The Perfect Medicine

Froggy's new favorite game is playing doctor. She has a little medicine kit and I fill syringes with water so she can give her babies their 'medicine'. Beyond the normal curiosity, I think she's processing her treatments and meds and coming to understand these issues through play. It's also such a huge part of her life, it seems only natural she would mimic reality in this safe world of pretend. Sometimes she is the one healing her baby dolls and sometimes it's a friend healing her.

Froggy and her best bud Beeman were playing doctor the other day and when I peeked in the room I saw Froggy under a blanket and she said, "I'm sick," in a very dramatic, soap opera voice. I watched Beeman give her medicine and shots, take her temperature and put a bandaid on her arm.

I love that at three years old they are practicing empathy, with plastic stethoscopes and Susan Lucci histrionics. This is a dress rehearsal for their lives - these games that one day will play out. Whether they become doctors, or comfort a sick friend in the hospital. They are learning, mastering kindness as children.

Yesterday Froggy came into the kitchen and said her baby was sick. "Oh no," I said, playing along.

"She needs the perfect medicine," Froggy said.

"The perfect medicine? What's that?" I asked.

"It's perfect medicine and it makes her all better."

I filled up a syringe and handed it to her. Froggy left the room to give her baby the perfect medicine that would make her all better. And I had to stay in the kitchen for a moment and swallow the sob rising in my throat.

Wouldn't it be wonderful if I could fill up a syringe, give it to my baby and heal her. The perfect medicine. Someday Froggy, someday.


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Froggy Visits The Museum of Natural History

Friday, we spent the day at the Museum of Natural History with Grandpa J. The butterfly pavilion, was the main highlight for Froggy. After the museum we hit Olvera Street and met Grandma W. for dinner, listened to a mariachi band and Froggy bought a plastic flute that was incredibly entertaining for the car ride home.

As we walked in the main lobby of the museum, there were two dinosaur skeletons. I said, "Froggy, is that a dinosaur?" She looked at me like a fool and said, "It's a triceratops Mommy."

And tonight while reading The Very Hungry Caterpillar, Froggy took the book away from me and read it practically verbatim. On the first page, where "a little egg lay on a leaf," there's a picture of the moon. Froggy asked if it was Saturn because it looked like it had rings around it. I said, "Where did you learn about Saturn?," and again she gave me a look like, "Pay attention, lady."

I know, I know, I'm bragging. But I'm so proud that Froggy loves to learn, loves to read and explore, and this world is her oyster...or better yet, the world is her genus Pinctada in the family Pteriidae.

Learning vicariously through my little Frog is even better than the first time around.

Froggy's First Movie

Ice Age 3. And she is 3. Perfect. She had a magical time.

Elephant Dreams

There have been so many times where I sat down to write and...nothing. I felt like a fraud, because I couldn't tell the truth. I couldn't write anything clever or humorous when the elephant in the room was staring me down saying, "what about me?" And everytime I put finger to key, the elephant would sigh and say, "still here, babe."

When I think about the past four years, it's amazing we survived. We survived. I'm proud of that. But it was not without casualities, not without starving our spirits, and ultimately our marriage.

In the last four years we dealt with the devastating diagnosis of Cystic Fibrosis, and then like a cruel joke, Epilepsy. We spent three weeks in the hospital where a doctor told me our baby needed a blood transfusion and may not live. We made it through realizations and grief, acceptance and joy. We made it, thank God, with a healthy, thriving child.

FD started and completed his Respiratory Therapy Program. We lived on my part-time income and some help from family. Without childcare or preschool, I managed to work from home, begging friends and trading babysitting, to acquire enough time for work, have meetings, manage my boss's life as well as ours. I trudged through the healthcare system, fought our insurance, lost two appeals for Disability, and filled out days and days of paperwork. I spent months on the phone with Blue Cross, incompetent pharmacies, incompetent hospital staff, and lost my cool more than I am willing to admit. But it was a lot.

I've cried and sobbed, screamed and ranted, fought myself, my husband, my God. I've emotionally vomited on everyone I know, I've asked for help, I've begged for help, I've borrowed money, I've bitched, I've moaned, I've lived three lifetimes in four years. I've aged, I've gained, I've become someone I probably wouldn't be friends with. I've worked harder than I ever thought possible. I've worried, I've fed, I've healed, I've calmed, I've nursed, I've given more of myself than I knew I even had. I've fought and fought and fought for this family and at the end of the day, I always felt like a failure. No matter what, I couldn't fix it. I couldn't fix CF, I couldn't fix our lives, I couldn't fix our marriage. Some things are just broken.

In the last four years the communication between FD and I has become "Did you give Froggy Prevacid, can you take out the recycling, can you take her to the park so I can work, did you stop at the pharmacy, we have an appointment at Children's on Thursday, has she had her laxative, Buddy needs a walk, the bathroom is filthy, the cats are out of food, we're overdrawn...again, what time's your class, can you be back by 3pm so I can meet with my boss, the recycling is spilling over the can, and did I mention that the recycling needs to go out!" After a while we became this dialogue of necessity.

We dealt with two rounds of Tobi (her inhaled antibiotic) when she cultured Pseudomonas. For ten months, in the last four years Froggy sat each day for two hours of respiratory therapy, and we sat with her. Everyday has been filled with meds, treatments, doctors calls, prescriptions and fundraising. In four years we raised almost $80,000 for Cystic Fibrosis research. In four years, we've beaten Pseudomonas twice and will keep that nasty bug away forever.

Everytime the car broke down, or the pets needed vet care, or we got a $500 traffic ticket (go California!), everytime something broke or came up, it was a miserable realization that we didn't have enough to fix the problem. For four years we came up short, of money, of patience, of empathy for one another. For four years we were in survival mode. High stress, heightened emotions, and just getting by.

When I was in labor with Froggy, I went from 4 centimeters to 9 centimeters in 45 minutes. It was one contraction after another. There wasn't a moment to catch my breath, to regain my composure, to relax. For four years, we've been living in a state of emergency. It's been like labor in a way. When we finally caught our breath with Cystic Fibrosis, Froggy started having seizures. When we finally caught our breath with Epilepsy, she cultured Pseudomonas. It has been one contraction after another. And I'm not belittling the joys. I know our life has been rich, joyous in so many ways. Froggy is my Mount Rushmore, my Grand Canyon, my Egyptian Pyramid. But tonight, I'm feeling more "disaster" than "wonder".

I thought I would live through this experience with some wisdom or grace. I have neither. And I'm not sure I've learned anything except that I'd never want to do this again. I thought I was better than this, stronger than this. I thought I could get through adversity with hard work and determination, with that never-give-up attitude. I thought suffering was supposed to be a teaching tool. But I don't feel educated, I feel tired. In four years, I learned that a marriage cannot survive, human beings can not survive without air, without a break in the contractions of life, without a moment to rest, really rest. To feel connected to the earth, to eachother, to God.

I am disconnected. There is a huge piece missing, a quiet sadness that has moved into my heart. I will never be the same. I will never feel the weightlessness of life before CF, of life before decisions were made, papers signed and children born. My mom told me that having a child is like literally wearing your heart on your sleave. It's true. Your heart will never be inside your body again. With a baby, you become the most vulnerable you've ever been. Your heart, your life, your child is outside yourself.

I know it's a cliche, but I've lost who I am, or was. I'll wake up tomorrow and do treatments, make calls for work, kiss boo boos, cook lunch, dance and play with my beautiful daughter, but this sadness has moved in. I was taught that if you worked hard, if you fought for it, anything is possible. But that was naive. My heart, my marriage, my child, my life is on my sleave. It is fragile, it is porcelain, and there are no guarantees on these dreams. And ultimately no one is keeping tabs. At the end of the day it isn't how hard you worked, but if you survived. I guess we have in a way. And in a way, we haven't.

I've learned one thing: I do not have control. It's all outside of me.

But I can hope. I can hope.

Hope is the thing with feathers

that perches in the soul

and rings the tune

without the words

and never stops at all.

-Emily Dickinson

Our Catalina Island Weekend

Froggy in her boat that Grandpa J. made for her.

Grandpa and Grandma's wooden Sail boat

Grandma W. used to work for USC. They have this incredible Marine Biology campus on Catalina Island, that we were fortunate enough to stay on. Thank you Grandma W!

We hitched a ride on their friend Herbie's boat and arrived in Catalina in an incredible 1 hour and 15 minutes. Froggy slept most of the way, as the lull of the motor and waves rocked her to sleep.

The water was chilly (about 4-5 degrees cooler than in LA), but once you got in, it was beautiful and clear. We snorkled and saw girabaldis, bat rays, and I'm pretty sure I saw a leopard shark.

Life has been stressful lately, so this weekend was especially appreciated. We get wrapped up in treatments and work, school and life -- it was WONDERFUL to swim in the ocean and feel the peaceful world below our daily chaos. I could really get used to this "relaxation" thing.

A hike

Froggy and Buddy running through Temescal Canyon

The Old Student

I find myself wanting to take a class. But the thought of being, “the old student” turns me off. I remember those women in college, the mamas who were ‘finding themselves’ after years of parental duty, finally released to the academic wild - to expand their minds and spend their money. I don’t want to be one of those women.

It was easy at 20 to size them up in two seconds. The husband left for a younger version of themselves, the kids finally left home, and now was the time to do something, be somebody, find out who they hell they were. So they signed up for Colonialism in the Caribbean, or Transgender Studies of Latin America, Theatre of the Absurd – absurd indeed sister!

They all congregated together, raising their hands in unison at every question. They were the perfect student. But to everyone else, they were annoying, transparent, and desperate. They had replaced their husband and children’s affection with the professor’s attention. And we knew it. They asked a million questions and it was evident on the professor’s face he was used to these women, women who were taking classes not only to learn, but to feel alive again. They asked obvious questions like, “So is the syllabus an outline of what we are going to study this semester?” or, “Will you post our midterm exams before the final?” And our medieval Lit Prof. would be cordial but openly irritated, like, “Of course, that’s why it’s called a syllabus, and yes, I’ll post your midterm grades after midterms, so put your hand down and stop wasting my time.”

We were there begrudgingly, we were genuine man - to expand our minds damnit, and not because we wanted to. But these crazies were here out of pure want…because they desired to actually learn something, whether or not it furthered their career or looked good on a resume. They were there to build their brain, to feel acceptance, to make up for what was lost while they made PB and J’s, kissed boo boos and attended 459 violin and ballet lessons.

I remember the way I smugly felt about these mamas, how I evaluated their desire at higher education as somehow less than mine. What future did they have? What were they going to do with an English degree at 50? Who the hell cared?

Well, what the hell was I going to do with an English and Theatre degree at twenty one?

Turns out, nothing.

Now I would embrace these women and call them my friends. We’re all desperate, aren’t we, for something? And I can’t imagine anything more rewarding than education and community. I’m sure someday soon I’ll find my place among the “old” students, talking about kids and husbands rather than parties and careers. I know that I too would raise my hand at every question, eager to fulfill an answer to the question of emptiness that only time can give.

And maybe a class like Women's Lit, or Beatnik Prose will make me feel whole again. Who knows?

Another Good Poem from "The Writer's Almanac"

The VCCA Fellows Visit the Holiness Baptist Church, Amherst, Virginia

by Barbara Crooker

We are the only light faces in a sea of mahogany,
tobacco, almond, and this is not the only way
we are different. We've come in late, the choir
already singing, swaying to the music, moving
in the spirit. When I was down, Lord, when
I was down, Jesus lifted me. And, for a few minutes,
we are raised up, out of our own skepticism
and doubts, rising on the swell of their voices.
The singers sit, and we pass the peace, wrapped
in thick arms, ample bosoms, and I start to think
maybe God is a woman of color, and that She loves
us, in spite of our pale selves, so far away
from who we should really be. Parishioners
give testimonials, a deacon speaks of his sister,
who's "gone home," and I realize he doesn't mean
back to Georgia, but that she's passed over. I float
on this sweet certainty, of a return not to the bland
confection of wispy clouds and angels in nightshirts,
but to childhood's kitchen, a dew-drenched June
morning, roses tumbling by the back porch.
The preacher mounts the lectern, tells us he's been
up since four working at his other job, the one
that pays the bills, and he delivers a sermon
that lightens the heart, unencumbered by dogma
and theology. For the benediction, we all join hands,
visitors and strangers enfolded in the whole,
like raisins in sweet batter. We step through the door
into the stunning sunshine, and our hearts
lift out of our chests, tiny birds flying off to light
in the redbuds, to sing and sing and sing.

"The VCCA Fellows Visit the Holiness Baptist Church, Amherst, Virginia" by Barbara Crooker, from Line Dance. © Word Press, 2008

Happy Birthday to Moi!

FD and I on a date, an actual date!

Checking out the crabs at a local restaurant.

Riding the airplanes!

I'm thirty-two! Do you remember how old 32 seemed when you were a kid? It was basically geriatrics. Just check yourself into an old folks home, play some bingo and shuffle board and chew your food very slowly. I still feel 23, just a little inverted, and perhaps a bit wiser.

FD let me sleep in, tried to do Froggy's treatment, but she protested. And even though FD was disappointed he couldn't 'do it all' this morning, I was thrilled to sleep in an extra half hour, have coffee and meds prepared, (coffee for me, meds for the Frog), and FD made me an omelet, yogurt with fruit and toast. What a guy.

We spent the day at the Pier in Santa Monica, riding the kiddie rides, perused the bookstore on the Promenade, then Grandma W. babysat while FD and I enjoyed Indian food (coconut malai curry vegetables, garlic naan, raita) and saw the new Woody Allen movie. I'd have to say, a perfect day. Thirty two doesn't seem half bad.

The dreaded dentist

And the goggles are for what exactly?

Froggy was a champ at the dentist. She sat perfectly still, listened and did as she was told.

When I brush her teeth, she acts like I'm training her for a fire breathing circus act -screaming bloody murder and closing her chops at the sight of a toothbrush.

Fortunately in public, she's a bit more civilized. I was so proud. No cavities. And they removed a lot of the brown stain left from her iron supplement. The dentist said that her x-rays show her permanent teeth are rather LARGE!

He laughed and said, "You know what that means, right?"

"Braces," I replied?

And he giggled a sadistic, "Oh yeah!"

I'm thinking about switching dentists. He enjoyed that a little too much.

A Froggydadda Graduates!

Classmates checking out their diplomas.


FD with the head of his Respiratory Therapy Program.

FD and Classmates.

FD and his friend "P" the valedictorian.

Froggy and Sissysnuggiekins

The Froggy Fam.