Tuesday, January 29, 2008

My Parents

Yay!!! My parents are coming tomorrow for a week-long visit. I can't wait, and I'll be sure to post pictures.

Friday, January 25, 2008

Turn off the radio

(Disclaimer: If you don't want to hear my political views, don't read this post.)

I try to keep an open mind. I really do.

We listen to a lot of radio in our home and cars. NPR is usually on, the two local stations in LA -KCRW and KPCC are our favorites. But in the afternoon I listen to Dr. Laura. And although I disagree with her politics, I find her life-advice interesting. Mostly, I selfishly and perhaps vicariously like hearing about the lives of others - the hurt in the listener's voices, desperately relying on a total stranger to make a change they alone can't make. It's like hearing a radio play where it's up to the listener to write the ending. Every once in a great while, I'll listen to Rush Limbaugh (although my throw-up threshold for him is about three minutes, and then I have to change the channel), and occasionally I'll tune into the local conservative and liberal radio hosts duke it out.

At my employer's house, I read the NY Times, at home I read the LA Times (although it's rare when I have time to "read news"). At night, I'll browse the internet, sometimes the BBC, AOL or MSN. On a really pathetic day, I'll watch Court TV, or Glenn Beck while folding laundry (I secretly believe that Nancy Grace from Court TV and Glenn Beck are the two most ridiculous people on earth and must secretly be in love - because matches like that ironically have to be fulfilled.)

Like I said, I try to hear all points of view. But I can't do it anymore. I've decided from now on, I'm only listening to music or NPR. I'm sick of angry nimrods who love the sound of their own voice more than the issues they discuss. Views are so polarized and spiteful, and there is very little news in the news. The kicker was Glenn Beck becoming irrate over grocery stores discontinuing plastic bags that aren't recyclable. I get it. I do. There are little kids getting raped in Darfur, but our main focus should be grocery bags and how tree huggers are making life less convenient for those people who need to triple wrap their individually wrapped frozen peanut butter and jelly sandwich kid snacks with bags that can never be or never were recycled. I see why he's so angry. I too almost fell over at the injustice! And it's just incredibly sad when the top story at 11 in Los Angeles is a Brittany Spear's crotch shot as she exits a car for her custody battle court date.

Tonight I needed to get away. FD was gone all day and Froggy was especially challenging. When he came home, I wanted to take a bath, read my magazine, and unwind. But Froggy stood at the door screaming, "Mamaaaa! My turn, my turn!" In "Toddler" that means, "I want in too!" Finally after 9pm, she fell asleep and I hopped in the car for a little drive to unwind.

I turned on a.m. radio and listened as this particular nimrod screamed into the mic about John McCain. He was interviewing Tom Delay and together they ripped apart McCain's character and politics. They were actually attacking his views on 'torture during wartime'. Ya know, because McCain who was actually tortured in Vietnam isn't entitled to his opinion. This host called the NY Times the NY Slimes, he called Bill Clinton BJ. Clinton, and I'm sure if I listened long enough he would have called Barack Obama Osama Obama- because such clever play on words didn't fade from popularity at the end of Jr. High for this dork like it did for the rest of us.

I give up. I've tried listening to both sides, but I can't listen to right-wing radio anymore, even if it is to keep an open mind or for the entertainment value or entertainment 'valueless' of how others believe. How's that for a play-on-words? I know, I need some work. It's been a while since Jr. High. This talk is angry, hateful, and if they were trying to convert or even justify their side of things, I guess they will only be successful at preaching to their choir. And maybe that's what they want, a bunch of people who repeat their one-liners at dinner parties, but aren't actually thinking about what is being said, or what isn't being said.

The reason I'm refraining from listening to this garbage anymore is because it's damaging to the soul. These radio personalities claim to be on the 'moral' side of politics, but they are anything but moral. They are hateful, angry, spiteful souls who feed off their followers. I hope this new president, whether democrat or republican brings at least a sense of community to our country, if anything, just to silence these people who make a living at dividing us.

From now on, I'm keeping my radio to NPR or jazz. They may discuss boring topics like which farmer's market has the best winter squash, but at least it doesn't induce road rage, or angry puns, and I rarely have to turn off "This American Life" to go throw up.

Sunday, January 20, 2008

The Doo Dah Parade

Every year we attend the Doo Dah Parade in Pasadena. It's basically a mock Rose Parade with disco dancers, a float of cigar smokers, people dressed up as stuffed animals, anti-war floats, Trekkies, Star Wars geeks, ponies, drummers, a huge Cat Float that hisses and meows, a group of Basset Hounds, the Purple Hat ladies, hula-hoop dancers and just plain coo-koos who love to be put on display at least once a year. It's a hoot, totally ridiculous, and I love that Froggy has joined the family tradition of appreciating silliness.

Froggy was enamored by the faux animals. She actually walked past a real puppy and pony to get to the costumed version of a dog and bunny. We spent an hour following the life-size stuffed animals around Pasadena. I swear it was a dream come true for Froggy. She was smitten. And FD and I had a great time watching her have a great time. There is something to be said for living vicariously through your kids. Nothing is more exciting than looking through a toddler's eyes.

I'm spoiled.

FD hasn't been in school since December and has been Superdad, helping with treatments, taking care of the tadpole while I work, running to the grocery store, picking up meds. Ahhhh, it's been heaven. Ya know what I've realized about myself? I'm not really crazy or depressed. Having help has helped me to realize that I was doing too much. I was doing the job of at least two people. And when I'm not overwhelmed and exhausted, I'm actually a happy mama!

I'm terribly excited for FD to start the clinical phase of his program, but I'm also dreading the return to 'taking care of a toddler full time, a dog and two cats, while working 25 hours a week, and managing treatments/health insurance stuff by myself.'

But in the mean time, I'm just going to enjoy the help, having FD at home, and hope that we win the CA lotto this week so we can afford that nanny, cook, maid and driver!

Saturday, January 19, 2008


Froggydadda's Dad (Grandpa J. the amazing photographer) will have one of his photographs on the COVER of the magazine "The Sun." It's the March issue.

2008 is definitely the year of amazing accomplishments for FD and his dad. I think this is just the beginning of so many good things to come. Congratulations Grandpa J!

I will make a copy of the photo later and post it for you all to see. And if you'd like to visit his website, just click on
THIS and you'll see how brilliant he is!

Mary Oliver

One of my favorite poets, Mary Oliver is coming to UCLA! Woo Hoo!!!

When I lived in Iowa City, I had no idea how lucky we were to have the world's most renowned poets, playwrights, and writers visiting our campus every week. I attended hundreds of readings by Nobel prize winning writers and poet laureates, and thought nothing of it.

I assumed every twenty-two-year-old spent their weekends listening to Philip Levine, W.S. Merwin, Mark Strand and Billy Collins recite poetry. It was quite a shock when I moved to Los Angeles and realized that the real world cared very little for the spoken word. In LA, people would rather hear Tom Cruise recite his latte order at Starbucks, than hear a fashionably challenged, but brilliant writer recite their life's work.

I don't believe it when people say poetry and theatre are dead. For me, when I read something like Steven's "Thirteen Ways of Looking at a Blackbird" or Yeats' "Reconciliation," I feel like there is nothing more alive. The only thing I can compare it to is the emptiness I experience after a night of television. After three hours of reality tv, like "Supernanny" or some VH1 special on Bon Jovi, I turn off the tv feeling defeated and guilty, like I've literally sold hours of my life to the devil. But after reading a good book, or poetry, I feel connected to the person who wrote the words, connected to their history and connected to the world. Poetry is vital to me because it's someone taking the time to show me the beauty in something I hadn't noticed before. It's like going on a walk with a toddler. Every few feet they stop and say, "Look, moon beautiful," or "flower smell candy," or "puppies pee like daddy!" To me, that's poetry. I just appreciate the time they took to say, "hey, stop your busy life and look at it THIS WAY!"

I guess I'm just a big dork but I can't wait to see one of my favorite writers in action.

Here is one of my Mary Oliver favorites. Don't let the title fool you. It's very hopeful.

When Death Comes

By Mary Oliver

When death comes
like the hungry bear in autumn;
when death comes and takes all the bright coins from his purse

to buy me, and snaps the purse shut;
when death comes
like the measle-pox

when death comes
like an iceberg between the shoulder blades,

I want to step through the door full of curiosity, wondering:
what is it going to be like, that cottage of darkness?

And therefore I look upon everything
as a brotherhood and a sisterhood,
and I look upon time as no more than an idea,
and I consider eternity as another possibility,

and I think of each life as a flower, as common
as a field daisy, and as singular,

and each name a comfortable music in the mouth,
tending, as all music does, toward silence,

and each body a lion of courage, and something
precious to the earth.

When it's over, I want to say all my life
I was a bride married to amazement.
I was the bridegroom, taking the world into my arms.

When it's over, I don't want to wonder
if I have made of my life something particular, and real.

I don't want to find myself sighing and frightened,
or full of argument.

I don't want to end up simply having visited this world.

Mary Oliver

Friday, January 18, 2008

Please visit this blog.

You may want to get some tissues first.

I would love for all of you to say a prayer, or send healing thoughts to their family. Thank you.

Wednesday, January 16, 2008

The bra, the spider and the toddler.

I am always amazed by the creative ways Froggy entertains herself. Who needs legos, I mean really?

Monday, January 14, 2008

The yin, the yang and the whole shabang!

Good news. Froggy's sputum culture came back negative for Pseudomonas today, and all the other scary CF bugs. This is huge. Twenty, even ten years ago it was almost impossible to eradicate Pseudomonas, but now with inhaled antibiotics, we have a fighting chance. It does require two (45min) treatments a day added to her other respiratory treatments, but we're not complaining. Healthy lungs are worth it. So for the next six months, we'll continue her Tobi treatments (one month on, one month off.)

The bad news - Froggy had a seizure at the park today and almost fell over. Her eyes rolled back in her head, her mouth opened and I grabbed her arm before she stumbled. It was over by the time I caught her, but it scared me. My first instinct was to go home. But the seizure was over, she was having a blast, and we stayed for another hour. Her mean mommy made her stay in the very safe and low-to-the-ground-baby-area. Ahh compromise.

I'll give the neurologist another call tomorrow. We may have to try out our third seizure med! But I'm hoping we can just increase her dosage, rather than start the long process of trying another med. And there you have it! Seizures and CF and parks, oh my.

Sunday, January 13, 2008

Saving the World!

While we were driving to the mountains, Sissysnuggiekins spoke about the injustices of the world (yes, she's 15, but going on 35). Specifically, how the most demeaning and strenuous jobs are the lowest paid, and how people who are making big money are doing the least amount of work.

Before FD and I could totally attack her with our oh-so-wise, "That's just how things are," she said matter of factly, "I want to change that."

It was such a nostalgic moment because I remember feeling the same way.

When I was 17, I told someone that I wanted to join the Peace Corps and help save the world. They laughed and said, "We all think we can save the world at your age, but one day you'll realize the world can't be saved."

So I didn't join the Peace Corps. And instead of delivering food to impoverished nations, I got my useless English and Theatre degree and went on to work useless jobs, at coffee shops and grocery stores. I was so intent on getting my own life started, on staying the course, from high school to college, that I decided not to save the world. And I truly regret it. Instead of changing lives, I changed coffee filters and receipts, and eventually diapers.

If anyone is reading this who thinks they can change the way of things, the politics, the status quo, I say, "GO FOR IT!" See the world, change what you view as unjust. Go Sissysnuggiekins! Don't let anyone tell you that it's futile.

I feel the same way about the cure for Cystic Fibrosis. I understand more than anyone the disappointment if it isn't possible, if we hope and are mistaken. But hope is always a good thing, even when you're wrong.

There's a wonderful poem by Stephen Crane that illustrates my point:

I Saw a Man

I saw a man pursuing the horizon;
Round and round they sped.

I was disturbed at this; I accosted the man.
"It is futile," I said,
"You can never -- "

"You lie," he cried,
And ran on.

Stephen Crane

I Need A Vacation!

I need a vacation. And when I say vacation, I don't mean traveling on a plane with a 2-year-old with meds and a vest, and switching airlines, and delays and then adjusting to jetlag and a new bed, and blah blah blah.

I need a vacation that is just one afternoon, where it's not running to the grocery store, or making copies of receipts for my invoicing, or getting my car washed. I need a vacation that actually includes some form of relaxation. Anyone want to join me?

Hiking with Sissy

Froggy the trailblazer!

Saturday, January 12, 2008

Grey skies are gonna clear up

Froggydadda just got a certified letter from his school and...

He was accepted into the Clinical Phase of the Respiratory Care Program!!!

Out of 30 students, only three new applicants are accepted each year. The program fills up quickly, so most people end up waiting a year after they've finished their prerequisites. But FD doesn't have to wait! Woo Hoo!

By summer of 2009, he will be a Respiratory Therapist!

Today is a good day.

Thursday, January 10, 2008

A Bummer Day

Froggy's seizures had improved with her new dose of meds. But her eye deviations and sleepytime twitchings have returned. Ugh.

Sometimes I want to crawl into a cave and hibernate, wait til all is right with the world, and join in the living again. I keep going back to the words of one of my heroes, Gilda Radner who said, "It's always something." If I could embrace that, accept the fact that there will never be a time in our lives where "all is right with the world," I think I could find peace alongside the injustice.

But right now I just want to cry.

Wednesday, January 09, 2008

LA Times Article

Steve Lopez quoted me in his article on healthcare in the LA Times. I wrote him an email after he published his column "Take a Deep Breath and Read". We spoke on the phone yesterday and Grandma. W. emailed to say there was a quote today. Let me know if you have a tough time opening the link. I can email it to you.

Click HERE to read it.

Tuesday, January 08, 2008

CF Appointment Today!

(Froggy trying out two kaleidoscopes at once. One of them was a Christmas present for her boyfriend "The Bub" but she opened it 'for him' a little early.)

Froggy had her clinic appointment at Children's Hospital today. She's doing great!

This appointment was initially stressful because our nutritionist informed us at the last appt. that if Froggy wasn't at least in the 25 percentile for weight, they would suggest we put in a g-tube (gastric feeding tube).
Froggy has always dealt with malabsorption and is on the highest dose of pancreatic enzymes, so the g-tube allows her to eat without using such a high dose, and it's an easy way to add calories while she sleeps. But... it's invasive, there's a risk for infection, she would have general anesthesia, and she's doing wonderfully otherwise. So her mommy and daddy don't like the risk, and definitely don't like the idea of a hole in her belly.

Fortunately Froggy was barely in the 25th percentile, weighing in at 26 pounds. And by the way, at Froggy's age I wasn't even in the 5th percentile, so this kid is exceeding her genetic predisposition for being a total munchkin. And all the girls in our family are pee-wees so it will take a lot of convincing before FD and I jump on the g-tube bandwagon. Fortunately for now, we don't have to.

Without a nap, Froggy was a superfreak at her appointment and was literally bouncing off the walls and screaming whenever anyone with a white coat stepped within two feet of her. She gave our nurse the stink-eye and I think she made her cry. Everyone loves her, so when she gives you the "I hate you" look, they really feel it. Yep, it was a fun day.

Please send positive thoughts and prayers our way that her throat culture is negative for pseudomonas and all the other nasty lung-critters. We'll know the results in about a week, so start sending those healthy thoughts now!

Sunday, January 06, 2008

The Diving Bell and the Butterfly

My friend "Gorgeous Hair" and I saw the movie "The Diving Bell and the Butterfly" tonight. It's based on the true story of Jean-Dominique Bauby, the editor-in-chief of French Elle, who has a stroke in the prime of his life and career. It is, as it sounds, incredible sad. But strangely hopeful that a person in a paralyzed and silent state, could find a reason to live each day with the satisfaction of his memory and imagination.

At one point in the film, I turned to "Gorgeous Hair" and said, "This movie is so French." I can't really explain that further, you'll just have to see it.

I've never seen a French movie I didn't like.
But now, I am soooo ready for a comedy.

Friday, January 04, 2008

The Sun

I love the magazine "The Sun". They publish short stories, essays, and my favorite section of the magazine is called, "Reader's Write". The editor chooses a topic and the readers of the magazine write in with their personal stories. The stories are raw and unpretentious and always moving. I inevitably sob through this section of the magazine.

When I saw one of the upcoming topics was "finding out" I couldn't help but submit. I doubt mine will get published, but I thought I'd share my submission with you.

Topic: Finding Out

When the call came, I was alone with my four-month-old daughter. She instinctively knew something was wrong, and wailed with me as the doctor explained over the phone why she hadn’t gained weight in two months, why she was anemic, and why her skin tasted like she’d been dipped in the salty sea. The doc was calm, chatty even, making small talk while I fumbled through the house, looking for a pen and paper, to write down the results of the rest of her life. He must have felt that if he kept me on the phone, he could somehow prevent it from being real, from sinking in. With nothing left to say, he asked if I would be alright.

My baby was screaming and the floor suddenly felt like one of those bouncy houses parents rent for a child’s birthday party. I was dizzy and drunk with the knowledge that our worst fears, the one thing I had prayed wouldn’t be true, couldn’t be true, was now written on a post-it note.

Somehow, I managed to get out the words, “We’ll be fine,” even though I was sure we would never be fine again. I called my husband, my sister, my parents, and my best friend. Their guttural sobs on the other end of the line made it real. It wasn’t a dream. We would never wake from this.

I stood at the screen door, waiting for someone to come, to open the door, wrap their arms around me and say, “Everything will be okay.” And they all came, one by one, saying the only thing you can say at a time like this, “At least now you know.”

Goodbye 2007!

New Year's Eve, FD said, "Let's go to the beach for the last sunset of 2007!"

We raced to the ocean and watched as the sun dipped into the beautiful Pacific. Froggy collected sea shells, or as she calls them Shhheee Sheells! I love that she is amazed by the simplest things. She'll pick up a stick and say, "Mama, I found a STICK!," like she found the holy grail. Her enthusiam for life is incredible. I love this kid.

Thursday, January 03, 2008

Article on CF and Health Insurance

Grandma W. told me about a CF-related article in the LA. Times. Sadly, this will probably affect us since we have the same health insurance as the boy featured in the story. Ahhh, I'm preparing myself for another battle.

Here's the article.