A slice of our summer

Froggy's graduation from preschool. On to more mature ventures.

Or maybe not.

Everyone came together to celebrate the big day!

Froggy and mama in Big Bear on a vacation.

Our cabin had a barn with bunnies and llamas!

It was so beautiful and relaxing!

Disneyland with our favorite pals!

Froggy's 6th birthday party. It was a Halloween/disco theme with a disco ball pinata!

Auntie visited too!

Froggyisms

Last weekend we drove to Big Bear and went camping. After a long drive up the mountain, we found a very cool place to hike. After getting out of the car and walking up the hill, Froggy said, "We've arrived at our destiny!"

After dinner the other night, we stopped at a store for coffee. Froggy found saw a toy, picked it up and said, "Well that got caught in my eye!" I think she meant, 'that caught my eye.' But I like her expression better. Very visceral.

Froggy is really picking up on wordplay and puns. I couldn't be more proud! The other day she put a slinky on her arm and said, "It's armor! Get it? Arm--or?" Yeah, we got it kiddo!

A bedtime conversation:

Me: Froggy, it's time for bed.
Froggy: Really Mom, really? I expected more from you!

Sissysnuggiekins (Froggy's sister) is a model now. She's been traveling around the world and has become quite successful. While talking to Froggy's Grandma, I asked her where Sissysnuggiekins was. Froggy picked up on the conversation and said, "New York, Paris, Hamsterdam?" Hamsterdam!

While drinking a diet ginger ale the other day, Froggy asked if she could have a sip. I said, "No, it's not good for kids, it's diet." Froggy replied, "Is it called die-et, cause you die from it?" Yikes, didn't really want to have the aspertame conversation. Maybe she's onto something.

While at Big Bear, we walked into a very cool toy story. Froggy walked in and immediately found a big bin of stuffed animals. She already has a million, and I am not keen on buying her more. She found a meer cat and asked if I would buy it for her. When I replied 'no' she said, "So we came here for nothing!" The woman who owned the store almost peed her pants.

She's ALIVE!!!

It's been a while since I've spilled my guts.

Sometimes when writing, I think about the bloody visual of words; guts exposed, an open rib cage on a table, a disgusting but honest display of our insides; the innards of a person; a life, a marriage, a divorce.

I see a surgery where parts are taken out and placed in a kidney-shaped pan. Scissors and clamps are passed around, quiet murmurs of 'hand me this' and 'hand me that,' with some blame and bleeding, but in the end, the patient taking in new breath. Chest rising and falling. Day after day. Because it's necessary.

Catgut sews up the wounds of a sentence, piecing together the fragments of a paragraph, a life. And somehow, somehow when I look down at the table of all the pieces apart, a person suspended above their own surgery, the body dissected, I see the whole story.

Words thrown into the air - a Scrabble game knocked over, letters falling to the floor, forming a jabberwocky that suddenly makes sense. And I know.

What took place in the subtext of our anatomy, what fell apart.

Organs starved of oxygen. Pieces, although scattered, are still alive, red, beating, In a new body, a new life. Miraculously, the patient survives.

For the first time. In a long time. I am excited. To wake up. To take in a deep breath of this new life. Whole, pink and thriving.

Neurology Update

Froggy's neurologist called and said that indeed her EEG was normal. I was so happy that I forgot to be angry about how they screwed up and thought it wasn't. Apparently she had 'normal' spikes on the EEG because of the type of sleep she was in. They were higher than normal brain waves, but it was normal for sleep cycle. So, we can start tapering off her seizure meds. So from good news to bad news, back to good news again - tis never a dull moment.

CF Clinic Appointment

Froggy had her CF appointment on Friday. Our new hospital is WONDERFUL! They are very aggressive and want to do a bronchoscopy and GI scope. Because Froggy cultured pseudomonas and a cousin bacteria to b. cepacia (a while ago) they want to go deep into her lungs to search for bacterias that maybe hiding out and not showing up on her throat cultures. I'm not sure how I feel about it, because it is so invasive and they need to use general anesthesia. But I also feel like this clinic has a genuine interest in Froggy's well-being that I never felt with our old clinic. It will take a week or two before we receive the results of her latest throat swab and blood panel, so wish us luck on both of those! She also has a CT scan this Thursday to check out her lungs and sinuses.

Froggy rocked her PFT's and scored a 112% on her FEV1, 107 on her FVC (full volume capacity), and she weighs 40lbs and is 44 1/4 inches. We need to increase her weight a little, so we may add some bolus feeds in the day. But for now, we'll stick with what we've been doing.

In other health news, Froggy had an EEG a few weeks ago. Her neurologist was out of town so another neurologist called to tell me the results were normal. But tonight her regular neurologist emailed saying that her EEG was abnormal, so he doesn't want to decrease her meds. I'm crushed because I thought her seizure disorder was on it's way out. I'll know more tomorrow and hopefully and we can figure out what's going on.

A lot is happening with Froggy, even though she is thriving and healthy and doing great, we will always be awaiting tests. But I think that is the personality of Cystic Fibrosis, even when things are going well, there will always be something lurking in the shadows. It is the nature of this beast. But for now she is healthy, super active, enjoying gymnastics camp, and having a fabulous summer. So no complaints. She's happy, healthy and loving life. What else is there?

Froggy Goes Surfing

Pro-surfer giving Froggy some advice.

They said that she should go out like a queen!

So she did!

The Mauli Ola Foundation is a non-profit foundation where professional surfers donate their time and expertise to teach kiddos with CF how to surf. Salt water and swimming are incredible respiratory treatments to help loosen mucus in the lungs. These pro-surfers fly in from Hawaii and all over the US, to teach kiddos like Froggy how to surf. It was very touching to see these "dudes" get so emotionally invested.

Froggy surfed her very first time trying. The water was chilly and she got some salt water up the nose, so she wasn't too thrilled at the end. But she did great, and we were so proud of her!!!

Funny, Fabulous, Froggyisms

Froggy shows me her stuffed animal shark and says:

Froggy: You can tell it's a shark by it's extra fin.

And then she looks at me like she's not sure I'll understand, but goes ahead anyway.

Froggy: It's called a dorsal fin.


We haven't been to Iowa in a while, evident by this next question:

Froggy: Does pork come from a porcupine?


And the other day on our walk to the car, this was our conversation:

Froggy: I wish I was a dingo so I could eat animals.
Froggymama: You eat animals.
Froggy: I eat ants.
Froggymama: No you don't.
Froggy: Yes, I do. Everyone does.
Froggymama: Your friend Beeman doesn't.
Froggy: Of course not! He's a vegetarian.

And some great Confucius Froggyisms:

Froggy: We're not the type of people who litter.

and

Froggy: I'll wear my bathing suit to the sun.

and

Froggy: I wonder what's really on the dark side of the moon?


On a hike the other day, Froggy takes two sticks and swings them in the air and said...

Froggy: I'm conducting nature.


When I told Froggy we would see her friend Mr. O the next day, she said:

Froggy: We can't see Mr. O. tomorrow because I will be busy making evil plans.

I'll leave you with that.

Where Have You Been Froggymama?

In Topanga, climbing mountains.

Searching for WILD things.


Rock climbing with good friends and Buddy!

Enjoying the view.

Swimming, like a frog of course.

Hunting for Easter Eggs

In her Easter dress that she picked out. Can you say Fancy Frog?

Eating lots of candy.

Finding tons of Easter eggs

Posing.

This Easter Egg stuff is serious business.

Getting lots of snuggles from Daddy.

No time for kisses, must...find...more...eggs!

Found a secret garden.

Opened up treasures.

Raised money for the cure.

Swam in the ocean.

It was too cold for mommy. She's a wimp, says the Frog.

And sported very cool Froggy goggles.

So as you can see, we've been a bit busy. I wrote a script, fundraised, and have been entertaining a very busy little tadpole. Life is good.

This essay on divorce really hit home. Click HERE to read.

Seester in town

My sis came for a visit in March. Legoland, the San Diego zoo, Stone Brewery, and just relaxing at home...ten days of sister bliss. We miss her so.

Froggyisms

I have been terrible lately about writing down Froggyisms.

A week ago on a hike Froggy ran down a hill and said, "Go for it Mother Nature!"

When we came to a grassy clearing, she said, "It's so bright it looks like we're in a cartoon." And it did. After the rains, the greens were almost neon and surreal. It was one of the best hikes we've ever had. She's at this incredible age where she wants to know EVERYTHING. And now that I own a smartphone Mommy can google all of her questions! And I appear much smarter than I actually am.

Today while reading some of the tsunami news on my computer while doing Froggy's treatment, she saw a photo of the earth from space, and quipped, "Do earth cameras work in outer space?" I told her they probably have special cameras that can take photos of things from far away in great detail. To which she replied, "Can we get one?" Yeah honey, let's put space camera on your birthday wish list.

Beautiful California, Beautiful Froggy

Dirty Laundry

I have written 50 blog posts I can't publish.


I can write about being a mom, I can write about CF, about Froggy, about being a writer, about Los Angeles, about a million things. But I can't write about the big D. How could I write about that without hanging our dirty laundry on the cyberspace line?

And yet it encompasses so much of our lives. It is our everyday, our new life, yet it mostly remains private. We have to keep up appearances and pretend that a family didn't really break up, that everyone is still whole. That a child isn't in the middle. Because that would be embarrassing. So we'll smile and nod and just hop over that great chasm that is... well you know.

I can say that I'm tired, disheartened, frustrated, over-worked and angry.

The other day I heard a quote that made the hair on the back of my neck stand up:

"Anger is like drinking poison and expecting the other person to die."

Every day I drink this poison, when I come home to dirty dishes, a list of calls, a stack of bills, a dusty house and there is no partner, no one at 9pm when the dog needs to go out and the clothes are in the machine downstairs, and I still have nebulizers to boil, meds to prepare, and all I want to do is say, "Someone else do it!"

Someone else get up in the middle of the night, someone else wake up to the dog and the cats and the kid, just for one day." And when I do ask for help, there is instant regret. Because the repercussions of entitlement, apathy, or passive aggressiveness are worse than just doing it myself. Okay, maybe a little dirty laundry. Just a bra or sock. What do you expect?

When I ask for help it's what a mom must feel like when she asks her teenager to clean her room. Clothes shoved under the rug, a naked mattress, and a moldy cheese sandwich in the closet. The bare minimum, just enough to say, "I did what you asked, geeeeez." But it never resembles actual help. And ultimately, I come in, rake the clothes out from under the rug, put the sheets on the mattress, and throw away the moldy cheese sandwich.

And then I find myself chugging poison like it's red kool-aid in a South American cult. Because asking for help and getting half-ass is worse than nothing. It looks like help, it smells like help. But it isn't help. It's the cardboard cut-out of help.

Every night I go to bed with the weight of the world on my shoulders. Ultimately, realistically I am responsible for Froggy. What doctors she sees, what school she attends, if her clothes are clean, if she's had her meds, if her bed is made, prescriptions called in, if her teeth are brushed. It's up to me. And it's tough and it's even tougher keeping it to myself. So I'm sorry if I threw in a sheet or two, a towel from the hamper. But you should've seen the other 50 posts.