Friday, June 25, 2010


No one likes to say goodbye.

Sometimes you’re told you have 10 minutes to say goodbye:

(excerpt from Beyond Breathing) 
Dr. Smarty-Pants gave me ten minutes.

Ten minutes.

That’s all I get to tell Jena everything in my heart. 
To tell her how much joy she’s brought me. 
To tell her how much I love her.
I had ten minutes.

I told her all those things. 
I told her that if I could be just a fraction of the person she was, I would be the most incredible person ever. 
I told her that if I could bring half of the smiles and laughter she did I would be honored to stand in her shadow the rest of my life. I cried. I couldn’t stop crying.

As the tears relentlessly streamed down my face, I apologized for any and every fight we ever had. I apologized for any time she was mad at me or I was mad at her. 
I told her again and again how much I loved her, how proud I was of her, and how much she’d taught me that I would never be able to repay. 
I cried. I was shaking. I was terrified. 
I couldn’t believe I was doing this, I couldn’t believe that I had to.

Sometimes you’re told you have months:

 (excerpt from blog: Not so Bright and Shiny)

 I believe in God, and I fully know He's holding us so close to him that he's carrying us right now...but man...I wish that gave me peace. A sense of relief, anything...but the never ending "why's" don't go away just because you know and trust God. Kids shouldn't die, plain and simple. Parents shouldn't have to be thinking these things and filling out DNR's and shopping around for fairly priced funeral services. It's not natures order. It's the complete opposite of order
…Why in Gods name is my seven year old son dyeing...

Sometimes goodbye has no warning and time is up.

I’m blasting Nickelback’s, “If Today Was Your Last Day”

So do whatever it takes
'Cause you can't rewind a moment in this life
Let nothin' stand in your way
Cause the hands of time are never on your side

If today was your last day
and tomorrow was too late

For little 7 year old Conner Jones, today was his last day, his last breath, his last time being wrapped in the arms of his mother, tomorrow is too late.

Cystic Fibrosis stole another precious life from a devastated family.

Cystic Fibrosis steals a life every single day, 365 days a year.

Cystic Fibrosis is the epitome of evil.

Am I’m crying? Yes.

But I’m pissed-off more.

How dare life be unbearably hard and hurt so much for some people?

How dare others waste their days like the world owed them _______ (happiness, a new car, a promotion...fill in the blank.)

News flash people, the world owes you nothing.  Got that?

It’s up to you to find value, meaning, and purpose.
It’s up to you to work at it.

Today, right now, I have no patience for selfish- egocentric-morons.

Tell Conner’s mom about the ridiculously long line you had to wait in for your new iphone while she’s picking out an outfit for Conner to be buried in.

Tell her about your chipped nailpolish, your broken pool heater, the exorbitant price of your Disney family vacation.  I dare you.

Did I mention how pissed I am?

I’m angry, frustrated and I’m heartbroken.

Granted there are many illnesses out there that people struggle with everyday.  I get that.

I get that there is stress, tough times and hardships in everyone’s life.  I get that too.

That’s not what I’m talking about here, I’m talking about those people that create drama by their poor choices not by life’s circumstance.  Those that have “it” all and waste it like it was yesterday’s news.  Those that find meaningless problems some of us wish we had.

Yeah, them.

Tell them about Emily, who does two hour breathing treatments just to breathe. Tell Emily and who has committed herself to exhausting daily workouts to achieve her goal of riding her bike city to city.

(Washington DC to Shepherdstown, West Virginia)

Tell Ronnie who has CF, was told his life expectancy is "now up to" 37, and has spent more time in a hospital than he can count, who defies CF’s fatal reach by not only writing an amazingly inspirational blog but is planning for his fabulous future with beautiful wife Mandi.

Tell Ali and Christina, sisters who both have CF, who were told at a young age that their lungs would never allow them to sing. 

Tell them how hard you have it.

Hello people… this life ain’t no dress rehearsal!

Each day is a gift.

Each day is an opportunity to pursue your dreams.

Each day is all you have to give all you’ve got.

When do you stop giving?

When do you say goodbye?

I never said “goodbye” to Jena and I never will.
She’s in my heart forever; alive and well.

I’ll never stop fighting for CF until it means Cure Found.

Little Connerman and Jena gave us more love in their little lives than I could have ever imagined.

The world owes me nothing, yet I owe the world everything.

I think that’s a fair trade.

 Conner Reed Jones
4/14/2003 - 6/24/2010

Saturday, June 19, 2010

Make it

I am in the 9th hour of a 12 hour car ride from New York to North Carolina, in the backseat, with no control of the music or temperature of the car. At least I have a stash of chocolate and my laptop to keep me sane.

My expectations for this trip were low and by low I mean I would have gladly scheduled a root canal to get out of it. Yet here I am, and have been, since 6am this morning with Marc, Eric and my mother-in-law, Ann. We are on our way to a family wedding in the outskirts of Asheville, NC…800 miles from home.

I can hear you now, Why not fly? Good question.

Believe me, I tried. There are no direct flights between here and there and the layovers were extensive. The wedding location where we are going is a bit remote, so the difference in travel time was equal, hence the road trip from hell. Here I sit, doing all I can not to pull out my hair, strand by strand.

I have no internet, no work, no Facebook to entertain me. The incessant country music Marc listens to while he drives is enough to put me into a coma. Eric and Ann swapped seats at the last rest area because Eric was tired from only 3 hours of sleep last night. I’m sure it had nothing to do with the house full of boys that showed up at midnight to “hang” with Eric. He grabs a pillow and is fast asleep on my lap. I look at his legs that are now too long to fit across the back seat anymore and I sigh. He’s not my little boy who used to call me, “Mommy.” He’s a young man who calls me, “Ma.”

I really am so proud of Eric and all he is becoming. He’s working part time with Marc at Merrill Lynch; he’s taking an online class over the summer to get ahead, and he’s living the social life of a college student. I love that he still takes time to “hang” with the family…and sleep on my lap.

My trip down “Where did all the time go?” gets replaced as I notice the conversation in the front seat. I’m listening to Marc and Ann talk about golf. Ann took the sport up a few years ago with some of her girlfriends and it’s so nice to hear Ann and Marc connect. Talk about “Where did all the time go?”  Here I sit in the back seat with my son asleep on my lap and Ann and her “baby boy with grey hair” chatting it up in the front seat.

Life is chaotic and our little boys grow so fast it would make any G-force jealous. This never-ending car ride from hell has turned into a captive mother-son bonding time that truly is priceless. Life is what you make it. It really is up to you how you choose to make the most out of your life. You can choose to resent time, your wrinkles, and bad flight schedules or you can choose to embrace all life has to offer. Mind you, life will make you crazy if you let it or it can make a captive audience a wonderful memory. The choice is always up to you, make it worth it.

...and somehow I think our angel co-pilot had something to do with this…

Seriously though, next time I’m flying.