Tuesday, May 18, 2010

Everything I Do

I’m sure you’re not surprised to know I am writing this from seat 11C, non-stop flight from NYC to Los Angeles, California.

Where am I off to this time?

I have a Beyond Breathing book signing and a Great Strides walk in Huntington Beach, a Cystic Fibrosis fundraising event in Hollywood called “California Wine Masters,” and a few much anticipated dinners with very special west coast friends.

By now you know that I’ll do anything and everything for CF because both my kids, Eric and Jena, were born with the horrible genetic disease.  I am sure you are also convinced that I am determined to make CF stand for Cure Found.

So while Marc is sleeping, I turn on the laptop, hit the shuffle on my iPod and begin my 5 hour and 18 minute flight out west.  The first of my 373 songs that plays is “Everything I Do” by Bryan Adams and my writing begins.  I’m smiling as I look out the window into the clouds.  The universe has my undivided attention.

This song has a story, this flight is long and my laptop is fully charged; my blog begins.

The lyrics I hear are:

There's no love - like your love
And no other - could give more love
There's nowhere - unless you're there
All the time - all the way

Oh - you can't tell me it's not worth tryin' for
I can't help it - there's nothin' I want more
I would fight for you - I'd lie for you
Walk the wire for you - yeah I'd die for you

Ya know it's true
Everything I do - I do it for you 

Romantic if it were about Marc, but it’s not. “Our song” is I.O.U by Lee Greenwood. That my friends is a whole other story where I’m sure I'd joke and tell you how Marc's been paying for marrying me 20 years ago.

Right now, THIS song is a love story about me and Eric.  Mother and son.  Unbreakable bond...stretch marks and all.

When Eric was born back in July 1991, "Everything I Do" was the number one song. You couldn’t escape hearing it at every wedding, every high school prom, and of course it was incessantly playing on every radio station in the country.  Oddly enough, the place I heard it the most was in the Neonatal Intensive Care Unit (NICU) at Westchester Medical Center.

It was Eric’s first home for his first week of life. As a 22 year old mom, I would hold Eric so very carefully as he was swaddled in hospital blankets with wires attached to his tiny body.  As I rocked him and stared at my new baby boy, I listened to the lyrics and cried.  He meant the world to me and he redefined my definition of true love.  As a young mom, I was so scared what was ahead of me.  All I was told was that Eric had CF, a genetic disease that no cure and his median life expectancy was 19.  At that moment I knew that everything I would do, I would do it for Eric.

Flash forward 18+ years…Eric was discharged from the hospital on March 11, 2010 from a pretty bad flare up with his lungs due to CF.  As we drove home in my car listening to the radio guess what song came on?

Boy, you’re a smart cookie.

The song hit me pretty hard.  I started crying and had to pull over to let Eric drive.  I realized that it wasn’t the lyrics to the song that got me but the promise I made to him 18 years ago in the NICU. Whether I said it out loud to anyone or not, I really don’t know, but I do know that choosing to be a stay at home mom for 17 years, attending CF fundraisers, and chairing local and national CF committees, everything I have ever done with meaning and purpose in my life was because I was a mom to Eric and Jena.

When Jena fired me and left this world on December 4, 2006, my fight for CF still continued.

CF is the reason for my heartache and is the force that drives me to make a difference in the lives of those who fight to live.  CF has integrated into all aspects of my life. In fact, there hasn’t been a vacation I haven’t gone to that CF wasn’t somehow figured into the mix.  CF is everywhere and in everything I do.  Sometimes it feels empowering when I am part of an event where we’ve raised a ton of money for research and sometimes it's the source of my misery.

Before I left the house today, I checked my Facebook account and realized I was down yet another friend…crap.  That makes two so far this month. Both Facebook friends had cystic fibrosis.  Both Facebook friends lost their battle to CF this month...crap.  This month ironically is national CF awareness month.  Not exactly the way to create CF awareness.  This is why I have laser-like focus to do everything I can to cure this hideous disease. I do it for Jena. I do it for Eric.  I do it for Emily and Mike.

In addition to the worry of having a son with CF, I have been informed by said son that he is going to fly out to San Diego next week.  Why?  To take a two week road trip back to New York with his long time friend Dean.


Just great.

Where is that sarcasm font when you need it?

So, two 19 year old boys will be traveling cross country, living large, experiencing all the adventures life has to offer, with absolutely no supervision-whatsoever.


Marc and I raised him well.  We raised our kids to live life to the fullest in spite of CF.  I never put him in a bubble to protect him from the world, I never told him there wasn’t anything he couldn’t do and now I have to accept the fact he actually listened to me.  But cross country for two weeks? Really?
I speed dialed Dean’s mother Tara.

Our conversation went something like this:

“Tara, Hi it’s me.  Now listen, I know you’ve been there for me through everything and I owe you the world.  Tell me, how do you feel about a little trip cross country? We could fly to San Diego, rent a car, get cool disguises and follow the boys home.  What do ya think? You up for it?”

Dean is her youngest of 4 and she knew better.

“They’ll be fine…and you know damn well that if we go, Marc and Tim would be right behind us wondering what the hell their wives were getting into now…so how about I just come over for a glass of wine and we can look at the boys’ baby pictures instead?  If it makes you feel better, I’ll bring over some wigs.”

After a moment and a heavy sigh I answered, “Yeah, you’re right."

Before I could grab some wine glasses and open a bottle of Cabernet she was there with a hug, two pairs of dark sunglasses and blonde wigs.

My point?

CF sucks and life is an adventure if you’re doing it right.  And you should consider yourself damn lucky if you’re surrounded by those who love you when you act crazy.

So, I’m off to another CF event in California because that’s what I need to do.

Eric’s going to have the adventure of his life and that’s what he needs to do.

But between you and me...I'm scared.  Eric is the entire world to me.  He is what keeps my from going completely and utterly insane.

Everything I do… I do for him, for Jena and for those fighting CF.  I can’t stop fighting against CF and I can’t keep life from Eric.

So if you see two chicks in a convertible out on Route 66 following two teenage boys…do me a favor and don’t blow our cover...


  1. Funny, sad, funny, sad...wow! What a roller coaster ride reading your blog...and I love it.

    I'm facing something that's not near what you're going through, yet it's real for me and difficult. Andrea's been invited to go to a friends house to get ready for their 8th grade dance. They're going to give themselves facials, do their makeup, order pizza, and get all dressed up and ready to flaunt their beautiful selves. I'm so excited for them all, but there's one problem...I'm not invited to stay and hang out with them!

    I want to be there and watch this and help and just take it all in. Andrea doesn't mind having me there, it's her friend that just wants it to be the girls and the only mom there would be hers. She'll be taking the pictures and not me? I'm just having trouble dealing with this! Do you think that's silly? I don't know... part of me thinks I'm being silly, but the other part thinks I deserve to experience this too!

    So, I have three more weeks before this happens. Wish me luck as I will attempt to persuade this girl to allow me to partake in her and MY ANDREA'S shindig.

  2. Great post. So honest you are. I will have to bookmark it for the future...like another 15 years down the road so I can look back and read my reaction to Susie's above comment...

    Susie, I think three weeks from now would be a helluva good time for us revisit TNT. Now don't you think so too?

  3. When you were speaking to the crowd at Great Strides last Saturday I realized something for the first time...that I am not in this fight alone??!! Weird I know...I have sat infront of hundreds at past events listening to their struggles and fights but I always felt as if I were alone. Even with my wife right next to me I still felt as if I was hitting the bag alone. Stupid, I know but none the less that was how I felt. But listening to the passion behind your words and the fire in your eyes...now I know that simply isn't true. I have a friend that is in this untill the end! So I will keep fighting, keep coming up with different things and ways to bring CF to the forefront. And I do so knowing that I have a mentor 3000 miles away that is fighting just as hard and with the same amount of passion...I am so very glad that God had our paths cross. In me you have a friend forever...you Mark and Eric! See you in July!

    Pastor Tony Smith

  4. Fired? I wouldn't say you were fired...the reins were perhaps handed over, but you were definitely not fired. Some would even call it a promotion to call the shots as you see fit...xo

  5. Thanks! Margarete! You are a shining beacon.
    All the photos are just great and your words are very compassionate & true. I sincerely wish you and your family all the best in the world.
    You are blessed. I don't think you could do all that you do with out divine interventions and possibly one or more of Gods angels watching over and staying beside you through all of this.
    I just want to say that by reading your book and now your blogs and posts on facebook that you send messages of hope for many of us and that with your influence in your life we see a determined example of a loving, unrelenting, mother to help her child. And in so many ways in watching your determined spirit and doing these activities that keep you on the go and jet set and jet lagged oftentimes, we can see your passion and sense of urgency you have, to make the world see and be aware of CF.
    Thank you for fighting the good fight and to inspire others to keep the faith that there will soon be a cure found for CF.
    Also, I like what schoolgirl wrote, you were not fired. You are a source of encouragement for my life. Kim Haynes

  6. Wonderful words, beautifully put together, a great reminder to us all .