My wonderful husband watched Froggy Wednesday night, so I could attend a screening of the film HEAR AND NOW. The director and her parents were there, and they had a Q & A after the screening.
The film was amazing!
I used to work in a theatre for the deaf and hard-of-hearing and am somewhat fluent in American Sign Language, so I have a huge place in my heart for ASL and deaf culture. If you have HBO, set your Tivo's. A little warning, although I am a huge sap... but I started crying in the first 3 seconds, and stopped during the end credits. So tissues are required, if you're a cheeseball like me.
Wednesday, April 30, 2008
My wonderful husband watched Froggy Wednesday night, so I could attend a screening of the film HEAR AND NOW. The director and her parents were there, and they had a Q & A after the screening.
Tuesday, April 29, 2008
Nap time is hell. It's at the very least an hour of screaming, crying, flailing, sobbing, hitting, biting, jumping hell.
She isn't asking for her pacifier, but she's definitely miserable, and missing the comfort of a pacifier to fall asleep.
Any advice? I can't do this everyday. She can't do this everyday. Help!
Monday, April 28, 2008
I have an autographed copy. And this is what she wrote:
I imagine she wrote this to one of the child actors or perhaps the son of a director or crewmember from the film. I can't imagine anyone misplacing this book. But here's an essay-explanation of how I became the proud owner. (I wrote this about six years ago, while working at Trader Joe's in the mountains, outside LA. It was where I met Froggydadda, but that's another story).
I work in a grocery store. It’s a thankless job of weekend stocking from five a.m. until midnight. We are open on holidays and full moons, attracting the moodiest of customers who want their cheesecake and Salt n' Vinegar chips, like an addict just released from doing hardtime. And if for some god-forsaken reason our warehouse leaves us short, we prepare for fifty-year-old temper tantrums and threats like, “Don’t make me go to Ralph’s,” or “I’m never shopping here again!,” as they fill their cart with cashews and colon-cleansing supplements.
I adore the children, ironically for their maturity. They are always thrilled with stickers and a cart ride through the parking lot. They, unlike their parents, say “thank you” and smile in line.
I had been in LA two months and was close to believing that every single person was rotten, when this woman entered my checkout line. It had been a terrible day of cranky old men with hair growing out of every visible body part except the top of their head… and I was in a bad mood.
She was friendly and this shocked me. I almost mistook it for patronization. After she was totaled and paid for, she smiled behind an overflowing cart and I suddenly felt like a good person who wanted to help another good person. I asked her if she would like a hand to her car, and seeing no one behind her, she agreed.
Leaving the job in the afternoon is startling to the system. It confuses night with day and work with fun. The sunlight was almost painful as it erased the fake environment I had become accustomed to for six hours.
The woman helped me load her bags in the trunk. I think it was a Volvo or VW, which assured me even more that she was cool. As I was about to leave, I noticed a copy of To Kill a Mockingbird crammed between the back seat and extra large eggs for $1.29.
“That is my favorite book!” I blurted out.
There is something wonderful about people who always have a book in the back seat. They can be trusted. I would hitch a ride with a total stranger with brilliant literature and Joni Mitchell on the radio.
She told me it was for her church rummage sale. I continued to drone on about how amazing Harper Lee was and how Scout and Jem were the heroes of all tree-huggin, cheerio eatin’, curtain climbers everywhere. And then she said, rather non-chalantly, “Well, it’s signed by the author.”
Okay, I’m a pretty laid back person who doesn’t freak out at the people on “The Apprentice.” I don’t even honk my horn in traffic unless there’s a dog in my path or swerving for a squirrel, but I almost wet myself in the grocery store parking lot, which is on a crude slant and would’ve caused an embarrassing spill for all our valued customers.
“Take a look at it,” she grinned.
Like the holy grail, I plucked the copy from it’s automotive tomb and opened to the preface, where before me was a handwritten note from Harper Lee to her friend, Henry. And it was as if I was reading a letter from Harper Lee to myself. I couldn’t help but personalize it. I know it’s egotistical, but we all in some way assume a writer’s word was written exclusively for the individual, rather than a collective audience. And maybe for that reason alone the written word empowers us to change the world and ourselves. It isn’t just a story, or just a play, just a poem. It’s a request from someone in tune with the rhythm of words, asking us to dance and sing in their story.
All I could say was, “This is amazing,” and “Do you know how amazing this is?” I was a deer caught in the headlights of a brilliant moment. I was shaking as I handed the hardcover back to her. And then I uttered something profound like, “That is so cool.”
She smiled or maybe she was smiling the whole time. I closed the door and turned to walk away, already thinking of how I would tell my sister that I touched a book that Harper Lee touched. The woman said “Wait,” and held the book out to me.
“This is your favorite book. You should have it.”
“No, no, no!” I was actually shaking my head as if she had just proposed to me and I was pregnant with somebody else’s child.
“Please, it would make my day to give this to you.”
Now all these thoughts were racing through my head. The first: I don’t deserve this just for throwing some groceries in her car. Second: I hope I double-bagged and Third: I could never give such a gift. These were humbling thoughts and my head continued to shake.
“Are you sure?”
“Take it.” She placed the book in my hands, smiled, got in her car and drove away.
I think I ran into the store. I had just won the literary lotto and had to tell everyone.
“Cool,” was the main response from the crew. Cool, I thought, cool? They had no idea. I told every customer who would listen and called my sister when I arrived home.
“What’d you do?” she asked.
“Bagged her groceries.”
“And she just gave it to you?”
That day extended throughout the week and my work seemed a little less tedious, the hands on the clock moved faster and people even in their tantrum state, hands in the air screaming, “Cheesecake now!” seemed funny and I loved them for being so completely human, capable of crude public acts and also capable of extraordinary kindness.
What an amazing gift that Harper Lee wrote this book, gave it to the world, to the woman who gave it to me. And I thank them both for their brilliant generosity and for making a bagger at a grocery store feel that my job and my presence in this world is important.
Friday, April 25, 2008
Froggy suffered withdrawals, flailed, screamed, pleaded, begged, sobbed, went on a nap-strike, stayed awake til 10pm, and has finally kicked her nuk habit. It wasn't pretty, but it's over...I hope.
Sunday, April 20, 2008
I always dread that call, but when it's good news, we want to shout it from the rooftops!
Woo Hoo! Healthy Lungs! Woo Hoo! Healthy Lungs! Woo Hoo, Woo Hoo, Woo Hoooooooo!
Assuming her next culture comes back negative, we will be able to stop her two 45min inhaled antibiotic treatments everyday! I am sooooo looking forward to that!
Sunday, April 13, 2008
The other day, I told Froggy that we needed to go run errands for my boss. She thought for a second and said, "Ya know what mom, we can do anything we want."
Froggy is very dramatic (no idea where she gets that) which makes for interesting discipline tactics. She LOVES 'time out.' I think it's the process and ritual of time-out that she enjoys. A week ago, she climbed up the bookshelf, climbed down, walked over to me and said, "I naughty...I need a time-out." Her face was serious and tragically sad, in a Charlie Chaplin kind of way, almost mime-ish.She then walked over to our designated time-out chair and enjoyed a self-imposed time-out. The exaggerated expression of disappointment in herself was one of the funniest things I've ever seen.
Tonight, while I rocked her to sleep, she said, "Guess what Mom?" I was trying very hard not to laugh, because she's never used that phrase before and it was so adult and strangely reminded me of those 1980's "Summer's Eve" commercials. Eww, I digress. So she said, "Guess what Mom?... We're going to Iowa!" I told her about our upcoming trip to Iowa in May, and she is soooo excited. Her memory is amazing. She can list all our Iowa family, even Aunt Arctica and Uncle Jiffy Pop's dog, Ruby.
Grandma W. babysat on Saturday. Froggy kept walking over to the computer saying, "Time to check my emails."
Saturday, April 12, 2008
When the gene for CF was discovered in 1989, overzealous scientists predicted the cure would be found within five to ten years. I've spoken to parents of kids who were diagnosed 15 years ago, and were told by their doctors not to worry, they'd have the cure by the kiddo's fifth birthday.
From my very humble CF research, it's clear that scientists, docs, drug companies and even parents have casually used the word 'cure' without thinking about the implications of it not happening. I'm guilty. Big time guilty.
Today was our CF Education day at Children's Hospital. They discussed the new drugs and treatments in the pipeline but our CF expert was very careful never use the "c" word. She said, as a researcher, she has become somewhat bitter because of the many promised cure-alls, like fish oil and curcumin, and then the tragic early research on gene therapy that resulted in the death of a CF patient.
I am quick to tell everyone that the cure is coming. That hopefully before we have the "talk" with Froggy, we will be able to assure her a long and healthy life. As a mom, the "cure" is too tempting, not to wish for, pray for, and sometimes expect.
Realistically, I understand that gene therapy is not anywhere near curing anyone. And because there are thousands of strains of CF, every patient is different, therefore, every patient responds differently to treatments. I don't know if there will be a pill in Froggy's lifetime that eliminates all symptoms of CF. Even if the pulmonary aspect is solved, Froggy may still have pancreatic insufficiency, and the likelihood of CF-related diabetes.
This keeps me up at night. And as difficult as it is to read all the articles, and attend forums, as Froggy's advocate and Mama, it's necessary. I understand the danger in promoting the concept of a cure-all, for a very complicated disease. And I know that when articles suggest a cure, even if it's for 2% of the CF population, it could affect the funding for the necessary research for the other 98% of people with CF whose genetic type was not cured.
However, I do believe that Froggy will live to 100. With preventative care, new inhaled antibiotics, and drugs that can open an alternative chloride channel, I think Froggy will have the privilege of growing old, and wrinkly and cranky, like the rest of us.
I hope I've never offended anyone when I speak so casually about the cure. It's the mama in me that believes that her kiddo is perfect, and brilliant, talented, and special, and it's the mama who believes that there HAS to be a cure. Because the alternative is unthinkable.
Friday, April 11, 2008
Sissysnuggiekins gave Froggy a tricycle! It was one she and her dad salvaged, so Sissy spray-painted it, fixed the handle and put custom stickers on it for her sis. I'll post pictures of her cool bike soon. Thanks Sissy! Froggy loved it when she woke up! She hasn't figured out the pedals yet, but I'm sure FD can teach her.
Thursday, April 10, 2008
And she is FABULOUSLY, WONDERFULLY, STUPENDOUSLY, AMAZINGLY, MIRACULOUSLY HEALTHY!!!
For the record Froggy is 31 months old. And she weighs 26 lbs. 10oz and is 34 inches tall. So that's about 25th percentile in both height and weight.
Can I brag a little? Yeah? Froggy was a model patient. She let the doc listen to her breathing, take her pulse oximetry, temp, blood pressure, weight and height. And even when they took her throat culture, by sticking a swab in her throat, she sat there like an angel and said, "That didn't hurt!"
I was so proud. Even if she had shrieked (which she sometimes does) I would be proud. She is a tough kiddo and I love her more than the world. But somedays she is beyond amazing. Today was one of those days. I love, love, love my Froggy.
It will be a pedal car so she can cruise the neighborhood, taking her pals to the park, and basically ruling our hood. FD already has dreams of visiting car shows and parades with his toddler and her cool wheels, while I'm ready to enforce helmet rules, and be on the lookout for cars backing out of driveways.
I can't believe how completely excited Froggy is by this car. She keeps asking when Grandpa J. will return, and,"oh, the car too." She's diplomatic enough to make the car seem like an afterthought. But I know the truth, she is LOVING the idea of driving her red little race car. Lately, she's wanted to sit in the front seat of our Saturn and steer, pretending to shift, and maneuver. She'll even copy my driving mannerisms, saying, "ooh shoot," as she veers from an imaginary traffic jam.
This will be such an incredible childhood memory for Froggy -- her Grandpa building her a car. I'm excited for her. And sometimes it's even more fun for us, as parents, living vicarious race car dreams.
And then click HERE TO MAKE A DONATION so the Foundation will have the money for this amazing research.
And if you haven't yet watched our Photo Montage of Froggy, click HERE.
Whewww, that's a lot of clicking.
Monday, April 07, 2008
The Language of God by Francis Collins. -- Dr. Collins was head of The Human Genome Project and one of the brilliant scientists responsible for discovering the gene that causes Cystic Fibrosis (so you gotta love him!). I heard him interviewed on NPR and was intrigued. He was an atheist who became a Christian later in life and doesn't embrace intelligent design, but has his own explanation on the debate of creationism vs. evolution. He wholeheartedly embraces evolution, as a scientist, but also believes that God is present in our daily lives. In his book he said, "The God of the Bible is also the God of the genome. God can be found in the cathedral or in the laboratory." He believes that the cure for CF is not only possible, but very close. So of course, I love, love, love this man! Of anyone, I have found his beliefs to be the most similar to my own. You can't refute evolution and the Big Bang, but I've also had profound and powerful spiritual experiences. So, there you go, a happy medium.
The Happiest Toddler on the Block, by Dr. Harvey Karp. Ahhh, one of my many parenting books about how to raise a well-adjusted child. It basically teaches the parent to speak to their child like a neanderthal, because toddler brains have only evolved to cave-baby status. I must say, it works. And Froggy is pretty happy, even if she is writing on our cave walls, and peeing on the rug.
Water for Elephants, by Sara Gruen - Finally, some fiction! This was a great book about a veterinarian who travels with the circus. Love, sex, murder, elephants, what more could you want out of a book. It was a quick read, and I couldn't put it down. I wouldn't classify this book as literature, rather entertainment.
The Seat of the Soul, by Gary Zukav - Okay, I'm a little embarrassed to admit I read this. It's about aligning your personality with your soul, and blah blah blah. There were some insightful chapters, but it was a little too much "karma talk" for me. Life is hard enough, not to feel like you're being punished for past lives. Geesh.In Defense of Food, by Michael Pollan - Again, non-fiction. I'm obsessed with Michael Pollan. He wrote The Omnivore's Dilemma and The Botany of Desire. He's a foody, who believes that we should all shop our local farmer's markets and embrace the French style of eating, that centers around enjoying food and life. He believes that food is political, but I can't imagine a more diplomatic writer. If you haven't read his work, you are missing out. I'm happy to loan my books, if you're interested.
And I just started Shantaram by Gregory David Roberts and Foreskin's Lament by Shalom Auslander. The latter is my book club's choice, and is a humorous memoir about growing up in an Orthodox Jewish home. Along with my desire to attend more theatre, I'm desperately trying to read more. It keeps me sane, and encourages my brain to form complete sentences. Because, "honey, don't, let Mommy help, okay, give me Elmo, no, let go, okay, we go play now, go pee pee, okay, have a juice box, time for playdough" is just not poetic.
What are you reading?
Sunday, April 06, 2008
The original Mimi
When Froggy was in the hospital, a friend gave her Mimi -- a lamb blankie that is not only necessary for every nap and bedtime, but a dear, dear friend for Froggy. She LOVES her Mimi (Lambie). Fearing that she would someday lose her Mimi, I bought her two more. But Froggy only has eyes for her worn, yellowed, holey Mimi. The newbies are no substitute for true love.
My husband never throws anything away. Ever. An old pair of jeans with rips and tears will one day be used in a tapestry. Magazines are stored in our overflowing carport for future collages and art projects. He and his father vacation junkyards, taking photos of old cars, but he inevitably comes home with doll heads, antique tinker toys, soda bottles, rocks, books, papers, letters, a comb, or a rusty, jagged piece of carburetor. He's a collector, an admirer of things. And as much as I admire his admiration, I really hate it. In fact I'm one of those mean wives who meets her husband at the door after a trip to the junkyard with arms folded saying, "No way are you bringing that into the house."
It's not because I don't appreciate the artistic quality of an old door handle. I do. But space is an issue in a two-bedroom apartment with two adults, one toddler, two cats and a Pomeranian. And someone has to be the bad cop, choosing diapers over car parts, groceries over tootsie toys.
In college, above our fireplace, my sister and I had a mangled car bumper hanging on the wall. It was art. It was, in a strange way beautiful, the random twists and dents of metal. But what gave it purpose, was that she was in the car when that bumper was smashed, hit by a drunk driver. She survived basically unscathed. But the bumper became a reminder to me of how precious my sister’s life is. It wasn't just metal, it was a story. There was meaning attached. And that is what separates art from junk. FD feels differently, oh yes. You might say, "one wife's junk is another husband's treasure."
This is a point of contention in our marriage, as I'm sure you can hear in the tone of this post. We have about seven deconstructed bikes in our carport; a wheel here, a frame there, pedals, chains, etc, etc. I fantasize about renting a u-haul and dropping these never-to-be-built-bikes off at the nearest junkyard, but I know the repercussions would be huge and futile. He would just hate me, and keep collecting handlebars off the freeway.
A couple weeks ago, I threw out moldy photos and paper scraps from the carport. FD had found the photos at a junkyard, but the rain and weather had completely erased the images. These were white, soggy, moldy pieces of paper. And our morning doves, which nested above, had also used this 'found art' as their bathroom. But...you wouldn't believe how devastated FD was that I threw these prized possessions in the garbage. I thought for sure a messenger was going to show up at my door with divorce papers. I felt like a terrible wife, and yet, where do you draw the line between one person's passion and another person's sanity?
So I've been thinking. What things do I value, even more than my marriage (I'm kidding). What do I have to have, but not necessarily use. When asking FD if I can throw away a holey sock, he'll say, "I don't make you throw away your books!" And that's true. But I am always replacing the old with new, donating to friends and goodwill. I use them for references, and with poetry, the joy is in the re-reading. I lend, I trade, so it's more about the process of books, than the keeping of them.
It only occurred to me today while opening a letter from my mom that I was guilty of being just as crazy as my husband. After reading the letter, I put it in a box with thousands of other letters and cards. I realized my sacred possessions are 'thoughts on paper.'
If you have ever sent me a card or letter, or poem, recipe, scribbling on paper, I've saved it. My collection is in the closet with old high school poems, love letters, teen angst stream-of-consciousness crap, that I will hopefully have the wherewithal to burn someday.
Why can’t I throw these letters away? They're just words.
In a cigar box I have a small notepad where my grandfather, who was a farmer, wrote a list of seed and fertilizer prices. Nowhere in the notepad did he write anything meaningful or profound. It wasn’t a love letter, or journal entry, only numbers. But I will forever have a paper with his handwriting. In a way, it's an extension of him, like a fingerprint or snippet of hair. If I save his writing, it keeps a part of him alive. Maybe I save cards and letters from everyone, to preserve their essence on earth, to keep them immortal. This act of collecting handwriting is a symptom of my biggest fear; the fear that the people I love will someday die. It is insane, I suppose, saving every recipe and envelope. But the concept of collecting has very little to do with utility.
I won't pretend to understand my husband's affinity for collecting broken glass and sticks. Maybe it's deeper than just holding onto ‘things’. These car parts and doll heads were once valued pieces of someone’s life. And perhaps FD can’t stand the thought of them losing their value. Maybe he’s the junkyard saint, saving the souls of toys forgotten. Or I’m romanticizing, and he’s a packrat and I’m neurotic. I guess we’ll just let you decide.