Category Archives: Love

Letter for My Daughter – 06/03/10

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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

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[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.

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Letter to my daughter – 5/21/10

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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.

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CF, Do You Hear Them?

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[This post is best read with heart-pounding rock n roll playing]

Yum, but every day?

Without my wife, I’d be somewhere in downtown L.A. pushing a shopping cart, I.V. pole secured by a couple of old belts, loyal dog at my side. The Wandering Cystic would be my name and I’d be . . . S-O-L. My daughter, hair “unbrushed” for the last year, would eat creamed corn from a rusty can.

Today, I thank my wife for being a great mother, a partner in fighting cystic fibrosis, and the magician who brushes our daughter’s hair. Love, baby, love.

Let’s not overlook the wife – or girlfriend – and the mother and their importance and bravery in the fight against this menacing disease.

We’re talking about strong women who have answered the call with “There is nothing in life you can burden me with that I cannot handle – Nothing.” They are the hero of the movie who, when knocked to the dirt, gets up again, wipes away the blood, and asks, “Is that it? Is that your best punch?” as they crack their necks and go to town on the villain. And,unlike guys, they clean up the mess when they’re done.

They are inspiration; they are strength; they are the baddest cats on the planet and you’d best not mess with them, CF.

When I stand in the Colosseum staring at the hulking form of cystic fibrosis retreating, thinking I scared it away, it will be no surprise that it’s really afraid of my wife, chainsaw in hand, standing next to me. And next to her a mother in Texas, with a wound that won’t heal, waiting to unload a cannon of hurt; and next to them, mothers with CF and mothers with CF children ready to take a shot. The line is long, my friends. The line is really long.

Your day is coming, cystic fibrosis. Your day is coming. Do you hear them, CF? – these strong women.  They are going make sure your beating comes sooner rather than later. And this time there won’t be anything left to clean up.

Happy Mother’s Day.

xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo

Letter to My Daughter – April, 27 2010

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The Lessons of Blogging

I started this blog for you – I think. It’s not quite what I thought it would be. But that’s not a bad thing.

I had good intentions. However, now it travels in its own direction.  And frankly, I’m not sure what direction that is.

Like a kite ripped from my hands by the wind, it floats away in an unpredictable course – high up there in the blue, its shape almost unrecognizable now.

But I’m enjoying the ride. And learning a lot. Mostly, how strong other people with cystic fibrosis are and how weak I’ve been at times. Perhaps, I always knew this. However, when I coughed up blood last week, I was a little less stressed about it thanks to my new friends.

I don’t know how much longer I’ll keep this up. The realities of CF always seem to overcome me and I go back into hiding and come out with a new identity. We’ll see. It’s strange how you can care about people you’ve never met, but frustrating that you can’t do more to help them.

Be well. Take care of your mother.

Love you both.

_________________________________________________________

Letter to my daughter – 4/11/10

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I know that if I spent the last 47 years staring at the clock, second after second, minute after minute, hour after hour, that each day would have been the same identical measurement of time.  But it didn’t feel that way.

It feels like I took a deep breath when I was 20 and exhaled some time today, or tomorrow or the next day. I wonder where time went and if I used it wisely.  And I know I didn’t.

My number one regret tonight, at this very moment in time, is that I filled my brain with crap and things I wish I hadn’t done.  Only now do I realize that my brain was my receptacle of time with a finite amount of storage.  It can only hold so much in the time that you rent it; I filled it with bad things.  Not all the time.  But more than I would have liked.

I wish I could exchange the junk, such watching episodes of Beverly Hills 90210 and Melrose Place,  for better stuff, like really playing the guitar well. I wish I hadn’t done some of the things I did, especially my actions and words that hurt other people.

That’s what I want to share with you tonight: Be choosy about what you put in your head.

That doesn’t mean you can’t have fun or laugh or put silly things in your mind – they are important, too.  Just be careful of putting too much corn syrup up there. Always ask yourself: Is there something better I could be doing right now that will make me happier later in life.

Think longterm, which is something I could not do. I blamed the CF, but it was just me being weak.  I feel like I’m asking you to sacrifice.  I’m not.  Just be choosy, that’s all.  Be choosy. Your brain records time.  And one day you will play back that time in your head.  And you’ll have to live with everything there. There are no do-overs.

Ronnie and Mandi in the Arizona Desert

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I really enjoy reading about, and watching video of,  Ronnie and Mandi.  I like following their exploits in the Arizona desert, watching them singing rock songs while driving and eating romantic dinners at the hospital, making the best of every moment.

Interestingly, I discovered today that cystic fibrosis has very little to do with why I enjoy the adventures of Ronnie and Mandi.

Yes, cystic fibrosis is a terrible disease that I hate to my core and obviously plays a role in their lives.  However, like a flower that grows alone on a rocky hillside, CF can also defy logic and conditions and blossom a courage of love unlike any other.  And it is love, not cf, that makes Ronnie and his heroine such a compelling story to witness.

Their actions and joy in the face of a mighty wind exemplify what is best about youth and humanity – no matter what life throws at you, being together with the person you love, if only for a moment in time, can overcome the most insidious of enemies.  These two crazy kids embrace the storm and reach out to others, telling them, together we are stronger.

So, today, I sit ignoring my work.  Instead, I take a moment to admire Ronnie and Mandi and every other cf couple who has said “no” to fear and “yes” to the here and now, and who has treated life like a juicy orange and squeezed every breath and drop out of it.  And, I’m grateful for 24 years with my wife.

I thank Ronnie and Mandi for sharing their story.  I wish them a lifetime together and humbly pass on this Springsteen verse, as it has served me well over the years:

We made a promise we swore we’d always remember
No retreat no surrender
Like soldiers in the winter’s night with a vow to defend
No retreat no surrender