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


  1. 70,000 others world wide and all the people completely agree with this post!

  2. You said it very clear and I completely agree

  3. Well said Margarete. Couldn't have said it better. I only wish that more people could see life this way. A good life requires good old fashioned WORK! You have to learn to play the best you can with the cards you were dealt. Conner, Jena and Ed did just that!

    "Celebrate we will because life is short but sweet for certain." -Dave Matthews Band

  4. Could not have put this more perfectly.

  5. Thanks Margarete. You have empowered me with your words.

  6. I've been one of those selfish, drama people. Today - I am changed because of what you've written. I will no longer be too tired, too busy, too self-centered to care about those who struggle to breathe. No longer will I sit and watch - say I'm "praying" and do nothing. Forgive me. Please forgive me for not caring enough. I care now - I will do whatever it takes to show that care. I will.

  7. I <3 YOU!!!
    Thank you for sharing your words.... the words that need to be said and heard!!!
    Some how ...deep down you find the strength... because you understand that every breath is a gift not to be taken for granted... and you inspire all of us to carry on and fight the fight to make CF stand for CURE FOUND!!!

  8. perfectly said...

  9. Amazing post.
    BTW, I was JUST holding your book in my hand about to read it as I did Skyes treatments. Just started today, can't wait to read on! <3

  10. I absolutely LOVE this post. It's like you took the words right out of my mouth.

  11. I love it. Awesome. I try and not be cynical each and everyday as people complain about the mundane. Yes, my daughter has a life shortening horrific disease, but I am so blessed to have her in my life. Thank you.

  12. Well said my dear. I still remember a few months after Annika's 3rd week in hospital. I was talking to a friend, and she started crying because her daughter had to get glasses. Ok , my daughter has a blood infection and we have been on IV meds for 2 weeks and you are worried about glasses. People amaze me. And you know that people say and do things to our family all the time and we have to shrug it off with a smile. Conner is a angel today, and will be sadly missed.

  13. Very inspiring - thanks for being raw and honest.
    I met a guy this weekend who is 35 with CF, he was told he would live to about 36. He's married (to a special nurse) and they foster medically fragile children. Living his live with Purpose.

  14. I couldn't put it any better. Thank you!

  15. Thank you for putting into words what i have been trying to say for too long
    Connor and all these children touch our lives so much
    We dont understand why sometimes

    My baby has CF and i see her in Connor and all these angels taken way too soon
    How would i cope i dont know
    I dont want to know i dont want to even imagine

    There but for the Grace of God go I

    My heart breaks

    Luv Deb

  16. well said
    from the heart
    can't beat that
    Lee in Australia

  17. Thank all of you for your kind words.

    Sometimes I have all this emotion bottled up in me and I have to express it somehow...writing for me is my expression. Thank you for reading them.

    Raw and real, from the heart....yup, that pretty much sums me up. I'm not sure that's always a good thing, seems to get me in trouble sometimes ;-)

    Thanks again!

  18. I love you, girl!! Thank you for saying what we are all thinking when we see those people out in real life! Kick 'em in the ass!! ;)

  19. Thank you for putting into words such a genuine, gutsy,inspiring and motivating message that all of us who have children with CF want the world to hear. Well said!


  20. My heart aches for Conner's family. They and everyone who have to deal with a devastating disease are in my thoughts and prayers.

    Unfortunately, people have a narrow frame of reference when they deal with everyday life and the "trivial" to some is a "catastrophe" to others. I want to shake them...but who could honestly wish that kind of pain on anyone?

    As always, your words hit the mark, sweetie. Let 'em have it. If you can inspire one person to think outside of themselves, ya done good.


  21. Margarete~
    once again you are amazing and your gift of writing blesses us all...thank you for saying what we all want to say, for giving voice to CF and for making a difference in the lives of many. Today is a gift, we all MUST use it wisely!
    Love you my friend~ Pam

  22. Thank you for being a voice for all the families who struggle dealing with CF and any other fatal disease on a day-to-day basis. Your words are cathartic, and powerful. It is horrific what these kids & their families go through, but so inspiring that they strive to enjoy life in a way us "healthy" people can never understand. My friends' daughter has CF and I cry for them so much. I beg God to heal her and to spare her from this evil disease. I can't imagine what they go through each day. My daughter and I pray for them every single night. I hope & dream of a day when CF means "Cure Found"!