Tuesday, November 13, 2012

Fly on the wall

I am moving. For the first time in 10 years. There is something about packing your belongings that makes you face who you really are, what you have accumulated, kept. What matters most. 

When I was pregnant with Froggy I purged her room of my college belongings. There was a grand purpose to this purge, the nest needed to be free of old text books and posters, my life as a single-20-something. Beer bongs and mardi gras beads made way for burp clothes and a diaper genie. I had a child coming and it was easy to throw away chatzkies and memorabilia because I knew what mattered was this person about to enter our world. My purpose was the future - the space yet to be filled.

There were small interim purges, ridding our tiny closets of baby clothes and books read about how to be good parents and good partners (in retrospect, maybe I should have kept some of those). But when you live in an apartment, there isn't the luxury (or burden) of storing a bunch of crap (mementos) you'll never look at again. I finally, after 2000 miles and 15 years donated my cross-country skis to Goodwill. And even they didn't want them. The employee actually laughed and said, "Oh yeah, we'll just throw those puppies in the garbage." Because who, after all, uses cross country skis in Los Angeles? But they meant something to me dammit. Skiing after dark in a college town with a light snow fall, a sky full of stars and a good friend. How could anyone throw that memory away?

After our divorce, I purged again. It was in the letting go of actual things that life went on. In the empty space I was able to breathe. And able to see that there was indeed a future. Nothing bogging us down, except for 3000 stuffed animals, sippy cups and plastic party favors leftover from 2 million birthday parties. I hate goody bags. Nowadays that plastic made-in-china crap goes right into the recycling before Froggy knows what hit her (I do this while she's still high on blue frosting and pinata loot). And so far it's seemed to work. Erasers and parachutes, sticky hands and balloons, basically choking hazards for the cats and something to pollute our glorious earth. I have never and will never buy goody bags. In fact, at Froggy's last birthday party a little girl asked, "Where's our goody bag?" And I replied, "You don't need a goody bag kid. The fun is the gift." She looked at me like I'd just inhaled a wee too much birthday candle smoke. But where were we? Moving. Ah yes.

Boxes and boxes of our past donated, baby clothes, crib sheets, bottles, wedding gifts. Put into cardboard and placed in someone else's care.

"Here, take this. I don't need it anymore. But be kind. It meant something."

So, we're starting anew. Kind of. Because when you have a child it isn't just "packing up and movin' on up" (cue The Jefferson's soundtrack). It's checking out school districts and neighborhoods, preparing a little person for a big-arse change. We're not starting over, we are starting wonderful. That's how I'm looking at it. Starting wonderful.

We've been preparing Froggy for about six months that this change was afoot. And we've let her design her bedroom, with a brand new trundle bed that in her words is "very French and very fancy." She picked the colors for the walls (pink and purple of course), and we've met the neighborhood kids. One girl is a Froggy clone. They are sure to wreak serious havoc. We're within walking distance of the beach, coffee shops and trendy clothing stores (a bit too hipster for my second-hand tastes, but what are you gonna do?).

This apartment has seen Froggy's first steps, first giggles, first words. First everything. I brought her for the first time through the door of our blue-walled living room. Her nursery that I had so carefully set up with baby pictures of her extended family was never actually lived in. Because she settled right into my bed and has remained there for snuggles and nursing, tube feedings and lullabies. I rocked her to the song of the creak of our hard wood floor, every night. Chirp, creak, conk. Chirp, creak, conk. Chirp, creak, conk.

The thought of leaving these walls has been difficult. I've been preparing Froggy, but hadn't prepared myself. This was my home too. My wonderful, sweet, good-vibed home. All our furniture, collected from friends and family, goodwills around the city. People, just like me who left these items in my care saying, "Here, take this, I don't need it anymore.  But be kind. It meant something."

Our park at the end of our street, our crazy and kind-hearted neighbors. The dogs, Diego, Rocket, Spike, Dexter and Disco. You'll be missed somethin' awful.

It's hard to let go even for something better.

To be fair there are plenty of bad memories within these wall as well. I stood at the screen door and wailed as the doctor told me Froggy had Cystic Fibrosis. I walked the halls with worry when she started having seizures and sobbed on the cold tile of our pink kitchen floor. The bathtub where I watched my daughter dance in my belly was also my escape in a bad marriage. There were many tears shed and fights where no one won. It was life here. Real life. And despite the drama, it is not an easy stage to exit.

The other night I was sitting on our second-hand sofa with both cats at my side. Froggy was sound asleep, and I could hear the hum of her feeding tube and air purifier. I looked around the room and thought, "I'm ready. I'm ready to go." It really was the first time I'd felt that. I hadn't prepared myself for this huge transition even though I knew it was coming. And it came, like all things good, naturally. When it should.

I'm ready. I'm scared. But ready. This has been a good home. But we have outgrown it. And now it is time to move on. Time to let go. Time to see what is behind door number....?

A year in pictures. It's about freakin' time.

Mommy and Froggy on one of many hikes.
Froggy getting a birthday "spanking" from her Kindergarten teacher last year.
Froggy has become quite the fisherwoman, catching big bass and catfish.
She is SUPER fast!
Hanging in trees with friends.
Catching butterflies at the cabin in Missouri.
Great grammy and the Frog snuggling together.
Buddy, sweet Buddy.
Best pal Mr. O.
Climbing haystacks at the cabin while getting loved by the farm beagles.
Grandma S. was telling a GREAT story.
This kid will climb mountains.
Froggy and Atticus. My two loves.
This Halloween we painted the town orange.
Watch out, she will skate you down!

Monday, November 12, 2012

I don't want to go to school and other facts

Froggy is in a band called The Wet Cats, formerly known as The Wet Dogs. They sing songs like "In my heart heart heart, I like to fart fart fart." And "I don't want to go to school. Dun dun dun dun. I don't want to go to school," and the popular single, "Baby's got a dirty diaper." Someday they'll sweep the nation, or at least Culver City. In Kindergarten she was in a band called The A Girls, and it consisted of all the girls in her class whose names began with the letter A. But just like Sting, she moved on.

Froggy is doing great in school, in the smarty pants reading group and she receives 100% on her tests. But her behavior "needs improvement," as stated by the note in her cubby. We're working on it.

And one great inquisitive froggyism:

Froggy: If the heart is alive, does it have a smaller heart inside of it?

Wednesday, October 10, 2012

Belly achin' baby.

Froggy's mic-key fell out in the middle of the night two weeks ago. By the time we woke up, her stoma had almost completely closed. I tried to put a new one in, but it was very painful. For both of us. Hurting your kid to save her from more pain later, doesn't equate in the mama brain.  
So the next day we had to do an outpatient procedure with sedation to put a new mic-key in.  Turns out a hole in your belly can close within 15 minutes. Our bodies our incredible at correcting error. Wait, there's a hole, fill it in, fill it in! Apparently, like everything Froggy, even her platelets are turbo powered. Her stoma closed in record time.

The procedure went well and Froggy has her new mic-key. But she was in a lot of pain and the docs would only give her Tylenol, so it was a tough couple days.

The next week we had her CF Clinic Appt. and she was 52.2 pounds and 1/4 of an inch shy of 4 feet! She's above the 50th percentile for height and weight. Her FEV1's with the aftermath of a cold were 98. Not too shabby.

I think this was the first time a procedure really affected her. It took 4 nurses to put her IV in after the first one failed. And she asked if I had a mic-key when I was little, or if Grandma did. And then, "Well, why do I have to have one?"

As she gets older, the questions only get harder. And I don't know the answers. I wish I did. We're learning together. And hopefully she knows that even if I don't have the perfect answer I love her perfectly. I wish like our bodies, our brains healed as seamlessly. When something doesn't make sense, the empty space is just filled. All is mended, with only a tiny scar of "why me?" or "make it go away mama." Just a harmless memory healed by time.

Mommy not-so-dearest anymore

I took Froggy ice skating and she ran into an old friend from preschool. We'd been skating hand-in-hand for an hour, having a great mommy/kiddo day. The second she met up with her friend this was our conversation:

Froggy: Mommy, leave me alone. I'm dependent.
Me: I think you mean independent.
Froggy: Which one means I don't need you anymore?
Me:  Independent.
Froggy: Then that's what I am.

The irony of course is that she NEEDED me to tell her that she's independent. Right? It was a cold day on that rink. A cold day indeed.

Actually, I am so proud everytime she doesn't need me. It means I'm doing something right. And at the end of the day, she's back in my arms, telling me to rub her back and hum, like I have since she was a babe. My dependent, independent little Frog.

Tuesday, October 02, 2012

Smart Cookie

Froggymama (FM): Froggy, do you want to join Girl Scouts?
Froggy: What do they do?
FM: I'm not sure, we'll go to the meeting and find out.

Froggy: Do they sell cookies?

FM: Yep.
Froggy: Do we get paid for selling the cookies?
FM: No.
Froggy: That's horrible! Why would I sell their cookies if I don't get paid for it? I don't want to be a girl scout.

Monday, August 13, 2012

Sink or Swim

I've been quiet. Not writing much. Just living.

Single froggymama living.

By the time I get Froggy into bed (she's a night-owl, inherited from my father's side where 2am rolls around and we all say, "It's getting late, better hit the hay in an hour or two.") So, by the time my little nocturnal amphibian falls asleep,  I check emails, do dishes, boil nebulizers,  and only have enough energy to lie horizontal on the sofa with a glass of wine to glutton myself for an hour of bad reality programming (ones so heinous I will not admit to them in writing). However, I am getting rather good at drinking while lying down. A talent tragically overlooked in the last Olympics. Harder than synchronized swimming. Synchronized drinking. Not for the weak of heart, or weak of liver.

I am just now starting to get my writing mojo back. I wrote a spec script, a few essays and I'm currently working on a television treatment. This sounds like a bad excerpt from my writing bio, but where do I begin after I've ignored you so long, little blog? Little frog blog. It's been too long.

So much has happened the last couple years, but most was better kept to myself. The transition from married to divorced, from family to single parenthood...well I could write a book. But I won't. (Communal sigh of relief) I think you need clarity to write, confidence in what you're experiencing, and I hadn't either. Clarity and confidence - those are hard ones to find once you've lost them. Harder than drinking wine while lying down and simultaneously watching Teen Mom (oh damn, I said too much).

But we survived. And what comes next is very exciting. Get ready for this...

I'm happy.

I've found someone who not only makes me very happy, but my little Froggy too.

Enter "Atticus," a handsome Midwestern attorney who can recite a soliloquy while baitin' a hook, teach a six year old to walk on the ceiling, while grilling up a mean wild salmon and asparagus, and looks just as debonair on a hike in Topanga as he does in his city attorney duds.  He's a smarty pants who uses big words- like cattywanpus and delivers clever puns in his sleep. He's funny, and even more importantly, laughs at all my jokes. He has the patience, endurance and stamina for Froggy, and incredible ability to save the day; when mama's hit the wall and Froggy has just thrown a naked barbie at my last nerve. We love the same books (although disagree wholeheartedly on  Shadow of the Wind - seriously a fantastic book, what is the matter with him!), but find common ground in To Kill a Mockingbird and Let the Great World Spin. He has a cabin in the Missouri woods and a great love of nature, poetry, and Shakespeare. He also happens to think I'm the bee's knees. So much so, he asked me to marry him -on the beach where we had our first kiss. I can't believe how lucky I am.

As wonderful as this last year has been, it's also been one of major transition. Finding the time and energy for another person when I don't have enough for myself is even harder than drinking vino while lying down and throwing a javelin with one hand and a shot put from the other.

I am also learning that I am not the best partner. The Olympic judges gave me a 5.3 and the dismount from the singlehood beam was a sad and wobbly stumble off the mat. I was so green, I didn't even throw my hands in the air in triumphant defeat, just sulked to the bench for my Russian coach to give me a "That's the best you got?," look.

I've made the decisions, all the decisions for as long as I can remember. I did the work, the research, made the calls, set the schedule, took Froggy on trips, ordered and planned, delegated and enabled. Turns out in a partnership, those Napoleon qualities... not so healthy. What was my life raft in the last ten years was dragging me out to sea in this one.

Just let go.

What if I allowed myself to be happy? Let go of the heavy raft and just floated, trusted the current to take me to shore?

Oh no. I couldn't do that. What if happy bleeds into spoiled? What if I can't survive without this? I already know how to play the angry martyr role. I mastered that part, received my PhD in throwing my hands in the air while stating, "Find, I'll do it myself!" But allowing someone to help? Allowing someone to love me and say, "Sit down, while I do the dishes, read the kiddo her bedtime story." Well, I couldn't possibly do that.

When it was just me and the Frog, I enjoyed the lack of audience.  There was no partner, and there was no choice. I was exhausted, but I could do it.  No one on the sidelines making comments or affecting the outcome of us. If Froggy didn't get a meal from scratch, if our house was a mess, it was my fault and I only had myself to blame. There was a strange comfort in that.

I got used to the silence, the resignation that this was my job. When it was 11pm and we were out of milk for breakfast, or unpacking from a weekend, carrying all her supplies and a tired, heavy child up a flight of stairs;  it became normal. And after a while, safe.

I was a single mom a kid with CF. I could do it alone. I was capable. And strong. Stronger than I ever thought I could be.

And that is where Atticus entered. When I knew I could do it alone, but realized I didn't want to anymore. I wasn't desperate or even really looking. Just putting my toes in the water, not expecting to be swept out to sea. Perfect timing. 

I'm still learning, or rather unlearning, all the terrible way of drowning in this life. I have decided to dive in head first, because I know now there is someone really there to catch me, to swim and float and fight the currents, together.

Froggy has never been healthier. She's in the 50th percentile for height and weight. She's had clean cultures. Her PFT's are in the 100's. She's thriving in school. She is a happy, happy girl.  We have family dinners and consistency. I see the joy on Froggy's face, and feel the safety she knows in us. I am backed up in my parenting and told everyday what a good mother and partner I am.

I don't know how many people find this in life. With all the blows we've been given, someone out there must be saying, "Okay kid, you've had enough. How about a lifeboat? Just sink your toes in the water, look up to the sky and let the wind take you where it will."

And I'm finally ready to say, I do.

Thursday, August 02, 2012

Addie: The life of a Frog

I've been going through old boxes, letters, photos and found a great history of things.

When Addie was a year old, I wrote Frank Deford. He's a famous sports writer whose daughter Alex died of Cystic Fibrosis at the tender age of eight. He wrote a book after her death entitled, ALEX: THE LIFE OF A CHILD.  It was later made into a Movie of the Week. I watched it (ironically when I was about eight), and it has stayed with me all these years.

I remember sitting in our basement sobbing and thinking, "That is the very worse disease anyone could ever have." It was such a concrete memory, where scenes were cemented like a child's hand in the driveway, where you look back and say, was that me? Was I ever that little? Did this really happen?

One scene stuck with me: Craig T. Nelson, who plays Frank Deford is holding his daughter upside down, pounding on her back as she's coughing up blood. He's trying to stay positive, trying to act like his daughter isn't coughing up blood, isn't dying in front of him. And it was one of the hardest things I'd ever seen in my life. To this day. I can't get that image out of my head. My mom had just returned home from a meeting, and I buried my face into her. It was the first time I realized children die - life was excruciatingly unfair.

When we were diagnosed, that scene played over and over again.

I don't know if this was a premonition or glimpse into our future, but I do know I was changed.

Because of that film, I started donating to the Cystic Fibrosis Foundation. It was actually the first donation I ever made. And strangely, beautifully enough, I have been donating to my daughter's cure, every year for 17 years. And eleven of those years I had no idea.

I told Mr. Deford this in my letter and sent an essay I'd written entitled WHEEL OF MISFORTUNE. He wrote me back, in his own writing. He even addressed the envelope. I kinda love the guy. Here's what he wrote:

November 2, 2006

Dear Elise,

Thank you so much for your lovely letter and your brave essay. I can see that your beautiful daughter is in good hands - so she should be just fine when we find that elusive cure... which we must and will.

Things are so different now with CF then they were when Alex had to deal with it. I'm sure Adelaide will live a long and prosperous life.

All my best wishes,
Frank Deford (Alex's Father)

I treasure this letter. And I like to think that it was a preparation for what was to come. I got a glimpse of what CF looks like and I started early on my journey to raise money for her cure, for all the kiddos and adults and in memory of those who didn't make it, for all the Alex's out there who changed lives, who inspired donations, who made a difference. Thank you. Thank you. Thank you.

Tuesday, May 15, 2012

The Cure?

I'm the parent of a child with Cystic Fibrosis. The words chronic, fatal and illness are part of the vocabulary of this disease. So, I am the parent of a child with a chronic, fatal, illness.

On every brochure, pharmaceutical pamphlet, insurance paperwork, government form, and authorization, my daughter’s condition is defined in these terms. Fatal, meaning she is going to die from this disease. Chronic, meaning she will have this forever. Illness, meaning sick.

 In six years, I have never used these words in conversation. Not because I’m in denial. I know my daughter’s condition is all of those words mentioned above that I will clearly not mention. But there is something about defining her condition that makes it true, makes it permanent. Unchanging. And I don’t believe that for a second.

The definition of Cystic Fibrosis is this: Cystic fibrosis or (CF) is an inherited chronic disease that affects the lungs and digestive system. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening infections; obstructs the pancreas and stops natural enzymes from helping the body absorb food. That’s the definition. But basically, it’s a sucky disease that no child deserves.

My daughter’s plumbing just doesn’t work. So every day we do a roto-rooter type treatment on her lungs. I hook her up to a nebulizer where she inhales bronchodilators, antibiotics, pulmozyme, and other life-saving or death-preventing (depending on how you look at it) medications. She wears a vest (like a very fashionable pneumatic jackhammer) that shakes her chest, so she can cough up copious amounts of mucus. She takes pills to eat, pills to poop, pills to breathe, pills to absorb food, and pills to absorb the pills.  She has a feeding tube at night to ingest the calories she can’t ingest during the day. Like I said, a sucky disease.

If you were to meet my Addie; my hyper, creative, smart, jumping off the walls, beautiful spitfire of a child, you would never equate the definition of CF to her. You’d demand proof that she actually has this disease, or assume I have a raging case of Munchausen-by-proxy.  CF is a progressive illness, which sounds positive, like it becomes better with age. But no, progressive means progressively worse, as in progressively more sucky. A kid like Addie, who is otherwise healthy, who has a lung function of 114% , who runs circles around her friends, not to mention her tired mother, has the potential of the definition of Cystic Fibrosis, the potential of a chronic, fatal illness. At six years of age, the damage has not been done, her lungs are poifect, her disease deferred. But for how long?

In 10th grade my science teacher explained the physics of energy as a ball at the top of a hill. At the top, the ball represents potential energy, but the second it creeps over the peak, it immediately becomes kinetic. It isn’t what it is, until it starts moving. One second in time, one slight breeze, one infection, and Cystic Fibrosis becomes Cystic Fibrosis. It lives up to its definition, its potential, its name.  I’m trying desperately to keep that ball from slipping over, gaining momentum and ever reaching the bottom. Every day, with all my might, we deny the power of gravity and say, “not yet, Newton, not yet.”

In the 1950s, few children with Cystic Fibrosis lived to attend elementary school. Since then, thanks to the diligent and progressive (progressive in a good way) Cystic Fibrosis Foundation, the life expectancy of kiddos with CF has climbed to 37. The medications available are prolonging life and postponing death (depending on how you look at it). But the main goal of the foundation is to find the cure.

The definition of Cystic Fibrosis holds a visceral punch. But so does the antidote. The Cure. To say the least, it’s a touchy subject with CF families. Along with all the innovations in life saving medications, there have been even more promises that haven’t panned out. The herb turmeric was once hailed to cure CF, and a recent drug Denufosol was hyped as a ‘cure’ but failed to produce results.

When Addie was diagnosed at four months old, our doctors said definitively, “There will be a cure by the time she’s five.” So when Addie blew out five candles on her birthday cake, my first thought was not just of celebration. It was, “Don’t tell me my child is going to die, but don’t promise me she’ll live either. I’m not sure which is worse.”

Most adults I’ve met with CF have shared a similar but opposite story. When they were diagnosed as infants, their parents were told to start planning their funeral. These adults who are now in their 30’s, 40’s and even 50’s were expected to die, expected (ironically) to live up to the definition of their disease. Chronic, fatal, illness.

There is power in a definition. It takes the infinite and makes it finite; power in saying something is what it is.  And there is also power in refusing it. Both are equally harmful because each makes promises that may not be kept. And it’s a slippery slope to say potential will become kinetic. Who knows when the ball will drop, or if it ever will?

 On January 31, 2012,  the FDA approved a new drug named Kalydeco that corrects the basic defect of those with the G551D mutation of cystic fibrosis. This mutation is present in 4 percent of the CF population in the United States. It dramatically improves lung function; lowers sweat chloride levels and helps patients gain weight — all key clinical indicators of CF.
To put it simply: This is freaking huge. Huge. Huge. Huge. This is the first time in CF history that a drug has been able to change the course of its disease. It’s not treating the symptoms; it’s correcting them, preventing them. Like gravity reversing, the ball is falling up the hill. Take that Newton! This medication is changing progressively worse, to just plain ‘progressive.’ Like I said, it’s huge. But…damnit, there’s always a but.

The vast majority of individuals with CF in the United States – nearly 90 percent (including my daughter) have a different mutation, called Delta F508. For my kiddo and most of the CF population to benefit from Kalydeco, another drug is necessary. Enter, VX-809.  In the Phase 2 clinical trial of Kalydeco in combination with another potential therapy, VX-809 has shown positive results. It’s difficult to understand. But basically it means, both medications have the potential of working together to transform Cystic Fibrosis from a chronic, fatal illness into an endurable, pain-in-the ass, condition. From a life expectancy of 37 to a sky’s the limit, do whatever the hell you want life expectancy. We could be on the verge, on the top of the hill of a potential cure that has the promise of becoming kinetic.

I hate to say it, no I love to say it. My daughter will see the cure in her lifetime.
The definition of Cystic Fibrosis will have to change. Anatomy books and medical anthologies will have to correct their terminology from chronic to cured, from fatal to endurable, from illness to condition.

In the meantime, I, like all parents of kiddos with CF, will hold our babies at the top of a hill, blocking the breezes, and defying gravity, waiting for the day when diseases like CF no longer have the power to define our child’s life expectancy. Nothing is permanent and definitions, like diseases are ever-changing. As it should be.

Saturday, April 07, 2012

Iowa Trip - Cause no one will come to us anymore. I guess that's what happens when you move a million miles from home.

Little Frog on the Prairie
Froggy rode 31 miles last week! We worked on bike etiquette also called "not screeching to a halt without warning while knocking random people off the trail (but mainly her mom, Uncle Kiwi and Papa). We also worked on "staying to the right," or in Froggy language, "weaving back and forth across the trail to run over a deer, should one randomly cross, while a drunk bicycle fleet whizzes by screaming "On your left." I wouldn't call it a stress-free ride, but I would call it fast! One day we rode all the way from Grandma S. and Papa's house in the country to my sister's antique store in downtown. The bicycle shop guy next door couldn't believe she road ten miles on that little Huffy. Papa picked us up and we stopped at a winery, which is really the only way to survive a ride with the Frog.
We visited Pella (a Dutch town in Iowa) where climbing statues is frowned upon. But apparently done anyway.
It's a town of tulips and gigantic wooden shoes.
It's like a Dutch Disneyland, but without the rides or fun.
Here's Froggy pretending to be as 'calm as a flower.'
Grandma S., Froggy and Papa. The kiddo was so good on this trip -affectionate, loving, sweet and well-behaved...other than climbing statues, and knocking bicyclists off the trail. But overall, as calm as a flower.
Grandma S. at the Wildlife Refuge Center, where buffaloes roam the Iowa prairies. She looks happy here, but that was before the buffalo charged. We told her to stay in the car, but Grandma never listens. We thought about waiting for her, but then we heard about this great Brewery in Knoxville, so we left her in the wild! Don't worry, she sent us a postcard saying she's now a Buffalo whisperer and has heard the call of the Tatonka. Weird. Unexpected. But kind of cool.
Froggy missed Grandma and convinced the Grand Poo bah Buffalo to release her! Whew.

Tuesday, March 20, 2012

Big Day, Brave Frog, Tired Mama

I knew today would be a big day.

Froggy has been coughing every night, most of the night for two-three weeks now. On Saturday she vomited in bed, the mucus was so thick. I've never heard her search for breath, to have a moment where air was not just there, but something to work for. It breaks my heart. This cold season has not been kind and Kindergarten has felt more like a cess pool than an education. This month she's had a sinus infection, ear infection, and now respiratory junk she hasn't been able to shake.

That being said, we are not hanging out in bed. She is still doing gymnastics, going to school, birthday parties, going on hikes, riding her bike, no fever, no change in anything. Other than long, sleepless nights of major mucus, we are still living our lives normally. Our treatments have increased from two a day to three or four, plus sinus rinses and sprays and antibiotics, but there is still fun, learning, and lots of adventure!

I've been on high alert and haven't had REM sleep in a month. I'm so tired, that I need a new word for tired. There needs to be a word for overwhelmed, tired and depleted but still going, still waking up everyday with energy. I have no idea where it comes from. I'm so tired and then out of nowhere I get a second wind and then a third wind, and then Froggy is in bed and the dishes are done and nebs are boiled and my calls are made and the dog has been walked. And if I stopped to think about it, I'd cry. But if I don't stop and don't think, it happens and everyone is alive and okay, bills are paid and the garbage is out and groceries are bought, dinner made, stories read, homework done, and surprisingly, we have fun doing it. I don't get it.

I've had moments of sleep deprived hallucinations where I'm not sure what is sleep and awake, dream and reality. I've been on a kind of auto pilot that seems to work. We're alive, things are getting done. I'm also realistic enough to know this cannot go on forever. At some point the pilot has to come off her lunch break and relieve the autopilot. I'm like the blow up doll on the movie AIRPLANE, a creepy blowup Froggymama who administers meds and makes dinner and at the end of the night when one would think I'd be exhausted and tired, I am awake listening to Froggy, hoisting her up so she can cough, blowing her nose, making sure she's breathing, giving enzymes during her g-tube feed, unhooking her when she's done. And as tired as I am, I can't believe I'm not more tired. This energy is like newparent energy when you're up all night with a newborn and still able to function. Somehow, someway it just appears. I guess because it has to. When you don't have a live-in partner, you are you're own partner, so someone's gotta do it.

So...when she woke up at 7am for her CF Clinic, I was ready for a big day. I woke up an hour earlier and prepared her meds, nebs, clothes, sinus rinse, lunch and had made coffee, fed the cats, scooped the poop, I was ready to go. I woke her up and as she stood in front of the hall heater (because it's 40 degrees in CA these days) she said her arm hurt. I saw a red bump on her neck, and upon lifting her arm found hundreds of bumps. Legs, arms, back. "What now, chicken pox, are you kidding me?" I fastforwarded to next week when we are supposed to fly to Iowa and knew if it was something serious our Spring Break would be in the hospital rather than with family.

I called the hospital, no one answered. Now, I'm in 'get her to the hospital mode' and I start packing everything in case it's an allergic reaction. I throw the Pulmozyme back in the fridge, pack the meds, because if she's allergic to the antibiotic, I'm not going to add injury to insult, red dots to red dots. I grab the kindle to keep her busy at the appt, plus all the necessities for the Long Beach Aquarium afterwards in case it's nothing. We hit the road at 8:30, no breakfast, no treatment, and mama is looking tired and haggard. What else is new?

The car pool lane on the 405 to Long Beach in rush hour is like a golden ticket to Willy Wonka's chocolate factory. We were there before you could say, "Ooompda Loompda Doompta dee do." I passed everyone like, "Don't you wish you had a kiddo with CF, suckas!"

Have I mentioned how much I love our new hospital? We show up an hour and a half early for our appt., and they say, "No problem!" No problem. I'm sorry, did you hear me? It phased no one. They took us directly to a room. Our pulmonologist just happens to be an allergist. He took one look at her and felt confidant it was an allergic reaction to her sulpha antibiotic. We were in and out in 2 hours (social worker, GI doc, Nutritionist, nurse, Pulmonologist, Physical Therapist, and Respiratory Therapist). TWO HOURS!!! And we got free meds and nebulizer cups. Score!

Her PFT's were low in the 80's. She's usually 112 or 116. So her Respiratory Therapist came back at the end of our appt. to see if we could score better PFT's. (Pulmonary Function Test).

After some super hard work from the Frog, she scored 95! For the coughing and post nasal drip, 95 was quite an accomplishment. I'm amazed by how Froggy listens to the RT (because she sure as hell doesn't listen to me) to follow direction and work her little lungs off for high scores. She was so determined. It made this mama proud.

The docs prescribed an inhaled steroid (it's temporary), and some more nasal sprays and another antibiotic. I know we'll knock out this respiratory junk. And I know this weekend when Froggy goes to her dad's, I will sleep 16 hours (hopefully) and catch up with all the work I can't do while taking care of her. Those (every other weekends) are the only way I could get all the errands run and have a moment to take a breath of my own and say, "I can do this for two more weeks."

The other day I met a mom who bowed down and said, "I don't know how single moms do it." And whenever I'm feeling sorry for myself or the laundry has piled up and the bills aren't paid and I just sit there and think, "How?" I think about my friend B. who has an adult son with Autism and how they are up everynight with him and have been for 20 years, how they've coped and lived through chronic stress that I can only imagine. And when asked how she does it, in her adorable 4 foot 11 New York sweet tough girl accent says, "What f*cking choice do I have?" And if you knew B. you'd know it's not about self pity, just reality. Sometimes there is no choice.

I think if my autopilot Froggymama self could talk out of her plastic lips she would say the same thing, "What f*cking choice do I have?"

So...after our appt. we went to the aquarium, then home to do her treatments and snack, then to gymnastics (where I ran to the drugstore for her antibiotics she's not allergic to, then to the grocery store), picked her up, home for bath, meds, dinner, bedtime, snuggles, stories, and here I am, 11:49pm and after I run downstairs to get the last load out of the machine, I am happy to be Froggy's mama. To have the priviledge of being given this responsibility and the joy that comes with it. Froggy is worth it. And I know no matter what things will work out because even when there is nothing left there is always something left. Because there has to be.

Froggy's Clinic Results:

Weight: 46.2 lbs.
Height: 46cm's.
BMI: 50 percentile.
PFT's: 95.

Thursday, March 15, 2012

My little bear cub.

by James Wright
A bear under the snow
Turns over to yawn.
It's been a long, hard rest.
Once, as she lay asleep, her cubs fell
Out of her hair,
And she did not know them.
It's hard to breathe
In a tight grave:So she roars,
And the roof breaks.
Dark rivers and leaves
Pour down.
When the wind opens its doors
In its own good time,
The cubs follow that relaxed and beautiful woman
Outside to the unfamiliar cities
Of moss.
by James Wright, from Above the River: The Collected Poems. © Wesleyan University Press, 1992.

Thursday, March 01, 2012

First comes love then comes...nahh.

Froggy's 'boyfriend' at school gave her a picture of the two of them getting married. They were in front of a synagogue (yes, she found a nice Jewish boy), and Froggy had a veil and he had a top hat. This was our conversation:

FM: Wow, did Miles draw a picture of you two?
Froggy: Yep.

FM: What's it about?
Froggy: I don't know.

FM: Well it looks like it's you two getting married.
Froggy: (long pause and then in total deadpan) Yeah, I don't know about that.

Friday, February 17, 2012

A new poem for a new chapter

Landing Gear

Jumping from the plane

parachutes intertwined, wrapping
stay-puff bodies together like sardines
they spun a perfect tangled formation,

feet out, faces together
a map of the world below.

What are the chances?

two planes, two divers colliding

a yo-yo suspended on string waiting
for the next move from God or gravity
they stayed weightless.

“I think I’m falling for you,” he said.
That was so like him.

Air pulling cheeks and eyes back
it was the same expressions they had
entering this world

infants dangling upside down after
floating in a primordial pool
just - a rebirth from the sky


She thought
about her dreams as a child of flying
and how waking
never meant it hadn’t really happened.

Was this happening?

leaving the physics of feet on sidewalk
one step in front of the other,
step on a crack and you break
your mother’s back.

Toes curled like landing gear
lips finding their flight path
to one another - a lock and key
in midair

a butterfly torso, flapping wings
spinning, burrowing
an aerial cocoon
two caterpillars in one chrysalis,

to some
they look like a constellation
or space debris
discarded by the astronauts with a flip
of a switch, billowing
toward a destination that is anyone’s guess

What are the chances?

“Are we falling or flying?” she asked.
Either way, he replied.

by Froggymama

Thursday, February 02, 2012

February Froggyisms

"I wish I had a cheetah so I could run with it all day, and never catch up." - Now she knows how I feel.

While playing with her stuffed mouse, Froggy put a sea shell up to the mouses ear and said, "She's talking on her 'shell' phone."

We've been reading Charlotte's Web and the very last word Charlotte writes in the web is "humble." Froggy asked the meaning of the word. I told her it means that you're not full of yourself or think you're the best person in the world. She thought for a second and said, "Yeah, I'm not humble." I agree, but atleast you're honest.

Sunday, January 08, 2012

The Journey
By Mary Oliver

One day you finally knew
what you had to do, and began,
though the voices around you
kept shouting
their bad advice—though the whole house
began to tremble
and you felt the old tug
at your ankles.“Mend my life!”
each voice cried.
But you didn’t stop.
You knew what you had to do,
though the wind pried
with its stiff fingers
at the very foundations,
though their melancholy
was terrible.
It was already late
enough, and a wild night,
and the road full of fallen
branches and stones.
But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into the world,
determined to do
the only thing you could do—determined to save
the only life you could save.