NOVEMBER 16–& the Anniversaries Begin

I know all the dates.

Yesterday a year ago was the last night Caitlin would ever sleep in her own bed. That night, she was so weak she did not have the strength to sit in the bathtub and let me wash her hair. I was so alarmed I emailed her doctor at 10pm.

On the 16th she was admitted to the hospital for the last time.

I wonder now, how many times in her life was she admitted to a hospital? I don’t know that I could even guess.

After I went home for the night, she texted me

Caitlin: Had to get an echo. Feel sick. And tired and can’t breathe. Love you. Hope you get rest.

Text message: 11/17/16 9:14am

Caitlin: My score is 70

Maryanne: Oh my God. Oh wow. What happened?

Caitlin: Dr hayanga came in. Because of my oxygen

Maryanne: What did hayanga say

Caitlin: He was optimistic. Very. He was Iike, we expect to get offers.

Caitlin: Andrew says we HAVE to be hopeful

Maryanne: We ARE hopeful. This is going to happen.

I drove to the hospital that morning with a light, happy heart. It was finally going to happen. The head surgeon came in and said he had been up all night fielding offers for her. None of them were a match, but with so many offers coming in, and with her score so high, a match seemed imminent.

She was on a lot of oxygen but she was stable, and felt much better than she had at home. Finally, finally, finally, after 2 1/2 years, it was going to happen.


Yesterday, another CF tragedy occurred. Mallory Smith of California, who, like Caitlin, could only be transplanted at UPMC and moved to Pittsburgh to wait, received her transplant in September. Her recovery was hard but she was recovering. She was on the other side. Just a few weeks ago, she celebrated her 25th birthday. Soon after, when the docs removed her last chest tubes, she said, “Today is the happiest day of my life.”

Then a pneumonia took hold in her chest. Without an immune system to help her body fight the infection, she became sicker and sicker. The cepacia bacteria that had damaged her native lungs began to destroy the new lungs as well.

We were all hoping for a miracle of science for Mallory, but she slipped these surly bonds yesterday afternoon, her most beloved people by her side.

She was brilliant and kind and everything wonderful. A few years ago she wrote an essay that contains these words:

My life is a miracle because I should be dead. Your life, even if you’re healthy, is a miracle, because your existence is the result of stars exploding, solar systems forming, our Earth having an environment hospitable to life, and then, finally, millions of highly improbable events accumulating over millions of years to bring you, a capable and conscious bag of stardust, to the here and now.

Acknowledge that miracle. Existing is a rare gift, a privilege. It isn’t a right. Think of all those atoms that never ended up inside a human body.

So pick something, do something, to respect that miracle. Step up to the challenge of making your own meaning out of mere matter. Let the whole, the human, be altruistic, be greater than the sum of the parts, the selfish genes of our genome.

Set an intention and get after it feverishly, frenetically. Give back what we’ve taken by paying it forward, save a life, smile at a stranger, climb a mountain leaving nothing but footprints, inspire a child, take care of your body, bring happiness through laughter, plant a tree, and sometimes, just breathe and exhale a little bit of calming energy to your environment.

Give back in whatever small way you can, any time you can, because we are not small. No one of us can do everything, but all of us can do anything. Do it because we have survived, and that is a miracle. Do it because why wouldn’t you? Do it to justify your life.

I hope Caitlin found you, Mallory.

Full text:

And we are big (spoken word unspoken), by Mallory Smith

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Author: kittenupdates

I am the author of CASCADE and LITTLE MATCHES: A Memoir of Grief and Light

13 thoughts on “NOVEMBER 16–& the Anniversaries Begin”

  1. Such sadness to hear of Mallorys slipping away from this world xx
    Caitlin and Mallory…have an amazing reunion in your New world ❤❤

  2. Maryanne, I knew you would post today. I have an uncanny ability to remember dates, and as you’ve written so often about November 16th being Caitlin’s last admission it was stuck in my head.
    I started thinking about her and you yesterday. I remember. I wish that I’d know you both in better times. I never even met your precious daughter. I know that no words can begin to assuage the pain and disbelief over what went down and how. But know that there are people like me, in dreary, rainy Massachusetts like you, who are forever changed in some way by your daughter’s story and her heart.
    My love and heart go out to you. It’s the beginning of the hardest season for many, and likely the unspeakably most trying for you and your family. Know that you are always in my heart and I think of you often.
    I’m so sorry. This life is often beyond comprehension. I’ve learned to love more. I wish I could say that I worry less, but with the world as it is, I guess we can just move through it. And worry less? Hoping to.
    xoxo, which is so inadequate.

  3. My heart breaks for Mallory and her loved ones.  Her insights were so wisefor a young lady. I pray Caitlin is welcoming Mallory with her beautiful smile and gentle spirit.  Love you

    Sent from my T-Mobile 4G LTE Device

  4. Maryanne and Nick….with great admiration for your strength do I write this note…I met Caitlin as a baby …I remember going to Aunt Kathy’s house to meet you guys and somehow a window broke and you placed a diaper in the broken glass pane…then Maryanne was sitting at the kitchen table, holding Baby Caitlin and admonished Nick to hold her so she could enjoy her warm scrambled eggs…something to me you guys were sleep deprived…yup, learned that one without Baby Ashton….so, moving forward, I have read everything you put out in the universe, and personally, your journey has made my life better…you guys inspired me so much, and I do not think you even know it…

  5. I feel these anniversaries encroaching too. Memories of all the hope and all the tremendous courage Caitlin and you showed. And Nick. All the heroism and love. And then the shock of the loss. Patrick said to me completely out of nowhere today, that he found himself feeling her presence and he lit candles and prayed to her. First time but I bet it won’t be the last. ❤️

  6. They are laughing and breathing and bigger than life together….. You always in our thoughts and prayers. xo

  7. Dear Maryanne,

    I have to put a waiver and apologize here, for this will be a lengthy read! I’m almost embarrassed, but here goes ~

    Thank you for sharing Mallory’s story and her beautiful thoughts. They will indeed bring about the much needed awareness. Her family must be very grateful for you having shared her story. She and Caitlin seem to have shared the same magnificence of spirit and such high intelligence.

    It was probably a month or so ago, that you’d posted something that I’ve pondered for a while and have now had time to form my thoughts in regard to things you’d said.

    Certainly Caitlin was human, but it seems to me now that she was and now is truly more of a force. From what is quite evident, she was possessed of only the finest of intentions. It seems as though through you and not in a only way to release your sorrow, this has been a gift in the creation of increasing awareness in others and will thereby save lives.

    I believe she knew her destiny and though she had hopes for a longer stay on this plane, freedom is the most important thing which all humans need, be it physical or spiritual – to be allowed usage of one’s mind, to express and to experience, in order to share all we have to give. Caitlin expressed and possessed this need, in rendering both in lengthy and also the insightful snippets of her thought processes, her heart’s desires, her dreams, her happiness, her divine love of all things – even her pain.

    How is it someone who is a total stranger could impact so many lives? She is still teaching us and now through you. You had mentioned something about continuing to write about Caitlin and seemed to question it. Allow it to continue – be her voice, as she had yours.
    Her love is far reaching. It is Caitlin’s Legend…

    How blessed are those who were part of her physical world – and for those of us that were so fortunate to have been touched, if only by her spirit – then and now – she still lives and loves and is soaring in her new life. Thank you for bringing this angel to earth and for sharing her with us still. You are both life giving.

    Being your beloved daughter, she will remain the biggest part of you and your soul forever. She is not gone from you and never shall be. I can’t help but feel she was meant for something greater than to remain on this plane too long. Not many who pass on, manage to create or maintain such interest – rendering a continued outpouring of devout love and tremendous support for you all. I feel she was intended to impart her innate wisdom and love and to transform not only herself but assist in the lives of so many others. Her force is real – it is magnetic.

    Having never met Caitlin, and only seeing photographs of her, how is it she manages to touch lives in such a profound way? I think you do know your daughter was slated for higher purposes. I think this what is driving you and what your true aim is. You will find peace when you realize her true destiny is in bringing light, awareness, love and understanding through you, your book consisting of her words, your words and the abounding wisdom you have collectively possessed and will continue to share. She isn’t gone from you. She is still in this world, just with more ability, through you and her essence which is even more powerful now. You are giving her life again and she is there to prompt you, guide you and comfort you. You will see. You will see her again. One last thing I would like to share, and which I do question. A few days ago, I caught a glimpse of someone on tv and it shook me to my core and actually brought me to tears. She could’ve been Caitlin’s twin. How could Caitlin touch my heart to the point that I could feel such sadness and loss of a complete stranger? It’s confounding but this is the evidence of her power and her force – the absoluteness of her strong earthly spirit that can ignite love in strangers. Imagine what she’s doing now? I have no doubt she’s far more than a guardian angel. She is something much more divine. She is soaring to such heights yet I feel she is still here with you and guiding you to write. She’s certainly inspired me – a complete stranger. Having friends who’ve lost children, it is never easy to provide or offer comforting words. Being I am able to retain a certain level of anonymity here, makes it easy for this outpouring plus human emotions I’ve had in terms of your loss as well as for those of close friends, which I’ve held inside and never allowed myself to say or write until now. Sorry for the rant, but I felt a need to express these thoughts and I’m hopeful that they’ll bring you some comfort and joy.
    Be happy for your angel 💞 She is right next to you!

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