Thursday, May 27, 2010
We are here. This place, this strange purgatory. In a way it is like sitting next to a dying friend waiting for their last breath, wishing it would just be over, the nurses would come in the room, put a white sheet over the last ten years and say, "I'm sorry honey, it's gone." The finality is comforting like a sob, a deep sob in the shower with hot water running. It is over. And I've known for a long time, but held onto a hope this wasn't the last breath of us.
I'm sad for Froggy. I'm sad that I've failed her. I'm sad that she has not only been dealt CF, but divorce. It is unforgivable. I should have known better, to put my faith in what could be instead of what was. I will never make that mistake again.
As difficult as this transition is, I know the alternative was worse. We do not live in a vacuum and the mistakes we make as parents tear holes in our children. I couldn't repair the damage. I couldn't fix it. As a mom I feel like a failure in so many ways. I can't take away CF, I can't take away this divorce. It is life. It is our life. And the only thing I can do is cushion the blow, to let her know that no matter what, she's loved. And that is a sad second to a complete family. So Froggy, my dear, my angel, my love, I'm sorry.
Wednesday, May 26, 2010
Froggy went from the 3rd percentile in BMI to the 25th with her new G-tube. Woo hoo!
Sputum culture showed normal lung flora. No pseudomonas thank you very much!
She had her first PFT's (pulmonary function test), where she had to follow specific breathing instructions. The RT (respiratory therapist) didn't think she could do it and asked how old she was, and which doctor thought a 4 year old could do PFT's? I said, she's a smart cookie, she can do it. And she did!
Everyone was thrilled, especially this mama!
Sunday, May 23, 2010
We had such a fun Great Strides this year! My friend T-Rex flew in from San Franscisco (the cutie with the flower in her hair). We raised $13,000 so far, and more checks and online donations are coming in.
Our walk was a 10k on the beach. It was a beautiful day, so we stopped for sand breaks, snacks and a carousel ride.
We also had two other teams, one in Iowa and one in Wisconsin, walking for Froggy and all the other tadpoles with CF. Thanks to everyone who walked, contributed, sent emails, and helped spread the word!
Monday, May 17, 2010
So today, Froggy was on her fake cell phone and this is the conversation I overheard:
Froggy: Oh, hi Beeman (one of her very best friends). It's me Froggy. After preschool we're going to have a meeting and do boring stuff. Uh yeah... Oh, where's that book about restaurants. (perusing my book shelf and pulling out a fat novel), And we're going to read boring books at the meeting too, boring mommy books.
Today, while folding laundry, I turned on the tv to watch an old rerun of "Frasier." This was the conversation that ensued:
Froggy: I don't like this show.
Froggymama: Neither does Daddy.
Froggy: NOBODY likes this show.
(sorry Kelsey Grammer, the toddler has spoken)
Our sink is clogged because Froggy put a wet piece of toilet paper down it. So while brushing our teeth this morning I said:
FM: The sink is clogged.
FM: Because you put that toilet paper wad down it.
Froggy: Oh... (her eyes light up). We HAVE to get a Turbo Snake now!!!
FM: What's a turbo snake?
Froggy: I saw it on TV. It get the clog all the way down the drain. Look mommy, all the way down here. (pointing to where the pipes meet wall). We HAVE to get one!
I have a feeling she put the wad down the sink so I would have to buy a turbo snake. No more commercials for this kid. It's PBS from now on.
The other day, Froggy and I are in the shower:
Froggy: Mommy, why do you have a big butt?
FM: Genetics I guess. Why do you have a small butt?
Froggy: Cause I'm little. I'm going to start a little butt club and all my friends are going to be in it. Beeman, Hummingbird, Bub. We'll be The Little Butts.
And one more that I'm really not proud of:
Most kids go through a haircutting stage. At least once, they try the bangs or a big chunk off the top. It's a forgivable offense. Hair grows back, they're curious, blah blah blah. Well Froggy skipped this phase and decided to go right to the 'cutting other people's hair' phase.
She was alone with this girl for three minutes in her room and I walk in and see an expression on Froggy's face where I know something has gone down, and it's isn't good.
FM: Froggy, what did you do?
FM: I need you to tell the truth now. It's very important to tell the truth. What did you do?
Froggy says nothing.
I change tactics and turn to the good child.
FM: Honey, what did she do?
Good Child: We should tell the truth, right?
Good Child: (turning to Froggy) You tell her...the truth.
FM: Cut what?
Froggy: Cut hair.
FM: Who's hair?
Froggy points to her friend's incredibly long hair that has NEVER been cut. It's past her knees, flowing and she won't even put it in a pony tail, because she loves it's Repunzalesque quality, it's Sampson and Delilah loveliness. If she were a greek goddess, her hair would be a magical entity that launches a thousand ships. And Froggy cut it.
Starting to sweat now, because I couldn't tell where the locks were missing on her head....
FM: Froggy, where's the hair?
Froggy: Under the bed.
FM: You hid her hair under the bed?
I lift up the covers and there they are, three big curly locks mixed with cat hair. I scoop it up and apologize profusely, scolding Froggy and the little girl shuffles out the door with Grandma. I call her mom, email her mom, offer to pay for a haircut. Two days later, we haven't heard back. I guess that lesson is learned. Check that one off the list. And sadly, check another friend off the list too.