Sunday, May 2, 2010

You Live

Yesterday, May 1st, was the most perfect day here in the Hudson Valley.  Blue skies, 85 sunny degrees, a slight breeze and the best thing of all was that I had nothing to do for an entire 24 hours.  That, in itself, is a fluke of cosmic inertia.  I was so ecstatic about the lack of obligations that I just had to post it on my personal Facebook page to make it real.

My status for the day read as follows:

As the Type-A personality that I am, I completed the day’s task successfully.

It was around 1:30am and there we sat; Marc, Eric and his two friends, Ian and Christian, and a very relaxed, tanned and slightly buzzed…moi.

We were sitting on our make shift beach-by-the-pool around the fire looking up at the stars and enjoying the night air. It was an absolutely perfect day.  Thank you, God.

Today I woke up around 9:00am to the smell of a hot cup of coffee on the nightstand…nice.  I’m thinking “Yes! Repeat of yesterday!”

My blackberry starts vibrating and I grab it see what's up.

My heart sinks.
I grab a tissue.
I read the email.

Life to the Fullest
Today Emily peacefully went to a place without CF, a place where she can run, surf and breathe without worry.

Emily was 27.
Emily lived in spite of CF.
Emily was “Jena-amazing.”

I sit in bed, my stomach in knots, tears streaming down my face.  When will this end?  When will CF stop extinguishing the light of those who fight so hard to live?  When will it be easier to breathe?

For a moment I feel slightly relieved knowing Emily isn’t suffering anymore and the torment of CF to her body is now over.

My thoughts turn to Diane and Steve, Emily’s parents, and the really ugly cry starts.  They have officially joined 'The Club' that no parent should belong to.  'The Club' that reads like a bad “You know you joined the club when…” live the rest of your life wondering what really matters. live the rest of your life trying to accept that your child has a second date. live the rest of your life stumbling over the question, "How many children do you have?” live the rest of your life with a tissue box by your bed because you go to sleep and wake up with tears. live the rest of your life not knowing how the rest of the pages would have been written. live the rest of your life not knowing to look up to heaven or a tombstone to talk to your child. live the rest of your life being able to laugh and cry at the same time. live the rest of your life with a hole in your heart that won’t ever heal.

But you live.

You live because they fought so hard to live and they cherished each breath they took.

So you live…even when you don’t want to.

As Jena told me, “Pain is not a valid reason for stopping.”

Sometimes you live the perfect day and sometimes you live your worst nightmare.

Still, you live.

Thank you Emily, you showed us all how to live.
We miss you.


  1. Again you have me in intense sobs... thank you for sharing with us... thank you for sharing with such raw and beautiful honesty.... You are incredible and it is clear how amazing your Jena was.... how many she touched and continues to touch....
    My husband asks me why I go on the computer in the middle of the night and read the blogs and watch the videos... the CF stories, the good the bad and the ugly, he knows I always end up in tears.... If its the tears that motivate... that spread awareness, that raise money.... that allows development of these drugs and therapies we so badly need... that helps those we love so much... that finds the CURE.... BRING ON THE TEARS!!!

  2. SHared Tears are healing Tears... here are a few for you and EMily's family...

  3. Love you Margarete! Angie