicate or so finely hinged as the wings
of the green moth
against the lantern
against its heat
against the beak of the crow
in the early morning.

Yet the moth has trim, and feistiness, and not a drop
of self pity.

Not in this world.

G-tube Stuff

2010-07-16T00:14:00.000-07:00

I won't bore you with the details (I've already bored my entire network of friends and family), but Froggy had her g-tube peg pull Monday. They yanked the old tube out of her belly and put in a less permanent corflo. The nurse kept warning us that we should step out of the room, but there was NO WAY we were doing to let the Frog go through that alone. Geez, it was hard enough, but to hear her crying from the other side of the door would have been awful.

It's a transisitional tube that will eventually be replaced by the mic-key. This has been a tough week of equipment adjustment and some mishaps. Let's just say I've changed the sheets on the bed a few times. There's nothing like bile shooting from a tube in the middle of the night to wake you up! Better than caffeine. It's a Foldger's commercial, but with barf. Sorry, it's late. I get punchy after midnight. On that note, goodnight.

Sisyphus

2010-07-07T16:53:00.000-07:00

Sisyphus, in Greek mythology was punished by the gods with the maddening task of rolling a boulder up a hill, and just before reaching the top, the boulder would roll right down again. It was a lesson in hubris, a realization I suppose that we are not in control. No matter how strong, how determined, that boulder has a mind of it's own. We are merely human. So get over it.

I don't think I can push this boulder any longer.

This has been our reality. FD has been working a lot. He has to take what they give him because he's still considered 'part-time' and not an employee. Respiratory Therapy jobs in LA are scarce, so he takes what he gets. Sometimes he works 5 days in a row of 12.5 hour shifts. On those days, we don't see him. We are living apart. It's been a welcome separation for both of us, and soon he will find a permanent place of his own.

So for those stretches, I'm a single mom of a kiddo with CF, a dog who poops and pees everynight because of separation anxiety from FD, and two aging cats who mostly hide under the bed until the Frog is asleep and then, starved for human contact attack me on the sofa, at my first chance to sit down all day. I'm beyond exhausted. There needs to be a new word for exhaustion. My day doesn't end at 6:30pm. I don't get to call it a day and relax. There is no time clock for moms. Laundry piles up, the dishes are never done, bills to be paid, birthday parties to plan, not to mention my two part-time jobs. I am always letting someone down, I'm moody and irritated, jealous of FD's freedom and bicycle rides. And it spills out. It erupts. I can not seem to get a grip on the unfairness of it all, how parenting is 90 percent mom and 10 percent dad. And I hate that I'm a b*tch for saying it. But it's true. The bulk of life falls on the mom. And dad gets to swoop in and go for a hike, while I'm home cleaning up dog crap.

When I get a free moment, I'm ordering supplies, working, cleaning, trying to catch up, one step behind, always one step behind. My free time is not free time. It is the opposite of free time. It is occupied, taking care of business, trying to make everyone happy and failing miserably time.

I try to stay positive. I try to put this in perspective and enjoy the time I am blessed to have with Froggy. Most days she is a delightful, smart girl, other days, a pill. But I wake up in the morning, every morning with this smiling face (screaming "MOMMY GET UP") but still adorable, and I say, "I'm lucky." As the day goes on, and life piles up, I lose track, I get cloudy. I start to feel that dark boulder of resentment cast it's ugly shadow and it's goodbye gratitude.

Monday morning I was exhausted. The night before the Frog and I were stuck in three hours of traffic leaving a 4th of July day in Laguna. We arrived home at 1am. And as I was carrying up the deadweight of a tired toddler up a flight of stairs with a backpack on, and toys under my armpits, fumbling for keys in the dark, I thought, "I can't do this alone." There should always be someone to help you in at night after a long day. It shouldn't take two trips. There should be someone else carrying this weight, this physical, mental, emotional weight. It hit me hard. I cannot do this alone. And even if people come help in the day to take care of Froggy, I am still getting up three times a night to give enzymes for the feeding tube. I am still the one doing treatments. The weight of the world, the boulder, is on my shoulders.

After unpacking, doing meds, taking out the dog, blah blah blah, I hit the sheets around three. Froggy was up at 7am and our day began. No amount of coffee could wake me. I was tired and angry, because despite going out at 3am, Buddy left me a pile of sh*t on the kitchen floor. So this is how I begin my day. FD comes over after a bike ride and breakfast, not that I'm completely out of my mind jealous about how refreshed he is, but now it's 10ish. Froggy is not being helpful. I'm behind with treatments and meds. With FD there, I need to work and get some things accomplished. Froggy won't let FD do treatment and there is no sense of order or parental structure and I'm starting to lose it.

Froggy is having her b-day party this year at this indoor kid play center. She's been talking about this all year and you have to rent it way in advance. So I'm online looking up rates and trying to figure out what package we want and I ask Froggy who she wants to invite from preschool. She rattles off some names and then FD says, "Invite your whole class." There are only fifteen kids allowed or we have to pay $100 bucks more. He didn't know this, but it was the straw that not only broke the camel's back, it punctured and sent the camel off a cliff into mad hysterics. I angrily indicated that those who aren't doing the work, shouldn't offer the generous suggestions. It didn't go over well, and FD said, "Well aren't you a nice woman."

It wasn't particularly cruel and my reaction to an innocent mistake was intense, fueled by so much more than a comment. But it was the worst thing at the worst moment. Because I am trying my hardest, giving every piece of myself, and it's not enough. I'm still just a jerk who can't control her temper. I am apparently not a nice person.

I gather my things to go to work. Froggy feels the tension and doesn't want me to leave. I give her a bear hug and get in my car. At the light I sit bawling. I have to work and my mascara is down my face, I'm a red blotchy mess and this guy behind me is honking, waving his arms for me to go. I'm sitting at a red light with a sign that says, "no right turn on red," and this macho cheese head behind me is honking and yelling at me, miming 'turn' and 'go' like I'm an idiot. I'm sobbing and have an out of body experience where I picture getting out of my car, pulling the jerk out of his seat and punching him in the face. Wow, she really isn't a nice person.

Everything is a blur, I give the guy the finger (nice huh?), and look straight ahead. These sweet neighbors who I chit-chat with on our dog walks are also sitting at the light, watching me bawl and give this guy the bird. Wow, it's verified now, what a nice woman.

I am not better than this. I know life challenges some people and they rise to the challenge. They become better for it and handle their lives with grace. I've lost grace. Grace left me a year ago. And wine and bitterness has taken her place. I can't do this. I can't. I am a nice person, or atleast I used to be, but I'm not anymore. I don't know. Maybe this life has gotten to me. Maybe I am so overwhelmed and pissed off I can't even find nice.

There is that obnoxious expression that people show their true colors under stress. Well great. Here are my true colors. A big jerk who yells, sobs and gives people the finger. That's me. Boy would I love to be that mom who finds a way, who writes heartwarming pieces about how it's all worth it and life is inspirational. But I don't feel like a hallmark card. I feel like sh*t. I feel like Sisyphus and no matter how hard I push that boulder up the mountain it will always be there, this weight I cannot lift alone. Maybe that's what Sisyphus needed all along, a partner, someone to carry the boulder, the toddler up the stairs and up the mountain. Maybe it wasn't a lesson in hubris, maybe it was an invitation for others to step up. I don't know. But I'm tired. I'm very tired and feeling a bit hopeless.

Being a nice person was the last thing I was holding onto. Despite everything I still felt like a good person. I don't know anymore. I want to take a nap, a long nap, to wake and have the divorce final, Froggy adjusted, the boulder over the mountain. Just over the mountain. I don't know how much more I can handle.

2010-07-05T13:25:00.000-07:00

Toy Story 3

2010-07-05T00:37:00.000-07:00

I have wanted to take Froggy to the El Capitan theatre in Hollywood forever. It's this incredible, old theatre right in the heart of Hollywood. An organ player entertains pre-show, and afterwards the kids meet the 'cast' and play at this fun zone where there are bouncy houses, playgrounds, a maze, bungie jumps, a ferris wheel. It's basically kid heaven. As you can see, Froggy had a fabulous time and the movie was wonderful too.

Funny Froggyisms

2010-07-03T20:48:00.000-07:00

Froggy while eating alphabet soup:

Froggy: Ewwww, the p's aren't good. No more p's for me. (after even more consideration) I am NOT a big fan of the p's.

Well it's decided then.

Our landlord recently built us a storage unit in our carport. While storing some boxes in there, I heard this strange little bug chatter. Froggy heard the noise too and asked what it was. I said it was probably termites. She started to become concerned and yelled, "Hurry Mommy get outta there. They might think you're made of wood!"

And because it just wouldn't be a Froggyism without some potty humor, here goes (no pun intended)... Froggy was sitting on the pot and I was in the livingroom folding laundry. It's a typical scene at our house.

So Froggy is on the pot reading National Geographic (don't ask) and I think she says something about a v*gina. So I say, "What about your v*gina?" And she says, "NO, not v*gina, the Great Wall of China!"

Breathe Easy Conner

2010-07-02T21:29:00.000-07:00

When a kiddo with CF dies it is felt like a tidal wave in the community of all CF parents and families. It is personal, it is heartbreaking, it is a terrible reminder that this disease is winning. As I kissed Froggy to bed tonight, I cried for Conner. It's too close. I feel his mama's pain like a punch in the gut. If you would like to leave a message for his family, his mama's blog is Not So Bright and Shiny.

Iowa Part IV.

2010-06-27T13:45:00.000-07:00

Iowa Part III.

2010-06-25T22:07:00.000-07:00

Jackson Browne & David Lindley - Late For The Sky 2006

2010-06-23T21:16:00.000-07:00

Iowa Part II.

2010-06-22T18:47:00.000-07:00

Iowa Part I.

2010-06-17T21:21:00.000-07:00

Papa and Grandma with Froggy.

In Iowa City by the river.

At the Millstream Brewery in the Amana Colonies.

Froggy found a 4 leaf clover. Lucky girl.

The Hours

2010-06-16T22:54:00.000-07:00

Two people move
through halls
like students passing
between class, eyes fixed
on books, linoleum, sterile walls
large clocks
waiting for the hours to pass
the minute, the second when
the bell rings
and they are once again
free.

by Froggymama

Starting Over

2010-06-03T23:47:00.000-07:00

I look at old photos and have no idea who those people are.

We were rosy cheeked and stupid, full of enthusiasm, but little else. It's the curse of getting older I think, to see oneself through a retro-microscope, a vision without charm and promise, just the bugs, the pieces of hair and filth caught in film, that no one saw til prints were made. Oh look, there we are standing on a mountain top, with a huge piece of lint, instead of a view. Who knew?

The parts that don't seem to matter at the time tell the whole story. It is in the discard, the refuge, the garbage that explains us. Not what we keep, but what we throw away. A playwright once told me that in a play, what isn't said is much more important than what is. We show our true character in what we don't do, what we don't say.

I am ready to move on, to put the pictures away and know that the albums can exist, can sit upon a shelf forever, long after we have stopped posing.

The end of a marriage

2010-05-27T23:00:00.000-07:00

So this is what it looks like.

We are here. This place, this strange purgatory. In a way it is like sitting next to a dying friend waiting for their last breath, wishing it would just be over, the nurses would come in the room, put a white sheet over the last ten years and say, "I'm sorry honey, it's gone." The finality is comforting like a sob, a deep sob in the shower with hot water running. It is over. And I've known for a long time, but held onto a hope this wasn't the last breath of us.

I'm sad for Froggy. I'm sad that I've failed her. I'm sad that she has not only been dealt CF, but divorce. It is unforgivable. I should have known better, to put my faith in what could be instead of what was. I will never make that mistake again.

As difficult as this transition is, I know the alternative was worse. We do not live in a vacuum and the mistakes we make as parents tear holes in our children. I couldn't repair the damage. I couldn't fix it. As a mom I feel like a failure in so many ways. I can't take away CF, I can't take away this divorce. It is life. It is our life. And the only thing I can do is cushion the blow, to let her know that no matter what, she's loved. And that is a sad second to a complete family. So Froggy, my dear, my angel, my love, I'm sorry.

CF Clinic

2010-05-26T17:13:00.000-07:00

Froggy had her CF Clinic appointment May 18th. Here are the incredible but not surprising results!!!

Froggy went from the 3rd percentile in BMI to the 25th with her new G-tube. Woo hoo!

Sputum culture showed normal lung flora. No pseudomonas thank you very much!

She had her first PFT's (pulmonary function test), where she had to follow specific breathing instructions. The RT (respiratory therapist) didn't think she could do it and asked how old she was, and which doctor thought a 4 year old could do PFT's? I said, she's a smart cookie, she can do it. And she did!

Everyone was thrilled, especially this mama!

Great Strides 2010

2010-05-23T21:51:00.000-07:00

We had such a fun Great Strides this year! My friend T-Rex flew in from San Franscisco (the cutie with the flower in her hair). We raised $13,000 so far, and more checks and online donations are coming in.

Our walk was a 10k on the beach. It was a beautiful day, so we stopped for sand breaks, snacks and a carousel ride.

We also had two other teams, one in Iowa and one in Wisconsin, walking for Froggy and all the other tadpoles with CF. Thanks to everyone who walked, contributed, sent emails, and helped spread the word!

Very, Very Naughty Froggyisms

2010-05-17T23:57:00.001-07:00

I have to preface this first one. When I go to work and Froggy wants to come with me, I tell her, "You don't want to come, I'm going to a boring meeting, where we do very boring things, you would be sooooo bored." And when I tell her I'm going to book club, I tell her it's to discuss boring mommy books.

So today, Froggy was on her fake cell phone and this is the conversation I overheard:

Froggy: Oh, hi Beeman (one of her very best friends). It's me Froggy. After preschool we're going to have a meeting and do boring stuff. Uh yeah... Oh, where's that book about restaurants. (perusing my book shelf and pulling out a fat novel), And we're going to read boring books at the meeting too, boring mommy books.

Today, while folding laundry, I turned on the tv to watch an old rerun of "Frasier." This was the conversation that ensued:

Froggy: I don't like this show.
Froggymama: Neither does Daddy.
Froggy: NOBODY likes this show.

(sorry Kelsey Grammer, the toddler has spoken)

Our sink is clogged because Froggy put a wet piece of toilet paper down it. So while brushing our teeth this morning I said:

FM: The sink is clogged.
Froggy: Why?
FM: Because you put that toilet paper wad down it.
Froggy: Oh... (her eyes light up). We HAVE to get a Turbo Snake now!!!
FM: What's a turbo snake?
Froggy: I saw it on TV. It get the clog all the way down the drain. Look mommy, all the way down here. (pointing to where the pipes meet wall). We HAVE to get one!

I have a feeling she put the wad down the sink so I would have to buy a turbo snake. No more commercials for this kid. It's PBS from now on.

The other day, Froggy and I are in the shower:

Froggy: Mommy, why do you have a big butt?
FM: Genetics I guess. Why do you have a small butt?
Froggy: Cause I'm little. I'm going to start a little butt club and all my friends are going to be in it. Beeman, Hummingbird, Bub. We'll be The Little Butts.

And one more that I'm really not proud of:

Most kids go through a haircutting stage. At least once, they try the bangs or a big chunk off the top. It's a forgivable offense. Hair grows back, they're curious, blah blah blah. Well Froggy skipped this phase and decided to go right to the 'cutting other people's hair' phase.

She was alone with this girl for three minutes in her room and I walk in and see an expression on Froggy's face where I know something has gone down, and it's isn't good.

FM: Froggy, what did you do?
Froggy: Nothing.
FM: I need you to tell the truth now. It's very important to tell the truth. What did you do?
Froggy says nothing.
I change tactics and turn to the good child.
FM: Honey, what did she do?
Good Child: We should tell the truth, right?
FM: Yes.
Good Child: (turning to Froggy) You tell her...the truth.
Froggy: Cut.
FM: Cut what?
Froggy: Cut hair.
FM: Who's hair?

Froggy points to her friend's incredibly long hair that has NEVER been cut. It's past her knees, flowing and she won't even put it in a pony tail, because she loves it's Repunzalesque quality, it's Sampson and Delilah loveliness. If she were a greek goddess, her hair would be a magical entity that launches a thousand ships. And Froggy cut it.

Starting to sweat now, because I couldn't tell where the locks were missing on her head....

FM: Froggy, where's the hair?
Froggy: Under the bed.
FM: You hid her hair under the bed?
Froggy: Yes.

I lift up the covers and there they are, three big curly locks mixed with cat hair. I scoop it up and apologize profusely, scolding Froggy and the little girl shuffles out the door with Grandma. I call her mom, email her mom, offer to pay for a haircut. Two days later, we haven't heard back. I guess that lesson is learned. Check that one off the list. And sadly, check another friend off the list too.

greatstrides2010 at OneTrueMedia.com

2010-05-12T13:30:00.001-07:00

Make an on-line slide show at www.OneTrueMedia.com

Anniversary

2010-04-30T22:30:00.000-07:00

Ten years ago today FD and I had our first date.

We met at Venice Beach and walked and walked and walked, all day.

We sat at the drum circle while the sun went down. A man from Africa approached us, put his hands on our foreheads and said a blessing. He had the most incredible smile. I will never forget his smile. He was one of those people who seemed to float above the earth and just illuminated goodness. He was a stranger, but we felt honored that he chose us out of everyone. We were singled out. We were invincible.

It was a magical day. It was the beginning. It's hard to remember that day without an overwhelming sadness, to think about how little we knew, how life would change us, how we would one day become different people.

I was so innocent. I believed like most 22 year olds that anything was possible. I don't know, I still feel that way at 32, that anything is possible. I am always hopeful, concentrating on that thread, that tiny thread of hope, where the fabric has worn away, washed away in waves and sunlight. It's there, stuck in the sand, under layers of rock and clay just waiting to be dug up, to see another sunset and listen to the sounds of drum beats in Venice beach.

New Great Strides Video

2010-04-26T22:50:00.001-07:00

What's that? You say you want to donate to team Froggy's Legs, so that Froggy can live to 100? Well you're in luck!

Here's our NEW and improved Froggy photo montage, just click HERE.

And to donate those big bucks for the cure, click HERE! Woo Hoo!

The Bright Blue

2010-04-16T23:53:00.000-07:00

The Bright Blue
by Froggymama

Pushing this boulder up
a mountain.

it tumbles
over me.

I'm not a quitter. I start
at sea level, hoisting

that huge rock out of the river bottom. I thought,

if only it could see light, it would know

what it was missing. If I could just push
it to the top overlooking

the world it would know

what I was worth.

ten years later here
I am

broken to bits

looking up at the heavens
the bright blue

asking 'now what?'

G-tube Progress

2010-04-16T23:45:00.000-07:00

Froggy gained 3 pounds!!! In three weeks!

Considering she gained barely a pound in one year, this is incredible.

Her appetite isn't the best, but she's gaining weight, so I'm not complaining. Woo hoo! She's doing great.

Tomorrow is CF Education Day at the hospital. I can't wait to report the progress! xoxo

Froggism

2010-04-14T18:33:00.000-07:00

Froggy: Is Pirate's Booty made from real pirates?

Another Good Poem from The Writer's Almanac

2010-04-13T21:57:00.000-07:00

69

by Philip Schultz

The God of Loneliness: Selected and New Poems

This morning I'm tired of the same newspapers and arguments.
I'm tired of sticking the same legs into the same pants,
the same hands poking out of the same sleeves, going west
and then east, heating up the same tea, watching the same sun
rise over the same horizon, the same trees shedding the same leaves.
Tired of climbing the same stairs to look out the same window
at the same street, tired of shaking the same hands, opening and
closing the same doors, dreaming the same dreams, saying hello
good morning happy birthday I'm so sorry please forgive me.

"69" by Philip Schultz, from The God of Loneliness: Selected and New Poems. © Houghton Mifflin, 2010.

A Spoonful of Fear Helps the Medicine Go Down

2010-03-31T11:13:00.000-07:00

Fear is a funny thing. It prepares us by assuming things will be much worse than they actually are.

In fourth grade, the powers that were decided to cut back and combine the fourth and fifth grade into one grand (and fiscally responsible class) of forty students and one elderly and slightly insane teacher. Despite the fact that Mrs C. tucked her breasts into her two-toned polyester pant suits and snorted pig-like 'oinks' while grading papers, she bravely attempted to teach half the class in basic math and the other in long division.

I remember looking up from my 'oh so easy' fourth grade reader and witnessing the green chalk board filled with numbers that seemed to go on forever. Line after line, zero's added to the end... 9,340,330 divided by 34, how could they ever find the answer? Who did they think they were? Fifth grade was something to be feared.

At ten I knew that a year was clearly not enough time to gain that profound knowledge. I thought, "I will never be there. How are these geniuses understanding hieroglyphics?"

Of course with another year under my belt, fifth grade math was as easy as pie (the math kind, not the key lime), and I realized that fear is all perspective. Between the time we fear something and then actually live it, we've prepared ourselves accordingly. We just don't know it. Those late night worries of worst-case-scenerio may be a good thing after all.

I remember reading an article about how a mother's brain works. When we have a child we start thinking about 'what-if's' in all situations. We look at our child sitting under the the tv quietly entertaining herself and we play out a 'what if' worst- case-scenerio. There's an earthquake, the TV starts to shake, we picture ourselves diving to the floor swooping our child out of harms way. Reinacting this event that has never been inacted is an evolutionary way we've kept our broods alive. The fear of what could happen awakens a part of our brain so should the unlikely happen, we will be ready...ready to dive under the tv, walk through the fire, sit through your child's surgery. We are always preparing ourselves for the worst, not because it's likely or because as mothers we love to worry, rather to protect ourselves and children from falling appliances, saber toothed tigers, and general anesthesia.

Those late night moments devoted to fear that fifth grade will be like med school for ten year olds might protect us from the fact that it clearly isn't. Fifth grade wasn't ancient sanskrit, the dreaded g-tube wasn't a lung transplant, and our televisions and bookshelves have been securely fastened in the event of a major earthquake. Life goes on, fortunately. And a little dose of fear now and again, could be the reason why.

Eva

2010-03-28T21:57:00.000-07:00

Our CF friend Eva died this morning. If you'd like to leave a kind word for her family on her blog, that would be wonderful.

2010-03-26T22:26:00.000-07:00

I swear this is not a blog about poop.

But in case anyone is wondering, Froggy did not culture C. diff. Woo Poo Hoo!

Hospital Pictures

2010-03-22T22:08:00.000-07:00

Pre-surgery.
Just after.

Day one - lots of morphine.

Ouch.

Lots of snuggles.

Doggy visit. They have the same hair!

First feed at home.

Home

2010-03-22T15:42:00.000-07:00

We're home. Froggy and her daddy are on a bike ride as we speak. All is good so far.

Cleaning and turning the tube twice a day is hard. And she has to poo everyday, so we may have to do enemas or suppositories if she doesn't.

I'm a little nervous she may have C. diff. Her poop was very smelly and ashy in the hospital. The doc wasn't concerned, but after hearing from a lot of other parents/patients on the CF forums, I'm going to keep a close eye or 'nose' on the issue. And if the poop isn't normal by tomorrow or the next day, we'll get her tested for it.

I'll post pics later. Lots to do.

Day Two

2010-03-19T17:21:00.001-07:00

Froggy is still doing great. Day two was a little tough, but manageable. If you don't like poop talk, (kind of like coffee talk but grosser) you can stop reading. Consider yourself warned.

So Froggy couldn't eat until she moved things along, and she refused, afraid it would hurt her g-tube to push. Which sometimes she's too smart for her own good, because yes it would hurt. So two suppositories and an enema later she pooped. Woo hoo! I've never seen a nurse so excited. Our WONDERFUL nurses are probably as elated by poo as we are. Wow, you gotta love people who clap and shout over poos.

Froggy is no longer on morphine because it causes constipation, so Children's Tylenol is a sad second. But as long as she's not moving around, she's okay.

Today they started her on Pedialyte in the tube and tonight they'll give her half formula, half water. They are so careful and wonderful here, we couldn't be happier with the care.

Okaydokee, I'm off to take care of our Frog. If I watch another episode of Dora the Explorer or Spongebob, my head might start spinning around, but you gotta do what ya gotta do.

I'll keep updating. Thanks again for all the support! xoxo Froggymama

Froggy Update

2010-03-18T15:21:00.000-07:00

Froggy is out of surgery and we're in a room. She's doing great! I'll post more later, but right now I have to get back. She's on a morphine drip, so pain is minimal. Thank you everyone for your prayers and love.

2010-03-18T00:17:00.000-07:00

My heart is in my throat. Tomorrow my baby is having surgery.

Buddy the dog just winked at me like, "I know, I'm scared too." Everyone is asleep in this house except for the animals and they're all gathered around me, big-eyed furball lovers who know exactly how to "just be."

Their calm energy is exactly what I need right now. Piper is purring, Buddy is asleep with his paws in the air and Peanut is huddled under my chair.

My alarm is set for 4.5 hours from now. I know I should have gone to bed earlier, but how can I sleep when tomorrow is so....big? We're packed, Froggy has had her last milk of the evening, and soon we will be through this CF hurdle. Keep those kind thoughts and prayers coming!

Sissy, Sailing and Sea World

2010-03-14T22:18:00.000-07:00

I admit, I've been a horrible blogger lately.

Here are some pictures of my sister's visit, Sea World and sailing.

We've been so busy preparing for the g-tube and just life in general, I haven't felt like writing. After Froggy goes to bed, I do dishes, clean nebs, pick up the house, watch an hour of tv, read a little and crash.

Froggy's surgery is this Thursday. We check in at 7:30 and she's scheduled for 9:30am. We can have visitors. So call me if you'd like to come see the Frog. I'm sure she'd love the distraction. I'll keep everyone posted on Facebook too. Think good thoughts, pray, send us love as we embrace this next step in her care.

Keeping out spammers

2010-03-14T10:12:00.000-07:00

I'm going to have to approve all comments from now on. I'm getting too many spam comments.

Favorite Froggyism Ever

2010-03-09T17:35:00.001-08:00

Froggy: Four is a great age for being naughty.

Froggyisms

2010-03-06T12:37:00.001-08:00

A couple weeks ago we spent the night in San Diego and hit Sea World. I told Froggy we were staying in a hotel with a pool. She said, "Yay, do we get to wear our zuchinis?" I believe she meant bikinis. And thanks to her, this mama will never again wear a zuchini.

Froggy's first joke: The watch that I got for Christmas has a crack in it... That cracks me up.

While on a walk, we ran into two friendly neighborhood dogs. Their names are Mia and Blake, but Froggy calls them Mia and Flake. I told the doggy owner and she said Flake is so much better, she's going to start calling him that too.

From "The Tempest" by Billy Shakespear

2010-02-28T23:39:00.000-08:00

Prospero:

Our revels now are ended. These our actors,
As I foretold you, were all spirits, and
Are melted into air, into thin air:
And like the baseless fabric of this vision,
The cloud-capp'd tow'rs, the gorgeous palaces,
The solemn temples, the great globe itself,
Yea, all which it inherit, shall dissolve,
And, like this insubstantial pageant faded,
Leave not a rack behind. We are such stuff
As dreams are made on; and our little life
Is rounded with a sleep.

The Tempest Act 4, scene 1, 148–158

G-tube appt. set

2010-02-28T22:19:00.000-08:00

Looks like we're on for March 18th for the G-tube surgery. Froggy has to be completely healthy, and we'll need permission letters from her CF doc, Neurologist and we'll meet with the Anesthesiologist for an accessment.

Wednesday, we have an ultrasound for her liver. But her last blood work two weeks ago - liver enzymes were normal. Woo hoo.

We're ready for this next step.

G-tube Update

2010-02-16T22:26:00.000-08:00

Froggy had her follow-up appointment with the GI doc today.

Here's what we know:

Weight: 32.4 pounds (the little stinker gained a pound - Murphy's law).

Froggy had two scans last week. One showed her upper GI, the other showed how her stomach empties.

Both results were mostly normal. The tests showed some thickening in her gastric folds - which is common for CFer's. Her gastric emptying was also mildly slow. Neither of these facts seemed to bother the GI doc, and they are going to schedule the surgery in the next few weeks. First we have to get approval through our insurance. I get warm fuzzies just thinking about the red tape!

March 3rd, we'll do an ultrasound on Froggy's liver, since her levels were a bit high.

At some point we'll have a meeting with the Anesthesiologist, another meeting with our Nutritionist, and today they ran blood work to check Froggy's coagulation, vitamin levels, and liver enzymes.

Froggy was a champ, but then at the park was very rude to a little girl who was apparently taking too much time on the slide and called her 'nasty.' Oh dear.

Eva

2010-02-14T00:06:00.000-08:00

Please visit EVA's site.

She's an incredible girl, spirited, talented, artistic and dying from CF. She's received over 1200 comments on her last post, and I'd love it if everyone would visit her blog and write a kind word.

I've been reading Eva's blog for a while now and just fell in love with her. Like most young adults I've met/read with CF, she's beyond her years in maturity, wisdom and understanding. Froggy sent her a picture she drew that is hanging on her hospital wall. I'd appreciate it if everyone would support her with some love as she journeys on. Thank you. -Froggymama

The Getty

2010-02-10T22:39:00.000-08:00

With the upcoming G-tube surgery, I've been trying to take Froggy out on adventures around the city. Last week we visited the Getty and had a fabulous time climing rocks, running down hills and saw maybe two paintings. Froggy wasn't into the art.

CF Clinic Appt.

2010-02-10T22:32:00.000-08:00

VERY good news....

Our last clinic appointment (February 2), Froggy was all clear with her throat culture. No Pseudomonas thank you very much! And at our next appointment, Froggy will start PFT's (pulmonary function test). As usual the nurses and doc were thrilled (despite weight gain, but hey, we're used to that) with Froggy's health!

Griffith Park Observatory

2010-02-10T22:01:00.000-08:00

After a long morning of 'hospital' we hit the observatory, had lunch in Los Feliz and visited one of my favorite book stores. I love days like this --the ones you anticipate to be so terrible, and instead prove that life is after all -- quite wonderful.

First GI test

2010-02-10T21:08:00.000-08:00

Never have we been more proud of our little Frog.

When the appointment was scheduled, we weren't told that Froggy would be TIED DOWN for two hours while they took pictures of her 'stomach emptying'.

They told us she was not to eat or drink for eight hours prior. We complied and our little Froggy was starvin' marvin' by 9am. FD made her a snack breakfast and she snarfed down a pbj, bacon, cheese and blueberries. The tech was impressed.

I told Froggy that after she ate she was to dress up like a mummy, all wrapped up, so they could take pictures of her belly. For two hours, she lay perfectly still watching a video and only started to get impatient at the end.

It's so funny because Froggy is such a little stinker for us at home. But at the doctor's office, she is an absolute angel! She anticipates what the doctor is going to ask her to do, sticking out her tongue before asked, lying down for her exams, she's a pro at throat culture, rarely gets too upset, even for a blood draw. It's like she becomes her best self when the going get's tough. Wow, what a kid. So proud. And for the record, I would still be proud even if she screamed through the entire procedure.

Health Stuff

2010-02-01T20:41:00.000-08:00

Froggy came down with a stomach virus on Friday and hasn't eaten much. She's lost some weight, but finally started eating again today. This mama was nervous and almost cried when Froggy ate a piece of bacon today.

We met with the GI doc and here are the facts:

We have four appointments in the next two weeks. They'll run tests on Froggy's GI system to make sure everything runs smoothly and all organs are in the right place.

We'll meet with our GI doc again on the 16th to discuss the results of everything and most likely will go into the hospital for the g-tube at the end of February. Froggy will spend three days in the hospital and have to wear a big tube for about three months. After that, her tube will be replaced with a button.

I welcome any advice, help, words of wisdom regarding the g-tube. We are entering unchartered territory and it's scary.

Froggy at 53 months:

Weight: 31 pounds
Height: 3 feet 3 inches
BMI: 14.3 (20th percentile)

And a little Froggyism...

Tonight we were snuggling in bed discussing nicknames. Froggy asked mine, I said, "Lisi, Spucky, Froggymama, and my mean older sister used to call me Wienie."

I said, "You have nicknames too. Froggy, Addiecakes, Babybean, honeybuns, etc, etc." Froggy said, "No my nickname is Matches, call me Matches."

What? She is such a weirdo. I bought her a new little pet toy and she named him "fruit treat." What a goof.

2010-01-28T22:26:00.000-08:00

Something strange happened tonight.

I've been reading the book SIXTYFIVE ROSES - A SISTER'S MEMOIR. It's about a woman named Pamela who was born in the 1950's with Cystic Fibrosis. The story is told by her sister Heather, who recounts their life together in rural Canada at the beginning stages of "treatment" for CF, and the incredible feat of Pam living into her late 20's. It's a beautiful memoir and of course very difficult to read. I sobbed several times, held the book to my chest, wiping my eyes before I could continue.

Even though the story is told from the perspective of the sister, I couldn't help but relate to the mom. This CF mama raised two children with CF and two without, did manual CPT 2-4 hours a day, changed and dried the sheets every day from her daughter's mist tent, baked, cooked, cleaned, polished, mended, went back to school while her daughter was dying to acquire her nursing degree and basically took over her end of life care. Their family started outreach and education in Canada for CF research and started support groups for other CF families. They worked from sun up to sun down to keep their CF kiddos alive, to raise money, awareness and education. Their dedication was beyond parenthood. It was celestial, and I can only hope to be that strong.

As difficult as it was to read, I was able to distance myself a little due to the progress in CF treatments. It was necessary for me to say, "things have changed, it will be different for Froggy."

But I could absolutely relate to Heather's feelings of a fleeting life, her anger, frustration, feelings of putting her life and career on hold, struggling with spirituality, and eventually finding a peace in the acceptance of "surrendering."

Wander with me for a moment...

Today Froggy and I spent the afternoon at the Getty Center. She rolled down the grassy lawn, climbed the boulders, played in the fountains, was reprimanded by the security guards for doing these things, ran through the garden, made a friend, and had a fabulous Froggy time. Afterwards, we stopped at Trader Joe's for groceries and Froggy asked the manager for a pink balloon. He of course obliged. How could he say no?

While I prepared meds, treatment, and dinner, Froggy played with her pink balloon. She bopped Buddy on the head, ran through the house with the dog chasing her, tied her stuffed animals to it, and was sad to part with it when going to bed.

After rocking Froggy to sleep, I sat on the sofa and continued reading this book. As I reached the very last sentence of the book, the pink balloon that was filled with helium, floating on the ceiling, fell all the way to the floor. It wasn't a gradual fall, it was as if the air had suddenly gone out.

The book ends with the death of Pamela. The very last line is "I have learned that no matter what misfortunes or joys one may be faced with - life will surely go on... with love. -Pamela Gaye Summerhayes 1954-1980.

FD and I watched the pink balloon fall to the floor and felt that sensation where you know something has taken place. Today was one of those perfect days, overlooking the city, the bird's eye view of LA, the beach and mountains. We road the tram, giggled in the fountain, ran through the garden, watched deer grazing on the hillside. It was a perfect day.

I know there is more. That life does not end when our bodies do, when the helium is let out of the balloon. We keep going somewhere that overlooks the city, where ocean and mountains are within reach, and kids roll down the hills, play in the fountains and touch the sculptures without ever being reprimanded. I know this in my heart. But every once in a while, it is nice to be reminded.

CF Mamas and Papas

2010-01-27T21:07:00.000-08:00

A good video to watch, if you haven't already. Click HERE.

Just go bake cookies

2010-01-25T15:16:00.000-08:00

Wrote this a couple days ago and didn't feel like bringing everyone down. Now I'm feeling better, more hopeful, but thought I should post this anyway in case other CF moms/dads feel the same...

I remember when Froggy was diagnosed at four months thinking, "In four years there will be a cure." Four years seemed a monumental amount of time. Because of the research I was reading, the new meds moving through the development pipeline... I'd hoped that by now, we would be there. That hope or denial was keeping me afloat. But lately I've been sinking.

Froggy has been talking about her birthday in September. She can't wait to be five. Her birthday cannot come fast enough for her. But I'm secretly dreading it. I don't want my baby to age without a cure. I don't want another year where her little lungs have to breathe through murky CF mucus. When most parents look forward to their children growing, I'm scared of more candles on the birthday cake. I want to freeze time, to magically suspend ourselves in the universe until gene therapy catches up.

The other day I was telling my friend Meeps about Froggy needing a g-tube. Her eyes instantly filled with tears and she said, "When will it be over?" I said, "It will never be over." And that last bit of denial left my body. It will always be something with this stupid disease.

I feel like the older Froggy becomes, the closer we come to cirrhosis of the liver, diabetes, kidney failure, lung transplant. I'm depressed thinking that the best years of our life are now. I can't hold onto it. I can't enjoy everyday enough. I can't love Froggy enough, hold her enough, kiss her enough, knowing that this is the healthiest she will ever be. I can't sustain it. I never want to let go of my healthy girl. I never want her to have a pic line, or need a transplant, to spend more time in the hospital than out. It's like a Twilight Zone episode where a fortune teller comes up to someone on the street and says, "I predict your life will be all downhill from here."

With the g-tube, her liver enzymes elevated, Froggy clearing her throat more...all these signs confirm the reality of CF.

Sometimes I forget. Sometimes I think our life is normal, even with treatments and meds, I forget that this is real. And then I heard the word "chronic illness" or I have to call our health insurance and tell the woman, "If she doesn't get these medications, she'll die," and I just want to scream at this stranger on the other end of the phone, "I don't care what strings you have to pull, I don't care what my policy says, just be a human being!"

I think one of the reasons I've been dreading the g-tube is that when you look at Froggy, there are no physical signs that anything is wrong. She's perfect. But with a g-tube, CF will be visible. The outside of her body will reveal the truth, her inside doesn't work.

I know it's best for her, I know this will help her in the long run, but I just don't want it to be real. I won't have days where CF disappears anymore. We'll have this physical reminder, sticking out of her side, this reminder we wash around in the tub, a reminder at the pool, another reminder that we are powerless. And I suppose, like all things CF, it will one day become normal. I'll stop noticing the plastic button where skin used to be, and just see my girl. I know this. But right now my heart hurts. Right now I'd like to crawl under the covers and hibernate for a few days. But I'm a mom, so rather than hiding away, I'll go do laundry and see if the Frog wants to bake some oatmeal raisin cookies....

And by the way, the cookies were fabulous!

I Keep You

2010-01-24T00:16:00.000-08:00

i perch my nose on the nape of your neck
breathing in that salt perfume
i think 'remember this'

you sleep

don't forget the smell of her
for a moment
keep it in a locket, tucked in the safest corner

that place
where she can always be found
a warehouse of scents
after the beach
after the park
after preschool
sand, wind, elmer's glue
keep it
keep it
don't lose her

my face tangled in spiderweb curls

living in that beat like a tuba player -
a breath that can play an entire song
without stopping

stay there
in this permanent world

the salty musk

i breathe you in
i keep you

by Froggymama