My arms are empty and acheing...

I can’t believe I’m a mother without…

Life has been twisted and turned upside down. As a mother, I had both the wonderful privilege of holding my sweet son as I brought him into this world…and the horrible chore of holding him as he took his last breaths and left this world, at only 7 years old. June 24, 2010 he earned his angel wings, passing away after an inspiring but brief fight against Cystic Fibrosis. Now I live, solely focusing on living a life to get to be with him again in heaven, and to raise awareness for Cystic Fibrosis research. I am dedicated to a cure, not only for my sweet sons legacy but so that other CF families never experience the greatest loss of their lives that we are now facing. My mother’s arms are missing Connerman, yet he still inspires me daily to leave a mark of LOVE on this world…so for you my sweet prince, mommy will try!

Love Love Love

Always Always Always

Monday, April 19, 2010

Won't you help us please...

I've met so many wonderful cystics this past week....honestly, some of the most well wishing, loving, supportive and god loving strangers I've ever had the pleasure of meeting. I've been weeding thru my hundreds of emails from these amazing people...and I just can't help but to think of that ugly bond we all have.
Cystic Fibrosis
Hearing all of the love given to our family, to our sweet Conner, and then in the same post to be introduced to those they are fighting for. Oh that is simply overwhelming. There are hundreds of tiny souls batteling this disease...and I hear..."my so-and-so is this old with CF and I simply can't imagine what you're feeling...." oh my heart is heavy. For you.
All of you.
Each person whose reached out to me this past week with loved ones suffering silently, and even not so silently with this heart is broken for you. My tears for you are endless. Because I pray that you will never know what I'm feeling today. With all my heart I pray you will never see your 18 month old angel fighting for their life...for your 5 year olds...for your 25 year old daughter and sons waiting for transplant...oh my. The burden I feel for all of us, in this horribly close community ravaged by this monster just overwhelming to me tonight. I wish for one moment I could list out each of your angels. I'm sure many of you, follow other cystic blogs and even have many CF friends on FB and other forums, and I have as well, but this past week God has opened the door up for so many hundreds of you to introduce yourself to me, to send us love and support...and at the same time he's shown me just how many lives are on their way to devestation. and that is crushing. Safety is in numbers, wouldn't you agree? just plain old numbers....leave it at 30,000 people have CF and you can turn from it, unscathed. But when in one week you've been reached out to, and introduced and been given NAMES of almost 1500 actual PEOPLE, living, breathing PEOPLE fighting this internal fight each day, that simply is overwhelming...and it's a call to action. You simply can't turn your back at that. I think what Im' feeling now is a turning point in my life. I think we can use this for good.
This is how we should fundraise for all of our loved ones. Give CF a name...not just one name, and 29,000 other strangers...but names...people. pictures. lives. How can someone turn their back when they see faces to these countless people fighting...? How easy is it to say, "gosh ya too bad for Conner...glad it's not my child...." but how could people turn around and walk away hearing "this is 7 yr old conner whose dyeing, this is precious Ginger Blue, or the brave and witty Piper Beatty, and the remarkable Josh Mogren with CF, etc etc...see what I mean? Lets give CF a face...30,000 to be exact...
we have to do everything for a cure...
meeting all of you and learning of your loved ones has moved me so much this past week and i feel honored to be a part of your journey as you are a part of ours...

Please if you have CF, or a loved one with cf please email me a pic of them/you to and include the name, age, where you/they live and one thing they love the most to me...lets give CF 30,000 faces AND names


  1. I LOVE this!!!!! You'll have a pic (and info) of my Emily as soon as I get home.

    I never looked at the "other side" of it. I was lifted all week, knowing that you are getting love from near and far from your CF family. I never thought about you taking on all of our sadness and making it your own. But of course you do. We all do. It's what makes us charter members of this club.

    Yes, 30000 faces. Who can say no to that?

  2. My heart goes out to you and your family!!! We are thinking of you & your little guy!

    I've been reading your posts and have been very touched by each one. I think this is amazing that you are able to think of all the others while you are going through the hardest time of your life, I think it's a great idea...seeing 30,000 faces will really make a difference when sharing the story of our fight against Cf. I sent you pic of my daughter Savannah who is also fighting Cf.
    Thinking of you!
    Sandra Morse


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Did You Know....

There are over 100,000 people, the size of a small city, on the transplant list in the US.

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In the time it takes you to shower today, 1 new name is added to the US transplant waiting list.

From the time you woke up this morning to the time you wake up tomorrow morning, 18 people will die waiting for their transplant in the US.

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