Thursday, October 29, 2009

Just a little poem I wrote...

(Wrote this many years ago, but it's one of my favorites if I do say so myself.)


Aeschylus crowded in the cardboard box
that still has duct tape from the move last summer, and
Sartre, sleeping in the same corner with Whitman.
Words pressed against pages against
covers against each other and I wonder
how they get along in there,
so close with no space to breathe, but rather taking
in the pulpy juice of basement must.
Grandpa’s Modern Mechanics growing black mold from sitting in the shop with
sawdust, still smelling like his tobacco caught between his teeth spit
out in the bucket under the table during dinner with Grandma screaming,
“Not in my house.”
But now it’s time to mix sonnets with soliloquies and
I think I’m not ready for this as I throw
them to their literary death, none more important than the next,
Austen sharing her final resting place with Judy Blume,
from sixth grade when my English teacher-a bitter old nag with cow legs,
told me my favorite author was mediocre, and I felt
mediocre taking in nouns and verbs and pronouns that didn’t seem like a real
language, but rather a
math equation where two trains are supposed to meet at a
certain station at a
certain time that
I never figured out or would ever care to know because I didn’t buy a ticket and I wasn’t
going anywhere,
but it was important when my knees were still knobby and scabs were cool and told stories of bike rides that ended too quickly on our gravel road by the house where the dog
never stopped barking.
Shakespeare and Yeats, Hurston and Hughes are the last to go
always hard to put down
when the candles burn
slow like the hours when sleep is in the other room and I am in
mine wondering why you stay
on your side of the bed as I sift through the pages,
reading nothing but staring at sentences and words that make a song like your breath
on the pillow with no rhyme or meter
like wind caught in the crevice of a leaf’s belly.
Into the back seat, the box with all its wisdom
shaking to the beat of tires on the street.



A woman with CF I know through the blogosphere isn't doing well. She's been in the hospital for a while and could use some prayers, kind thoughts and maybe a comment on her blog for her family. Her name is Lauren and you can visit her site HERE.
"We are like children building a sand castle. We embellish it with beautiful shells, bits of driftwood, and pieces of colored glass. The castle is ours, off-limit to others. We're willing to attack if others threaten to hurt it. Yet despite all our attachment, we know that the tide will inevitably come in and sweep the sand castle away. The trick is to enjoy it fully but without clinging, and when the time comes, let it dissolve back into the sea." - Pema Chodron, from her book, "When Things Fall Apart."

Wednesday, October 28, 2009

Good times

It's 4:30am. This has been our week:

FD worked 12/hour shifts everyday for over a week.

FD got the flu.

FD's car broke down on the freeway.

FD's phone broke.

Someone stole my ATM information and drained my checking and savings account. So the first real paycheck we've had in over 3.5 years was stolen.

Froggy and I stood in line for over 3 hours for the H1N1 vaccine.

I wake up at 6:30am with the Frog and work every second til I drop asleep at night. It feels impossible and hopeless. There are always dishes in the sink and laundry piled over the hamper.
Tonight was one of those nights I'd like expunged from my record as a human being. I ranted, I complained, I yelled, I cried, I blamed. At a time where I need love the most, I am the most unlovable. I would run away from me if I could. I would roll my eyes and head for the door.

There is a breaking point. There is.

I'm sick of being a charity case. I'm sick of needing help. I'm sick of horrible things happening to our family. I'm sick of thinking things have to get better and being disappointed when they don't. I'm sick of things getting worse and worse and worse. I am in the bell jar.

And tomorrow I have to get up (It's now 5am, I guess I am up) and smile and make up for the jerk parent, the jerk person I was last night. And I have to walk through my day feeling the guilt of breaking down, of being angry at so many things.

It seems like we're always in reach of a better life, but the second we try to grab it, it disappears. And the thing I want more than anything is for someone to understand, truly understand what this feels like, to walk through this muck with me, to tell me that big lie that everyone needs to hear, "Everything will be okay." Of course it won't. Life is constantly in flux and more horrible things will happen, but for some reason I'd settle for that big lie right now.

Monday, October 19, 2009

Underwood Farms

Queen of the pumpkins!

Froggy's pal "Blue Eyes."

Corn maze. Froggy's sense of direction needs some work.

Listening to "Western Music."

I wouldn't mess with these cowgirls.

CF News!

To read about new antibiotics in the pipeline click HERE!

From what I've read about this new inhaled antibiotic, it's different from others like Tobi, because it's able to penetrate the mucus and knock out Pseudomonas from the inside out, and possibly even B. Cepacia. Woo Hoo!

Friday, October 16, 2009

No Excuses

My high school drama teacher/life coach gave me some pretty incredible advice once.

I was probably late for class, or missed a meeting, turned something in late, blah blah blah. And she said, "Excuses are pointless. Your friends don't need them and your enemies won't believe them."

It was that Jimminy Cricket advice that has followed me through life saying, "What is the truth? Not the truth that manipulates, not the truth that would convince someone I'm better than I am. But the truth, the ugly, pimply, fat truth? What is that sister?"

When I delivered my excuse to her I thought, "It's the truth, she can't blame me." But she did anyway. She was right and I knew it. And I respected her for holding me accountable.

I have come to hate excuses, and when I hear them from people, including myself, I cringe. I can see in the other person's eyes, "don't hold me to it, don't blame me."

I've made excuses for myself for not exercising, for not cooking nice family meals, for making huge life decisions without huge life thought. I've blamed the pharmacies and incompetent staff, the hospital for not refilling medications on time. I've used exhaustion as an excuse, and it's worked. No one tells me I'm a bad mother for heating up a frozen quiche for the Frog, or called me fatty lately for not using those running shoes I bought four years ago. Remember those? I don't.

And I say, "But I am exhausted, but I haven't had the time, the energy, etc." And it is true. But...but...but...I'm making time to write this. I make time to read at night, to go to the movies with my girlfriends, to check Facebook. How many pushups or situps could I do instead of reading trashy celeb gossip online? I could spend my Sundays making meals for the week. I could get up at 5:30am and jog. But I don't.

I should plan for the incompetent staff at the pharmacies and hospital and order refills two weeks before we need them. Because excuses don't matter to Froggy. Her meds matter. Her mother having energy and eating right matters. I'm her advocate. I don't believe my own excuses anymore. And I'm not believing anyone else's either. I've become a friend and enemy. I don't need them, or believe them.

I could say, "I was young, I didn't know any better." I didn't ask, "Will this person take care of me, be there in the trenches?" I didn't think about trenches. I thought about a wedding dress. I naively thought love was enough. I didn't foresee CF, being poor, my major support system living 2000 miles away.

Today I thought about our honeymoon and what an incredible time we had in France and Spain. I started to make excuses, started to dream about that life with croissants and espresso, museums and farmers markets. But everyone is happy on their honeymoon. There are no problems when life is far away. And problems are the problem. I've learned that how people deal with problems is what matters. More than love, more than inspiration and charm, more than creativity and romance. Life is hard, and if it isn't now, it will be at some point. And charm won't get you out of Cystic Fibrosis, won't pay the bills or comfort you when you read that a 13 year old girl died of this terrible disease.

When Froggy was diagnosed and we were in the hospital for three weeks, not everyone showed up for FD and me. It was a long three weeks and the respite from friends and family was the equivalent of food. I needed it to survive. A friend of a friend, someone I hardly knew visited three times. She brought me lotion and bath oils, slippers, and a stuffed animal for Froggy. My friend Bev came and sang "You are my sunshine." People came with groceries and books. We received a hundred emails of support. It wasn't just about love. It was about not making excuses. Not saying the traffic to Hollywood sucks, or I'd love to come, but..." Because when your kid is sick, BUT is pointless. BUT only works on honeymoons and Hollywood.

Maybe I'm a tough cookie. Maybe I want the impossible. But if you know me, you know I will show up. I will be your friend and make the calls, do the research, bury the dead body and cover the evidence. If I love you, there are no excuses. I'm there. And I've finally realized after much heartache and major life thought, that I need that too. I deserve someone without a million excuses. I'm deaf to why nots. I don't need or believe that anymore.

When Froggy gets older and says to me, "Why do I have to do my treatments, when none of my friends have to? Why should I do my homework when I have to spend so much time in my vest," I hope I have the courage to say, "Because I believe you can do it, and won't accept less."
I think there comes a point in everyone's life where you become accountable. And you either show up with your water bucket and say, "where's the fire?" or you say, "I thought the fire was next Tuesday."

I may not make a fabulous meal, or be a size 4 anymore, but I'm willing to do the work. Through major self-reflection, life experience and hard work, I've decided to be the person who makes it happen. I am no where near perfect, no where near where I aspire to be, but...but...but...I'm not making any excuses.

Thursday, October 15, 2009

If you haven't had a good cry in a while, find a box of tissues, turn on your volume and watch this video.

After watching the video, be sure to click below to listen to the complete song.

And as always if you feel so compelled to make another donation to CF research, to find a cure so Froggy and her froggy friends can live a long, healthy life, click HERE to donate.

Tuesday, October 13, 2009

RIP Poop Rock

Froggy's fish Pooprock took that big belly float to fishy heaven today.

Tonight, FD is going to come over and we'll have a little memorial and bury him in the courtyard. So far, Froggy is taking it well. She said she likes the other fish better anyway. Well, that's grieving for a four-year-old.

FM: Why did you name your fish"Pooprock?"

Froggy: Because he poops. Uh, I just made up a name for him because he didn't have a name when we bought him. So I gave him a name.

Pooprock, we will miss you.

Friday, October 09, 2009

Another wonderful poem

I'm pretty numb, but finding comfort in the words of others. This poem by Sonia Gernes is lovely.


for my parent's fiftieth anniversary

In the old photographs, it is always autumn.
Colors fade to the sepia of remembered thought:
my mother in a flapper dress, my father
proud beside the Model A. They glow
in the light of dreams that I can never know.

What did they think of that autumn
they climbed into the photograph of bride & groom?
That love would conquer?—the Depression yield
more than its tart and scanty fruit?
In a season of scarceness, the bitter root

of her father's death fresh within the house,
they strode from the church believing
in sunlight—the prairie ringing for them,
the October trees all aflame with praise.
Good farmers, they knew how to raise

the future, a steady hand on each day's plow,
patience in the fallow fields, a table
big enough for all who'd need it, hope
in the seedlings, beauty's grace, a faith
that is the opposite of winter's death.

This autumn, I would take the color
of that triumph, the bright praise of trees.
the harvest secure in the heart's high bins;
I would make of them a portrait fit to hold
through time: these trees, these lives, this gold.

Friday, October 02, 2009

A fabulous poem I didn't write

Amor Fati
Katha Pollitt

Everywhere I look I see my fate.
In the subway. In a stone.
On the curb where people wait for the bus in the rain.
In a cloud. In a glass of wine.

When I go for a walk in the park it's a sycamore leaf.
At the office, a dull pencil.
In the window of Woolworth's my fate looks back at me
through the shrewd eyes of a dusty parakeet.

Scrap of newspaper, dime in a handful of change,
down what busy street do you hurry this morning,
an overcoat among overcoats,

with a train to catch, a datebook full of appointments?
If I called you by my name would you turn around
or vanish round the corner,
leaving a faint odor of orange-flower water,
tobacco, twilight, snow?

"Amor Fati" by Katha Pollitt from The Mind-Body Problem. © Random House, 2009.

Thursday, October 01, 2009

Back to basics

It's been two weeks.

I'm physically exhausted and my night-owl existence has taken a major blow. Those hours of writing, reading, cleaning til the wee hours of the morning are no more. I hit the sheets around 9 or 10 these days and awake with the Frog at the crack of dawn. We are adjusting --meds, treatments, preschool, cleaning, dogs, cats, pharmacies, parks, walks, laundry. FD has been consistently here --taking Froggy for the day, being a good Daddy.

Physical exhaustion is nothing compared to emotional exhaustion, and because of that fact, a great weight has been lifted. I've been trying for so long to push a square peg through a round hole and finally realized that I'm a crazy person for thinking I had the power to change the shape of things.

I'm a pretty low maintenance person. I need love, someone to hug me when the world is too much, do some dishes now and then, and be there in the present, facing life head-on. I've never needed fancy -- happy with a Motel 6 vacation, old jeans and a good hike. In some ways I've requested too little, set the bar so low, that now even the basics seem extravagant. And maybe in a 'normal' situation, that would have been good enough. Maybe I could have trudged through life without needing reciprocal support. But this life is too much for me. As wonderful as my friends are, I need a partner.

This separation is a good thing. It is either the beginning of a new life, or the ending of an old one. At this point I have no idea. For now we are in a content limbo where Froggy is loved and anything is possible. I have hope, not in the belief that things will magically resolve themselves, but with hard work and devotion we can fight for our family. I wish I could write the ending, wish I had the power to predict the future. But I don't.

Tonight Froggy is spending the night with her Daddy at her Aunt's house and it's tough facing the quiet. I will go to sleep tonight for the first time without my Froggy. What a strange world this is.