Tuesday, October 29, 2013

Saturday, October 19, 2013


Going to Hawaii has been on my bucket list for a long time. Since Froggy was born, we haven't traveled, other than trips to the Midwest to see family. I had built up this vacation in my head to the degree that anything less than perfect would have been disappointing. Maui was even better than I'd imagined. Clear, clean, warm ocean. We snorkeled and took a boat to Molokini, and snorkeled in a volcanic crater. I swam with a sea turtle! We herded cattle on horses, drove the beautiful Road to Hana, hiked and relaxed. It was paradise. Maui was the perfect antidote to stress.

The Amazing Grace of a Snake

When a snake moults, it not only sheds the skin over its entire body but also the transparent ocular scale covering its eyes. The once clear, darting brille turns cloudy, and a milky hue emerges as he embarks on this transformation. He is not only born of new body, but new vision.  A new way of seeing the world.

It's a lot like divorce.

I remember the exact moment when I shed my skin.  We were standing in the kitchen while our three year old daughter played in the other room.  The dog was tap dancing across the hardwood floor, from living room to kitchen, from our daughter to us. He filled the spaces,  policed the parameters.

For once we were together, his perfect audience. For once our child was distracted, pulling musical instruments off a shelf; blowing on kazoos, banging on bongos, getting lost in the moment.

We'd been miserable for a long time - even the dog knew it was over and expressed it with a frantic tap dance dirge. Tap tap tap tap. Tap tap tap tap.

I was crouching on the pink tile of the kitchen floor, putting a pan below the sink and when I stood up - a rush of blood to the brain and the impatience of promises made it clear. This was the moment. I was going to ask the question, for better or worse.

"Are you going to do whatever it takes?"

I thought there would be a pause, a long dramatic moment like in my mother's soap operas where it's almost uncomfortable and you start zeroing in on the star's facial pores. The music starts to play, and a melancholy cello pulls you to commercial; something exotic like a  Caribbean vacation or Pizza Hut.

But it was so fast.


It wasn't a dare or a protest. There was no challenge to meet, no argument to pursue, no commercial break or trip to Antigua. Because I was ready for dukes up. Whatever it takes. My gloves are on.  Give it what you got man!


It was a car horn announcing a green light. A short, polite, "go already." We've been sitting here too long.

It was lightning without thunder.

It was helium, escaping a balloon that fell quietly to the floor during the night and in the morning - a wilted piece of rubber with a string remained. The saddest thing ever. Parties over. Go home. Don't be that person who waits til the end, til every last car is out of the drive and the host gives you a nod and a yawn. Wellll, it's been fun, but...

I'd shed my skin. It was over. The person I was didn't exist anymore except in a skeletal casage, like a sausage, a cellophane history that was my life for ten years. Our families coming together, the birth of a child, holidays and heart attacks, biking through the Catalonian mountains,  sailing to Catalina, sitting on the bow and searching for blowholes on the horizon with our child, birthdays candles and hikes, sea shells on so many beaches, walking Iowa cornfields, and dunes of the Mojave desert. It was all gone, in a moment, a slough of skin. Shed. For better or worse.


And strangely, I could breathe again as if I'd been underwater expecting the sea to give me air. And the sea said, "Well, what did you expect?"

Most amphibians, birds, even dogs and cats who shed skin, feathers and fur, do not leave an entire replica of their former selves behind. But a snake, leaves a life-size fingerprint, a CSI story of all the twists and turns, scars and deep tales, the slidings through narrow escapes of  life in the desert, of digging holes and climbing in, of peeking out to eat, or catch a view of the harvest moon. He is a novelist, a ghost writer, taking no credit for the story left behind. 

After my  divorce I could relate to this metamorphosis. I was struggling to find a way out of a life I'd dug so hard to get in. I'd shed my skin, and was naked and new at everything. Now what?

Well, there was a beginning and an end, an exact moment to everything.

I remember the exact moment I looked into my daughter's eyes. Fresh out of my body like a wet porpoise on my belly. A smart little alien. Where am I? How did I get here? What's the purpose to it all? Mother, answer me.... all before lips met breast. Her eyes were clear, ready. Not cloudy at all.

I remember the exact moment when she was diagnosed with Cystic Fibrosis. On the phone, holding my crying babe. The doctor was busy, so I begged the nurse to give me the results.

She said, "The doc is supposed to do it, but I'm sure it's negative. Let me get the fax that just came in."

Long hold, very long hold, as my daughter fussed and I felt like not knowing was being set on fire but before I could stop, drop and roll the nurse came back.

"I better have the doctor read this to you honey."

The exact moment when our world fell apart.

I remember the exact moment when we said we would. My grandmother's church, folk music and dancing. Dreamy and dumb, unaware that life had very big teeth.

And in the kitchen putting away a pan, listening to the music of dog paws on hardwood, a kazoo song serenading from the living room, I remember the exact moment when our family fell apart. When I shed the final skin over my eyes.

I once was blind but now I see.

The brille is there to protect, as the snake slides through sand picking up the dust of life that collects and clouds. What was once shiny, after time,  becomes brittle, worn, and bald. Like an old man.  And finally when he can't see anymore, when he is almost blind from the life he's seen, when he can't go another inch in the life he's lived,  he is reborn. Same soul but new eyes. The wisdom without the weight.

And now, I too leave it in the sand as I slip into rocks and crevices, climbing in and then out again, every once in a while catching a glimpse of the harvest moon.

Tuesday, May 21, 2013

The Secret's in the Ink

It creeps up on me like the boogey man or an octopus.

We have great days of playing at the park, dinner around the table where we talk of playground politics and discuss Ben and Jerry's greatest ice cream flavor. After homework and a game of animal rummy, we catch an hour of a Jack Black movie during respiratory treatment, guffaw at his cartoon facial expressions and settle in with a library book about octopuses, cuttlefish and squids, learning how cephalopods exist without skeletons; they are the shapeshifters of the sea, who cannot only change color but camouflage their bodies by the pattern of their surroundings.

The blue-ringed octopus transforms it's body to look exactly like the anemones beneath him, same color, same shape, even the same texture. How does he know how to do that, in an instant? How does he paint his pigment in those Van Gogh patterns, without a brush, without a cerebral cortex? How does he inherently know what will save him? 

Instead of fighting, he just fits in, meshes, like "hey dude, just hanging." In essence the octopus pretends the danger isn't actually there... And it works.

This has been a tough year. Addie's mickey/g-tube fell out and had to be replaced surgically, her stomach woes and blocked colon caused months of physical pain and missed school, activities and life. This cold that won't go away created a wet cough that sounds like heavy cement in her lungs. And now the antibiotics that fight the cement are causing diarrhea and night time tummy aches. Sometimes Cystic Fibrosis feels never-ending. Like we are fighting an invisible current, a secret enemy who is hiding in plain site, colored and textured like our daily surroundings, but always there. At the end of the day, even when it's lovely, the tentacles are showing.

This is a first, but tonight I was jealous of an octopus and his graceful ability to survive the depths of the sea without a weapon, except ink, writing his story in the ocean, saying "I WAS HERE."

Even if I was hidden when the dangers lurked above, I fought in my own way. I changed and worked to fit in to this environment that was always against me, that tried it's best to win. Because patients with CF struggle to breathe, as if air were the enemy, as if they were underwater and born without gills.  

Without the metaphors, I'm just sad tonight. I wish my kid could fall asleep without any pain or discomfort. I wish a cold was not something to be feared like a shark or a stingray. I wish I could kiss her goodnight and not think, "She's almost eight, how long do we have?"

I wish I could sink into the bottom of the sea and camouflage myself into pretending we are safe, that there is nothing wrong, that we are just the anemones beneath us. There are no enemies. And whatever haunts us from above will keep on swimming. Just keep on swimming and leave us alone. Safe and shapeless, but happy, under the waves and the sun that seems to always find a way to reach us, even in the darkest of places.

Thursday, April 18, 2013

Tummy Troubles

Froggy is in the hospital. We were admitted this morning because for the last two months she has had chronic lower abdominal pain. She had a rectal impaction which we cleared, and we thought she felt a little better for a while. But this last week she stayed home from school, was just not herself and has hardly eaten anything. Last night during her tube-feed she projectile vomited. This morning, I brought her in.

Here's a rundown of today:

We arrived at 11:30am. Our nurse care manager (who is a Goddess) got Froggy a private room right away. Our GI doc met us quickly and we talked for a while. He isn't sure, but thinks this could be a hiatal hernia. We also found out on Tuesday after a rectal exam (poor Frog) that her perineum is short so her rectum can only expand down -which means she has strain to have a bowel movement and this condition can cause constipation and impactions. Woo hoo!

Tomorrow am, they're going to give her heavy sedation and scope her (colonoscopy and GI endoscopy). Which means, they're going in her through her bum and down her throat to look at her GI system from both angles. Lovely.

I am so glad we are finally here. As much as I hate having my baby go through this, not knowing and trouble shooting this pain for months has been miserable. I can't wait to have some answers, and some relief for her!

The procedure should take about an hour. And hopefully by tomorrow afternoon we'll have some answers.

It's been a very long day for babygirl. She's had blood drawn, an IV inserted, 3 fingers pricked, dozens of GI, Pulmonologists, nurses, phlebotomists, poking and prodding. Tonight, they've given her magnesium sulfate through her g-tube so hopefully she can get cleaned out before the procedure tomorrow.

Everytime someone walks into our hospital room she says, "What are YOU going to do to me?" Poor kiddo. The good news is our hospital is amazing and I know she is not only in good hands, but some of the best hands in the country. Please send good thoughts and say some prayers for our little Frog. xoxo

Friday, March 08, 2013

Froggyisms before they are lost into my mommy vortex that was once a brain.

Froggy: Mom, when are we gonna have that oddball soup again?
FM: Oddball soup?
Froggy: That chickeny soup with the big oddball in it?
FM: Matzo ball?
Froggy: Yeah, matzo ball soup!

Froggy: If there are silly straws, does that mean there are serious straws?

Froggy and I were reading a book about animals in zoos across the world, when we came across an aardvark this was our dialogue:

Froggymama: I wonder what the difference is between an aardvark and an anteater? Are they the same animal?

Froggy: No, the anteater has smaller ears and a longer snout. The aardvark has a nose about this big (shows me) and very large ears. And I think anteaters can eat more ants faster.

So of course I look it up and the little stinker is right! Where does she get this stuff? I'm humbled by my smart kiddo, she is way smarter than I was at her age, and maybe even now. Should I admit that?

Monday, February 25, 2013

Froggy's First Poems

A Good Day

The sun is shining
and the morning glories are blooming
and the birds are singing,
Oh, what a good day.

- Froggy

Love is great

Love is good
love is great
love is everywhere
love is in the air
love is even
in your hair.

Tuesday, February 19, 2013

Makilda the murdering gremlin

Froggy's new pretend character is named "Makilda, the murdering gremlin." She has an incredibly creepy voice, but is also kinda cute. And...I'm a little afraid of her. Actually I'm a lot afraid of her. She's a mix between the red-rum kid from "The Shining" and Smurfette. Creepy...very creepy. If I'm ever found stabbed to death with barbie legs and hog-tied to my bed with a jump-rope, you'll know who did it - MAKILDA, the murdering gremlin!!!

Froggy has always been funny, but her comedic timing lately has been spot on. I however have been terrible about writing down all those funny moments. Other than Makilda, and that is mostly for a written alibi.

Froggy and her new BFF love playing 'teenager.' Froggy says "We're teenagers with dwarfism, that's why we're so short for our age." Well that explains it, so glad she clarified her imaginitive play with some realistic disclaimers.  (note to self, we're watching way too much TLC).

Froggy had two blood draws today to test her blood sugar levels. Kids with CF (a majority) eventually get something called CFRD - CF related diabetes. Just another lovely component of CF. She was... better than the last time. When her mic-key fell out a few months ago, I believe it took 4 nurses and myself to hold her down. This time, only me and one very strong phlebotomist. Afterwards, we went to the Long Beach Aquarium. It's become a tradition and makes those clinic appointments and blood draws not as macabre. We go so often now that Froggy has become quite the expert on marine life. She was telling a woman next to us all about coral reefs and how otters have a million hairs per square inch, and German Shepards only have 100,000 on their entire body. She pointed out the sea slugs, anemones, and leafy sea dragon. She knows the Mexican lookdown fish, and giant sea bass, and thinks the eel is pretty because of it's purple-blue eyes. While visiting the sea lions, she took a penny and tossed it along the curved glass of it's underground aquarium. For twenty minutes a crowd gathered around while Froggy played fetch with this sea lion and her penny. A mom came up to me and said, "She's gonna change the world." I need to remember this when she's whining in the back of the car singing the, "butthole, poo poo, wee wee," song.

On a quick healthnote, Froggy has been having lots of tummy aches, and the school nurse calls me at least 2 times a week to come pick her up. Poor girl. We're working with GI on it, so I'm sure will figure it out. It's always before or after eating. Definitely digestive, not bladder/kidneys. And I also think the second her stomach hurts at school, even if it's gas or reflux, she just wants to be home. Don't we all?

I'll update on the bloodwork soon and will post more photos soon. (my phone won't upload to my computer, and all my pics are on my phone.)

Saturday, January 12, 2013

Kicking CF to the curb

At Froggy's last CF clinic appointment, her pulmonologist, nutritionist and GI doc all said the same thing, "Keep doing whatever it is you're doing!"

She's gained 3 pounds in 3 months (just 2 ounces shy of 55 pounds), her FEV1 was 102 (with a cold) and her BMI percentage is 66.

I can't tell you how wonderful it is to hear that this hard work is paying off. And I understand as a CF mama that it doesn't always and diligence makes no promises. But man it felt good to hear we are doing something right.

Froggy gets a g-tube feed every night, so I'm up 2 times to give enzymes and then unhook her. And then a couple hours later, she wakes up to pee (750mls of formula will do that to ya), so I'm usually up again. We've tried giving her enzymes only at the beginning of the feed and that caused malabsorption, so it works better to just get up. It's been our routine, our normal. But there are nights where an uninterrupted snooze would be heavenly.

Being a mom is thankless (worth it, but without alot of pats on the back, more like whiny slaps) so to see results, to be part of working towards my kiddo's health and seeing it make a difference, having confirmation from her docs, is a great validation.

Froggy is taking charge of her own care more. She answers the doc's questions and actually asked our GI Doc at what age could we remove her mic-key? I love our CF specialists. They are honest, but kind. GI  told her that they would want to keep it atleast through puberty. Froggy looked defeated, and told the doc she hated her mic-key and she can't wait to get rid of it. She then gave her reasons why.

"I can't go down the slide on my tummy!"

"It sticks out when I wear my bathing suit."

 "None of my friends have one."

I'm proud she made a case for herself (even though it was shot down by mommy and doctor). She's more outspoken and independent at seven than I was at twenty seven.

The mic-key has been a love/hate relationship for all of us. It has allowed us to lighten up on meals,  and let her eat when she's hungry because we know she'll get those extra calories at night. She's also grown from the 5th percentile to above the 50th in weight. So I can't imagine not having that g-tube safety net.

Froggy has adjusted wonderfully to her new home. We have four cats. Four. Four cats. For the love of God, four cats. And they all get along. Although Peanut hisses at June, because she's younger and thinner. But that's to be expected. I've never seen Piper happier (she's pushing 17). They have a patio, so these indoor-all-their-lives cats are able for the first time to soak in the sun and feel the wind between their whiskers.

We have a bunch of neighbor girls on our block who are Froggy's age (give or take a year), and Froggy loves running out the door saying, "I'm off to C's house!" The freedom has transformed her. And it's made my life easier. Less, "Mommy, play with me!" and "I'm bored!" The girls run from house to house, playing American Girl Dolls and climbing the rubber tree, swinging on the tire swing and terrorizing our quiet neighbors. They own the neighborhood now, and love to play "spies" where they hide in the bushes and spy on the passerbys. I caught them spraying unsuspecting walkers with a squirt bottle and found out later it was filled with toilet water. Oh my. They are the girl versions of Dennis the Menace. Denise the Menice of Venice!

Life is good. Hard, but good. As I write this, it is my first weekend in 3 weeks sans kiddo. Atticus and I walked to breakfast (with mimosas of course!), piddled around the house, wrote a bit, went for a walk on the beach, hit the book store, and are now settled in for a marathon of Downton Abbey. After the holidays and struggling with a defiant but sweet Froggy, this is just what the doctor ordered. For both of us.
 Time to regroup, get some rest and get ready for my rambunctious and rowdy little Frog.