Caitlin was actively listed for a lung transplant on April 24, 2014. We were ready, expectant, full of hope.
She kept herself strong and she kept herself busy.
She was grateful.
She had plans.
We never, ever expected that she would have to wait 2 1/2 years. But when she went into the hospital for the last time, with her high score, she was told that offers were coming in. We figured it would happen any moment. We were excited and lighthearted, and on the night of November 20, she asked me to push her chair through the hospital as fast as I could, to music.
In a just world, she would still be with us.
ORGAN DONATIONS ARE DESPERATELY NEEDED
Spread the word, far and wide.
9 Lives Notes 
We do & we will continue!❤️
I pray for you and Caitlin always. We will never forget her.
Everything you write resonates with me, For my Jenny who died suddenly before listing became a reality and for Alex who is on that path towards a transplant at Cleveland clinic. It is strange bond that we all have as parents who live with CF and I sometimes feel it is hard to share these thoughts with families who haven’t experienced CF. So thanks for continuing to write – it means a lot. Mike
Of course I will spread the word. I started doing so the moment I starting reading about Caitlin. My heart aches for her and all that she went through and for her dreams that will never come true. I hope it gives you some sense of peace knowing that Caitlin has indeed made a difference in the lives of so many people. Wouldn’t it be wonderful though if we could bring back to life those we have loved and loss.. Thank you for continuing to write. Peace and love for you and Nick. If you ever need help with you project of spreading awareness of the need of organ donors, I am all in and all you have to do is ask
Thank you for commenting with your own story, and I hope all goes well at CC. xo
Thank you so much. It’s a tough road, and made tougher by the fact that everyone experiences it differently. ❤
So beautiful. Such a big heart. ❤
Caitlin’s sweet dreams for the future pull at my heart. Thank you for reminding us how important it is to share her hopes and messages of urgency.
Very powerful message!
I know you dislike negativity as do I. But the more I see of Caitlin and you all the more wrong it all feels. I keep thinking of the squeaky wheel phenomenon. I’m a native New Englander. We don’t complain (well, mostly). I don’t know.
My husband is looking at a position at UPMC and I’d be thrilled if it worked out. I want to walk where you walked. Be where you were.
It’s also funny because in early 2014 we started the road to discovery of our daughter’s autism. She’s high functioning, which is a blessing and a curse at once. I look at photos of myself from three years ago and I talk with my husband about it – clearly we’ve aged a disproportionate amount in the past few years.
I think of you a great deal, and send all the love I have. I hope that my comments don’t sound as obtuse and ridiculous as they do to me when I read them. xoxo
Thanks so much for all of your supportive comments. There are flaws in the system, for sure, but the real problem is not enough donors. Caitlin would have squeaked, but not if it meant taking lungs away from someone who was needier.
Of course, did not mean to imply that at all…definitely not enough donors. I’d love to help change that. I suppose I can only start with those close to me. If you have any ideas for ways to help please do let me know.
Thank you! xo
I wear my red kitty slippers from LLBean, and every morning when I slip them on, I think of Caitlin and wish she had the chance to smile when she put them on,too. I don’t know why i picked them out this fall, but I like to think it was keep her memory with me . . . .
I love that! I returned the red kitty slippers and got them in my own size, and it makes me happy to wear them.
This last post brought everything back and I burst into tears. So powerful Maryanne. So heartbreaking. So important to keep telling this story. So profound to see that last picture of Caitlyn! Tears tonight. Sending love.
Oh Maryanne. It is just so heartbreaking. Every day I cry over Winka and every time I do I think of how much harder it is for you. xxx
XOXO Sweet Winka