DECEMBER 20 —

Well, this is a tough day, no question, but I have to mark it with a post.

Last week, I finally made time to visit the medical museum run by Mass General Hospital. I wanted to get a close-up view of the first heart-lung machine, which I’d been seeing through the window whenever I passed by. I wanted a stark reminder that modern medicine is still pretty new, that it is still—compared to the wonder that is the human body itself—quite primitive. I wanted to feel lucky to have had Caitlin for as long as we did.

The heart-lung machine was gone, swapped out to make way for other exhibits. But I found myself transfixed by something suspended and otherworldly: a protein scaffold of a human heart, the possible future of organ transplantation. 

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Photo by Harald Ott, MD

“This image from the Ott Laboratory for Organ Engineering and Regeneration at MGH shows a human heart in the process of decellularization––the cells are removed, leaving behind a protein scaffold. This experimental process may be an alternative to traditional organ transplantation in the future. By using the donor organ’s scaffold and seeding it with the recipient’s own cells, the new organ could overcome the risk of the recipient’s immune system rejecting a transplant.”

A miracle, a dream. Science offering so much hope and yet deepening the  mystery. Yes, the mechanical function of the heart can be reproduced and genetic manipulation is advancing, but what of consciousness, emotion? The seat of the soul? Where is all that? The source of the pain of grief.

Two years. Impossible.

I have not written here since July because I have been obsessively writing the book. My goal was to ‘finish’ by today and I’ve done that. I even had the pages printed and bound last week, so I could edit with fresh eyes. Here it is, sitting on Caitlin’s desk in her apartment. The photograph on my computer is from Christmas Day a few years back.

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It will be important for me to get this book of my heart out into the world. I haven’t yet figured out how to describe it––the word memoir is too vague and  ineffectual. I need to come up with a descriptive sentence or two that will convey all that I hope the book will deliver to readers. 

Yesterday, my friend Diane wrote and said she was finally making a print of her favorite photo of Caitlin. Andrew took it one day in Frick Park in Pittsburgh. Caitlin told me, “We must look insane out there on the trails, the wheelchair bouncing all over the place, but it’s fun.”

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Diane: Mare she was such a BAD ASS!!!
I loved that about her.
That’s what the picture depicts for me. All that she was inside.
Strapped to oxygen,
Hiking out in the woods,
resting in a place that in another life
she could have built or resided in,
smiling, living in the moment with grace and humility all the while being a BAD ASS❤️

I’m baaaad Kitten,” she liked to say, with a bit of a cackle. 

I’ve been looking through old texts and the uplifting thing about them is that as I read them, I am ‘in the moment’ again and she feels very present. 

11/19/2008
Caitlin: i am try try trying not to listen to Xmas music on the radio
but my persistent Christmas spirit is just bursting!
and i feel like if i keep it locked in any longer i am going to have a mental attack, cover myself in lights, and dance around the streets
thanks for the hat and gloves
Maryanne: hahaha
go ahead and listen
what hat and gloves
Caitlin: the ones you are going to buy me at j crew in about an hour
Maryanne: haha. okay merry christmas
Caitlin: thanks!

12/21/2009
Maryanne: happy balls are here
Caitlin: yes!!
Maryanne: i bought some wasik’s chutney spread and some cheese for christmas
Caitlin: NICE
Caitlin: oh i wish I’d known you went there
Caitlin: this is not good – i am being overly flattered. right now (X) and (Y) are both gchatting me telling me how beautiful i am
Maryanne: hahahha
Maryanne: what would you have liked at wasiks
Caitlin: (X) texted me last night “looking at your fb pics. you are beautiful”
Caitlin:  and now he’s going on again
Caitlin: umm, CHEESE
Caitlin: salami
Caitlin: pate pate pate
Maryanne: I can go back.
Maryanne: oh this pup ! is so cute. he’s on my lap looking up at me.
Maryanne: oh i have to go make the cookies……aaaah i wish someone was here to talk to me
Caitlin: i wish i was there talking to you and making cookies
Maryanne: i wish you were home.

These past 24 months have been tough, but Caitlin was tougher and she’s our example. She gets us through. Nick is busy with new projects. Andrew is teaching in Maine. Katie and Alvaro have moved to Spain for a couple of years. Sinead has moved back to Ireland, but continues to practice in London, part-time. Jess continues to raise construction funds for the Leo Project in honor of Caitlin and has raised enough to break ground on the land she purchased in Kenya!  Thank you so much to everyone who has donated.🙏🏽

In case you missed Jess’s announcement: “In December of 2016, Caitlin O’Hara died. She was thirty-three years old and my best friend. When I spoke at her funeraI, I promised that I would do something extraordinary. I promised that I would make her proud and I promised to keep her light and her spirit alive. Because of my own health situation, it took time to put everything together but – despite delay – I am proud to introduce The Leo Project in honor of Caitlin E. O’Hara.” 

She is in Mexico for Christmas and writes, “Today, I’m going to go from Spanish colonial church to church and light candles for my buddy.”

Nick and I are going to go see Bohemian Rhapsody. ❤️Freddie❤️ These are the days of our lives. 

I will end with a letter Caitlin wrote to her friend Renu, someone who had a successful transplant but certainly went through her own hell beforehand. I posted this once before, but such wisdom can always bear repeating.  ❤️

“The moments when I  have felt most free, most OK with what is happening, and least anxious, have been those moments where I am able to let go and surrender. Interestingly, those moments seem to work in tandem with my faith in myself.  I know I can trust myself to get through something, to hold on, and ultimately I can just let go of the rest.  I guess since we have no idea where we come from, and where that strength comes from…that true belief in yourself and your intent to be a good person is sort of divine in itself, no more or less divine than believing in something someone else told you to believe in. 

I have always believed in goodness and I know a lot of people say that, but it does feel undeniably essential, and I don’t question it. As humans we somehow know that we should aim to be good, and where does that come from.  ? If I can follow the fact that I can trust in the importance of goodness, then I can maybe trust that goodness will come of goodness…. if that makes sense. Kind of like karma points.  I have never felt like “why did this happen to me,” as I am sure you haven’t either.  It isn’t even because of some virtue that I feel that way, it just has never occurred to me to be “pissed off” about my lot in life, or to think that there was some unjust reasoning behind it.  Instead I honestly feel lucky sometimes that I have gotten to feel and experience things that others have to struggle longer and harder to learn.” –Caitlin

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Caitlin and her dear buddy Kenley, Christmas 2012

I post occasional Kitten photographs and words on Instagram, and anyone is welcome to follow me there. My name is my own: MaryanneOHara

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14 thoughts on “DECEMBER 20 —

  1. sharon

    Before I got to Dianne’s comment I thought – “Caitlin is such a badass”. Sending love this season and all days.

    Reply
  2. JULIE LITTLE

    Hi, MaryAnne – this is Julie Little (Fay)  How are you and Nick?  I think of you both so much and I pray you can get up each day and put one foot in front of the other; and that perhaps you are having less moments when that may be your only goal.  I cannot imagine your pain and I ache that anyone has to suffer like Caitlin and that parents have to try to survive after such profound loss.  I will never forget being in Maine for Christmas two years ago.  I was glued to my phone following your news.  For the rest of my life, I will remember where I sat in our house in Maine when I learned that she had lost her life.  I had not cried like that in so very long.  I was so hopeful that she would pull out of it.  I was surrounded by our children, with Larry and my mother with me, and I just wailed.  It was awful.  I will never forget how sad I was for all of you who loved her so, particularly my faves from Fay; Kenley, Jax, Allison, etc.  Hearbreaking. Thank you for sharing that letter from Caitlin to fellow transplant woman.  I really, really, really like her words here.  She sure wrote beautifully – like her mom!  ❤  Frankly – I love this whole message from you.  The words from your friend, where she calls Caitlin a "bad ass" made me giggle – because I could not agree more.  Caitlin was a bad ass even at a young age at Fay – with a solid following of strong young women.  Caitlin O'Hara was a legend in that tiny body of her and looking back at it warms my heart because that is a great label of many that describe your amazing daughter. I wonder if you can find from Caitlin's words below, a concept from which to form your own words (or use hers) for your new book.  I really like, "I have always believed in goodness and I know a lot of people say that, but it does feel undeniably essential, and I don't question it." "Undeniably essential"……WOW!!!  A mother carrying on the love we have for our children under all and any circumstance is also undeniably essential.  Maybe you can find inspiration from Caitlin's words.  Surely she left you many from which to choose.  Good Luck.  I look forward to reading it.  Sending love from VA.  Merry Christmas.

    Love, Julie cell: 703-389-1746 home: 703-323-8889

    Reply
  3. Victoria Cooper

    I love hearing her words… missing her all the time… thank you for sharing. Sending love and warm hugs. 💞

    Reply
  4. mjroseauthor

    Those weeks and days and nights, Catlin was my daughter too. I held my breath the whole time she was in the hospital, Doug and I hanging on every word that you posted, Maryanne, and oh how I cried on Dec 20th and for days after. You and Nick keep her spirit alive which wouldn’t be possible if her sprit wasn’t so big and bright and soulful… sending so much love on this sad anniversary. xxxx

    Reply
  5. Peggy Adams

    Keeping you and Nick and all who loved Caitlin in my prayers. We don’t know one another but I followed your blog as I know another young woman with CF……thank you so much for sharing Caitlin with us. Her words are profound. Wishing you peace at Christmas time and always.

    Reply
  6. Jane McCafferty

    An inspiring update here dear Friend. Thank you. Caitlin is still putting so much light into the world via her remarkable mom.

    Reply
  7. Nanci Sullivan

    Thank you for sharing with us this profound memories reflection of Caitlin and to let us know you have written the book on the anniversary of her passing from this world to the next but she with you always. It takes great strength to create book—a beautiful legacy and teaching life lessons for us all through Caitlin’s life. It was so kind of you to share too what everyone is doing now in living out their best selves and lives. I have no idea if you remember me or not from Pittsburgh but I helped to coordinate with you to come to speak at a book club about your book “Cascade” while you were living in Pittsburgh with Caitlin. I had to retire from my job late spring after becoming quite ill due to my lung disease, immune deficiency and adrenal gland disorder. I have been fighting hard to get to a place of reasonable health so that I may travel. It has always been a goal of mine to experience people, cultures, foods, art, music, etc. so I keep pressing forward. Be well. Keep us informed about the book and I am sure Caitlin’s legacy will continue in helping others through your talented writing abilities. What a gift she has left you and us. I am sure you have captured that gift through your book about her.

    Reply

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