Iowa...embracing the cold part 2

Driving to Iowa City for a kid-less vacation with my sister!

First things first.

Visiting the theatre building...ah the smell of sawdust brought back memories.

One of my old apartment buildings. It was a frat house converted into very small studio apartments. I found my cat Piper here. She came from a feral mama who was taken by animal control. But they couldn't catch Piper (we still can't). She was hiding in a pipe (thus the name Piper) and I had to use falcon gloves to pull her out. She was WILD. She's calmed down in her old age, but still not a big snuggler.

I used to drive these buses! Never hit a single person.

So did Auntie Honka! She did hit people. No, just kidding.

At the theatre building.

Having dinner at my favorite restaurant - The Sanctuary.

Visiting with an old friend and his wife.

Pondering my next beer.

Posing like dorks at our hotel room. Hey, it's a big deal for me to get out, and to stay in a hotel without a number in the title.

Cozy beds with actual comforters. I'm so easily pleased.

The hotel had a casino...where I realized I may have a gambling problem. Fortunately Auntie pulled me away from the slots before we had to call 1800-bets-off. And I only lost $20.

We had a fabulous time and I only called home 15 times to see how Froggy was doing. Baby steps.

Iowa - embracing the cold, part one.

I got a snowball with your name on it.

Auntie Honka kissing and possibly 'feeling up' the snowman.

Remember the movie "A Christmas Story?" This is the pink version.

Kissing Frosty.

Papa and Froggy working on the torso.

Ccc.ccc...cold

Tomorrow morning it will be 5 degrees. The wind chill...get ready.... twenty below zero. I've lived in LA so long, I forgot what it feels like to have your nostrils freeze together. Ahhhh good times!

Froggy LOVES the cold. She boasted to her Papa that she never, never, never (nine nevers) gets cold. As we speak she's running around the house sans clothes. What a weirdo. I predict she'll be one of those crazy people who does polar plunges. Not me. I'm in layers with wool socks and have been turning the heat up at least one degree everyday we've been here.

As we exited the airport Friday, Froggy was amazed to actually SEE her breath. We built a snow man, had a snow ball fight (Froggy won), made snow angels, hit the Science Center, drank hot toddies, Mom made a roast, visited Grammy, and it's only Monday. Whew.

Auntie Honka and I are driving to Iowa City tomorrow to visit our old college town. GO HAWKS!!! Froggy will stay with Grandma and Papa while we hit our old haunts for some music, cheese bread from the Old Mill and hopefully some local music. Even in zero degrees, we're feeling the warmth of family. I know... I know... schmaltzy.

Into the Brrrrrrr!

In the ferris wheel on the Santa Monica Pier

(Sand angel - the CA equivolent of snow angel)

Froggy and I fly to Iowa today. Brrr. I've been told by my family that it's going to be quite warm this weekend... the high a whopping 30 degrees. We are totally unprepared and will be doing some shopping tomorrow for a snow suit and mittens.

Despite the freezing temps, we cannot wait to be home!!! Dad, make some hot toddies! Mom, turn up the heat (and no 67 is not warm enough), and Auntie...bring over Ruby so we can make a snow dog angel!!! Can't wait!!!

A Kind Gesture

This morning I got to sleep in til 8:30! Which in parent time is the equivolent of a teenager's 3:30 in the afternoon. And then, like an answer to a collective prayer, FD and Froggy brought me breakfast in bed. Just like that, one kind gesture, and I know today will be different.

Life as we know it

Over the weekend, a good friend of mine from high school visited with her husband.

I know it's wrong to compare, that witnessing someone's relationship from the outside and comparing it to the inside of one's own relationship is an unfair comparison. I know this.

I also know that I got a glimpse of what healthy love is. What it looks like at least from the outside -when there is mutual respect, admiration, and adoration. I've had glimpses of this from my sister and her husband, my friends, and my own parents. My sister's husband books flights for her, takes her to the theatre, reserves dinner reservations, sets up their payments online, fills her car with gas, and makes an effort to spend time with our family. To me, these gestures are love. There is a thought and action of love.

My girlfriend who visited never had to worry about the rental car, about looking up directions for their trip, making arrangements for dinner, moving their car to a new spot late at night. My parents still giggle, laugh at each other's jokes, kiss one another upon coming home. I know what healthy love looks like. I know that healthy love does not involve name calling, does not blame and deny, does not lie or seek pain. I know that healthy love involves partners watching out for each other, wanting the best, seeking friendship. I know this is not our relationship. And even though in my heart, I knew these things were true, it didn't become real until I saw the authentic kind.

I know this life has not been easy. I know that dreams did not come true, that we've had to extract the joy out of a tough situation. I know that late at night I move the car, take the dog out, pay the bills and do the treatments, make sure the house is clean and laundry done, write thank-you notes, read the self-help and "how to make love work" books, that I am tired and raw and overwhelmed and at the end of the day it is just me here. Me. And I'm so sick of me. I want a partner who reads the books, who books the flights, who does the work, who cleans the cars, who boils the nebulizers, who scoops the poop, who writes the checks, who makes the breakfast, who runs the bath, vacuums the dog hair, and picks up the toddler, who takes care of me, and is motivated by love. I am so tired of taking care of everyone and have finally, finally come to the conclusion, after glimpses and yes, even comparisons that it is only right that these things were always meant to be shared, that there is no get out of jail free card, no get out of cleaning the bathroom card, this is life. This is our life. And it's hard and frustrating. It does not promise instant gratification or ego boosts. And I'm not condemning, of course there have been shared responsibilities. Neither one of us is living it up in Cabo. We are both tired and working very hard. FD is working 60 hours/week now at the hospital. We are working, working hard.

I have never felt that if I fell, there would be a partner to pick me up. I've felt that there isn't time or room to fall. That if I fall, the family falls too.

It is more than the action of moving the car from the wrong side of the street, or booking dinner reservations, it is the spirit in which it's done. These are not chores delegated from a tired wife, these are the parts that make the whole work. I never signed up to be bad cop, I never filled out the application for cleaning parole officer, but this is how it ended up. Someone has to be the jerk who reminds everyone of oil changes and pediatric appts, dentist visits, veterinary appts, and overdue parking tickets. And I don't mind being the jerk. I'm used to it by now. It's one thing to be the jerk, it's another thing to be treated like a jerk.

I'm finding it very difficult to find kindess in my heart these days. It is usually something that comes naturally. When my friends or family are hurting and need something, it hurts not to make it better, to show that person they are loved.

Now, my instinct is not kindness, my initial reaction is not to relate or condone, to comfort or pacify. My instinct is to protect, to shield and confront. My instinct is to question intentions, to wonder why helping does not come easily, why everything is so hard, why the team has gone home. My heart hurts. My stomach hurts. I want a family. I don't want to fight, but can't put my gloves down either. Because whether I like it or not, we are in the ring. And this does not resemble love. It doesn't come close. I think even in the worst of times love isn't standing there saying, "Put your dukes up!" I just think that if you want something to work, you make it work, if you want to fight it, you do. In some ways love is that simple. And I think the people who make it work, simply think about their other half first. Before you eat, before you sit, before you sleep, love is, "What about you, my dear." .....If only in my dreams.

Eat Kid! Eat!

Desperate for Froggy to gain weight, I actually purchased "Easy Cheese" today. Remember that stuff from tween slumber party fun? It's squirtable processed cheese food. We called it Sleazy Cheese. Yes desperate times called for desperate measures.

This morning for breakfast Froggy had Milk with supplement, cheerios, bran, raisins and two scoops of Nutella. She then went the entire day without an appetite. She will usually eat a good breakfast of french toast, fruit, bacon and milk. But for the last week, she's been uber picky. Yesterday she had one milk and a bite of turkey.

I'm hoping after a good poop, I can talk her into some of this Frankenstein food. The good news is we have about ten years before the Easy Cheese expires. Gotta love those preservatives! I used to have food morals, I really did. No more.

While Watching A Show About Penguins

Froggy saw a Macaroni Penguin and asked:

Why are they called Mac n' Cheese penguins?

So of course I had to look it up.

Maccaronism was a term for a particular style in 18th-century England marked by flamboyant or excessive ornamentation. A person who adopted this fashion was labelled a maccaroni or macaroni, as in the song "Yankee Doodle".

I always wondered why in the song they said, "Stuck a feather in his hat and called it macaroni." I love learning vicariously through my child!

I'm thankful for

For my family, my Froggy, my friends.

Double lattes, dark chocolate and India Pale Ale.

HBO, bubble baths, good books, all the incredible theatre and museums in Los Angeles.

The drawings and art projects Froggy brings home from preschool. I never knew a hand turkey with feathers could make me so happy.

I'm thankful for Froggy's silly dancing on the livingroom rug.

For folk music, jazz and soul.

I'm thankful for Froggy's teachers who love her and think she's hilarious.

For our pets, Buddy, Piper and Peanut.

I'm thankful for how incredibly loved and fortunate we are.

Happy Thanksgiving everyone!

Froggyisms

Froggy: Why do they call kitties fe-lions?


Froggy toots loudly and says, "That should keep you goin'!"


It's been so dry here and when it started sprinkling, Froggy said, "I guess it really does rain in California."


And not proud of this one, but...

Froggy startles the cat Peanut by screaming at her and says, "I scared Peanut out of the crap."

Auntie Honka Visits and we finally tell Froggy Disneyland exists.

Disneyland! Woo Hoo! The first time for Froggy.

In Minny Mouse's House.

Froggy did not understand who the heck the Mad Hatter was.

Meeting Mickey really was magical.

For the record, Minny's house was smaller than Mickey's and had less staff. Hmmm.

Goofy took Froggy's stuffed snake and pretented that it attacked him.

Here's Goofy running away while Froggy's snake bites his face.

Watching the parade!

At the beach with Auntie.

That is one BIG margarita Auntie.

Don't mind if I join you.

Froggy had a virgin apple juice.

What a great week! We miss you Auntie. Thanks for doing dishes and vacuuming and pretending that vacations include housework and giving meds. You're the best. oxox

Good Stuff

My sister is in town. And not only have we hit Disneyland, shopping and Artwalk, but tonight we saw Richard Thompson and Loudon Wainwright in concert at UCLA's Royce Hall.

Here's a great song by Loudon, called "Your Mother and I."

Or "Another Song in C"


And a great Richard Thompson song "1952 Vincent Black Lightning"

or Beeswing.

CF Clinic Update

Froggy had her CF clinic appointment on Friday, Nov. 6th.

She is still 30.5 lbs - the same weight she's been all year. Her height however was 100cm. She's growing up, not out. Darn. So her BMI is 10, weight 10th percentile and height 50th percentile. Our nutritionist said that because of Froggy's pickiness, coupled with lack of appetite, the g-tube is inevitable.

FD and I have been fighting this decision from the beginning. We felt like it's such an invasive step, that she could be genetically small, and would start eating more the older she became. But if anything, she eats less and is more active. Because there is a direct correlation between digestive health and lung health, FD and I have decided this is the best decision for our Froggy. We have tried EVERYTHING to get her to gain weight, milks with supplement in the middle of the night, high fat/calorie meals and snacks. We wanted to exhaust our options before the g-tube. But here we are, a year later and only a few ounces gained.

The wheels are turning and we'll meet with a GI doc soon for a couple tests before we schedule the surgery. It will probably happen in December or early January.

Froggy's throat culture came back NEGATIVE for Pseudomonas and MRSA, and all the other nasty little critters. Woo Hoo! Her x-rays showed little change from the x-ray two years ago, but did show slight peri-bronchial markings. I believe this is typical for CF lungs, but will do some research to see what this means exactly. Her blood levels were good, a liver enzyme elevated slightly, but could be due to her seizure meds. We're going to keep an eye on that, probably do another draw at our next appointment.

Despite the g-tube news (which we were prepared for) overall it is good news. Our kiddo is one healthy little frog. Her lungs are clear, even with a cold. And her preschool teacher said she seems healthier than the 'healthy' kids. Her immune system rocks! Must be all the broccoli she eats!

Halloween 2009

Blurry, but still stinkin' cute. Froggy dressed as a puppy, Hummingbird dressed as a cat and introducing "Robot Boy" as himself.


Swinging at our local park after trick-or-treating.

FD dressed as a Respiratory Therapist. Pretty clever.

Our neighbors dressed as a 1950's couple grilling with their "little sausage."

At one house we were serenaded!

We had a wonderful Halloween. I only wished I'd taken better pictures. Oh well, can't win them all!

Lauren

I've been reading Lauren's blog for years -- shortly after Froggy's diagnosis. Her kindness, faith and strength has been such a gift. She died yesterday. She was only 29.

I hate this disease.

I didn't know her personally, but it was so clear in her writing what a lovely and intelligent woman she was, how much she had to offer the world, and other families dealing with CF.

It seems only fitting that when I read her blog and her husband wrote that she passed away, my breath was taken away. I couldn't believe that someone so young, so kindhearted, could be taken, just like that. That is the reality of Cystic Fibrosis. This is why we must fight so hard for a cure.

Lauren, I hope you are breathing deep breaths of love tonight, as you leave the body that failed you, to find the weightlessness of being at peace. Your faith and trust in God has been an unreachable goal of mine, to find the certainty that you have, the absolute knowledge that even when we come to the end, we find a beginning. For the little I knew of you, I loved. And I know you of all people have found what you were looking for.

If you'd like to leave a kind word for her family, click HERE.

And if you'd like to make a donation in her name, to the CF Foundation, please click HERE.

I'm going to go into the bedroom and hug and kiss my Froggy like I never have before.