Saturday, December 31, 2011

Fab Froggyisms

While at dinner the other night I told my Aunt J. she should come visit us in California. I was explaining that ticket prices aren't that expensive and they would be welcome to stay with us. Froggy looked up very seriously and authoritatively and said, "Our house is not a hotel!"

Papa Gus was telling Froggy that he didn't really listen to music that much anymore. He used to listen to it as a kid, but didn't care for it anymore. Froggy could not believe her ears and said, "Papa, not liking music is like not liking puppies."

Sunday, December 25, 2011

In the meantime

Froggy is terrific, healthier than she has ever been. Her BMI is 50, her lung function between 106 and 114 (PFT's), her bronchoscope was wonderful and she has very little mucus in her lungs. Her Pulmonologist said her lungs are beautiful. Beautiful! CF lungs - beautiful. Wow.

She's thriving in Kindergarten. The kids at school love her. She is a good friend. She's learning to read and her teacher is one of those rare souls who harnesses the true joy of learning. I volunteer and cannot believe the dedication and energy that goes into each lesson. And most importantly, they are teaching kids to be good people, stressing empathy and responsibility. The kids in her class are smart, funny, interesting children. It blows my mind.

Life is tough as a single parent. Managing Froggy's health care on my own, working 2 part-time jobs, taking care of three pets, fundraising, and coordinating custody has taken its toll. I'm busy, exhausted, but complete. As tired as I am, there is fullfillment, appreciation, and with new joy in our home.

I know I can never do it all. Living two thousand miles from my family, I do not have the natural support system that allows me to do it all. I'm always failing someone, my boss, Froggy, the house. It is impossible to do it all. And I try to forgive myself for not being able to manage it with grace. My kid shows up to school late, her homework isn't always complete. But she's healthy. She's healthy and THAT is my numero uno. Everyday I make sure she eats a huge breakfast, lunch and dinner, gets plenty of exercise, does her treatments, a sinus rinse, feeding tube and meds. After school, I make sure she has some good ole unstructured playtime. We read atleast 30 minutes every night. I schedule the appointments and talk to other parents, I read the literature about CF and parenting. I prioritize and if I fail at having the best dressed kid, or the most punctual, if dinner isn't gourmet, if her hair isn't always brushed, well, I am doing the best, the best I can, running myself ragged for sometimes the very least.

There has been plenty of judgement, snarky tones, rude looks, rolled eyes, unkind words, and it is so difficult because no one really understands. People think they can step into our shoes, but unless you're here, doing it, there is no room. I prioritize in ways I never thought I would have to. When we wake up, Froggy has a g-tube feed, meds, treatment, a sinus rinse, usually a bowel movement (that is contingent on everything else), plus a big breakfast, getting dressed, hair brushed, teeth brushed, lunch packed, so sometimes we're late. I understand that her sleep is important, sending her to school with food in her belly is important (because she won't eat at school), knowing the sinus rinse will prevent yet another sinus infection is important. And she can't do any of it until she poops. Because she has gastritis and chronic constipation, and doing her treatment at 6am before all of this hurts her belly, so I deal with the rude comments from people who don't get it. And I get an earful about what a terrible parent I am for taking Froggy to McDonalds twice a month. And I know I shouldn't let these ignorant and defensive attacks hurt, but they do. And the moment I say, "Instead of judging me, why don't you help me," those comments die down for a while.

I don't judge anyone anymore. The last six years I have learned that. Big time. You never know what someone goes through, what they are up against. Unless you are a fly on the wall in every moment of someone else's day, forgetaboutit. You don't know nothin'. I was judged for introducing my child to my boyfriend. I was called horrible names, called a bad mother. As if suddenly I was not the same mother I've been for the last six years. Suddenly, as a single woman, I am wreckless and carefree. Of course I was careful. I always am. I introduced this new person slowly and as a friend, transitioning him from a part of "the gang" to part of our life. And now this person is not only a huge part of my life but Froggy's as well.

There are many mornings when I wake up and think, "I just can't." But I do. I'm not winning any awards. I lose my temper. The cats are neglected. Our sink always has dishes in it. Always. I know I'm not perfect but I do my best.

Froggy struggles with anger and obstinance. She is a tough cookie with a short attention span and more sensitive than she lets on. I know this divorce has affected her. I know she is changed because of it. I also know that it was the right decision and looking back, I cannot imagine living the way we did. I did the right thing. But still.

There is joy in our home, a sense of family that we've never had. There is kindness and respect, dinners around the table, consistency and love. When my friend had a baby, she said that her husband loved the new babe, but his first priority was her. That support allowed her to take care of the baby. And without that, she would have not been the best mother she could be. I understand that now. You need the man to support the woman so the woman can take care of the babe. As caveman as it sounds, it works. And it isn't selfish to have a partner. It's necessary. It's beneficial. Good for Froggy and me. Good for all of us. And I'm going to stop defending myself because my friends and family know how hard I work, how my numero uno has been and always will be Froggy. Always. And everything else is just noise. In the meantime I'm going to enjoy this girl. This incredible, frustrating, intelligent, funny, complicated, smart, sweet little Froggy.

Tuesday, October 18, 2011

Pillow Talk with Froggy

After three books and many pleadings from me to "GO TO SLEEP!," Froggy asked me to tell her a story about when I was little. She's now six years old and has been asking this question for the last four. I'm running out of material. Big time.

So reaching deep, I remembered a story with a pertinent moral. Pertinent because sometimes she is lacking in empathy and sensitivity for others. I thought I was oh so clever. Tired, but clever.

Froggymama: When mommy was little, I was helping Grandma S. in the garden. She was reaching down into the soil, pulling weeds and tending to all her plants. I stood next to her, watching, as a bee landed on her back. Because I loved my mommy so much, I wanted to make sure she didn't get stung. She had no idea the bee had landed there, so I thought it was up to me to save her! I reached down and picked up that bee, holding it in the palm of my hand. I was so proud of myself for rescuing my mama, I forgot that the bee was still in my hand. And do you know what happened? That silly bee stung me! But the moral of the story is: When you love someone, you would rather get stung than have them hurt. And that's how I feel about you. That's love.

After a long silence, where I thought perhaps the Frog was processing the concept of sacrifice and contemplating her love for her own mother, came this unexpected, yet very Froggy reply:

Froggy: Well, if you'd just left the bee alone, it wouldn't have stung either of you.

And with that, she fell fast asleep.

Tuesday, October 11, 2011

Froggy Froggy Froggyisms!

Turns out Froggy is the next Bobby Fischer. While teaching her to play chess, I explained that the goal is to take the King away from your apponent. Froggy reached over to my side of the board, grabbed my king and said, "I win."

While doing homework (yes, homework - Kindergarteners not only go to school a full day, but they have a ton of homework). So while doing homework, Froggy was supposed to cross out the one thing that didn't belong in a row. For example, in a row of sailboats, there was a cat. So I said, "Put an X on the item that doesn't belong." So Froggy put an X on the cat, to which I replied, "Excellent." And then my little punster said, "Xcellent, cause I put an X on the right answer!"

When we come home from anywhere, our dog Buddy freaks out with ecstactic jumps and barks like we've been away a year. A few days ago when Froggy walked in the door and was met with this excitement, she said, "Buddy does his victory dance when we come home!" And we don't even watch football.

I've been trying to teach Froggy empathy. Humor comes easy for her, empathy - not so much. And she does have it, but she has a hard time showing it, or conjuring it. So when it springs forth naturally, I jump on it and explain how important it is to be empathetic and show empathy for others. Around my birthday, Froggy's dad asked her what she'd like to give me as a present. He listed some things and Froggy said, "I'd like to clean the house for her." I thought that was so awesome that instead of wanting to get me something fun, she really thought about what would be a good present for me. And it's true. I'd take a clean house over flowers anyday.

Also on empathy: Froggy's friend at school has had some separation anxiety from her mom. I volunteer on Tuesdays and witnessed this: They all sit on a carpet on the floor during lessons and storytime. Her friend was wimpering and holding back tears. Froggy sat next to her and rubbed her back until she felt better. Brought tears to this sappy mama's eyes.

Sunday, October 09, 2011

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!

Tuesday, August 30, 2011


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.

Friday, August 12, 2011

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.

Tuesday, August 02, 2011

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.

Monday, July 25, 2011

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?

Sunday, June 19, 2011

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!!!

Friday, June 10, 2011

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.


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


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.

Saturday, May 28, 2011

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


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.

Friday, April 15, 2011

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.