Letter to my daughter, 03/22/11

Dearest Daughter,

We’ve spent two days together while Mommy is away on business. Thanks for making my life easy, so far. But there’s always tomorrow to change course and wake up in a foul mood and fuss about putting your shoes on. We’re not home free yet.

I do, my wonderful daughter, need to share an observation with you I noticed this week: You’re Fox’s child, not mine. Yes – you are.

This became very clear to me the first morning when I had an epiphany and saw your fox tail showing.

Here’s how I knew: How many years has Mommy brought you a heated blanket in the morning, carried you to breakfast, and sat you on her lap feeding you?

Hmm, I wonder?

Then, when she’s away for a few days, and I’m here, you manage to get up without an alarm clock, put together your own breakfast, eat it in record speed, and have 30 minutes to get dressed and ask if you can play Pokemon.

And no blanket or sleepy-head look? Very interesting indeed.

You see, I now know your secret – you bamboozled your mother! All these years and you kept the act up. Well done, my child. Well played, young lady. Well. Played.

I will keep your wicked little secret when Mommy gets back, and let you have your pack-mule moment of being carried to the table. It makes your mother happy, though she’s having a hard time carrying you now. How old will you be when you exceed the maximum weight limit for that ride? I’m sure it will be sad for all of us.

From this point forward, each time I see her lugging you like a heavy bag of groceries, I’m going to have a huge smile on my face watching you, Baby Fox. Yes, you.

Enjoy your trick, honey, because before you know it, you’ll be carrying your own daughter to breakfast wondering when she got so heavy, and wasn’t she just a baby a few days ago, and where did the time go?

Where did it go?

And you’ll remember, at that very moment, what I once told you in a blog post – you blinked.

With all my love,

Daddy

Raindrops on Roses, Crushes and Bromances

Today started off in a dark place and improved until I coughed up blood streaks tonight. Add that to the back pain I’ve had for the past four days and I feel like I’m playing the game where you place your forehead on a baseball bat, spin around it, and then run to first base. How did I end up in the stadium parking lot?

Photo by Angela Sevin, Creative Commons

This is my mind on CF

My “monkey mind” is lighting up like a fireworks factory fire. Will I be in the hospital tomorrow for the bleeding? What if my kidneys are damaged? I can’t get comfortable. Am I peeing too much or too little? I can’t concentrate on work. WebMD says I have a rare form of kidney Ebola.

I gave urine and blood at Quest Diagnostics (QD) yesterday. I fucking hate Quest Diagnostics.

First, the waiting room is full of sick people who want to kill me (always bring your own pen to sign in with or you will catch Ebola).

Second, the QD workers always ask me: “Why the mask?” Because I have a highly contagious disease that made my ass expand to the size of a beach ball. They used a 14-inch railroad spike to pop it. Hurt like hell. Oh, and what a mess. However, I will take this mask off if you kiss me while I pee in this cup?

Third, QD bills are the gift that keeps on giving for months to come. Thanks to them I had a collection agency harassing me over a $120 invoice I’d never received. QD representative on the phone: Oops, we’re so sorry. Computer error. We’ll tell the agency to remove the medieval catapult parked in front of your house.

I’m in the outfield again. Oh, yeah, Crushes and Bromances.

I was thinking tonight about a few of my blogging and Twitter friends and how much I dig them. I admit the following: I have crushes on my female readers. And a bromance or two – don’t want the guys to feel left out. But, dudes, eat your hearts out – I have some highly intelligent women reading and commenting. How did that happen? Clearly, the bag on my head makes me better looking, as I was told it would in high school – yes, the bullies were right. Thanks guys, I thought you were just screwing with me.

So when does the “Women of CF: Mensa Edition” calendar hit stores? I am so ready to buy it. Sign me up. And I want each month autographed: To Unknown, [(I +U ) 2011] x CH3CH2OH + HLT = CF-3 ft x ∞

Strange, I never anticipated blogging would have this benefit. I do confess it’s hard to be on my best behavior in comments and email.  Sometimes, I’m biting my knuckles with Fox telling me: “Write it. Write it. She’ll take it as a compliment. Oh, you wimp.” Rule #2 in the Book of the Unknown: Never listen to Fox.

The Story of the Manure Salesman

One day an unknown manure salesman hurried to load his camel. Shovelsful of manure were thrown up and into a large wood crate strapped to the camel until it became a heaping pile and the camel’s legs shook from the weight. At that point, the salesman threw handfuls of hay onto the load to keep it together, and to knock down the smell, as if that were possible.

A woman watched from the shadow of a doorway.

Sweating from his labor, the man stood back and looked at the camel – loaded and ready to go. Glancing at the ground, he picked up one more long stray piece of straw and tossed it on the load. In the time it takes a summer breeze to appear, the camel collapsed and died, crushed by the weight of the manure, which spilled into the street and onto the salesman.

He stood there stunned and speechless, covered, stinking, his hands not wanting to touch his soiled clothing. Tears filled his eyes from the loss or the smell.

“That was unfortunate,” the wise woman said, stepping carefully to avoid the mess as she approached.

“It was the fault of this one straw,” the man said, as he plucked a sample from his shirt and held it up for her to see. “It only took this cursed piece of hay to kill my animal. If not for this single straw, I would still have my livelihood and load.”

“It’s never the fault of a single straw.”

“It isn’t?”

“All of that manure weighed a ton. You were an idiot for loading too much on your camel – to the point it only took one straw to tip the scales toward disaster. But it was the total load, not the single straw, that killed your animal.”

The man gave this some thought, his facial expressions mirroring the realization of the truth and his responsibility. Then his face became calm, his body relaxed, and he pulled out a gun and shot himself in the heart while the wise woman watched.

She stood there for a minute, calm, quiet, studying the scene in front of her. The man, the camel, and the fertilizer, all linked together. Her hand raised up to her face, slowly wiping away a drop of blood, but no lines appeared on her face for anyone to read – if they had noticed her.

People circled around the man and camel, letting their curiosity overcome their sense of smell. A young girl stood next to the wise woman and tried to peek through the cracks of the wall the onlookers formed.

“What happened?” she asked the wise woman.

Looking down into the young green eyes, the woman said: “Always choose your words carefully when speaking to someone who doesn’t have their shit together.” Then she turned and walked the opposite direction of the growing mass.

Having a blog rocks! And so does Josh of Joshland!

If my daughter reads this blog one day, I hope she takes away the lesson that you can only get rewards in life if you take a first step in one direction or another. When I started writing this blog I had no idea it would return the level of support, intelligence, humor and kindness that it has. I’ve been blown away over the past year by the experience, as I thought I would attract two or three people who had read every page on the Internet and were down to mine. Like love, I find it best not to analyze anyone’s reading choice too deeply, lest the magic fade. I’m grateful for my new friends – I’ll leave it at that.

And then there is Josh from Joshland, a kind soul unlike any other who walks the walk of inner strength and positivity; a person who has experienced more than a reasonable amount of heartache in his life with cystic fibrosis and the death of his sister, Angie, from CF. Mere mortals might give up. Not Josh. He colors this world orange with his  crazy pal Moganko* and almost makes me want to believe in the goodness of humanity (almost, which is a future blog post).

So, what does this crazy friend of mine from the land of Vikings go and do? He creates two amazing graphics for me. The banner at the top of the page and the Unknown Graphic below. I opened my email and there they were – gifts for moi. And I like gifts. Yes, I am the luckiest person alive.

My humble thanks to Josh for the thoughtfulness and generosity. The banner will go into rotation immediately and appear randomly, depending on my mental state. Regarding the other graphic, I like admiring my handsome self in it. The resemblance is uncanny. Well done, Friend of Moganko.

Please raise your nebulizers for Josh tonight. Salute.

I rock in my purple shirt. Fox doesn't like the way he looks.

 

*There is some debate whether Moganko created the character Josh or vice versa. It’s a mystery that remains unsolved.

Carry the Load, Crybaby

If I saw a psychiatrist, which I probably should, and he or she asked me what the future looks like, I would answer: It’s heavy. And I’d mean it in the sense that the future weighs a lot, that it has physical mass and I can carry it on my back – like a rock. And with every step I take, the rock gets bigger and heavier, growing from its molten center. At some point, my legs give out and the future crushes me flat, my arms and legs sticking out under its mass like Wile E. Coyote.

So it shouldn’t come as a surprise that when I think of the future, it looks difficult, hard, not appealing, filled with unpleasant events. Who enjoys carrying a giant tumor of a granite on their back? There will be more coughing up blood, more hospitalizations, more of everything CF.

And there will be dying. And there will be crying and emotions by others, though this is debatable and shouldn’t be taken for granted, as I’m not the most lovable of guys. And sadness. And the time my daughter and wife will need to find a way to pull themselves together, which I hope is short (move on, have fun. Enjoy at all the Craigslist furniture I bought you. Live like they do in Coke commercials.)

I confess: I have days when I wish the disease would take me, wipe away not feeling well and the buttery stress. But I’m happy that it hasn’t.

This I do know. The pressure to make sure each minute counts is great, oppressive, and increasing by the day. I can do the math in my head. I’m not going to be here in 50, 40, 30, 20, 10 or who knows how many years. Perhaps days. If I get in another argument with someone with blue hair who sees things that didn’t happen, my end of days may take place in prison.

I am running on fear. My tank is full of it, 91 octane, high-grade. Every day now is a bonus. I look at things more closely, linger on objects and people, the lines in my friends’ faces. We’ve all changed over the years. And I feel like I’ve been through so much, taken my share of beatings from CF and have the scars from each one. And I have more to come. I’ll take them like a man, or a mouse, and see the movie through to the end. I hope the CF Foundation or Sharktank or some drug company finds a way to stomp this disease’s demonic spirit of gut-ripping terror into the earth with the heel of a boot. For the sake of everyone one involved. I hope. And that makes the weight of the rock bearable for one more step. And another. And one more. And.