Category Archives: Love

Happy Holidays

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I wish everyone the best of holidays. Thank you for your visits and comments, and I hope for only the best of health and happiness for each of you and your families.

Here are a few fun photos from our Christmas.

A couple of years ago, I pranked my 6-year-old daughter with a nutcracker trick. Each day in December, I left a new nutcracker in the house with a note on it. The note explained that the nutcrackers had chosen our house for a very special gathering during the holidays and my daughter should prepare for the arrival of the Nutcracker King.

The joke went well at first with my daughter buying into the festivities. That is until I wrote in one of the notes that the nutcrackers would be leaving after the holidays. This brought tears and ended the fun for her, as she didn’t want to see Hans and Franz, the king’s attendants and the ones I did the cute voices for, leave the house to return the next year. We had to agree that some nutcrackers would stay on after the holidays. And to this day, we have a few select nutcrackers hanging around our house year round.

Now most of the nutcrackers I bought hang out on our nutcracker tree below.

This year, my wife and daughter built a gingerbread house. It turned out pretty nice. They were excited because the kit included fondant, which is used on Food Network Challenges.

I wasn't allowed to help because I ate the ingredients

Here’s a picture of our Christmas tree. I used Hipstamatic on my wife’s iPhone and shot it “old school” style. They did a nice job and I supervised, which really made all of the difference. I’m an excellent couch supervisor, though my daughter barked at me to help. I did my tours of duty as a kid setting up a fake tree for my mom and helping to decorate it. Now that I think of it, I may have supervised the hanging of the ornaments back then, too.

 

Old-fashioned photos by Hipstamatic

Best of health and holidays to all.

Letter to my daughter, 10/14/10

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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.

Hospital Update

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(Written on my iPad in my hospital bed; please excuse typos)

Day 12 of the endurance test continues. After 9 days of fountain-worthy bleeds, one bronchoscopy, two separate embolizations, morphine dreams, four days in a hell called ICU, and steroid hallucinations, the demon known as Hemoptysis has withdrawn. No traces today. Just unfriendly memories. But I’m not out of the woods yet. The 11 days of vacation from airway clearway may have felt nice, but did a number on my lungs. The bacteria have fled to their bunkers and it’s taking the big bombs and hypertonic saline to loosen their hold.

Afternoons are still tough. I do a header into bed like a drunk Olympic diver who hit his head on the edge of the board – I get zero points for my bellyflop entry. I’m still on O2, which is thanks to the lack of airway clearance, inflammation and the party juice they gave me during eight hours of procedures. I’m proud it took them a ton of drug to knock me out. I remember cracking bad jokes right before the bronch and hearing someone say “how much have you given him?” Then I heard about the amount before the second procedure because they were surprised how much it took to shut me up (my wife asked for some to go). We’re not talking about Michael Jackson status here, but the King of Pop and I could have partied together, IVs in tow to see who who could stay awake the longest. Unfortunately, my lungs are still paying the price for my endurance and there’s no “hair of the dog” cure sitting around ready to be mixed.

Embolization hangovers are the worst.

I’m making light of a serious situation again. I hate when I do that. Shit, I’m alive. And I can tell you that this experience made me realize I got everything I wanted in life. I have two California girls who love me and who I’m going to hug like stuffed animals when I get out of here. That’s more than enough to get me through life. More than enough. I am the luckiest guy in the world. Believe it. I do.

Juli’s McGriddle Post

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My warped friend, Juli, wrote a fabulous McGriddle post for moi. I thought she was perfect before she penned it. What’s above perfection? Well, I would say that’s “goddess in the clouds” status. So, Juli, I herby give you the title of McGriddle Goddess and thank you from the bottom of my heart for making it worthwhile to peel myself off the heat-reflecting hospital bed this afternoon.

Here is Juli’s tasty post: http://lifeloveand65roses.blogspot.com/2010/09/my-apologies-to-mcgriddle-sort-of.html

Letter to my daughter 09/14/10

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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

25 years with Mrs. Unknown

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I laughed out loud when I started to write this post. I’m serious; I did, literally. Let me explain.

25 years in the best bankrupt state in the union

This August it will 25 years since I met my wife.

I laughed when I thought of that because I have no idea what she was thinking when she started dating me, let alone marrying me. I was/am/will always be a mental case. I can say with 100 percent certainty that I got the better end of the deal.

Her work ethic inspired me to go back to achieve the goal I couldn’t on my own – getting a college degree. I’ll always be in her debt for that one alone, not to mention the way she’s supported me over the years. I can’t imagine that I would have made it this far without her.

We’ve been married for how many years?  . . . do the math . . . wait for it . . . wait for it . . . thinking . . . thinking some more . . . I use words, not numbers . . . here it comes . . . 18 years. Yeah, 18 years, I think. Close enough. Wow, married that long? It’s a blink. I’ve never in all of these years asked her if she had doubts, or how she put the CF aside, or was she worried or afraid? Or, if I did, I’ve since blocked out the conversations. Best not to question another person’s temporary insanity.

I will share where I asked her to marry me, which is pretty corny, but I was an English major and probably deep in a book with lots of overt symbolism, plus I was young and . . . brighter than I am now. Hey, that doesn’t make sense.

I love Dairy Queen and my wife. I especially love taking my wife to Dairy Queen, when we can find one.

Anyway, I asked mi esposa to marry me at the top of the first hill on a rollercoaster at Magic Mountain. The Viper, I think. Just before the car went down the crazy-steep first drop, I asked. And it took the entire ride of screaming and holding on tight and the coaster returning to the station for her to say “yes.” Amazing that she did say “yes,” which may have just been a response to me asking “great ride, huh?” Again, I don’t question it. I don’t understand it, and I don’t question it.

I wonder what she would do if she had a time machine now, would she still say yes?  I know the answer, as my daughter pretty much means she won’t mess with anything that would affect that timeline. So, I’ve safe. Or, my past is. My future? Hard to say. I don’t take it for granted.

What kind of courage does it take to marry someone with CF? I’d guess a lot. And when that CF someone is self-absorbed and the equivalent of a day at a rainy beach with the wind blowing sand in your face, I’d say extraordinary courage is required.

A writer friend of mine, who has since passed, once told me it’s best not to analyze love. I’ve taken that advice to heart and never examined it with a microscope. Shakespeare pretty much covered the subject for all of eternity anyway.

So, 25 years have passed. I know they’re not all marriage years, but with CF, I’m counting them that way. I have to figure out something nice to get her. I know that 25 years with me has been gift enough, but a trinket might be in order. She doesn’t like to spend money and doesn’t like jewelry. I’m at a loss. Hmm, what could I buy for myself that I’d be able to say is really for her? I’ve done that many times over the years.

How can I repay her for the 25 years? I’ll have to think about it. It’s not an easy question to answer.

To be continued.

Letter To My Daughter – 7/11/10

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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

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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

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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 . . .