Letter to my daughter, 10/14/10

Dearest,

If God had come to me a year before you were born and asked me to design the exact daughter I wanted – that your mother and I wanted – I would have worked on your design day and night. Every waking hour spent thinking of every detail, your hair color, your eyes, the way you speak, your voice, your personality, and anything I could think of that would make you perfect. Would you know how to play every musical instrument, speak every language? Would you be tall, short, medium height? There would be details of details to consider.

And I can tell you this. Had I spent that year dreaming up the ideal daughter, the daughter your mother and I are so lucky to have, I would have missed the mark completely compared to the perfection of the daughter we received. Even if I had spent a lifetime in a cave working every moment of the day, I would never have come close to the marvelous person you are. I would have failed and been so happy that I did. (I’m happy I was not given the task to begin with.)

You are perfectly imperfect and a once in a lifetime combination of spirit and intelligence and Tabasco sauce. And you are brave. You have handled my hospital stays with courage and grace. I know you will continue to do so no matter what happens, and that you understand your search for happiness and love and humor trumps anything bad life might deliver. Tell life what you want it to be – command it like it’s your Labrador. Be patient, kind, and give clear instructions. It will retrieve everything you need when you need it. Trust me. It will.

I love you.

Letter to my daughter 09/14/10

Dear Daughter of the Future,

You’re a big 3rd grader now. Where did those eight years go? In another eight you’ll be operating a motor vehicle on the streets of Los Angeles, which scares me considering the idiots who drive here (wait till the first rain falls and watch the automotive equivalent of a “slip and slide” play out in front of you). I need to buy you a vehicle covered in spikes, a porcupine of a car, guaranteed to keep other vehicles at bay. Perhaps, I could get you a matching jumper to wear?

You’ve become quite the funny prankster and your personality reveals itself more each day. I’m concerned that I might be rubbing off on you and I hope you follow your mother’s path in life. She is kind and loving and smells good. What are the antonyms for those words? That’s me. You’re in good, lotioned hands with your mom. Be like her.

I have noticed something interesting about you – you are a missile. Yes, a missile on a course all its own. We have little control over you. Yep, you blasted off and we’re sitting on the deck eating popcorn watching you fly through the sky, missing planes and birds by inches. At best, we can hope to nudge you in a slightly different direction, help you avoid tall, unforgiving skyscrapers in your path. Like any parent, I wish I could download all of the mistakes I’ve made and you’d have a roadmap. But your “missileness” won’t allow that, will it?  The good news is you’re much smarter than I. But so is everyone else. Lukewarm news might be more accurate.

Here’s one thing I cannot tell you right now – the amount of 3rd grade homework sucks. I have to be a parent and go with the program for the sake of your future, but holy moly they give you a lot to do after school. I feel bad almost to the point that I want to do it for you. I could knock off those math sheets for you pretty quick. Sorry, not allowed. Against the rules. However, when you read this one day, yes, I agree, it’s a lot. Not only that, is math really necessary anymore? Shouldn’t they have classes like “Repairing the damage the generations ahead of us did to the planet” and “101 ways to cook with leftover plastic”?

Once again, my apologies for messing up your blog. Your mother will have some serious censoring to do (sorry, honey. What did you expect?).

Love to you and your mom.  xoxoxoxox

Frack Off

I worry about the Earth my daughter will inherit and its condition when she does. Our oceans are filling with plastic debris; many of our streams flow with poison in them; the planet is getting warmer; and we’ve almost reached peak oil production. And now, thanks to a new film by Josh Fox, I’ve learned that many underground water supplies and watersheds contain poisonous chemicals from a drilling and chemical process called Hydraulic Fracturing, or fracking.

Have you ever seen someone light tap water on fire? I hadn’t until I watched the film. It’s funny at first until you realize the water is poisoned and can’t be used. Then it’s not so funny. And it’s all in the search of clean energy – clean gas energy. The irony of this search for clean energy is that it depends on polluting techniques to unearth it.

(Would you like to see water catch on fire? Play the video below.)

The gas companies inject various chemicals into the ground to fracture the Earth’s crust and release the gas, where it’s captured by wells on the surface. Unfortunately, the majority of the chemicals they inject are dangerous to humans, not biodegradable, and poison water supplies – and the air above thanks to the venting of the wells.

It’s one of the best documentaries I’ve ever watched – simple, to the point, and revealing. Its sub-themes reminded me again of the power certain companies wield over our elected officials. Somehow our government continues to make decisions that are good for companies and bad for our well-being. This hypocrisy is very clear in the film, and makes me feel hopeless about our government’s ability to protect our interests and health.

Here is the link to the web site. Click on “drilling areas” to see how extensive fracking is in the USA: http://www.gaslandthemovie.com/

Here is the link to the HBO site if you’d like to watch Gaslandhttp://www.hbo.com/documentaries/gasland/index.html

Stay well.

Letter To My Daughter – 7/11/10

Here is the actual auction picture.

Dearest,

I’m embarrassed to write that last year, while in the hospital, I watched a Barbra Streisand auction live on the Internet. I feel icky admitting it, and blame manapause and the fact they were selling old pine furniture, all too expensive for me. But something about owning one of them sounded cool, as it came with a good story.

When asked why she was selling so many prized possessions, B.S. said it was because our possession of objects is temporary. She was speeding up the process for charity. Not a mind-blowing thought, but simple, interesting and true.

So, honey, listen closely, and I speak from experience: Don’t fall in love with objects (or boys until you’re 30, which I know won’t be possible, but I can hope).

I think of all the stuff I’ve bought in my lifetime – the shirt I couldn’t live without or the expensive sneakers I had to have that eventually went in the trash or to charity. I could make a list that would unroll like a Greek scroll the length of a football field.

I have spent money and energy on garbage that provided a short-lived Red Bull jolt of happiness. Worse than that, I’ve wasted emotions and experienced anxiety on stuff I couldn’t afford but thought I had to have.

The next time you buy anything, close your eyes and picture the lifespan of that object from the moment you purchase it to its end. Are you going to use it for a long time? Will it end up hidden in a closet in two months and given to Goodwill in two years? Is there a way to buy it used, like the furniture we’ve found on craigslist?  (If you really want to see how items lose their value, look on craigslist, honey. It’s amazing and depressing what we spend our dough on and how much we pay for it.)

If you feel that your happiness depends on that object and you’ll absolutely die if you don’t get it, then walk away. Run away. It’s a losing proposition and it will never live up the hype you’ve given it. Take your time and reevaluate.

All of this stuff becomes baggage and a ball and chain. You have worry about it, lock it up at night, put an alarm on it. It gets scratched or damaged or breaks when your 8-year-old daughter drops it (sorry, you’ve been pretty good at breaking a lot of stuff over the years, especially Christmas ornaments). So, if it’s fragile, you’re going to have to worry about it twice as much.

storyofstuff.com

Know the true cost of an item. We watched Story of Stuff together. Watch it again. Cheap items from other countries aren’t cheap. They come with a long-term cost to world pollution that we don’t quite understand yet, but your generation will.

Know what is truly important in life. I wish I had had a parent to share some wisdom on this subject. It’s your family and friends that matter the most, not objects, unless of course they’re statues of me (couldn’t resist that one. Perhaps a small shrine. Joking. No shrines. How about a Play-Doh bust of me mounted on a pike in front of the house? Hmm, too gory.)

You’re on the clock. Your time is limited. Don’t worry about owning stuff. As they say, it ends up owning you. Make sure whatever you spend your money on will truly deliver happiness for the long term.  Otherwise, it’s not worth the price.

Remember, you had as much fun playing with a giant cardboard box as you did with that pricey collection of Webkinz animals. Find the boxes and save for a rainy day. Please.

Love to you and your mom.

“Oh while I live, to be the ruler of life, not a slave, to meet life as a powerful conqueror, and nothing exterior to me will ever take command of me.”

Whitman, Walt

Sweet and Sour Gummi Worms

If I were an M&M . . .

We haven’t told our daughter about cystic fibrosis yet.

She visits me in the hospital, and will many times in the future. She sees me doing daily treatments, and is here when the agency nurse draws blood while I’m on home I.V.’s But we haven’t given any of this an identity yet.

We treat my CF like a business, or business as usual, with no emotions when I leave for the hospital. It’s a way of life and is like me going on a trip – one she can join on weekends.

I can’t say if what we’ve done is right or wrong – it’s how we’ve handled it. And it seems to work for us. Our daughter loves life, thinks completely about herself and her world and how many treats she’s going to get and how much Wii time she’ll have and just how much fun she can have in a day. That is what I call completely normal behavior for a happy 8-year-old.

I must have the brain of an 8-year-old because I think the same way – when can I have my M&Ms today?

If we gave the battle a name it might zap her buzz. And one day we may have to zap that buzz, but why do it any sooner than we have to?

That’s not to say we’re doing the right thing by hiding it. We each do what’s best for us. We just never mentioned it and are hoping we can prolong it as long as possible. We may, one day, wish we had introduced it earlier, having backed ourselves into a corner. We’ll see.

My wife and I don’t really talk about CF a lot anyway, except for the bills it generates. We try to ignore it, hoping, perhaps, it will get bored and go away. How much broccoli do I have to eat to make that happen?

But my daughter is starting to become aware of my limitations or lack of wind power.

We were scootering up a moderate hill yesterday. My wife, the aerobic animal that she is, shot to the top, while my daughter hung back. I thought it was odd the little scooter maniac stayed behind, as she doesn’t like anyone to ride ahead of her, inheriting her competitive streak from me.

“Why aren’t you up with your mother?” I asked.

“I’m waiting for you. Can you make it up the hill, Daddy?” she asked, in a gentle and loving voice.

Available at the Sweet Factory

Earlier in the evening my wife and I were talking about going to a concert at the Hollywood Bowl and I remembered the big hill you have to climb, which might cause hemoptysis. Little Miss Elephant Ears must have overheard part of the conversation.

So, it was sweet that she showed concern for me in the sincere way only kids can do. But it was sour at the same time that CF created her concern for me.

 

I’m lucky. I’m lucky. I know. I do know.

But some days CF tastes like a sweet and sour gummi worm – with its brief sweet taste and sour punch – Doctor says: “Your heart is in pretty good shape considering CF” – sweet. “There is, however, mild pulmonary hypertension” – sour.

To which I reply: &$% you, cystic fibrosis, &%(* you, you piece of *$^#. Then I feel better. Much better.

Stay well.

http://www.sweetfactory.com/Candy-nbsp-nbsp-Gummy/Sweet-and-Sour-Gummi-Worms-1-LB-/prod_1212.html

Letter To My Daughter – 6/23/10

[Part two of a two-post blog. Here’s part one: https://unknowncystic.wordpress.com/2010/06/22/switzerland-crumbles-neutral-no-longer/]

Dearest Daughter of the future,

If the moon falls from the sky and pulverizes me, or Fox’s girlfriend accidentally mixes radiator fluid in the punch again, or CF takes its final swipe at me, probably on an airplane, please ask Mom to open the file on the computer named “blog post 062210.”

Please read it with her to make sure you do not live your life with a hole in it because I’m gone. I’ll be ticked if you do. I’m not telling you that you can’t be sad. You can. Just don’t let it go on too long. You have my complete blessing to have fun, enjoy life, be happy with what you have, and not be sad for what you don’t.

You have a life to live and a family who loves you. And, one day, you’ll have a mate who will wait on you hand and foot like you’re a queen, just like we, your parents, did when you were growing up.

There is one more very important point I want you to know: Thanks to you being here, existing, I lived a longer and happier life. And you helped me kick CF hard, right where it counts. That is a fact.

From the minute you were born, which finally happened because I made your mother eat PF Chang’s hot mustard that forced you out of your comfy womb house, I had new energy to do my treatments. I became obsessed with taking care of myself because I wanted to make sure I stayed around to see as much of the movie that is your life.

I blew into the flutter like a mad man, up to an hour at a time. My health insurance paid for a vest that I used every day. I never missed a treatment. I ate pounds of broccoli and cabbage every week. I looked for every advantage I could to outfox CF.

I owe my bonus time to you.

Every day I lived with you and your mother was a dream. I’m not sure your mother will say the same thing because sometimes she failed to see just how charming and funny I was every day. But you know the truth, I was.

Remember, always wear your helmet, honey.

I want to leave you with one last memory tonight that I never want you to forget: the times we rode our scooters around the hospital grounds, especially down the parking-garage floors like we were breaking the law, thinking the security guards would catch us at any moment. And the time you did a flying face plant when you thought you could ride through mud. PICC line in my arm, bacteria in my lungs – none of it mattered on those scooters. We had a blast.

You helped me give the middle finger to CF and the “thumbs up” to life.

For that alone, I will always be grateful to you. The rest was icing.

Take care of Mom.

Love,

Daddy

xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxox

Switzerland Crumbles – Neutral No Longer

[This is part one of a two-part blog posting]

Take a side, you crazy country

I so enjoyed my vacation in Switzerland . . .

A blogger’s recent post has upset me. And I’m not sure why I’m so upset because the blog’s author is someone I respect and who has really given back to the CF community with her brains, opinion, and drive to help others. I’ve read her comments over the years at cysticfibrosis.com. I’m a fan.

And yet, the following post got me heated.

http://noexcusesnoexcuses.blogspot.com/2010/06/families-with-missing-piece.html

A week later the post festers in my mind and won’t go away.

Here’s what bothers me: It feels like the title should really be – If you have CF, don’t have kids because you’ll cause them pain when you die. That’s the hidden message the commentary and the included WSJ article deliver to me. I’m not sure if that was the author’s intent, but it’s my interpretation of her words.

So, let me be clear with my position so there is no gray area: If you have CF and want children, and are able, have them. It’s your decision. That’s as “in a nutshell” and clear as I can be.

I’ll take any heat coming my way for the statement.

My brain for the last week

The blogger writes in the last line: “the focus on the decision needs to be all about the child.” It’s such a confounding statement. My wife and I had a child for ourselves, too, not just the child. I wanted a child so if something happens to me, my wife isn’t alone, though I’ve never shared that with my wife.

But we also had a child because we wanted to have fun and enjoy life as parents. And we put great care into the decision to ensure she will be raised well and by family if something happens to us.

In the scope of life and the unique make-up of families in today’s society, how different is the decision for CF parents to have kids? Should we have to contemplate worst-case scenarios any more than others? What about best-case scenarios?

There are more drugs on the way for CFers than at any time in the history of this disease. The care is the best it’s ever been.

What if someone decides not to have children after reading the post and then lives to 70? Regret like that tastes terrible.

The odds yesterday are not the odds tomorrow. Life changes. Hope arrives.

That’s not to say CF parents shouldn’t think about their situation. Anyone considering having kids should.

I can think of a whole lot of people without health issues who should rethink having kids if you look at potential risks to the child. And that population is larger by far than CF parents wanting to enjoy life while suffering from one of the worst diseases known to humankind. Or, should only a select few who have perfect, ideal lives have kids? How many parents would have kids if that were the case?

The WSJ article bothers me, too. It begins with a hypothetical question: “Would you give up a year of your life to have one more day with your late mother or father?” Hypothetical questions are the easiest to answer. Yet, only 57% answered yes to a softball of a question. Thankfully, 43% saw that the price was too high – one year for one day.

What if the choice had been real? How many would have really made the swap?

There’s a certain paradox to the situation discussed. Would the children who have lost parents decide not to be born? If the parents knew there was a chance they would die, would they have not had the children and would the children be okay with never existing? See, it gets confusing for me.

Life is painful. Who’s to say some of these kids wouldn’t have had the same problems with two parents. And who is to say once they weather the storm of losing a parent, their lives won’t eventually be fantastic. Why not ask them hypothetically if they’re rather not be alive if given the choice?

I’m grateful the blogger wrote the post. My heat has transformed to thankfulness. I will be more prepared to discuss this subject with my wife and educate her with what might happen to our daughter when I’m gone. And I can tell you that had I read the post before having our child, I would have chosen our same path without hesitation. The eight years my wife and I have spent with our daughter have been the best of our lives.

At this point, our Wii-playing, book-reading, Smarties-eating daughter would agree that being here, alive, is a great joy. I doubt she’d want us to go back in time and change our decision. And if something happens to me, she may suffer. But there is also the chance that like a Phoenix rising from the sorrow, she may channel that emotion into something great, whether it’s her love for her family and friends, or playing a wicked guitar to an audience at the Hollywood Bowl.

As long as she’s happy, I’m okay with anything she does.

To be continued . . .

Letter for My Daughter – 06/03/10

Dearest Daughter of the future,

This post goes down as my most frustrating to date. Argh. I’ve been struggling with it, wrestling it, for weeks. But I feel better when I write “argh,” which I’ve done twice now.

Let’s move on.

I apologize for being a failure. Or, at least for not living up to my full potential.

Everything was there for the taking. All in front of me, a buffet of opportunity, waiting to be placed on my plate next to the mashed potatoes of good fortune. The books, school, a different path, and I took the one most traveled – the easiest one, well worn by others lacking direction. I’m been in recovery mode every since.

Was I really the person who got involved with those people? The ones who lied and made bad choices.? I was. Yes. That was I.

I ventured out on my own at 18, CF warping my mind, and no guidance to help me mash down my own path in the grass. It’s no excuse. My intention isn’t to be cryptic. It’s hard to relive my mistakes. I don’t recognize myself in my past actions. How could I have shown such poor judgement and done so many stupid things? Argh.

I told you that’s it okay to make mistakes – that’s how we learn. The key is not to make the same mistake twice. I have an asterisk next to that advice now.

Call the dogs, they'll clean it up.

There are mistakes you can’t make in life. They are mistakes of great importance with irreversible consequences. When you’re 16, 17, 18, your brain will feel as mature as you think it will ever get. Wrong. Remember that. You’re wrong. That’s not going to happen until you’re around 25, or in my case, never.

What’s really ironic is how I was fearful of making mistakes that could have had a huge upside or reward in life and fearless when it came to actions with huge downsides. So, when your friends ask you to go smoke something behind the gym, know that it is a mistake you’ll have to live with forever. For f’ing ever and a day. Avoid it.

My message today: take risks, make mistakes, but keep an eye on the up and downsides. There is potential embarrassment, and there is what keeps you from achieving everything you’ll want later in life. I chose the latter when I should have chosen the former. Embarrassment may make you feel like dying at the moment, but it is fleeting and makes for funny blog posts for your kids. The other stuff will haunt you for life.

Choose your friends like you once chose your Pokemon – pick the good ones. And don’t follow bad ones into dark places. You’ll spend your life clawing your way out. And worst of all, you’ll never forget your time there.

With love. Take care of your mother. No one loves you more.

Why I love My Wife and Being Married

[Apologies for last night’s post by Fox. He’s officially banned from posting again. I do not condone running over small animals for food. Let Fox buy the butchered animals at the grocery store like the rest of us.]

I realized that I have not written anything about my wife yet. I haven’t told her about this blog either. Lucy, I have some explaining to do.

Not sure what she was thinking almost 25 years ago when she started dating me. I am a day at the beach, but that day is stormy and cold and the beach is covered in broken sea shells.

Your prize is Unknown

I definitely won the love-lottery jackpot with her. She won the two-dollar scratcher ticket – the one you don’t cash in because it’s only two bucks. The CF stuff she’s had to put up with over the years – yikes. I can say she is 100 times braver and stronger than I.

One night, she stepped on a piece of glass in the garage. Blood was pouring out of her foot, Monty-Python style. She asked if I thought she had to go to the hospital. I couldn’t stop dry heaving looking at it. Yes, you’re going to the E.R., tough gal. Start hopping to the car.

Here are some reasons I love being married to my wife.

Where are my police lights?

I work for the Geek Squad. She has a Master’s degree, but anything electronic that doesn’t work comes to me. “Camera no work. Fix please,” she says like a cave girl who just discovered a broken rock. “What does ‘your computer is infected’ mean?” It’s all very cute, but I want benefits with my job and one of those cool Geek Squad VWs.

Favorite food of Nanos

She brings home the bacon. I hate grocery shopping more than bad respiratory therapists. I don’t like the crowds or germs. I buy stuff I don’t need. And, GPS navigation is needed to find food thanks to the cryptic “hints” over the aisles. I feel like I’m playing Myst II – the clues make no sense. It also reminds me of when I was single and I thought I could meet women there – I’m zero out of 53 on that one. My line, “I’m cookoo for your Coco Puffs” never really worked. Not sure why. I thought it was funny.

How much will it cost?

Confessions of projects gone well. Two years after I finish a home repair, I get some admission that it’s really nice. Two years to get that approval. It must have to make its way through certain DMV departments in her brain before it gets to her lips. “Why do we need a window over the bed?” she asked. Two years later she said: “I love leaving the window open at night and the fresh air.” What? What was that? Did you just admit it was money well spent? Come back here, you. Come back here. Don’t run away.

I love her muffins

The Muffin Inquisition. No, my recent tweets about my wife’s muffins did not contain double entendres. My daughter ate six of them while my wife was out running. Then, when she returned, I was interrogated as to how I could let that happen. My reply: Do I look like the muffin police? Strike one. “Why didn’t you put them away before you ran?” I asked. Strike two. “Will six muffins really hurt her?” Strike three. Mr. Clueless, you’re off to the jewelry store to buy something shiny.

A comedy and language god

George Carlin would be proud. If I do something “uncouth” then I am disgusting and have a bad habit. If she does something we don’t mention it, pretend it didn’t happen, or laugh that our yellow lab did it. When the lab does let one rip, I get blamed. We also use different terms – I fart; she “spoodles.” That sounds cuter, like Spoodles the Toxic Clown popped out and started shooting flowers in the air. Mine require a Hazmat team. Hers smell like Glade lemon-mango-guava morning mist gum drops dipped in lavender. You say tomato, I say rotten tomato.

I better stop digging my future hole at this point. Know that I’m the luckiest man in the world. And those who take a chance on those of us with cystic fibrosis have a strength of character no writer will ever capture with words.

Stay well.

________________________________________________________________________________________

Letter to my daughter – 5/21/10

My dad wears a bag over his head. What does your dad do?

I’m frustrated with this blog today.  Perhaps, I should say lately. And, I’m not sure why. It’s just bothering me. If it were a piece of paper, I’d burn it.

CF may be talking this week. I don’t feel so hot. As my mood goes, so goes my blogging. But I think it’s more than that.

I guess when you try anything new, it will always take an unpredictable path. I’m not sure what I expected other than a place to leave a record for you when you’re older. You’ll be able to say to your friends, “see, this is why I’m so screwed up. Look at the nut job I had for a dad. I’m swimming against the genetic tide here, people.”

I agree with that. I’m not sure how many other dads are sitting around sucking a nebulizer bong everyday. I guess one could look at it that way. Though I read a lot of stories about special people coming from challenging situations. And I wonder how having a dad who spends a lot of time in the hospital will shape you. I’m not sure it’s a bad thing, though you may disagree. It may be a character builder. Or not. You could just spend your life whining like I did.

But something tells me that you’ll avoid that path. That’s my gut. You’re smarter. You’re stronger. Though, I do feel sorry for your future mate, as clearly you’ll be the boss and get your way. Good for you.

Back to the blog. I think the stat meter is bothering me. When I first started the blog, no one read what I wrote. It was nice. I could write anything. It didn’t matter. Now I have a few good people I care about tuning in. When I sit down to write, I’m thinking more about what others may want to read. I feel like I have to keep that stat meter high. I can see what posts are popular; I like the comments. I feel like I’m editing a lot of posts that I’d normally publish but censor now because I’m not sure the blog audience would like them. Or, in most cases, they’d be horrified.

What to do?  That is the question I am asking tonight. I can’t answer it yet. I do think I need to make sure my goals are clear as to why I’m doing this. That will help. I can say that this blog is not really for you as much as I thought. It’s for me, too. Now I just need to decide what I want. I feel a shift coming on. It will be interesting to see what that is.

__________________________________________________________________________________