Froggy Mama

Wednesday, January 01, 2014

Enteral Love


It feeds her

mechanical bosom 
pumping rhythm from saxophone tubes 
at night.

I plug her in
I plug her out

like a fraud.

It has it’s own heartbeat,
duodenum, duodenum, duodenum.
This is not how it was supposed to be

her perfect baby body,
that sleek porpoise,
shiny belly that rose and fell
like the tide

jejunum, jejunum, jejunum.

For her own good
they cut a blow hole
so she can rise to the surface 
one day.

but there is still a space

where there shouldn’t be. 

by Froggymama

Tuesday, October 29, 2013

Froggyism

Froggy dancing on the toilet "Look mama, I'm hula-pooping."

Saturday, October 19, 2013

Hawaii Family-moon








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 and I'm so grateful that after a busy year of wedding planning, and then moving, 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.

No.

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!

No.

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.

No.

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?

Wednesday, March 06, 2013

Team Froggy's Legs 2013