Category Archives: cystic fibrosis

Confessions of a Cyster Blog

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A flower seemed appropriate

Tonight, I’m giving a shout out to Stacey Bene and her new blog. It’s great, and I enjoy reading it. Please check it out if you haven’t already done so.

Here’s the link to the blog.

http://confessionscyster.blogspot.com/

Here’s the link to my current favorite post. Love the wit of it despite the circumstances. I’m sending positive vibes to Stacey.

http://confessionscyster.blogspot.com/2010/07/around-and-around-we-go.html

If you’ve been reading my blog in the past month, you may have read my two posts on CFers having kids. Here is Stacey’s touching post on the subject with a closing line I really dig.

http://confessionscyster.blogspot.com/2010/06/these-are-not-my-mistakes.html

Stacey, thank you for sharing your life. I look forward to more of your story and you giving CF a serious ass-kicking.

Rock on.

.

Work Dinner at Benihana

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I hope I can catch the shrimp in my mouth this time

Is there a name for that phobia?

I fear hibachi-style restaurants.

A few years ago, at a fake Benihana in the southern United States, the chef, who was showing off his mad skills with a spatula and shrimp, forever killed my love of sitting in front of a hot flaming grill while eating.

My work pals lied that it was my birthday, laughing as if they were the first group to ever pull this prank. So, I had to sit there sporting a paper idiot-hat while they sang Happy Birthday and toasted me. Happy, happy, joy, joy.

And, as I was the faux birthday boy, the chef had the genius idea to toss me a shrimp to catch in my mouth. Unfortunately, I had missed the memo about it.

When I noticed the grilled shrimp coming at me, I opened my mouth like a SeaWorld dolphin but couldn’t maneuver in time to avoid it hitting me in smack in the eye, which led to everyone laughing their asses off. Oh, funny man, make us laugh, please. Let’s see that again. I didn’t laugh very much when I spent 10 minutes washing the grease out of my eye. Fun times don’t come better than that.

That’s why I hate these ##$*@ places. They bring back bad memories of the “shrimp to the eye” night.

So, last week, when the gang told me the work dinner was at Benihana, I just couldn’t wait to go. Sarcasm alert, if you didn’t get it.

With Benihana being the restaurant choice for the night, someone’s memory flashed on the “shrimp incident.” Then the jokes started rolling my way around noon and continued through dinner. At one point, a pair of safety goggles showed up to protect my eyes from another mad shrimp. Thank you for your thoughtfulness, guys. I’m so lucky.

Light, damn it, light. Oh, screw it. I'm retiring.

Retire before you suck at what you do

At the restaurant, we got the worst teppanyaki chef ever, an ancient bench warmer they called into action when no one proficient at their job could be found. The crusty geezer was counting down the days to the cashing-in of his Benihana 401K and “free fried rice for life” coupon.

This is how much he sucked: He couldn’t flip a shrimp tail into his hat, which is a basic skill they teach you on day one of teppanyaki-chef school. He missed six in a row and gave up. Six? How do you miss six? I could make that shot in six tries. How hard can it be? Evidently, harder than it looks, as was the behind-the-back shot that hit the floor. You’re 0 for 7, loser.

Worst of all, he completely screwed the pooch on my favorite part of the show, the flaming-onion volcano. How do you mess that up? There are only three ingredients: onion, flammable liquid, and a lighter. A six-year-old could torch that baby. Somehow his onion didn’t ignite, much like his passion for the job.

I looked at this cat and wished that CG would get her new lungs soon

Free Drinks on the company

It’s amazing how much some people drink at company functions. It feels like it’s the people who have been in the same position for 30 years and have never moved up. Is it the chicken or the egg? You got drunk at company functions and didn’t get promoted, or you got drunk at company functions because you didn’t get promoted?

One such person, who exceeded his limit, slurred that he was cutting out carbs to reduce calories. When I told him alcohol has more calories per gram than carbs, he mumbled something about not giving up the one thing he enjoyed and turned his back to me. I admit that eating meat and drinking beer sounded like a good strategy regardless of his poor knowledge of caloric intake.

This same guy turned to me later, after he’d forgiven me for my rude remark, and shared this depressing fact: he felt really bad because he’s been attending a lot of funerals lately. Five people he’d known had died in last two months.

You know what I was thinking: I need to get away from this guy right now. I don’t want to be number six. I made sure I didn’t rub up against him. Back luck rising. I started to worry that the chef might lose control of a knife at any moment and I’d look down to see it stuck in my chest. That would be . . . ironic? I survive 47 years of CF and meet my maker at a teppanyaki grill where I’m killed by a guy who can’t make a flaming volcano? I know what my British friends would say: F#*king hell.

When someone finally drove the carb counter home, I yelled out “seat-belts,” and got a funny look back like I was the drunk one. I just didn’t want the driver to be number six.

I was so happy when I left and survived the night. I will do my best to avoid these places in the future. I’ll use the “I’m sick” excuse. No one at work will argue with that one.

Stay safe.

Fox’s Adventures in Los Angeles – Theatricum Botanicum

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Handsome me hunting in the theater's garden

Fox here.

A magical outdoor theater hides in the hills of Los Angeles. Though well-cloaked by the woods of Topanga Canyon, and unknown to many who live in L.A, Theatricum Botanicum thrives as a gem of artistic freedom and expression.

This outdoor theater hosts outstanding plays and music in the summer and fall. The area where it’s located is home to artists, writers and other successful L.A. humans. Foxes like me live throughout the surrounding hills, along with other mythical creatures who show up at night.

Here’s the web link.  http://www.theatricum.com/

I recently grabbed UC and his family and treated them to a performance of A Midsummer Night’s Dream. For a few hours, cystic fibrosis and the challenges of life faded away, and fun and mirth was had by all.

Thank you, Mr. Will Geer and Family. Thank you for maintaining this wonderful place and for sharing great art.

(CG, I hope to see you here one day with that crazy cat of yours. It’s your kind of place.)

Here are some photos from the day.

The year was 1973 and Theatricum started rolling. It gets better each year.

Buried deep in the woods, T.B. is a must see in L.A.

Strange creatures live here and hide themselves in plain sight during the day. At night, this gas meter man comes to life and roams the canyon, hissing and smelling of rotten eggs.

While you're sleeping, I'll be standing outside your house measuring your gas usage

Here is the man who started it all.

The great man himself. AKA Grandpa Walton. At night, he comes to life and tells great stories to the wildlife.

Theatricum has introduced thousands of kids across L.A. to live theater. They give back to the community. Here’s a small performing area for kids to practice. It includes this cool bridge.

A wood bridge in a smaller theater for kids

Botanicum refers to the nature that surrounds the place, including the special garden where the bust of Will Geer and other native plants live.

Arrive early and you can picnic in the garden or other hidden nooks.

All kinds of amusing and interesting things hide in plain sight here and fill one’s imagination and heart. Where does this staircase go? No one knows because all who have gone up it have never been seen again.

Do I hear Led Zeppelin playing?

Here’s the stage in all of its glory. I would have loved to show you the actors on stage, but they frown on that. Plus, I drop the camera a lot trying to hold it my paws. My pal, Josh, tells me it has something to do with me not having opposable thumbs. At least my middle one still works.

All actors are invisible to the camera lens. That's how magical they are.

Here’s where the forest creatures hide during the day. Notice that there is no door.

Only at night does a door appear. They say those who see look too closely at the creatures become a creature

What exists at the top of the hill is unknown. Clearly, this is a sign a fox can ignore. And I did. However, I cannot speak of what I saw.

You do not want to know what's up here. Trust me, I'm a fox.

That was my adventure in Los Angeles. If you live here or are visiting, Theatricum offers the finest entertainment and acting. Not only that, your worries and troubles will gently be absorbed by the surrounding nature and the wonderful performance. You’ll leave smiling and relaxed.

Fox out.

On the Road with My Pal, cystic fibrosis

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Fox taught me to get a hotel room with a stove for boiling nebs.

[Warning: adult language]

Four days on the road

Mush, you CF drugs, mush. Creative Commons - jurvetson

I used to love traveling on business, but now I haul so much CF stuff that it’s not very enjoyable. It feels like I load a dog-sled full of nebs and meds. And it takes a couple of hours to boil and pull everything together. Then I need to make sure I don’t forget anything, though I’m didn’t fly this time, which meant I could drive back, if needed. Still, I’d rather avoid that.

Thanks to my wife, I received a packed suitcase for my trip. She packs enough clothes for a three-week trek across Antarctica. I can change my underwear twice a day, which fortunately I don’t have to do.

I’m not complaining.

A stuffed suitcase is a great perk of being married. I just need to lighten the load before I leave next time. I did promise to bring her back a cute penguin, though there weren’t any at my real destination, Ontario California.

What you can see looks nice. Creative Commons: angelasevin

What do we really know about each other?

Sticking with the Antarctica theme, I’m an iceberg, as are my co-workers. Just like icebergs, we only know the 10% of each other that sticks out of the water. The other 90% remains hidden from view. The longer we work together, the more ice we see. But with me, there is always cystic fibrosis lurking below the waterline.

Only three trusted people at work know I have it. The rest have the impression I’m sick a lot, I don’t like to shake hands due to germs, and I don’t like to talk about being sick a lot. Pretty close, but I don’t think I’m sick a lot.

CF neuters me again

My manager asked me to travel overseas on company business, which I used to do all the time. I turned it down. I just couldn’t do it. I have hemoptysis screwing with me these days, and I already lived through a bloody gusher on a plane across the Atlantic once before. Plus, travel wears me out, which affects my health in bad ways. Not wanting to go through that again, I turned it down for health reasons, which was embarrassing and made me feel like less of a man.

A leak develops - Creative Commons: clearly ambiguous

There’s that CF iceberg again, dragging through the water, slightly more complex than other people’s. Still, I’m lucky, I know.

The joys of saying the wrong thing

A co-worker said to me, “you looked really tired in the meeting.” She made this simple comment three times, as if I didn’t hear it the first time. Why do people always have to comment on the way I look? And why is it always negative? Do you really need to point out circles under my eyes or other physical characteristics? “Gaunt” or “thin” used to derail me when I was younger. I’ve heard it so many times now, who cares. I should wear a bag over my head 24/7.

What they don’t know

What my pal didn’t know was that my mucus production quadrupled the day before, and I was awake until one in the morning coughing it all out. Then I had to get up at 6:15 a.m. – when my co-worker was sleeping – to do my xopenex, two hypertonic salines, and my flutter. Then, I had to get ready for work. All of this took close to two hours.

Who wouldn't want to dream of these?

So, when someone says you look tired to me, I feel like saying, fuck you very much. While you were dreaming of puppies playing, and snug in your Marriott bed, I was sitting in my bulldog-covered boxers coughing up a pile of the stickiest crap you’ve ever seen in your life. Would you like me to show what I coughed up?

When you don’t have anything nice to say, just STFU.

I was pretty tired on Tuesday. I had to grind out the workday. I hadn’t slept well or long; my upper back was killing me, an 8 on the pain scale.  When I hurt it . . . I have no clue. Sharp back pains zapped me when I coughed. And my stomach bothered me all day. Overall, CF did a good job kicking my ass that day. I should have looked tired. But she had no idea why I did.

Zen and the art of keeping your mouth shut

Perfect bag for me. Note the upside down "crazy" on the bag. Awesome.

I had my own “foot in the mouth” incident when I said hello to someone I hadn’t seen in a long time and added: “I hear you’re kicking ass in your new position.” I meant it as, “I hear you’re doing really well.” I forgot she just fired one of the nicest people in the department, a woman who wasn’t a very good worker, but made days brighter. Thus, when I made my comment, she turned red from embarrassment.

I had to quickly explain what I meant. Too late, Mr. Tiny Verbal Dancer, damage delivered and done. I won the idiot of the day award, which goes on my shelf next to a hundred others that I’ve won at work. Yay, oh, yay, Communications Master, just STFU in the future.

I’m thinking of becoming a monk, the type who takes  a vow of silence. The only problem is there’s still non-verbal communication. I’m sure one of my fellow monks would look at me, make a sad face, and then use his finger to trace imaginary half circles under his eyes, which is the monk-way of saying “you look tired.”

I, of course, would use non-verbal communication right back with my middle finger – the universal way of saying, just STFU.

Stay calm and quiet.

100th Blog Post – Thank you – See you in a week

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The above video includes one of my favorite songs. If you like music while you read, please press play.

***********************************************************************************************

To everyone who has visited and read my posts and the comments, I have the following words for you:

Thank you. Thank you, so much.

I started this blog to leave a record for my daughter detailing my fight against cystic fibrosis. It has evolved into something more.

Much younger here, she's everything to us.

I say this from my heart: this blog became better than I ever imagined thanks to you, my friends.

With your help, it has evolved into something I never expected – I got more back than I put in.

When I felt like quitting the blog, you kept me going. During my recent jail stay, you gave me the strength to find the humor to fight CF – to say, I may bend, but I will not break from CF’s cheap tricks and mind games.

And, most importantly, the lesson my daughter will take away from this blog will be greater than my words alone.

It will be a message of hope delivered by others.

My daughter will read the comments and learn more about the people who took the time to write them. She will discover that the heart of the blog lives there beyond my individual thoughts. It is greater than I, and tells the following story: one cannot fight cystic fibrosis alone – it takes a team of the finest minds and hearts, and the courage they share, to defeat this brutal, complicated disease.

I have work commitments this week. It’s the perfect opportunity to take a week off from writing and reflect on the next 100 posts. It’s my hope they’ll be even more rewarding and that together we will find new strength to crush CF until its life blood drains into the gutter, never to be heard from again. Hope is on the way and it carries a very big flail.

I reflected on the 99 previous posts that Fox and I wrote and tried to identify my favorite. One post kept coming to mind. And of course, it features you know who – she of Jimmy Choo shoes, and Pink Bunnies and all things soft – she with the ability to transform darkness to light, words to sweet-smelling daisies, and toads to handsome doctors – My friend, Cystic Gal. Here’s the link:

https://unknowncystic.wordpress.com/2010/04/23/cf-blog-throwdown-dude-versus-the-lady/

Stay well – Fight hard. See you in a week.

p.s. If you’re wondering about Fox, he is in a Las Vegas jail right now. Last night, at the Hard Rock Hotel, he punched The Who’s Roger Daltrey, who according to Fox, made a pass at Ginger. I think Fox can use a few days in the hole to reflect on his actions before I bail him out, don’t you?

My Friend Nanos

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Hello, on the last Saturday of June.

I am really cute. Read about my owner at Please Pass the Salt.

Yesterday, I was tweeting with my friend @nanosmakemepuke, who, BTW, has one my favorite Twitter names of all time. In the future, we may find out that actual nanos were doing more than just making us puke, but that is a story for another day.

I feel lucky to know Nanos online, as she’s smart, funny, insightful, and has the ability to look at things from a different angle – a skill I value.

She also started a very cool blog. Please take a look.

She and her husband Matt have a life in Texas and are two of the hippest cats I know. Her blog has a style all its own.

And if you have the time, please leave a comment [click on “notes” to do this]. You’ll get a cool answer back and a free coupon for a Chipotle burrito bowl. Just kidding about the coupon part, but she did teach me the meaning of the word “regulate.” And I can tell you that one day, I’m going to regulate cystic fibrosis.

http://pleasepassthesalt.tumblr.com/

From Please Pass the Salt:

From urbandictionary.com:

Regulate: To lay down the law. Begin controlling s@&$. Often by
physical force/restraint.

____________________________________________________________________________________________

Fox’s Communications Tips: Speaking to RTs

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Grrrrrr,

Dreaming of Princesses

Fox here. I’m hung over and irritable because I loaned my nurses to a blogging buddy and he’s not returning my calls. I hope my team comes back in time for my midnight dose.

I’ve spent the day deep in thought about Unknown’s problems in the hole last week. I’ve boiled it down to communications, meaning crappy verbal skills on the part of Unknown.

So, I thought I might share a lesson I gave his highness on how to communicate better with RTs. Here are the role-plays I designed for him.

Lesson 1: “It’s all in the wrist”

RT gives you a med you don’t take

RT: Hi. I’ve got your Pulmozyme.
Fox: I’ve got your Pulmozyme, too.
RT: What?
Fox: Yeah, I got it right here.
[Fox sticks paw in pocket. Pulls paw out flipping the RT the bird]
Fox: See, here it is, and it says F U Pulmozyme on it.
RT: How dare you.
Fox: How dare you, SIR, for bringing me a medicine I don’t take.
RT: It’s in the chart.
Fox: That chart needs to go up the person’s ass who added Pulmozyme to it.
RT: There’s no need to speak like that.
Fox: Since when is “ass” a bad word?  Is it because there’s a chart sticking out of the ass? Does that make it bad? It’s because of the image it creates, isn’t it? Chart hanging out of ass, that sort of thing. Would it be better if the Pulmozyme was sticking out of someone’s ass?
RT: [leaving quickly] You’re crazy. I’m leaving.
Fox: You go ahead and do that. I’ll be here hyperventilating because you almost killed me with the wrong medicine.

Lesson 2, version A: “Liar Liar, pants on fire”

RT shows up late with your morning meds and you’re caught red-handed doing your own

RT: You’re already doing your meds?
Fox: Yep.
RT: Where did they come from?
Fox: [lying] The other RT brought them
RT: The other RT?
Fox: Yeah, the other one. He looked like you, but different. He was bald
RT: When was this? Bald?
Fox: Not too long ago. No, he had blonde hair.
RT: You said he was bald.
Fox: I was wrong. He had black hair.
RT: What? Did you get his name?
Fox: Whose name?
RT: The other RT.
Fox: What other RT?
RT: The one that just brought you the meds.
Fox: Oh, that one. I don’t know. I don’t work here. Don’t you guys know each other?
RT: I don’t know who it could be.
Fox: He had a limp.
RT: A limp? We don’t have anyone with a limp.
Fox: [holds the neb away from his mouth like poison] You have me worried now, man! This could be rat poison delivered by a bald guy with one leg. Who brought me these meds? Was it a real RT? Are these the correct meds? I’m feeling light-headed.
RT: It’s okay. No need to panic. I probably missed it in the chart.
Fox: Oh, okay. Yeah, it’s probably in the chart.
RT: I bet it’s in the chart.
Fox: Charts are never wrong. [crying] Would you mind leaving me alone now? This has been very stressful.
RT: Sure. Sorry about the confusion.
Fox: Okay. I probably won’t file a complaint this time.
RT: Thanks.
Fox: [stops crying] Do me a favor, would ya? On your way out, slide my beer keg against the wall. People keep bumping into it. Thanks. You’re the man.

Lesson 2, version B: “Message from a friend”

RT shows up late with your morning meds and you’re caught red-handed doing your own

RT: You’re already doing your meds?
Fox: No.
RT: What?
Fox: [throws the covers over his head and tries to hide]
RT: [pulls the covers off] You’re doing your meds. I see you.
Fox: No, I’m not. And you don’t see me.
RT: You’re not? But I’m talking to you?
Fox: I’m not and you’re not talking to me.
RT: What are you doing?
Fox: Being invisible.
RT: But you’re still inhaling meds.
Fox: You call them meds. I don’t.
RT: Aren’t they?
Fox: No, it’s beer.
RT: You’re inhaling beer?
Fox: Yep. Yes, I am.
RT: Are you kidding?
Fox: Nope. Would you like some? I’m seeing two of you right now.
RT: You can’t inhale beer.
Fox: I can’t. Sure tastes like Old Milwaukee to me.  Ring, ring, ring. Hold on, someone’s calling. [pretends to pick up and answer an imaginary phone with his paw] Hello, CG. Yes, the RT is right here. [to the RT] It’s Cystic Gal.
RT: Who?
Fox: Cystic Gal. And she has a message for you.
RT: What message?
Fox: She says, “Suck it, UPS driver. Suck it.” That’s classic, CG, Dude. What a mouth she’s got when she’s pissed. And she’s pissed at you, lucky fella. [laughs his fox ass off]

I'm CG's cat and I say "Meow it."

That’s it for tonight. These examples should help old Unknown communicate better the next time he blows a gasket.

Party like it’s your last.

Fox out.

Letter To My Daughter – 6/23/10

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[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

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[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 . . .