Thursday, July 31, 2008

Let it Rain

There Will Come Soft Rains

There will come soft rains and the smell of the ground,
And swallows circling with their shimmering sound;

And frogs in the pools singing at night,
And wild plum-trees in tremulous white;

Robins will wear their feathery fire
Whistling their whims on a low fence-wire;

And not one will know of the war, not one
Will care at last when it is done.

Not one would mind, neither bird nor tree
If mankind perished utterly;

And Spring herself, when she woke at dawn,
Would scarcely know that we were gone.

by Sara Teasdale from Collected Poems, Revised Edition. © Simon & Schuster, 1967.

I love this poem because it puts my worries and fear in perspective. Like looking up at the sky and witnessing the complexities of galaxies and wormholes and our universe that just goes on and on and on. Sometimes feeling small, and even a little insignificant is just a huge relief. The enormity of it all takes the pressure off.

It's like that great Oscar Wilde quote, "Life is too important to be taken seriously."

Fortune Cookies and CF

Yesterday I found an old fortune cookie in our junk drawer, which proves how incredibly organized I am, right?

So I threw the cookie away and my message was this: A pleasant surprise is coming your way.

Today I called Children's Hospital for the results of Froggy's sputum culture. It was negative for pseudomonas and MRSA, and all the other nasty little bugs. Hooooooooray!!!! And since we're on hiatus from her inhaled antibiotic (the one that takes forever!) we have more time in the day to just let Froggy be a little tadpole. This is good, good news. My heart is happy.

On the seizure front, the meds are (knock on wood) controlling them. And the constipation is on the mend too. For the moment...all is right in Froggybodyland. Big communal sigh of relief!

Wednesday, July 30, 2008

Froggydadda Master RT

Froggydaddy is at the top of his Respiratory Therapy class.

And the staff in the hospital where he is interning, does not want him to leave. He is supposed to rotate to other hospitals, but they are telling him they hope he can stay. I think they would hire him today if possible.

We are so looking forward to next June when all of this work and struggle comes to fruition. But in the mean time, it's nice that he's so appreciated.

Froggy's First Earthquake

Yesterday, while on the phone, I felt my legs wobbling. Then a can fell out of our cupboards. The blinds shook against the window. In fact, as I write this, I think I felt an aftershock. Weird.

So, being from Iowa, I ran into the bedroom, where Froggy was napping and jumped on top of her. It was a little ridiculous considering by the time I actually made it to the bedroom, the quake was over, and I had just pounced on my sleeping child who was now awake and crabby. Note to self, "Pouncing on kid in a tornado, good. Pouncing on sleeping babe in an earthquake, kind of stupid."

The quake was 5.4 and the epicenter was in the Pomona, Chino Hills area. No injuries or major damage so that's good.

I took a class in college called, "Earth Systems" or as we called it "Rocks for Jocks" because it was a relatively easy science credit. Our instructor, a geologist said, "You couldn't pay me enough money to live in California." This was my last class in college. I obviously wasn't paying attention. But I got an A+ in the class. In fact, I was in love with studying plate tectonics and rock formations, and the history of our earth. Maybe if this had been my first class, rather than my last, I'd be in the Congo playing in the mud. You never know?

Sunday, July 27, 2008


one hand on a mountain

it’s no use

the other hand
reaching out

only air

by Froggymama

Saturday, July 26, 2008

Speaking in Santa Monica

Well I didn't get through the speech without crying. In fact, I was a blubbering fool...oh well.

This was my speech. Maybe if you sob like a baby too, I won't feel so bad.

A good way to describe what it is like being the parent of a child with Cystic Fibrosis is like this: God takes an hourglass, flips it over and says, “Now, make every moment worth it.” We are aware every day that life is incredibly fragile and because of that, incredibly important.

Our daughter Froggy was diagnosed with Cystic Fibrosis at four months. She weighed only 7 pounds 11 ounces. Her blood work was off the charts abnormal, liver, kidney, glucose, everything was pointing to a major illness. She was anemic, malnourished, sleeping through the day. Something was terribly wrong. For one week, we had no idea what that something was. It was the most surreal, nightmare. Our healthy, active baby, who ate constantly, was pale, subdued, and fading.

Our inexperienced and somewhat cocky pediatrician assumed that the problem was a result of my failure as a first time mom to properly breastfeed. He told us to bottle feed her, and come back in a week to see if she had gained any weight. Had we waited, our daughter would have died.

Fortunately, I have an amazing group of friends. One day, in the middle of our nightmare week, about ten women gathered at my friend Mieke’s house. We talked and cried, brainstormed, checked the internet. My mom friends called their pediatricians, their general practitioners. They were my village and I will always credit their efforts with helping to save Froggy's life.

One friend, who happens to be a Nurse Practioner asked me if our baby’s skin ever tasted salty. I didn’t hesitate, "Yes, very salty! Her forehead, lips, fingertips, toes, belly." It wasn’t until that moment that I even questioned the fact that my daughter tasted like she’d been dipped in the ocean. She was just my little sea nymph. The look on my friend’s face assured me that the news was not good. "What could it mean," I asked. And the moment she said Cystic Fibrosis, I knew. I just knew. It was a lightning bolt intuition and no amount of encouragement or alternative explanation could convince me otherwise. It was like finishing a crossword puzzle, where every word and definition pointed to one main theme. This was it, Cystic Fibrosis.

The next day, we met with a more experienced Pediatrician, who took one look at my daughter and cancelled all of his appointments. After a few more tests, we were sent to Children’s Hospital for the sweat chloride test. We bundled Froggy up in blankets and a snow suit, and they checked her sweat to see if her sodium levels were abnormal. The night before the results, I prayed for anything but CF. I think I am the only mother to wish cancer upon her child. Anything, anything but Cystic Fibrosis.

When I was seven, I’d seen a movie about a little girl with CF. Her name was Alex, and she was the daughter of famed sportswriter Frank Deford. The film portrayed her daily struggles with CF, and how she suffered and eventually died at the age of eight, because of this disease. This movie was a life-altering moment for me as a child. It was the first time I realized that children could die. Death was not reserved for the elderly. So from the moment I had a checking account, I started making donations to the Cystic Fibrosis Foundation. I had no idea that they would someday become my family. That I was making donations for my own child’s future.

We spent three weeks in the hospital. The first day, Froggy was given a blood transfusion, pumped with vitamins, and slowly introduced pancreatic enzymes so she could digest her food. We started chest percussion and nebulized treatments. We met with all the experts, we watched a lot of tv, and ate a ton of take out. As hard as it was to have your child in the hospital, it was even more frightening, coming home, and realizing that we were on our own, we were beginning our journey with Cystic Fibrosis.

Froggy is now two and half, and her life is relatively normal. She plays at the park everyday, walks our dog, tortures our cats. She has three best friends who even at two years, she genuinely loves, Hummingbird, Bee Man, and the Bub. She does three hours of respiratory therapy a day, and she wears a vest that literally shakes the mucus from her lungs. She takes a ton of medications and deals with digestive issues and daily stomach aches.

She is the only kid I know who eats salt like it’s candy, shaking the salt shaker onto the back of her hand and licking it like she’s doing tequila shots. She will be sooo cool in college. We’re on a first name basis with every pharmacist in the SoCal area, and our doctors have our numbers programmed in their cell phones. I never thought we would adjust to this disease, accept it, or even live with it. But we have. We have tough days and we cry a lot, but the joy outweighs the sorrow.

Froggy's lungs are as healthy as a normal kiddo. She’s only two, but with the treatments, antibiotics, and new drugs in the pipeline, she could be the first generation of people with CF who outlives her parents.

We are aware every day that life is incredibly fragile and because of that, incredibly important. My husband and I appreciate every milestone, hiccup, tree climbing, potty training day. We know that CF becomes worse with age and Froggy may not have all the time in the world. So, we are vigilant in her healthcare, we go for hikes in the mountains, and swim in the ocean, we swing and slide at the park and sing and dance and make every moment worth it. And with the support from you and the CF Foundation we will add more sand to her hourglass, and hopefully one day there will be no time limit on Froggy's dreams.


I don't think there is anything more stressful and heartbreaking than being in the middle of a crisis and having no control over the outcome. It's like watching a tornado overhead, and hoping that when it touches down there is something left of the house.

I want something I can't have. But today after a moment of clarity and sadness I realized that like most things, it's not up to me.

In my life, my career, my marriage, my child, no amount of hard work or dedication can fix what's broken. I can't convince the tornado to turn around and choose another house. Somethings just are. And as tao or accepting as that sounds. It just really sucks.

Friday, July 25, 2008

Brew Haw Haw – Benefiting the Cystic Fibrosis Foundation
August 2, 2008
1pm – 5pm

Tickets: $50 per person
Entry: Tickets will not be available at the event and must be purchased in advance. Reservations will be held at the door. Please RSVP to ensure entry to the festival. Reserve tickets online.

Location: The Autry National Center:
Address: 4700 Western Heritage Way Los Angeles, CA 90027

Details: This ultimate outdoor festival will include live music, entertainment, a silent auction – and, of course, beer tasting. Here is your opportunity to sample unlimited tastings poured by the region’s best microbreweries, and savor great cuisine from several of Los Angeles’ most popular restaurants, all while supporting the Cystic Fibrosis Foundation as we work to raise funds for a cure.

Event Host: Comedian Bil Dwyer
Featuring Performances by:
Blackstone Heist
Lilly Carrico
Mark Radcliffe
Contact: Kaitlyn Fitzgibbons or 323.655.8525

PLEASE NOTE THIS IS A 21+ EVENT ONLY.No admittance without photo ID, and no children or pets permitted. We encourage you to drink responsibly and have a designated driver. Yellow Cab information will be available at the venue, along with cabs on site.

CF appointment and a little gas...

Today we had Froggy's CF clinic appointment.

Froggy is 27.5 pounds. (Why the neurologist's scale said she was 29lbs, who knows?) and in the 25th percentile for weight and 50th percentile for height. We'd like both to be 50th, but oh well.

We discussed Froggy's gas pains and constipation issues. They took an x-ray and there was virtually no poop, just gas. Yep, she's her father's daughter. We will keep her at the highest dose of Miralax for a while longer. Her body, after the initial constipation in May, is still out of whack, and it can take months of weaning down the laxative before she's back to normal...or normal for her.

After speaking with our WONDERFUL Pediatrician yesterday, she explained that if you try to wean down the miralax too quickly, it can cause issues like gas pain and constipation. She suggested we wean in miniscule incriments.

Our Pulmonologist suggested we come back in a couple weeks to check for other possible intestinal issues, that may not be related to CF. I can't remember what they call it, but she'll drink a nasty solution, then take different x-rays to see how she digests it. Sounds like fun.

No blood was taken, so besides a throat swab, the appointment was easy breezy. We're all in need of a major nap. Maybe Froggy will comply. Yawn.

Tomorrow, I'm speaking at a CF fundraiser in Santa Monica. So wish me luck on getting through a speech about Froggy without crying. Probably not possible. I'll bring tissues.

Thursday, July 24, 2008

Motherhood Unplugged

If you'd like to hear the Radio Program "Motherhood Unplugged" here's how...

Click on THIS LINK which is the KPFK archives. Scroll down to Saturday, July 19th "Special Programming" in the 6:49am time slot. Then click on "Play".

For some reason there is an overlap, because the show doesn't start til 7am. Fast forward 13 minutes to "Motherhood Unplugged." Or if you only have time to listen to my essay, I am 19 minutes into the program.

I know it's complicated. I tried uploading it to my blog, to no avail.

Wednesday, July 23, 2008

Another CF Family

When you get a moment, please click on the blog "CF HUSBAND" and post a comment for their family.

Tricia, who had a lung transplant, has developed Lymphoma and so far, is not responding to treatment.

I've posted about their family before. Just as Tricia was about to be listed on the transplant list, they discovered she was pregnant. Her daughter was born at 24 weeks, and despite some health issues, is doing well. But I guess lymphoma after a transplant is common, and after going through all of the major health challenges this year, they have been dealt another blow.

They receive hundreds of comments daily, but I know they read every one and those kind thoughts and prayers give them hope. Thank you.

A Hard Night

Froggy was up all night with gas pains. She is still not pooping everyday, and when she does, it's very loose and bulky. This is probably too much info, but this blog has become a kind of health diary too. So I can look up these fun poo facts later.

Our nutritionist is out of town til the 28th. Grrrr. Now what?

Once again, send lots of poo prayers.

Tuesday, July 22, 2008

I've Worked Hard For the Money

It occurred to me that a lot of people I meet have never worked in the service industry. They've either been the boss, or hopped directly from college to career without those annoying "will work for complete humiliation" jobs. Sometimes there is a big disconnect with people who haven't had to wait tables or sweep floors, just to pay the rent. They are usually the people complaining the loudest and tipping the least.

So here ya go, my list of life experience for the bargain price of roughly 7 bucks an hour.

As a kid

I worked for my dad in his veterinary clinic. I cleaned cages and told all the animals to hang in there, it would all be okay.

High school Jobs

Maid-Rite: a fast food restaurant with loose-meat sandwiches, in a mall. Everyday I smelled like greasy meat and onions.

Chiropractic Clinic: I cold-called people, asking them to come in for free x-rays. I was hung up on a lot, and took it personally. This job lasted about a week.

The mall/opinion poller: I was one of those obnoxious people who asks if you could spare a moment to talk about your favorite feminine hygiene product. People ran from me, and again, I took it personally.

Movie Theatre: Once again, a smelly job, this time - popcorn. Two movies played all summer "Sleepless in Seattle" and "The Firm". I saw the last five minutes of each film about 300 times, before cleaning up soda cups and red vine wrappers. After finally working my way up to "ticket taker" I realized this was only a summer gig.

Teaching English: In Moscow, Russia. I went abroad for a month and we taught English to elementary kids. It was a life-changing experience watching the Russian children getting drunk during the lunch hour with their teachers. I was chased by some Gypsies, witnessed the most extraordinary cathedrals, and found a human toe-nail in a sausage. And strangely enough, I loved Russia.


Coffee Shop: I can make a killer cappuccino. My foam is amazing, without bubbles and I can make a leaf imprint out of espresso. All this for $6/an hour.

Bus Driver: This was a great job! I loved driving the big rigs. And how many people do you know who can parallel park a city bus?

School Bus Driver: The elementary kids were wonderful, the Jr. high kids were the spawns of Satan. I also drove the bus for disabled kids, and had a boy who was emotionally disabled because he was from Bosnia and had post-traumatic stress disorder, and Autism. We also had twin girls who were neglected by their birth mother, so they developed their own twin language, but couldn't communicate with others. They lived with a 400 pound foster mom who wouldn't answer the door when they came home from school. What a humbling experience. But there was something romantic about waking up at 5am, stopping at the 7-11 on a cold December morning for a big cup of coffee and a donut, to drive through the Iowa hills, watching the frost greet the morning.

Sprint: I sold phones in a kiosk in the middle of the mall. It was a summer gig, and I read a ton of Joyce Carol Oates novels. She was my favorite novelist at the time. I had a mad crush on the guy who worked at the photo shop across the hall.

University of Iowa Theatres: Asst. House Manager for fantastically cheap and creative college theatre.

Hippie Daycare: Tim (the owner) had a daycare in his hippie home. His own children were born on the floor in the middle of the living room, ya know, where the kids had morning snacks. I actually loved this job. The professors from the U of I sent their kids there, so these were bright children. Although one day I noticed a few boys rolling up twigs and dirt in a leaf, and passing it around the circle, breathing deeply and say, "eeer". Ha, ha, ha! And one of the four-year-old boys could do a killer Tom Jones impression. I'll never forget his rendition of "It's so Unusual," atop a toy box, with a paper towel roll microphone. Oh, and snack time was either sushi and organic greens from Tim's garden. Disney videos were banned.

San Diego

Another coffee shop: This time I used my two useless degrees to make killer foam for $6.00 an hour.

Trader Joe's: A wine and cheesy grocery store. Worked with fun, intelligent people, ate too much, and grew some muscles carrying wine cases on my shoulders.

Los Angeles

Trader Joe's in the Mountains: Where I met Froggydaddy! He walked in, asked me if we were out of walnuts, and the rest is history.

Indian Restaurant: A waitress, again, a smelly job. But this time it was tandoori and curry and mango lassi. Yum. Froggydadda called me his tandoori baby.

A Theatre for the Deaf/hard-of-hearing: Office Manager, interim General Manager, volunteer coordinator. An amazing experience, and eventually a sad experience as the management changed and things fell apart. But the golden years of deaf musicals, yes, deaf musicals and making life-long friendships was wonderful.

Nanny: For two years I took care of two darling boys (Pony and Gabo) and became part of Mieke's family. They lived by the beach and we spent our days at the park and beach. What a life.

Research Assistant: For a television writer. A great experience and became good friends with their family.

Lifetime Television: At first in Publicity, and later as the assistant to the president. I liked publicity, but didn't like hailing to the chief.

Assistant to a Director: My current job. My boss is great and directs "The Closer" on TNT, "Shark" and the new Grey's Anatomy spin-off, "Private Practice". He's wonderful and is so understanding about Froggy.

And last but not least, I'm a mama to the most wonderful little two-year-old! It is quite a job and definitely the most rewarding and joyful experience.

Sunday, July 20, 2008

Beachin' with the Bee Man

Last week I played hookie from work and took Froggy to the Venice Canals to feed the ducks. Afterwards, we stopped for ice cream and ran into the Bee Man, his mama and grandmama. They were on their way to the beach, so without a towel or beach toys, we tagged along.

I love serendipitous days like this one. No plans, just hopping in the water, getting too much sand in your suit and spending the day with friends. They both ran, screamed, splashed, laughed, and snuggled in their towels together. It was hard convincing my little sea nymph we had to go home.

Do you remember that feeling as a kid when you never wanted the fun to end? When the sky grew dark, and your mom said it was time for bed, or your best friend went home after a slumber party?

I think it's one of those feelings that is lost after childhood. I don't experience that anymore, the never-wanting-the-fun-to-end feeling. There are moments when I'm rocking Froggy to sleep and I think "I wish she could be this little forever." Or when I embrace the joy that is her smile or laughter. But it's different from that childhood experience of wanting to stop time in the perfect moment of fun.

Saturday, July 19, 2008

Just put your nostrils together and BLOW

This afternoon Froggy decided to shove a flower up her nose, a Mexican Sage to be exact.

When I saw what she was doing, I ran over, and told her to blow! Instead she inhaled, sucking that puppy deep into her sinuses.

So like the party animals we are...we spent our Saturday night at the UCLA Santa Monica Emergency Room. As miserable as it was, they were not busy. We got right in and out. After a tramautic nose probe, the doc said, "Well, looks like she probably swallowed it." Let's hope.

Poor baby fell asleep on the way home. While in the ER, Froggydadda asked, "Do you think you'll ever put anything up your nose again?" to which our tired Froggy answered in the most pathetic little voice, "No Dadda." These are hard lessons to learn.

Tuesday, July 15, 2008

On air

Okay everyone. Hop onto, this Saturday (July 19th) at 7am Pacific, to hear my essay on the "Motherhood Unplugged" show. My essay is the first one, but please listen to the full hour. It's a great show!

And if you can't get up that early (trust me, I understand) you can stream it later. The show will be save for three months on the KPFK website.

I believe you can access it on the website by clicking on “Pacifica Performance Showcase".

I'll blog about it after Saturday so if you miss it, you can find it through my website. Woo hoo!

Another Froggyism

Hummingbird's mama sent me this email. She watched Froggy the other day and had this story to tell:

So the other night when we were watching Froggy...the girls were in my parents huge bathtub, having a great time in the water. Froggy tooted a little and was bending over while seated in the tub like she had to go, plus, she had that look on her face.

I asked her if she had to go poo and I would take her out of the tub to go. She said “no”, but not really as confidently as I would have hoped. I turned around to grab a towel, and when I got back to the tub, there was a very small brown “floater” in the water.

I looked at Froggy with that look like, “you said you didn’t have to go Froggy, what happened?”

And she said really loudly, “I crapped in the water. I crapped in the water.”

At first, I thought I hadn’t heard her correctly, (I didn’t know she knew that word), and said “what did you do?” and she said in the clearest of pronunciation, (as if I was hard of hearing) “I CRAPPED IN THE WAT-TER.”--I died laughing (inside my mind of course) and then got the girls out of the tub. (I later told my parents about it and they thought it was hysterical , what I didn’t tell them is that I happened in their tub!) hee hee - Hummingbird's Mama

Oh yes, it's stories like this that make me so very proud.

Unfortunately, when talking about our cats, and having to scoop the box, we refer to it as kitty crap. I know, it's bad. So from now on we'll stick to the more acceptable "kitty poo".

Monday, July 14, 2008


Please don't turn me into a toad.
Okay, but make me a pretty toad.
Stop, I changed my mind.

I'd like to be a....Hummingbird.

Froggy, seizures, and a day at the beach...

Auntie Heder and Froggy
Grandma W and the Frog
Grandpa J and Froggydadda
Aunt A and Uncle B
Heder and Froggy
Cousin A and Sissysnuggiekins

We had our appt. with Froggy's Neurologist. She decided to increase both of Froggy's seizure meds. And get this, Froggy weighed in at 29 pounds! When did this happen? Woo hoo!!!!!!!!

Hopefully this will help. The last few nights have been tough. Her eyes are deviating and that makes it difficult to sleep. So our nights have been long...

Last weekend, we drove to Laguna for a day with the family. FD's cousin and family were here from Washington, and it was wonderful seeing everyone. Aunt Robin organized the event and this was the first time her three boys were together with the family in years. I didn't get great pictures, because I was too busy enjoying having other people chase after my kid. Yes, that is the true joy of getting together with family.

Froggy loves the ocean and has no fear. Last weekend when we were in Laguna, and we were trying to get her out of the water, she looked up at me and said, "But mommy, I am happy here." Can't argue with that.

Friday, July 11, 2008

Froggyisms Galore

Froggy likes to help change the bedsheets. She's almost as helpful as our cats, who pounce under and crawl to the edge, inevitably getting stuck like it's the Bermuda Triangle, struggling to find their way out of a bed that never ends. So here's the scene:

Froggymama takes sheets off bed, and hears naughty toddler in other room torturing a sweet Pomeranian with her Barbie brush. FM regrettably says:

FM: Froggy, come help me change the bed.

Froggy: (enthusiastically) Okay MAMA!!!

Every time FM tucks the sheet under the bed, Froggy methodically pulls it out, laughing maniacally.

Froggymama playfully pulls the covers so Froggy falls on the bed. Giggles ensue.

FM: Okay, now smooth out the wrinkles.

Froggy: Smooth, smooth, smoooooooooooooooooooooth!

Froggy very carefully smooths out every wrinkle.

Froggy: There. (pause) Now we can jump on it.

End scene.

Froggymama walks into the bedroom to find Froggy up on Daddy's dresser with an open bottle of baby lotion. Her fingers are covered and she's smearing the lotion on the wall.

FM: Froggy, stop that!

Froggy: I'm decorating.

Froggy continues to smear lotion on the wall while saying,

Froggy: Hmmm absolutely. Decorating. Absolutely.

End scene.

While running errands, we pull into the parking lot of our local health foods store.

Froggy: Where are we Mama?

FM: Rainbow Acres.

Froggy: Is there candy and toys?

End scene.

Froggymama and Froggy are snuggling in bed. Froggy passes gas.

FM: What was that?

Froggy: A toot.

Froggy hops out of bed.

FM: Where are you going stinky buns?

Froggy runs out of the room, closes the door behind her, locking FM in, and giggles.

Froggymama: Who's there?

Froggy: Stinky buns.

End Scene.

Froggy does not splash in the tub, she splooshes. For example, "Don't sploosh me Mama!" or "I got splooshed."

While Froggy and I sang "Old MacDonald" the other day, I thought I'd mix it up a bit. One gets bored singing only about cows and sheep. So when we got to the "And on his farm he had a...." I blurted out "KANGAROOOO!" Froggy turned to me very seriously and said, "Mama, kangaroos don't live on farms." Holding back laughter, I said to my very serious child, "Oh yeah, well where do they live?" The tone of her reply was as if I were the most ridiculous person alive, "In the grass, mama." Like duh.

Froggy sits on the sofa playing with two quarters. Froggymama walks by. Froggy holds up one of the quarters.

Froggy: I choked on that.

Froggymama: Lovely.

End scene.

I'm trying to teach Froggy to be a good dog owner and that it's important Buddy listen to her on our walks. I don't know why, because the dog only listens to FD, but oh well. So on our walks I tell her to slap her knee and say, "Come Buddy come!" And then theoretically, he is supposed to come. Sometimes he obeys, most of the time, he pees on a bush.

The other day, Froggy wanted me to join her in the living room while I was doing dishes. From the other room I hear her slapping her leg, while saying, "Come Mommy, come." And of course I did.

Tuesday, July 08, 2008

Ebb and Flow

A good friend once told me that when one part of your life goes right, inevitably another part falls apart.

Froggy's seizures are back. FD and I noticed that every once in while, her eyes lose control and roll back in her head. It started this week. We both wanted to believe that it wasn't happening again. But it is.

Today, it took me three hours to put Froggy down for her nap. Whenever she was on the verge of sleep, her eyes would roll back, and she'd instantly awaken, pumped up and ready to keep fighting.

I was exhausted and angry that on top of CF, we have to deal with Epilepsy. It's so unfair, I could punch someone. Speaking of punching someone... In the middle of trying to put Froggy down, I heard a knock at the door. Buddy started barking wildly, and I was instantly annoyed, thinking, "It better be UPS with her Pulmozyme!"

I opened the screen, while our attack Pomeranian howled, to find two polite little Mormon girls with their nametags, and skirts. I said, "I'm sorry, my baby is sleeping," and closed the door on their sweet little faces. It could not have been more ironic. The last three hours I was blaming God for Froggy's seizures, saying, "Pick on somebody your own size!," and then these two angelic kids show up at my door. Had I really embraced my bitter self, I would have invited them in for tea and told them to go to college before settling down and popping out 10 kids.

They were the most innocent and adorable girls and I still wanted to smack them silly for bothering me in the midst of my mental breakdown. I mean honestly, what could two eighteen year old girls teach me about life? What pearls of wisdom have they stored up in highschool that I haven't learned in LA, in college, in motherhood? I'm sure their hearts are in the right place, but it's a little condescending when a couple of teenagers knock on my door interrupting my life to teach me about the meaning of life. I mean, geez, I'm too busy living to comprehend the meaning of it all! Maybe they should start sending people in their 30's or 40's, because we could at the very least chat about wrinkles and sleep deprivation, let alone God and the meaning of life!

Three hours later, Froggy succumbed to sleep, and "Hummingbird's" mama came over to babysit. Today was the day we recorded our radio show, "Motherhood Unplugged" on KPFK, and I had a long drive to the valley.

The recording was wonderful, but I was totally humbled by the other writers. The segment is an hour-long program about motherhood, told through story and song. The other women who spoke were all famous storytellers, musicians, comedians, and authors. I truly felt that my essay paled in comparison to the others, but the host, Amy Simon said that I had a great voice for radio and totally bolstered my ego. After hearing the other mamas read, it was, like I said, humbling and wonderful to share this experience.

The airtime has changed. It is now July 19th at 7am (Pacific time). It's not a great airtime, but this is a brand new segment and we'll need to prove our worth. Which means, you all have to listen, then call the station and say that this is the BEST show you've ever heard!!!

I listen to KPFK all the time and I can honestly say that this is a great show!

And tonight, while feeling the excitement of "Motherhood Unplugged", I was again humbled. These moms may not have knocked on my door to enlighten me about the world, but I was moved by their honest and heartfelt experiences.

Tomorrow, I'll call the neurologist and hopefully we'll figure out a new med dose to control her seizures. Tonight, while rocking Froggy to sleep, I said a silent prayer, "Please just let her be okay, I'll give anything." And I would.

As a single, young woman I would have done almost anything for success, and now, I would do anything to keep my daughter healthy. Everything else is just fluff. And maybe I sound like a jerk, but when someone can knock on my door and tell me why our Froggy was given CF and Epilepsy, I'll answer. Until then, we're too busy living to talk about why we'

Laguna and Great Grandma

We spent the weekend with Froggy's Great-grandma "B". It was gorgeous and so wonderful relaxing on the deck that overlooks the ocean. We watched the fireworks, while Buddy the dog pranced around barking like he does every year, anticipating the Apocalypse with every bang!

Froggy took a 4 hour nap in a room we call the "Narcolepsy Room". True to form, it always encourages it's guests to sleep and sleep and sleep. In that wonderful four hour vacation, I finished my bookclub pick "The Book of Bright Ideas," and chatted with Grandma B. She's not your average granny. She's traveled the world, China, Alaska, Russia, Europe, Cuba, Tibet, India, Asia, South and Central America, etc. And her wisdom of the world and people is evident in her conversation and tolerant worldview. We talked about war, children, husbands, expectations, and life. I always have such a wonderful time talking to Grandma "B", who just happens to share the same birthday as our Froggy. September 8th is a lucky day, ya know.

FD worked on landscaping, a backyard project that becomes more beautiful with every visit to Laguna. I should have taken pictures. Next time.

Froggy was a stinker with her treatments, and was dealing with some major constipation, so there were some challenges to the weekend, but nothing a little sunshine and sand between the toes couldn't fix, and the ride home was traffic free. Woo-hoo. Our kitties were so happy to see us, they peed on the bathroom rug. Now that's love.

Sunday, July 06, 2008

Great Strides Montage

Our friend "A" is a photographer and made a photo montage with music highlighting our Great Strides Walk in Santa Monica.

Go to the Youtube site HERE to watch it!

Thanks "A" it's beautiful.

Thursday, July 03, 2008

Baby Dreams

I've always wanted to read an essay on the radio. I often submit to "This I Believe" and other segments on NPR to no avail.

Last year I won an essay contest with the magazine LA PARENT, entitled "One Rubber Ducky at a Time." I don't know if you remember the details, but the woman who created the contest is a playwright, Amy Simon, and I was to read my essay at her one-woman show CHEERIOS IN MY UNDERWEAR. But Froggy had the hand, foot and mouth virus and I was unable to attend. Amy Simon read my essay herself and called me after the show, so I could hear the applause. She's an incredible woman.

Well...Amy called me yesterday and said that she was just been approved to host a radio show on a local Los Angeles station, KPFK. Her show will be called "Motherhood Unplugged." And for her first show, she asked me to read my essay on the radio!

This Tuesday, we will tape it, and then Saturday (July 12) at noon (Pacific) on KPFK, it will air. You can go to to hear it. I'll post more later, to make sure the airtime is correct.

I'm so excited. This is a baby dream of mine, and who knows what will come of it. Hooray!

Tuesday, July 01, 2008

Opening Doors

I don't know who it was that said "every person is a door to a new universe," but that truth rings especially true tonight.

I love meeting new people. In LA, it's called "networking" but that's a disgusting term, and there is nothing human involved in that type of interaction. I hate networking - that fake, "what can you do for me" conversation where both parties one-up each other, and walk away feeling defeated, and desperate. Not my cup of tea.

I'm part of an online group for parents in LA. There are over 7,000 members, but only a few hundred post consistently. Having never met most of these women, I still feel I know them. We ask each other for advise on Pediatricians, diets, plumbers, books, etc. Every few months some of us get together, for dinner and drinks. It's an opportunity to meet the people behind the posts, the women who help or need help with their out-of-control toddler or crazy neighbor, their meatloaf recipe, and marital strife.

About a year ago, I read online that a mom was diagnosed with Leukemia and needed a bone marrow transplant. She had a baby girl about Froggy's age, and her Temple was hosting a day where people could sign up, swab their cheek and become a potential bone marrow donor. My friend and I volunteered and are now both on the registry. I was inspired by her, and how she managed to balance this devastating disease with motherhood.

Tonight at a gathering from this on-line group, I met the woman who is still fighting Leukemia. She's working on a documentary about her condition, and she was beautiful, and full of energy, and despite her lack of hair, it would be impossible to tell that she was sick. She said this is her second fight with Leukemia and her doctor explained that if she is diagnosed again, there is little hope for recovery. She was incredibly stoic, and said that at 41, she lived a full and happy life. Just in case, she was working on a photo montage for her daughter, something to remember her by.

I told her about Froggy and how I was inspired by her to become a bone marrow donor. She cried and said that as hard as it is to face death, she couldn't imagine having a child with a chronic condition, like CF. She was so brave and beautiful. And I thought, this is networking, where people come together to save lives, to share tears and say, "keep fighting," where we really are windows into the soul, and doors to a new universe.

Eating sushi and drinking Chardonnay, thirty women talked about preschools, soccer, religion, politics, careers, writing, Spanish immersion schools, life, death, close calls, vasectomies, birth control, natural childbirth, breastfeeding, desires, free time, creativity, love, books, friendships, literature, theatre, film, cancer and shoes.

We all have a story, lives that are complicated and beautiful, precious and awkward. I always walk away from evenings like tonight where I feel that with women like this in the world, we really will conquer all, Leukemia and CF, the terrible two's and expensive schooling. It's networking of the best kind - people looking out for other people... just open up worlds, and in the end say, "even though I don't really know you, I know you and love you."

It reminds me of the Emily Dickinson quote, "That Love is all there is, Is all we know of Love"