Froggy's First Snow

I feel like the staypuff marshmallow.

Is this why we live in California, Mommy?

Cousin Ruby loves the snow!

Snow, snow, I love to eat snow.

Iowa in winter without a blanket of snow is pretty depressing. It reminds me of a Dicken's novel. But tonight, as we were celebrating New Year's Eve, it began to snow! Froggy, Aunt Arctica, Ruby (the puppy) and Cousin Pee Wee and I ran outside to experience the babies' first snow.

Froggy blinked a lot and looked up at me like, "This is nuts!." Ruby ran around in circles and ate the snow like it was Kibble. And we stood outside for a total of three minutes before Froggymama was ready to go inside for Hot Buttered Rum, courtesy of aunt "B". Yum. It's like dessert that gives you a buzz. What could be better than that?

Check out the next to last picture: The tree with a single leaf clinging to it's branches - like a symbol of hope. All the other leaves have fallen, but this one just hasn't quite accepted the idea of winter. Sometimes I feel like that, holding onto the tree for dear life, waiting for Spring.

Happy New Year everyone. Cheers to Peace, Love and Hope for us all.

Christmas in Iowa

Are all of these for moi?

I want to be just like you when I'm seven. Even if it means joining the dark side.

Darth Froggy

Aunt Arctica and Uncle Jiffy Pop

My beautiful mama!

Froggy loves her Grandpa. Especially his neck. (It's an inside joke.)

Aunt Arctica and I armored in aprons to feed Froggy her Christmas dinner.

Cousin Peewee and Froggy played all night! They are best buds.

It's been a wonderful vacation in Iowa. The weather is idyllic, very unIowa-like. Today we saw the mail man in shorts and a t-shirt. He was a little crazy because it's in the 50's, but for December, this is like Bermuda.

Christmas was wonderful, hurried, but wonderful. We didn't arrive until midnight on the 24th and our sleep schedules are still suffering. Froggy has been a super trooper and was an amazing traveler for our 9 1/2 hour, two-stop, delayed flight. I, however, was about ready to overdose on Dramamine. I vowed never, never, ever, ever to travel with a toddler alone during the holidays. In fact, it was the first thing I said upon meeting my parents at the airport, "Never again."

It is so good to be home, cuddling with my childhood cat, Reina, reading the newspaper, eating cookies for breakfast, and shopping at the vintage stores. It is refreshing to be away from our regular old lives.

We miss Froggydadda and wish he was here! Yesterday Froggy went to the door, knocked on it and said, "Dadda?" She LOVES, LOVES, LOVES her daddy. I do too!

Wishing you all a Happy New Year!

Great-Grammy Froggy

Froggy loves her great-Grammy!

Don't Bite Your Dentist

Yesterday, Froggy had her first dental appointment -if you can call it that. We went to the dentist. He tried to open her mouth, she barely complied. Then he said, "keep brushing." And that was it.

I guess I was expecting the apocalypse, or Medea with a toothbrush. But it was fine. Nobody lost a finger, and Grandma picked up the bill. Not a bad first trip to the dentist.

Froggymama was scolded however for not flossing. I said, "I have a 15-month-old. I don't even shave my legs anymore. Leave me alone!" Already my little tadpole is a better patient than her mom.

You Must Change Your Life

Archaic Torso of Apollo
by Rainer Maria Rilke


We cannot know his legendary head
with eyes like ripening fruit. And yet his torso
is still suffused with brilliance from inside,
like a lamp, in which his gaze, now turned to low,

gleams in all its power. Otherwise
the curved breast could not dazzle you so, nor could
a smile run through the placid hips and thighs
to that dark center where procreation flared.

Otherwise this stone would seem defaced
beneath the translucent cascade of the shoulders
and would not glisten like a wild beast’s fur:

would not, from all the borders of itself,
burst like a star: for here there is no place
that does not see you. You must change your life.



I love this poem because (to me) it's about what isn't there. And if we can see what isn't there, we will find the answer to what is.

Imagine life without the clutter, the backstory, the excuses, the filler. Just the power and beauty of the torso, without a head to confuse and manipulate. "For here there is no place that does not see you."

Froggydaddy is a photographer and doesn't like to shoot in color because a red barret in someone's hair can distract from the intended subject. He has to know what is in the shot, and sometimes, more importantly what is not. Black and White gives him the power to define subject, background, foreground, his intent. But a purple gum wrapper in the middle of the street, could easily change the story, disrupt and distract from the power and beauty of his picture. And who wants their story to be about a purple gum wrapper or red barret?

And with writing, the pauses, the moments when a character chooses not to speak is the real story, isn't it?

Maybe Rilke is commanding us to get rid of our distractions. Find the meat, the heart, the pulp of life. And forget about the rest. Like a life-editor, wouldn't it be wonderful if someone could just zap the unneccessary stuff we focus so intently on, while our children grow, the earth spins, and our hair greys.

If you could get rid of the distractions that take you away from your art, your purpose, your being, what would it be? What is the head on your Apollo?

"Like a lamp, in which his gaze, now turned to low,
gleams in all its power."

For the New Year, I'm following Rilke's advice; to find the brilliance from inside, quietly embrace the empty spaces, and turn my lamp to low.

Stranded in Socal

We're still here. We're not supposed to be here. We're supposed to be with family in Iowa.

Tuesday we headed to the airport at 6am, two hours later, we were still in line. Our flight was cancelled because of the Denver blizzard. We booked another flight for today, but most of Colorado is in major snow crisis, and they aren't opening the airport until tomorrow. Even the malls are closed. And you know when they close the malls, it's really bad!

My lovely airline won't answer their phones (can't say I blame them), so we're going to get a refund, hopefully. I booked another flight out, NOT GOING THROUGH DENVER, on Sunday. We won't get into Iowa until late Christmas eve, but it's better than nothing.

Froggydaddy is staying here. Airline tix were horribly expensive, so he'll spend the holidays with Sissy Snuggiekins and her family. The good side of this is we weren't one of the 2,000 people trapped at the Denver airport. Had we left on the 6am flight, we would still be there, sleeping in a terminal, doing Froggy's respiratory treaments in the bathroom. Ick.

I'm so bummed we won't see all the family who will be gone by the time we arrive home. We were really looking forward to it. You're always welcome to fly out here, where the runways are always clear!

Welcome to Holland

My sister sent this to me today. I have read it before, but still cried.

A poem by Emily Perl Kingsley
Welcome to Holland


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience,
to understand it,
to imagine how it would feel.
It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans.
The Coliseum.
The Michelangelo David.
The gondolas in Venice.
You may learn some handy phrases in Italian.
It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says,
" Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.
It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say,
" Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ...
about Holland.


This poem speaks such truth. When Froggy was diagnosed and we were in the hospital, I wrote this in my journal:

"If I can let go of perfect, we will be okay."

And just by writing that, I did. And we were.

It is a Wonderful Life

I'm a big believer in stretching out celebrations. Birthdays should last at least a week, and Christmas deserves a good month. I love the music, lights, parties, window-shopping, eggnog, traveling, snow, the preparation and excitement of getting together.

We are all going our separate ways this year, so we gathered at Froggydaddy's parents' for an early Christmas dinner.

Froggy was WIRED! She loves their cat Harvey, and tortured him until he gave her a look like, "Girl, it would only take one swing from this paw to knock you into next year," so we let him retire to the bedroom. She didn't quite get it and crawled around the house all night hissing and saying, 'kitty.'

It's a tradition every year that Sissy Snuggiekins and Grandma W decorate a gingerbread house. It turned out beautifully and even Froggy got to sprinkle some coconut snow. And when I say 'sprinkle' what I really mean is 'hurl violently at anyone in her destructive path.' It was more of a Gingerbread house caught in a blizzard, than a peaceful dwelling of candy.

Froggy was enamored by her sissy and autie "Heder". She is such a girly girl and wanted to play in Grandma's shoe closet. At one point in the evening, we all said, "who has Froggy?" and realized no one did. We scurried around and found the little diva in the bathroom brushing her hair. And she doesn't even have hair.

Froggy loved her Elmo phone and kept saying, "helloooooooooo, helloooooooooo, hmmmm?, hmmmm? hellooooooooo!" And I'm not sure what she enjoyed more, playing her bongos or the hysterical reaction she got from us when she played her bongos.

After a delicious meal, we settled in for the classic, "It's A Wonderful Life." I've probably seen that film a million times and still hope Uncle Billy remembers putting the money in Mr. Potter's paper. But if he wasn't so absent-minded, there would be no reason for George to learn how important his presence is in the world. It's like the last poem Raymond Carver wrote:

LATE FRAGMENT

And did you get what
you wanted from this life, even so?
I did.
And what did you want?
To call myself beloved, to feel myself
beloved on the earth.

I know I do. And even though I've seen it a million times, I still get choked up at the end of the film, when little Zuzu says, "Look Daddy, everytime a bell rings an angel gets his wings." What an amazing gift to let people know they have changed your life for the better. And if you don't know it, our friends and family and the complete strangers who helped us feel loved this year - Your presence has made a difference. Thank you. And Merry Christmas.

Fat Froggy

Can I just say how wonderful it is that Froggy tips the scale at 20 lbs, 3 oz!!! The nurse underestimated how fat our little girl is, and set the large weight on 10lbs, but noooooooo way sister. Not this big Froggy, she needs the 20 lb weight now!

She's gaining and in the 10th percentile for height and weight. Our friend Todd said it must be the dog food. I think he's right. I'll have to send the makers of Science Diet a letter, thanking them for their Cystic Fibrosis recipe.

Woo hoo fat Froggy!!! On a grumpier note, she received her RSV shot (2 of them). And her cry was so adult. She looked up at me like, "why are you letting her hurt me?" These things never get easier.

But she's healthy, getting bigger (and longer, thanks to tall Daddy), and we won't have to worry about RSV.

Wooooo hoooo Froggy!

Froggy Claus

These are my sad attempts of getting a holiday photo. It was an impossible task. Putting the hat on Froggy, who by the way, HATES HATS, was not easy. Plus, I was relying on a 15-month-old to sit still for 2 seconds, and of course the annoying delay on a digital camera didn't help.

She's actually a great ham, who poses for the camera with big smiles, but I was unable to capture it. I must say, I like the silly imperfect pictures much better than the posed ones.

This reminds me of a picture of my sister and I when we were kids. My mom wanted the "perfect" shot by the capitol building in Des Moines. We were wearing matching outfits -- striped one-pieces, with elastic around the torso, and the kind that crept up (you know where) all day. We were constantly reaching and pulling fabric out of our butts, and in the words of my father, it wasn't very "lady-like".

The sun was in our eyes, reflecting off the river. It was hot, humid, mosquitos were out for evolutionary vengence, and we were not happy campers. Mom kept saying, "Open your eyes," and we replied "but the sun hurts MOM!"

It was torture and it's quite evident in the pictures. We were squinty, angry, sweaty girls, looking at the camera like, "someone better call Social Services, because this has to be child abuse! Can't we just get our ice cream and go home!"

I realize now that a few seconds of being uncomfortable might have been worth the great pictures that would be admired for generations. But it felt fake to us. Who cares about posed pictures with a great background and a river reflecting the capitol building. It sounds good in theory, but when my kids or grandkids look at it, they'll probably say "boring". The pics my offspring will enjoy are the ones with me eating toilet paper as a babe, my black-eye pose - after falling down the stairs, the shot where I took a nap on our black lab, Mandy; or the pic of my sis and I at the farm in our overalls (matching of course) picking mulberries in the old feed bin.

I love the pictures that are literally a "snapshot" of life. Because they catch our personality when we aren't expecting it. Nothing is hidden, and the person captured doesn't have time to worry about their lipstick status, or static hair. Those are the ones that matter, the ones that truly reflect who we are as people.

These pictures say, "Froggy hates hats!" And I love that.

Okay, Who Ate The Baby Jesus?

While talking on the phone to my good friend "Gorgeous hair", I heard a pained scream from Froggy. I hung up, ran into the other room and found blood dripping from her mouth. Her tongue had a small puncture wound, that quickly healed.

I was terrified she had swallowed whatever it was that cut her. I searched the floor and couldn't find anything. And then I noticed a clay nativity scene my mom had given us years ago. To my dismay, the baby Jesus was missing from the manger.

"Did Froggy eat the baby Jesus?" I wondered.

"Where was Jesus? Making his way down her little tummy, wondering how he'd strayed so far from Bethlehem?"

"Froggy, where's Jesus? Where, for the love of God, is Jesus?" I begged.

I searched for the clay babe under the sofa and desk, beneath the pack n'play and in her books. But Jesus was no where to be found. I considered rushing Froggy to the emergency room.

What would I say when I arrived?

"Excuse me, it seems my daughter has eaten the Messiah," or "Froggy took the sacrament a little too seriously."

Before I could pack up my naughty little girl, I noticed two small chips of clay on the floor. It was the nose and ear of a donkey. They looked pretty sharp and capable of cutting her tongue. But that manger was still empty. And I just wouldn't sleep until Jesus had been found.

Finally, after a thorough search of our floors, I found dog hair, a lipstick, some post-its, but no Prince of Peace.

"Maybe this nativity is a prenatal one," I thought hopefully.

"No, what would be the point of a nativity scene with only a pregnant Mary?"

Who would buy one of those? It would be like a 99-cent store version with a disclaimer on that box that says, "Jesus not included." And that would be the lesson of this story - Never buy batteries or a nativity scene at a 99-cent store. It would be our Christmas story passed down to the generations about Grandma sending us a cheap nativity scene without the nativity.

At this point, Froggy appeared fine. She wasn't jumping to one side everytime Jesus poked her tummy with his little baby finger, or coughing up proverbs. So, I took one more look at the scene of wisemen, little lamb and a sadly deformed donkey. And there in Mary's arms was her baby, tiny, nestled in, looking into his mama's eyes.

In my worry and hurry, I had seen the empty manger and assumed Jesus was gone. In the other nativities, Mary, Joseph and crew are looking down at this untouchable child. But in this one, Mary is a co-sleeper, a real, concerned, child-wearing mom, who just didn't want to put her babe down in some itchy straw in a stinky barn, while a bunch of wise, but let's face it, strange men, ogled her little boy.

And then I remembered when Froggy and I were in the hospital, hours after she was born. The nurses had given us this hard plastic crib, that sat a good two feet higher than my comfy bed. Everytime I wanted to look at her, I had to practically stand up.

When I placed Froggy in the crib, she cried. So I put her in bed with me, and she stopped. When the nurse returned to take our vitals, she said, "You better be puttin' that babe back in her crib now." (She was Jamaican, so you have to read it with a Jamaican accent mon.)

"But she cries when I put her in there." I replied, exhausted and somewhat offended that after only a couple hours of motherhood, someone was already implying I wasn't doing a very good job, mon.

I complied and put Froggy back in her crib. And she cried.

After about 30 seconds, I plopped her back in bed with me and she's been there ever since. Sometimes she sleeps in her crib and is perfectly content. Other nights, when her stomach hurts, or just feeling needy, she sleeps with us. I figure, we have our whole lives to be independent, to sleep alone, to save the world. But now is the time for comfort, for snuggling under the covers, or in the hay. She won't always be this small, this perfect for cuddling. And one day she'll say, "Mom, get out of my room, and close the door!"

So for now, she's in my arms, tiny, nestled in and looking into her mama's eyes. Right where she belongs.

A Charlie Brown Christmas Tree

Saturday, our lovely friend "J" came over for breakfast. Froggydaddy made blueberry pancakes and bacon. Mmmmm...bacon.

After filling up on our super healthy breakfast, we walked to the tree lot at the end of the street. I prefer the tacky "x-mas tree" lots with their string-of-lights, and transient lumberjacks, to the natural setting, where you pick out a sapling amongst the rest, to be butchered for your holiday amusement.

It's the same reason I would rather pick out a steak at the grocery store, rather than the farm. The distance the middleman brings is just enough space to relieve my guilt. And Christmas isn't about guilt, it's about birth, a new beginning.

The "x-mas" trees are wrapped in twine, attached to a make-shift stand, sitting in a lot in the middle of the city, as if they had sprung up through the cement, with the sole purpose of sitting in our living room with a blue felt star and homemade decorations.

I love that we get to share our tacky traditions with Froggy and someday she will appreciate the kitchy joys of an x-mas tree lot, and decorating the house while listening to Eartha Kitt's "Santa Baby".

A Little History of Cystic Fibrosis

...A Swiss nursery tale includes the worrying warning line: Woe is the child who tastes salty from a kiss on the brow, for he is cursed and soon must die. A medical textbook written in 1705 suggested that if a child's sweat was unusually salty, the child was bewitched and unlikely to survive. The association between the devil, witches and salt was then firmly established in folk law.

In 1938 cystic fibrosis was described in the American Journal of Diseases of Children and was accepted as a diagnosis, but it wasn't understood or widely known about until many years later. There was for example no mention of it in Sir Wilfred Sheldon's textbook of Diseases of the Infancy and Childhood published in 1951, and only a glancing reference in The Principles and Practice of Medicine, edited by Sir Stanley Davidson in 1952.

Retrospective studies have shown that during the First World War (1939-45), a child born with the condition was likely to live for just one year. Initially, neither GPs nor, surprising pediatricianians were enormously interested in the condition because they assumed that, as every system in the body was likely to become involved, the patient's life-span would be short and his or her existence miserable.

This once-defeatist attitude has been reversed by an understanding of the causes of cystic fibrosis and the measures that can be taken to prevent the disease and lessen the impact of its symptoms. A once debilitated baby is now able to look forward to a reasonably good quality of life and to live to early middle-age. In fact, life expectancy has increased so rapidly over the past 50 years that it is now impossible to predict the likely prognosis of a baby. - Times Online UK

I find it hilarious that people used to believe the devil caused Cystic Fibrosis. And yet our neighbor (who is 21) was telling me the other day that all illnesses are caused by evil spirits. Wow, wow, wow! I guess we can stop the time-consuming treatments and just have a priest come over for a good ole-fashion exorcism. Geesh, what year is this?

It was Froggy's salty skin that led me to believe her poor weight gain was CF. Our good friend Chanin (who is a Nurse Practitioner) asked if Froggy's skin ever tasted salty. When I asked her why, and she answered that it was a sign of CF, I just knew. I took Froggy into the other room and bawled. I knew, I knew, I knew. She tasted like she'd been dipped in the ocean. My little sea nymph. Rather than possessed by some evil spirit, or a witch's curse, I'd like to believe that Froggy was kissed by Neptune and swam beneath the sea before she was born. And now she tastes like the history of the world. She is older and wiser, and possesses the secrets of the sea. It's a much better story than the devil, witch's curse, or bad gene.

Thank God we are living in a time when therapies and research are literally changing the fate of those "possessed" with CF. I know my little girl will live to 100. It may take prayer, witch's herbs, and gene therapy. But it will happen!