Monday, June 30, 2008
It's time. I am going to write a tv pilot. I have an idea, finally an idea.
Since I'm a research freak, it will be a while before anything is actually on paper, besides a treatment, and tons of notes. But this feels good.
Sadly, my blogging will suffer. But I'll be sure to post pics and sometimes writing is the best distraction from writing. So I'm sure I'll need to procrastinate my scriptwriting with blogger writing.
Friday, June 27, 2008
FD and Froggy in the pool
Thursday, June 26, 2008
He did CPR on a woman for 50 minutes.
His first patient had severe Cerebral Palsy and could only communicate by screaming, while FD took his oxygen levels.
FD was offered a job on the weekends to clean respiratory machines. We're still debating whether or not he should take it.
During a break, FD called me and said how amazing it felt to be doing something important, to sit by the hospital beds, watch golf (and he hates golf) with an elderly patient, and to do something well. His RT instructor was super impressed and of course all the nurses were smitten. Back off girls.
The next eight weeks will be incredibly difficult for our family. FD has 12-14 hour days all week (with Fridays off) and may work on the weekends. The question is, how am I to work 25-30hours a week while being the primary caretaker of the world's busiest toddler, without help. Yikes. I'm tired just thinking about it, but incredibly proud of my husband and all he has accomplished.
Today he starts working in the hospital! He was up at 5am for his first 12-hour shift. He will be working under and observing other RT's, and will graduate next June.
And not that I'm biased or anything, but he was looking pretty cute in scrubs.
Wednesday, June 25, 2008
Tuesday, June 24, 2008
Monday, June 23, 2008
If Froggy hasn't moved Mount Vesuvious, we'll be admitted.
I won't have access to the internet in the hospital, unless I can Bogart one of the nurse's computers for a minute. So if I haven't posted by tomorrow evening, you'll know where we are. And we'd love visitors. Call FD if you want to stop by, and he'll tell you our room number.
But hopefully...you won't need to.
Friday, June 20, 2008
I caught a glimpse of you in the rear view
your tiara still attached to chlorine curls
a wand hanging from pruned fingers
tired of turning cats into horses
and the heavy business of magic
peeking out of street light shadows
the triangular fleeting shapes of your face made brow
and lips into a Dahli painting
where strangely everything made sense
in the fragments
I see the reason for it all
breathing the salty air of the pacific coast highway
where movies about lives like ours are filmed.
In the rear view you are perfect.
and I am just a driver
taking you wherever it is
you wish to go.
We did blood work to check electrolytes. If they were in any way abnormal, we would be admitted for at least two days. After being admitted, they would basically give her an IV laxative. It's through the nose, and lasts for four hours at a time. And they were pretty sure we'd need to do it a couple times....
Fortunately, her electrolytes were normal! She dropped a little in weight, but that's understandable. So they sent us home to really work on some big poos!
For now, we're pushing liquids, and giving her an all-white diet. White bread, white pasta, and no milk, no multi-grain anything. Tons of pedialyte, gatorade and nasty supplements. It will be a tough weekend.
Tuesday we have another appointment at Children's Hospital for more blood work and x-rays. If she's not cleared out by then, we'll be admitted.
So think POOP! Really concentrate on LOTS AND LOTS OF POOOOOOOO! Instead of a rain dance, we'll do a dookee dance, screaming "Goooooo Lax-a-tives!"
Thursday, June 19, 2008
Froggy has not been feeling well, digestively speaking since we returned from Iowa. So the doc wants to x-ray her belly to check if she's impacted. I'm sure we'll get blood work and other fun stuff, so keep us in your thoughts tomorrow.
It will be a long day. The hospital is about an hour away (with traffic) and we have to be there at 8:20am. Yuck. You all know how I feel about mornings...especially considering we have three respiratory treatments and breakfast to take care of before we leave.
I stopped at Target tonight and bought Froggy a new Barbie doll to open at the doc's. Hopefully that will be an even trade for x-rays, needles and hours of waiting. Yeah, right. Maybe we'll stop for ice cream too.
Monday, June 16, 2008
Our colorful girls.
Everyone looking a little possessed, but still cute.
Climbing up in the old trains.
I really miss Griffith Park. When FD and I lived in Hollywood, I'd hike up to the observatory a few times a week. In fact, Griffith Park was really the only thing I liked about living in Hollywood.
Since we returned from Iowa, Froggy has had a constant cold virus. I think she actually started recovering from one, when she picked up another. Then came pinkeye. And in the midst of the major mucus, she's been constipated, gassy, and spends sometimes four hours a day "trying" to poop. She can't leave my side, so I sit there for four hours holding her hand while she says, "my tummy hurts." The second she has a bowel movement, she's her cheerful, happy self. I've talked to our nutritionist several times, and we've increased her laxative, but somedays are still miserable.
And we have definitely hit the terrible-two's. Everything is a battle. For instance...
"Noooo, I don't like that shirt. Not THAT one, NOOOOOO!," screaming like her shirt is made of fire, rather than cotton.
"No vest Mommy! Nooooo! I don't LIKE vest. No treatment. No."
Froggymama: Are you hungry?
Froggymama: How about a Cheerio. One Cheerio. Just one.
Froggy: I don't like Cheerios. No. No. No.
From giving meds, to brushing teeth, putting on clothes, getting in the bath, getting out of the bath, reading a story, going for a walk, every detail of our life has become a battle. And I'm losing big time. I dread every moment and want to crawl into a cave and hibernate until she's four.
Last night we skipped her respiratory treatment because of her stomach pain. It was a tough call, but by the end of the day, we just couldn't "do" one more thing to her. So this morning it was extremely important that we complete her vest, albuterol and pulmozyme. But noooooo... she made her body stiff as a board, screamed, tore at her mask, and I could not physically hold her. Toddlers have an amazing ability to squirm out of any situation. It's like when evolving, they developed this ability to escape the grasp of a boa constrictor, or vulcan grip. Now, it's to escape amoxicilin, or eyedrops.
While trying to hold Froggy down for treatment, I lost it and really yelled at her. It was a major low point in Froggymama history. It was an angry, loud and frustrated yell, with a big expletive... and I feel terrible. I walked away, we didn't finish pulmozyme, and she completed her vest while I stood in the kitchen trying to catch my breath and calm down. Afterwards, I put her in bed with a milk, and she was so incredibly sweet and loving and of course that added to my mean-mommy-guilt.
And this stress is affecting FD and I and how we communicate and co-exist. He's frustrated and worried about school and I'm frustrated about getting my work done, and keeping Froggy healthy. So we take it all out on eachother.
I'm having a difficult time digesting our lives, if that makes sense. On one hand I'm appreciative of what we have, our wonderful family, friends. We don't live in a war zone, we're not starving, we have access (although it's frustratingly hard to actually get it) to amazing healthcare, we have a bright, kind, adorable child... we are so incredibly lucky. And on the other hand, I'm jealous of people who have healthy kids and don't have a daily financial strain. I miss my family. I'm exhausted and stressed out, overworked, and lately...just sad.
One of my favorite movies is "What About Bob," with Bill Murray. There's one point when he's trying to convince his therapist who is on vacation to see him anyway. He has the most pathetic look on his face and says, "Gimme, gimme, gimme, I need, I need..." It just says it all, because he never really says what it is he needs. It's just something, and without that something, it feels like madness.
Sunday, June 15, 2008
Saturday, June 14, 2008
Friday, June 13, 2008
Wine comes in at the mouth
And love comes in at the eye;
That's all we shall know for truth
Before we grow old and die.
I lift the glass to my mouth,
I look at you, and I sigh.
By William Butler Yeats
(Public domain baby)
I went through a Yeats stage. Okay, I'm still not out of it, where I read everything he wrote. Not much of a playwright (yikes) but quite the poet.
Sunday, June 08, 2008
Friday, June 06, 2008
A couple months ago, I had lunch with a mom (her daughter is 23 and has CF). She is doing well, in grad-school, continues to dance, and even with some long stays in the hospital and decreased lung function (85%) this year, is still feeling great. They're dealing with the lovely challenges of health insurance paycaps, and a child outgrowing her parent's insurance. Yay, something to look forward to!
Also, one of my best friends "Gorgeous Hair" has a young neighbor with CF. She's 21, and we all went out together on Monday (dinner and an Improv show). She's intelligent, witty, adorable, and had a lung transplant when she was 16. Her parents each donated a lobe. I know. I didn't believe it either, but it's possible. She explained that when people donate parts of their lung, the existing lung "fills in" the empty space. Incredible.
And yesterday I attended a webcast at our local CF chapter and met a girl who is my age (a ripe old 30) and she also had a double lung transplant, five years ago and is doing great. She looked so healthy I asked her if she had a child with CF.
I also met a dad who has a 15 year old with CF, who wasn't diagnosed until 5th grade. The dad is dealing with the challenges of a teenager who doesn't want to do treatments and take meds. Ahhhh, can't wait for that.
And it was great catching up with some other CF parents at the webcast who are always facing new challenges (allergies, nutritional issues, etc).
As much as I want to reach out and talk to everyone with CF, and ask a million questions, get involved, it is still incredibly difficult dealing with the reality of this disease. Sometimes you need to get through the day by forgetting, and sometimes even pretending that everything will be okay.
The other night I needed to cry, to be angry, and feel sorry for Froggy who doesn't deserve this, for everyone who doesn't deserve this. And even though the webcast was hopeful with new antibiotics, treatments and meds in the pipeline, it's still hard not to think, "This might be as good as it gets." Our healthy 2 and a half year old is as healthy as she will ever be. And when I watch her play, climbing the junglegym, swimming, so completely able and full of life, I can't help but go to that dark place of "is this only temporary?"
There are so many levels of grief to Cystic Fibrosis. It's not like when someone dies and you go through the stages of denial, anger, acceptance... Everyday, every week, we experience a new emotion. One day I feel elation that Froggy lives in a time of progressive medicine, and in the next second, sorrow that we were so unlucky to be the one in 3500, then anger that our daughter has to suffer what we don't have to, and the guilt of being a carrier of a defective gene, passing on something dreadful to our child.
And then we feel grateful that because of this disease we appreciate every moment, and we truly value Froggy's little life. I can't imagine appreciating my child with such a monumental love without the knowledge that we are so incredibly fragile, that our time together is measured in literal breaths.
And then there's hope. Hope is your best friend and worst enemy. Because you need it to get up in the morning, but it also has the ability to make you crazy, when life doesn't turn out the way you want it to...the way you hoped it would.
Being the parent of a child with a disease like CF, you are given an opportunity, to see life in a dark light. It is a constant balance of pain and peace, hope and devastation, sorrow and joy. And maybe that is the purpose of life, to find the balance, to accept the reality, but live in the hope.
Wednesday, June 04, 2008
Below is a poem you would never read in any anthology that is too cool for school. I love the Writer's Almanac, because they take risks; they post poetry that isn't written in iambic pentameter, or referencing the Greeks.
When I studied poetry (with writers who were in the infamous and mostly bitter U of Iowa Writers Workshop) it seemed that the only poetry admired was cold and undecipherable. If your poetry had any heart, you were considered sentimental and super lamo. I remember a kid in my class wrote a poem about his mom dying of cancer. It was beautiful and I'll never forget one line. As he held his mother's dying hand, he said, "I push all the love I can through my fingers." I will never, ever forget that. Our teacher was not impressed. Ten years later, I still am.
Here's another great one...about Iowa.
Invariably, a family in each one
And someone opening the fridge to fetch
A carton of milk, someone sitting in
A chair and shelling peas, someone looking
Out a window at a barn, two willow trees.
Solitude broods like a pursuing shadow;
A radio fades in and out -the voice
Eager yet eerie. Three ages anchor
The oaken dinner table: Mom and Dad
Up-before-dawn weary, Grandma perturbed
About half-thawed rolls, the children recounting
School stories, then silent. In the parlor
A whiskey tumbler rests beside a Bible.
The old collie whimpers when a car goes by.
"Farmhouses, Iowa" by Baron Wormser, from Scattered Chapters. © Sarabande Books, 2008.
Tuesday, June 03, 2008
A week later and I'm still posting pictures of Iowa. I've been so busy unpacking and getting our lives in order that posting has taken a back seat. Sometimes you have to make the hard decisions - posting on a blog... or grocery shopping for your family.
These photos were taken at Adventureland, an amusement park that my sister and I grew up going to. Many years ago, I wrote an essay about this place, so here it is:
THE BUMPER CARS
I’ve always been amazed by the calculated way life is so random. It’s like bumper cars with four billion people in a rink, running into one another, getting angry, falling in love; traveling in little blue, yellow and red cars with that electric buzz above us, all the while aware we are run by a grander force—the thirteen year old freckle faced boy pulling the lever, drinking a slurpee, thinking about breasts.
My sister loved the bumper cars at Adventureland in Des Moines, Iowa, because Disneyland was 2,000 miles away. Every year we anticipated that one hot summer day where we were each given a crisp twenty dollar bill for admission and a funnel cake, to bask in the black pavement of Midwestern amusement; that smell of tar and diesel, the sound of pressurized air, the scream of brakes on the roller coaster jarring to a sudden stop after loops and twirls and neck-wrenching splendor.
For one day out of the year we got along. It was a place where siblings actually liked each other and nothing could spoil the 364 day wait for downhill exhilaration. But it was the bumper cars my sister adored. She had the control to steer and veer, to choose her victim from all the rest, the poor soul or sister, friend or foe that for $1.25 could cry out in whip-lashed surprise. I hated the bumper cars. That zap above, indigo sparks, like an electrical fly zapper, snatching moths and beetles on my grandparents’ farm in the middle of the night; the small gnats barely audible, but every few minutes that deafening jolt of power through gigantic flapping wings. I hated the bumper cars.
The roller coaster with its clean departure, climbing the metal rung like latches on a belt buckle, to the top for a dramatic pause…overlooking acres of green corn fields, so green its almost blue, like the ocean we’d never known—and then before there is time for a single breath or ‘I wish I’d never done this,’ swoosh into the sea, laughing and crying, loving each turn more than the last-- and finally into the overhang, where we gasp and show off with exasperated faces for the poor fools waiting their turn. That was what I lived for, the roller coaster, that, and to lick the powdered sugar from my funnel cake.
My sister was magical because she was two years older and could make a tootsie pop last seven hours, with slow patient licks, savoring grape sugar for the better part of a day. And so it was that she would save the best for the last, the bumper cars for the night.
With strong parental concern, we were warned to stay together, forced to endure annoying sibling habits, like two very different peas in a pod. I was made to stand in line and watch the violent thrashings, the burnt rubber, the ferocity of children and grown adults smashing into each other in clownish cars, with seatbelts where one-size is supposed to fit all.
And when it was time to pick our cars, thirty screaming kids ran like rats to a donut. We would claim our own. We would ride alone. Climbing in, frantically attaching belt to buckle, the thirteen-year old freckle-faced boy pulled the lever and the electric jolt, the zap of power beneath our fingertips began.
My car roared as I distinguished break from accelerator. I peeled out into a circle and whipped around, searching not for a victim but a way out of my circular nightmare. Holding close to the sides, I drove around and around, avoiding accident after accident, the frightening, vengeful faces of strangers who were suddenly out to get me.
Finding a safe spot in a major traffic jam, I peered out to find my uteran partner in crime...and there she was, with a look so full of despair, like the world had let her down. My sister, my poor sister whom I’d hated for the better part of my eight years, was sitting in the middle of the rink, completely still. And then it hit me, not a car, but a thought, a realization that haunts me to this day. She got the DUD. The bumper car that for some reason failed to move or bump or swerve, and me in the Rolls Royce, speeding along, hating every second. How could this be? The park was closing. It was too late to wait in line—no second chances, no refund, no best for last. In the search for ultimate control, to steer and power her life for 1.5 minutes, she was denied. My sister got the Dud. And I realized that I loved her more than anyone.