Sunday, July 29, 2007
The reality of Cystic Fibrosis comes over me like a wave, like a labor pain. It is all consuming, and I can't breathe, or think about anything else. And it's always a surprise, like when someone passes away and you wake up remembering that they are gone. This disease lives just beneath the surface of our lives, poking out of a smile, or storytime, the simplest things. All of a sudden, I'm paralyzed with the reality that this is our life, this is really our life --these were the cards we were dealt, and there's nothing I can do about it.
It usually hits me at the end of the day, when everyone has gone to bed. Like right now. Saturday Night Live is almost over, and for some reason, I'm really feeling it. It's kind of like loneliness, that can't be healed with human company.
I know Froggy will survive this. Not just because I want her to, or because the research is making such progress, but because I feel it in my gut. But I also know that her life will not be easy. I know that everyday will be filled with hours of maintenance and pills, nebulizers and doctor's visits. Even the best case scenario is a tough road. And when I look at her while we do treatment, and as she watches "Make Way For Noddy" or "Dragon Tales," she is so content with the routine of CF. Her treatments are a part of her daily life, that she never questions. It's like eating breakfast or taking the dog for a walk, just something we do. But one day the idea of CF will come over her like a wave, wake her up, and become very real. She'll wonder why she has to spend two or three hours every day breathing through a nebulizer, why other kids don't take pills and supplements, why her crazy parents are always forcing her to eat. One day it won't feel natural or routine.
I can only hope that before that day comes, there will be a cure. In my heart, I feel that the cure will come in the form of more treatments. Maybe there is no magic pill, or shot, that completely solves everything. But as a mom, I will take anything that adds days, weeks and years to her life, our beautiful, wonderful and real surreal life.
Friday, July 27, 2007
Froggy - The Laundry Maid
All day, I fold and fold. I'm paid only enough for a milk.
But I still consider myself a happy child.
Thursday, July 26, 2007
But after seeing her best friend, she cheered up. Hummingbird's mom looked up all the signs of a concussion, and Froggy had none of them. The swelling has gone down, but now it's purple.
Today we tried out Froggy's new pool. It's a 'splashing' pool that hooks up to the hose, has a little slide and blow up dolphin. She and Hummingbird had a blast. Froggydadda doesn't want me to post pics of Froggy in her swimsuit, because this blog is open to the public and anyone can view it. I'd hate to believe that perverts view family websites, but I'm sure it's true. So we're not going to take the risk. But I'm happy to email pics to family and friends.
Tuesday, July 24, 2007
I miss weather; thunderstorms where the lights flicker and the dog hides under the bed, the smell of earth and grass, wet leaves and black soil. I love that electric feeling on your arm hairs when you step outside before a storm, and the warm stillness when the air feels heavier than it should. Southern CA is just too perfect, too sunny for me. How can you appreciate the sun without the storm?
Living for a year without a single rainstorm is freaky, like a Twilight Zone episode. It's just unnatural. I need green -green grass, green moss, green trees, green vines. I'll deal with the humidity and snow, if at some point in the year it's green. But this brown is lifeless, brittle and vulnerable. It begs to be more than what it is. Sometimes I feel the same about Los Angeles. It's livable, pleasant, even sunny, but there's just something missing.
The first Iowa State Fair was held in Fairfield, in southeast Iowa, October 25 to 27, 1854. Our family goes every year. It's a hot, smelly, crowded, family tradition. The fair is only fun for people who live in Iowa, and have been going every year since birth. It's kind of like Catholicism, only tolerable if you were born into it. Otherwise it's just a freak show.
I'm kidding. I genuinely LOVE the fair. And Catholics.
The world famous Butter Cow. What do you mean, you've never heard of it? Every year the cow has a different theme. One year he's Elvis, the next year, he's stuck in the middle of a Peanuts cartoon. I can't wait to post this year's theme! A political cow perhaps? A Hillary Clinton or Mitt Romney heifer?
I have no idea what this man is doing to this poor cow.
The ski lift is for the majority of fair goers, who just happen to be over 1200 pounds, after eating the corn dogs, turkey leg, and deep fat fried snickers bar. The ski lift will actually carry your fat butt up the hill, so you don't have to walk.
I can't wait for Froggy to pet her first calf, piglet and lambie! She's
going to love it.
My favorite fair activities are:
Checking out the world's largest sow, standing in line for a close up of the butter cow, eating (in this order) a corn dog with a lemonade, wonder bar, turkey leg, pizza with a root beer, another wonderbar, or a caramel apple, a couple beers, and then a Tums. In between eating, we hit the photo exhibit, the quilts (mom is the only one who likes the quilts, but we humor her), the various barns with all the baby animals (who will be slaughtered later on in life, but we don't think about that while petting them), the horse barn, the honey comb and bee exhibit (one of my favorites), the yodeling contest, agriculture building (with deformed squash and huge pumpkins), 4-H exhibits, the varied industries building, and last but not least, the beer tents and a walk through the midway, where the toothless Carnies really know how to compliment a woman with a "hoooyeee girlie, fity cents gets you a chance at this here giant stuffed Bart Simpson!"
Ahh, not much has changed since 1854. I can't wait to share this tradition with Froggy!
Friday, July 20, 2007
"Maybe if I stick my tongue out a little, I'll run faster."
Run Grandma Run!!!
I used to look forward to our walks. They were leisurely and pleasant. We stopped to smell the flowers and visit our neighbors. Froggy was safely and securely strapped head-to-toe in her stroller, munching on Cheerios and pointing out the wonders of the world. Our daily jaunts around the 'hood helped me regroup, breathe, and gather sunshine. It was my favorite part of the day. But a month ago, Froggy decided that she wanted to walk. Wait, maybe I didn't quite make myself clear in 22-month-old language. So I'll translate. She wanted to WALK, and under no circumstances would she accept being strapped down, because...
"It's totally claustrophobic in my stroller, man!, I'm a mini-woman on the go, I got things to do, doors to knock, sidewalk cracks to jump over, jasmine to pick, kitties to chase, people to greet, sticks to poke in holes, fences to climb, bugs to jump on, lawn ornaments to torment, I rule the neighborhood, so no strollers allowed!"
For a few weeks we navigated the city streets sans stroller, with Buddy leading the way. But while the dog ran one way, Froggy ran up to a house, knocked on the door, stuck her hand in the mail slot, ran dangerously close to a Rotweiler, and tried to kiss a bee that had nestled into our neighbor's rose bush. I realized that Buddy and Froggy together would eventually divide and conquer...me. Buddy was already on a leash. That meant only one thing. The kid would have to join him.
Froggydadda vehemently opposed the baby leash decision. But after careful consideration of his feelings, I decided they were invalid. Okay, okay, not invalid, just ridiculous. He believed that it was unnatural to tether a child, like a prisoner or dog. Geesh! What psychological affect would the "strapping down" of our baby have on her future life's happiness. But I assured him, "honey, we're gonna screw her up on so many levels, this is the least of our concerns. Trust me, in therapy twenty-years from now, she won't even remember the leash. She will however bring up the fact that her parents danced along to her Sesame Street dvd's and knew all the words to "The Ladybugs Came to the Ladybug's Picnic." Or maybe she'll need to discuss with a therapist the reasons behind her father incessant need to bring home random junk and store it in our car-port (ya know because we really need another bike tire, or decapitated doll's head), or how her mom yells at the neighbors to quiet their car alarms, or promises to follow the fruit truck home one night to dismantle the horn that plays "La Cucaracha", or how her dad whistles constantly to weird, random theme songs like, "Melrose Place" or "Bonanza," or how her mom recorded every embarrassing, cute and memorable experience of her life on a blog, so that family and complete strangers could tease her about it when she's sixteen, and remind her boyfriend that when she was a baby, she'd toot in the tub, screaming "Peeeeuuuwwww!"
So after careful consideration of only my feelings, I decided that the baby leash was a necessity and Grandma W. agreed. The great thing about a baby leash in 2007 is that they are cleverly disguised as cuddly stuffed-animal backpacks. Froggy has a puppy-pack that wraps around her chest, has a cute puppy head peering over her cute baby shoulder, with a cute little puppy tail, well, that acts more like a leash than a tail. It's so cute, one would hardly notice that upon running too fast, she suffers whiplash.
I must say it doesn't really bother me that the general public feels we're confusing our child as to what species she belongs. Because the general public doesn't know Froggy. Today on our walk, we tucked the baby leash in the stroller assuming that together, FD and I could handle the little tadpole. In .00005ths of a second, Froggy dashed into the street. Fortunately, there were no cars coming. But there could have been. This kid is so fast, we would have to be psychic to anticipate her next move. And I guess I'd rather look like a bad parent, than actually be one.
We can chalk this up to yet another thing I promised I would never do as a mom. I'll use whatever tactics, no matter how unconventional to keep my baby safe. Hopefully by the time Froggy is 14, someone will have invented the teenager leash, keeping her out of backseats and vans. Someday. And, I have a feeling FD will be more agreeable to that one.
Sunday, July 15, 2007
I'm anticipating that perfect time of life,
Saturday, July 14, 2007
First the bank. Then Trader Joe's.
Then she smells the air and says, "Peeeeuuuuuw MAMA!" The little stinker blamed me and a monkey for her gas. My gut feeling is that Froggy is spending too much alone time with Froggydaddy. I'm thinking about installing a nanny-cam in the monkey to catch Froggydadda teaching her these stinky tactics.
On the way home, this was our conversation:
Froggymama: We had a fun day didn't we? Wasn't it fun?
Froggy: No, no fun, no.
(Froggymama laughs hysterically all the way home).
The little tadpole is in her crib now, pretending she's not tired. While I was rocking her and giving her a milk bottle, I was lost in thought, staring ahead thinking about the massive piles of laundry we have, and no quarters for the machine. Usually when I rock the Frog, we stare into one another's eyes, I sing, or talk to her about why she's so special. It's my favorite part of the day. But today I was tired and a little overwhelmed by the amount of work ahead.
Obviously annoyed by her mommy paying her little attention, Froggy took the bottle out of her mouth and very louded cleared her throat with a big, "Eeeeeheeem." The second I looked down at her, the bottle went back in her mouth and a look of satisfaction spread across her face.
So think about Froggy's generation! With all of the new treatments, antibiotics, and ones in the pipeline, she could have normal lung function for her entire life. Yay!!! I love reading good news.
Thursday, July 12, 2007
She knows all of her colors, even mauve.
Froggy can repeat almost any word. Ya know, if she feels like it. And she's really into body parts and clothing. She'll point at me and say, ear, nose, cheek, knee, arm.
I told Froggy that her baby monitor is not a toy. So now she plays with it and calls it "toy".
We're trying to stress manners. Today when she was jumping on the couch, I said, "Get down please." When she did, I said, "thank you." A second passed, she looked at me very seriously and said, "you're welcome."
Yesterday Froggy said for the very first time, "I wuv you mommy." Although I must admit that the day before, she said, "I wuv you Buddy." But I'm happy to come in second.
Froggy eats crayons. She prefers pink. It must taste like grapefruit. I'm a little scared to try playdough.
On that note: I've called poison control about seven times. The conversations went something like this:
Me: Hi, my daughter just sucked on a sharpie. Will she live.
Poison Control Person: (laughing) Oh yeah, kids love sharpies. Just give her some water.
Me: Hi, my daughter just licked the top of a can of Comet.
Poison Control Person: It's an irritant, but don't worry. Just give her some water.
Me: Hi, my daughter licked my phone battery, hi, my daughter licks the bottom of my shoes, hi, my daughter eats soap, lotion, pennies, sand, dirt, feathers, lint, cat and dog food, dips her pacifier in the dog water and in my coffee.
Poison Control Person: Just give her some water.
Her obsession with shoes is hilarious. I have a cloth shoe rack that hangs from the back of our bedroom door. She points at it and says, "shoe, shoe, shoe, shoe, shoe," only to be satisfied when I find the exact pair, she desires. Tennis shoes, ohhhh no. Slippers, nope. Sandals, I don't think so. This girl loves heels. And at 22 months, she can walk more gracefully and take corners better than her mama. Our poor neighbor downstairs must believe we're purposefully tormenting him.
Froggy is just starting to speak in complete sentences. A few examples:
Froggy: Buuuyeee (Buddy) side (outside) go, c'mon Buuyee, c'mon.
Froggy: Mommy, peeeeuuuew mommy. (when SHE toots! Taking after her father, she blames me!)
Froggy: Pipoooooo (Piper) Peeeanut, Buuyeee, tweet (treat). As she throws some cheese on the floor.
Or a phone conversation she had on her Elmo phone:
Froggy: Hi, hello, hi, cool, bye.
And the last cutie patootie, adorable thing that she does is... When I put her in her crib at night. She says, "kissy mama, huggy mama." And I kiss her forehead, chin, nose, cheeks and toes. And then she rolls over and says, "night night."
I love this kid.
At the Children's Violin Concert
Firmly bowed strands of horse hair
tightened or gathered up by
a small hand to play
a piece by J.S. Bach
who drank 36 cups of coffee every day.
I like him because he was
inspired by his belief in God
& he played the organ in a church
in Leipzig & he walked on
cobblestone streets to his home
every evening where he fathered
many children & wrote music
for his wife to clean house by.
He worked hard all his life
& when he died, he left us
all the little notes he made
for himself while he was alone.
Tuesday, July 10, 2007
Froggy is 24lbs and 32.7 inches. She's in the 25th percentile for weight and 50 percentile for height.
Our doc said she has NEVER seen a CF kid grow so fast. When we were in the hospital with her at four months, she was 7 lbs. 11oz. That's the exact weight I was at birth. She was completely off the charts, in both weight and height. Now, she's a tank. Okay, not a tank, but maybe a jeep, or a sensible sedan.
We told our CF dietitian that Froggy loves avocado, peanut butter, roast beef, cheese and anything salty. She almost fell off her chair with delight. She said Froggy's body/mass/index is great. The BMI has a lot to do with lung health. For some reason, CF kids who have a higher bmi, have better lung health. No one really knows why they are connected, but docs like CF'ers to be atleast in the 50 percentile for height and weight. The dietitian measured Froggydadda and Froggymama's bmi (when we were 18 years old) and FD's was 20.8, mine was 17.8. Which means nothing to me. But it's the equivalent of me being in the 10th percentile for weight, and FD in the 25% for weight. So genetically, the fact that Froggy is in the 25th, even with CF is outstanding.
We won't find out the results from her throat swab for another week, so please say a little prayer, chant, howl at the moon, that it's negative for pseudomonas and all the other nasty little bacterias.
Froggy was an angel at her appointment. I dressed her in a t-shirt that says, "I'm kind of a big deal" for the occasion. And she lived up to it. She stood on the big girl scale, let the nurse take her temp, oxygen level, blood pressure, height, listen to her lungs and heart and even the throat swab was painless, well, she cried for about 3 seconds, but who could blame her?
Mommy however got reprimanded for bringing my cinnamon latte into the exam room. But can you blame me? Right as you walk into the hospital, they have an espresso cart that telepathically shouts to all passerbys, "YOU NEED CAFFEINE!" I was powerless. And it was sooooo worth getting yelled at. Bwaaa haaa haa. Don't mess with my lattes. I mean it. Step away from my foam.
Our next CF appointment isn't until October, where she'll have a chest x-ray and have blood drawn. Poor baby.
Froggydadda and I are on cloud nine today. There is just nothing better than having a healthy kid. Nothing. We are so lucky.
Monday, July 09, 2007
Every year without knowing it I have passed the day
When the last fires will wave to me
And the silence will set out
Like the beam of a lightless star
Then I will no longer
Find myself in life as in a strange garment
Surprised at the earth
And the love of one woman
And the shamelessness of men
As today writing after three days of rain
Hearing the wren sing and the falling cease
And bowing not knowing to what
I'm not dying or anything, so don't worry. I just love W.S. Merwin and heard him speak at the University of Iowa, when I was a student. I was hoping he would read this poem, but he didn't. He read his more current work. It was disappointing, like going to a concert of your favorite band. You expect they'll play the songs you know, the songs that made them famous, the songs you rehearsed in the shower, with a shampoo mohawk, and nozzle microphone. But they surprise you with all their new work, and you just can't wait to get back in the car and listen to the music you already know.
Maybe I'm a bit dense, but I'd never thought about the fact that every year we live the anniversary of our death. We eat lunch, we fill up our car with gas, we brush our teeth, completely unaware that it is an anniversary of something that whether we like it or not, will happen someday. It's inevitable. And the inevitableness of it, is actually what makes it less frightening for me. If death was something I could avoid, by eating my vegetables for 1000 years, or looking both ways, it would be more frightening. Having no control just takes the pressure off, ya know?
Thursday, July 05, 2007
Our dog Buddy has major issues with fireworks. Our lovely neighbors start setting off their bottle rockets and roman candles around noon, and then carry on with the big guns until one am, or until someone loses an appendage.
Buddy will pace, bark, whine and shake the entire day. He loses his mind and believes the 4th of July to be the end of days. Poor guy must think he's in a fox hole or experiencing Armageddon.
Fortunately, great-Grandma B lives in Laguna and the fireworks are set off a barge in the ocean, rather than across the street. It was still traumatic for little Buddy, but his apocalypse lasted only 45 minutes, rather than all day.
We had a wonderful day with great-Grandma B who made her world-famous potato salad. I mean, can you even call it Independence Day without potato salad? It would be a travesty.
FD, Froggy and I spent the day at the beach (with the other 10 million people) and Froggy LOVED running into the ocean. It was quite a walk down to the beach and the entire way, Froggy repeated, "beach, ocean, beach, ocean!" She is a Cali kid, and has no fear of the waves. We were holding her by the hand, but a wave came up her her head and she just held her breath and didn't mind at all. I can't wait for surfing lessons. I hope she doesn't mind her old mom taking them with her.
Froggy is at a great age right now. She's becoming a little person, and it's so fun living vicariously through her, as she discovers the sea and world. I have to remind myself to enjoy the moment, rather than looking forward to all the fun we're going to have. Happy 4th!
Tuesday, July 03, 2007
I am so angry at our health insurance company, I can't breathe. On top of a $600 bill for blood work, I was charged for two office visits because I "discussed" things with my doctor that wasn't covered under a typical "general physical." And this was only because the doc asked me how I was doing, otherwise. I mentioned that I was having some anxiety, so bam, another $40, for mentioning something. I wasn't diagnosed with anything, no medications were administered, nothing. So now, my insurance company is helping me out with my anxiety by charging me another $40 just for mentioning the word "anxiety".
I'm not going to be able to see the documentary "Sicko" without some medication. And my insurance company won't even cover it. Grrrrr!!!!