Category Archives: transplant

JANUARY 19–Words from Jess

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Jess wrote a post on her own blog today. It’s beautiful and here it is:

Castro avoided over 600 assassination attempts throughout his life, but even he couldn’t hide from 2016. 

2017 is the year of the Rooster and the year that a person who has never held public office is slated to become the 45th President of the United States of America. It was supposed to be the year that I traveled to Red Square with Caitlin. The year of Harry Potter lungs and silicone implants. The year that we emerged with our matching clamshell scars. But it’s not and it won’t be.

This is my first time writing in months. Usually it helps to express and manifest the inexpressible but, in this case, it wasn’t helping. I have tried to make sense of what happened, to play each and every scenario over in my head. Also, everything that I ever wrote, I always sent to Caitlin with the flagrant subject line “DRAFT” – and she would quickly respond with candid feedback. She was my editor. 

When I returned from India in the middle of December – from the cacophony of Jaipur and the undulating hills of Udaipur – I immediately flew to Pittsburgh. Caitlin had been on life support for a few days while she waited for lungs. I arrived in the city of bridges, home of the Steelers and quickly enmeshed myself into the daily routine. We – Maryanne, Nick, Andrew, & I – took shifts, ensuring that one of us was always by her side in the CTICU. We held her hands, we massaged her feet, and we read Mary Oliver passages aloud – a small act which seemed to perk up her waning blood pressure.

Last week, I had this terrible moment where a dear friend that I met while living in Kenya texted me after returning from several weeks in Cuba. She wrote, “Did Caitlin get her transplant?” I froze. I slowly typed,“Yes, she did” and then added “but she died” after that. So awful. Little things like that keep happening. I don’t want time to move on because I am so afraid of forgetting. The only image in my head is of Caitlin in the ICU and I am having such a hard time remembering anything before then. There is a dichotomy – as Caitlin’s situation has made me less afraid of dying because I know that she is there (wherever there is) paired with this unyielding desire to live, to really live – for her. 

I left Pittsburgh on the morning of December 20th. I had to fly back to San Francisco for chemo but I planned to be in California for just a day or so. I left UPMC – the hospital – and texted the other three, “I’m en route to the airport with Jim but I will see you all in a few days for five little pig Christmas. I’m just a phone call away if you need anything at all. Don’t let leather jacket man steal my chair-bed, keep writing in the chapel book, and keep the sails up…

Later that afternoon, Caitlin died. She was supposed to live. She should have lived. She should have had the chance to use her new, perfect lungs; to see her oxygen saturation at 100%. But she had to wait too long for her transplant, and her body had been through far more than any should endure. 

Below are the promises that I made to her when I spoke at her memorial service:  

  • I promise to do something extraordinary. I promise to make you proud and I promise to keep your light and your spirit alive.
  • I promise to do all that I can to fix the organ donation system
  • I promise to plant a garden that will mean for many what Prouty meant for you
  • I promise to smile at sad looking strangers and to address little pups in your Henry voice 
  • I promise to always be kind
  • I promise to learn more about astrology and its intricacies
  • I promise to trust my intuition; to listen to my own voice and to be in a state of non-resistance
  • I promise to take care of your Mom and Dad and Andrew
  • I promise to order Watermelon Sherbet in July
  • I promise to always say Rabbit Rabbit
  • I promise to do something – once a day – in your honor
  • I promise to advocate for those who are unable to advocate for themselves; to always be aware of the plights of others.
  • I promise to listen to Joni Mitchell and to text you when Losing My Religion just happens to play on the radio
  • I promise to finally see a movie by myself. A good movie. None of that junk.
  • I promise to keep wearing giant pearls and continue adding to our tribal wrist collection
  • I promise to find the magic; the unsung beauty.
  • I promise to attempt to write a Modern Love that tells the story of our friendship; our matching clam shell scars.
  • I promise to have a day where the only words that I speak are “can I have a water and a muffin?”
  • I promise to live; to really live; to stay away from the surface and to go deep; deep where the lobsters go.
  • I promise to keep having faith. Faith that there is beauty in this sometimes tragic life.
  • I promise to never take my lungs for granted. I promise to cherish each and every breath.

And so, 2017 will be the year of Caitlin O’Hara. My ruby slipper, my person, my heart.

 

 –Jess

JANUARY 17–In the Redwood Forest

Below is a screenshot of Caitlin’s Instagram from our trip home in September, 2015, when she got to visit the Prouty Garden one last time.  As I’ve mentioned, the current Children’s Hospital administration made their decision to cut down/kill the Prouty Garden’s 65 foot Dawn Redwood tree this past December, the same day Caitlin went on ECMO.

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The dawn redwood is in the middle rear of this pic

Today, in Caitlin’s honor, Nick and I visited the Muir redwood forest here in California.

The last movie that Caitlin saw was at the Carnegie Science Center a few months ago, the recent “National Parks Adventure” at the Omnimax. From CNN’s review of the film:
Two of the most integral figures in national park history are also honored in the film — conservationist John Muir and President Theodore Roosevelt, who convened in 1903 at Yosemite National Park. Their famous three-day camping summit under the stars in a giant grove of Sequoia trees is re-enacted by a pair of dedicated tribute actors.
“That meeting [between Roosevelt and Muir] is often regarded as the most important three days in conservation history, so we knew we had to include it,” says MacGillivray.

“They believed that nature was of spiritual value, and that you could get more out of it by not changing it. It was a unique point of view then — and one that people might take more for granted now.”

Like anything so natural and overwhelming to puny beings like us, photographs cannot do justice to how it feels to walk there among our earth’s tallest living things. But if you’ve never been, try to go in this lifetime. The forest is like a cathedral–hushed, and filled with shade and light.
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Nick and a redwood

At one point, Nick opened his knapsack and took out the photo of Caitlin that he’s been carrying on this trip.

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This is quite a large photograph but looks like a 3×5 against this tree.

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He also brought the religious gifts various people had given to Caitlin while she was sick and which hung on her IV poles in the hospital and during her surgeries.

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It’s 4 weeks today, exactly, and as I write that, it hits me all over again that it is true.

But Jess is here, and we love her. And we saw Kenley, too, last night. And read aloud a wonderful note we received from the kids’ former headmaster at Fay. And basically went on living, as impossible as that seems to be to do.

–M&N

JANUARY 12–A Sampling of Messages

People are asking how Nick is. He’s not on social media, so it’s hard for people to tell. He’s up and down, as am I, but we are a pretty seasoned see-saw act, and we are doing okay.

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 Amazing, but we actually can look somewhat normal

We do both want to say how very grateful we are for all of the wonderful messages we are receiving. They really help….like writing on this blog helps, like anything that keeps Caitlin close helps. We are going to share a couple of them here, with thanks to the people who’ve given us permission to do so.

 

from Meghan Greenberg Lockwood

About Meghan: We have such a strong memory of dropping Caitlin off to her first day of school at Fay, and of Meghan making a point of greeting Caitlin and offering to walk in with her.  Meghan’s note was delightful to receive because it reminded us that 1) Even though 33 is young, Caitlin was around for a long time, and 2) She had mischievous memories we knew nothing about.

Dear Maryanne and Nick,

I wanted to let you know how much I have been thinking of you, and of Caitlin. So many memories have come back to me these past several weeks, memories that I didn’t know I had. The Caitlin I knew best was elementary and middle school Caitlin, and as you know, she was what my grandmother would have called a hot ticket. In the spirit of keeping her light alive, I thought I would share a few of these memories.

During art class, Caitlin would sing very dramatically, “I’m off to New York and I won’t come back till Saturday night, after the SHOW-OW-OW!”

Other times, she would burst into Unchained Melody. She’d be sitting quietly and get a little glint in her eyes and then belt, “OHHHH my LOVE my DARLING, etc.”

At sleepover parties, after pizza and cake, she liked to get under the table, crawl around, and then grab someone’s feet and tickle them. She called it “The Game of Not Knowing,” because you never knew when your feet were going to get grabbed!

I remember one time she was at my house for a playdate recounting to me and my mom an amazing meal she had had. She turned to my mom with wide eyes and said in a conspiratorial stage whisper, “I had to unbutton a button!”

Early on in our French career, Madame Naumes told us that the letter ‘h’ was not pronounced in France. Caitlin looked horrified and said, “But then…how am I supposed to say…I live in…BABY DONKEY LAND?!” (Get it? Ashland, but the h is silent…)

When we did the Explo day camp at St. Mark’s, our little crew performed Ace of Base’s The Sign as a dance number, and Caitlin made a sign to hold that said Slippery When Wet. Even in the awkward middle school days, she made everything she touched cool. I remember a cute boy from Texas named David who had the biggest crush on her!

On kitchen crew, one of her favorite things to do was to make mixed drinks from the soda machine, like different combinations of Sprite, orange soda, etc. I remember her telling me in the mornings about how she had a new recipe in mind for that day.

On a less silly note, even during those adolescent years when everyone was complaining about their parents, I don’t remember her ever joining in except for the mildest of jokes about her mom handing her a banana and saying, “Eat your potassium, Caitlin.” She had the coolest parents, and she knew it, and she loved you two so deeply her whole life.

With all my love and most heartfelt sympathy,
Meghan

P.S. Maryanne, my book club asked me to pass along their condolences. They loved reading Cascade and meeting you, and I know they’ll love reading whatever is next.

P. P. S. On the topic of the signs you’ve been experiencing, have you read this essay from 2015 by Lisa Chase? I thought it was amazing.
http://www.elle.com/life-love/news/a30986/losing-my-husband-and-finding-him-through-a-medium/ ****

*****More on this later

from Betsy Kemper French

About Betsy: Betsy is a wonderful writer and fellow Emerson MFA grad. We actually never had any classes together, but we’ve somehow kept in touch over the years. She is a beautiful writer and thinker, and this letter really affected both Nick and me. Plus: kittens.

Maryanne,

I have been thinking about what to write to you.  It’s silly—there’s no obligation, and I’m on the periphery of your life.  I never met Caitlin.  I don’t know your friends and family.  And yet, I feel a powerful connection to your story.  It’s not just me.  Friends of mine who don’t know you at all became readers of your blog, pulled into this miraculous, tragic, and painfully beautiful journey.

I’ve written before about connections—between people, animals, nature, events.  It can’t be scientifically explained, but they are everywhere, and I feel the most peace when I wonder about them.  Your writing through this blog has allowed me to feel so many connections with people I’ve never known.  It’s like what a great novel does: we get to know and love the characters like they were in our own lives, like we have had experiences and memories with them.  You’ve allowed that with Caitlin and all the other “characters” in your “story.”  Yet, all of these people are real, and so our connection to them is real, strengthened by your honest writing, the pictures and videos, the text messages, the program from her service.  So, is literature allowing us to mimic these connections that we should have in our real lives?  So much about your writing has made me ask big questions.

Here’s one way my connection with Caitlin has affected my life.  The other night, my youngest daughter, Charlotte (you may remember: “I AM THE BOSS OF ME”) was having trouble getting to sleep.  She is so bright, creative and funny, but suffers from a lot of anxiety, even at the young age of nine.  I sat on her bed taking some deep breaths with her.  Her fear makes me anxious too, and I don’t want her to feel that.  So, when I’m trying to stay calm, I often image an angel—yes, the stereotypical one with the wide white wings, surrounded by a golden glow—standing just behind me, putting her hand on the middle of my back.  I imagine her light coming into me and calming me, and then that light traveling to Charlotte as I stroke her head.  The other night I had that same image, but this time—I hope it’s okay to tell you this—Caitlin came to mind.  It was her light and strength that made me feel good and steady. It was her light that traveled from me into Charlotte’s  little body.  I hope you don’t feel this is “using” her story or exploiting it in any way.  But through your writing and hers, you created a stunning work of art that offered her to all of us.  St. Caitlin.  St. Kitten.

But it’s not just me.  My friend Kate Kertscher follows your blog as well.  Her oldest son has been asking for a kitten of his own for some time.  Kate has three kids and a large dog and an old cat and a very busy life, and was hesitant about adding another creature to the chaotic mix.  Yet, the other day when I spoke to her, she said they decided to go ahead with it.  She said, “I just thought of Caitlin, and it made me realize how silly I was being! Of course we should get another cat!”  **** Seems appropriate too, that it’s a kitten.

So, we are carrying her too, in little ways, but still.  Thank you.

I wish I could give you something back, some advice, but I can’t.  I haven’t been through anything close to your loss.  I haven’t been a mom as long, or a mom who has had to deal with such tragedy. But I can still say what comes to mind, what I hope will help as you make your way through these raw, painful, early days of loss:  Stay close to nature, Maryanne.  The kind of nature where you can taste the dirt and feel the salt breeze on your skin.  Smell the rain or lightning.  Feel the snowflakes on your face.  That is where I most strongly feel the people I’ve lost in my life—even if they weren’t nature lovers themselves.  I know you will feel Caitlin in the silent majesty of those redwoods, where it seems time has stopped and their powerful size reminds us we are not the center of the world, but a small part of something unimaginably intricate and beautiful. The souls of those trees reach out to ours—all the same somehow.  I bet you will feel her soar through you when looking at the gorgeous coastline, the sunrises and sunsets, whether in California or here at home.

And keep looking for all those signs of positivity and love.  They will always be there.

My thoughts are with you and Nick and Caitlin, wherever she may be.

XO
Betsy

*****Update: the boy got TWO kittens

from Ellen Tarlin

About Ellen: Ellen and I met at Emerson when Caitlin was 8. Ellen watched Caitlin grow up. This is a snippet of a recent note.

I remembered that when I was raising funds for my friend who had brain cancer, Caitlin donated. And when I was spreading the word about fundraising for my friend who had lost her husband, Caitlin donated. She was the last person I would have asked for money but one of the first to give. 

Love and peace,

–M and N

JANUARY 9–Portals to Real & Close

After I wrote about signs the other day, a line I wrote in Cascade came to mind, to haunt me:

That was the thing about signs. You could read them any way you liked.

I thought about that as I went to get a pedicure in my hotel. I actually don’t really enjoy pedicures. I consider them to be maintenance, and I like them to be quick. Well, this was the slowest one in the world—-it took almost 2 1/2 hours. I tried to relax and enjoy it but all I could think of was how horrible and ultimately needless had been our darling girl’s partial amputation. I kept picturing us getting pedicures at various points in our life, at MiniLuxe in Boston, or on vacations in Miami, and later, when she had to drag the oxygen tank in with her. Her last pedicures I did myself, on her bed, because she no longer had the energy to go to a salon. The past year, I gave her leg and foot massages almost every day because it was the only thing that gave her relief from the near-constant painful aches she experienced.

I spent a lot of time with those legs. I have been mourning that left leg perhaps more than I should. I didn’t want to start crying in front of the pedicurist, so I tried to distract myself and halfheartedly looked through the basket of predictable women’s magazines. But—a surprise. Tucked in there was a New York Times Magazine from the end of November, with a cover story on Martin Scorsese. I’d brought that particular one into the hospital to read, and to give to Caitlin, because she had a deep appreciation of his movies. When she went on life support and we had to clear out her room, it must have been thrown away.

I’d forgotten about it.

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On Faith:

“In his new film, “Silence,” Martin Scorsese returns to to a subject that has animated his entire life’s work and that also sparked his career’s greatest controversy: the nature of faith.”

I read the article with interest and an ache in my heart, wishing Caitlin had been able to read it and discuss it with me. I wondered what she would have thought of the film. It seems to have received quite mixed reviews, but Caitlin’s opinion would have been the opinion I would most been interested in. She had a keen ability to analyze and to consider, with empathy, the most complicated subjects. See things other people didn’t see.

It’s a wonderful thing when your kid grows up and you can step back and marvel.

Her first day in the CTICU, when she was still able to speak, her nurse mentioned having been to Mass the day before.

Caitlin: “Do you believe in God?”

Nurse: “I do.”

Caitlin: “Why?”

Nurse: “Why not?”

I wish I had the ability to remember, in detail, all that Caitlin said, but basically she talked about how she believed in something greater but thought that the various religions hadn’t gotten it right.

Now I think: Now she knows. All the stuff we talked about is no longer theoretical for one of us.

And I’m going to have to figure out faith for myself.

Backtrack: ‘Have Faith’

When Caitlin was 11, we realized, nearly overnight, that a stealthy mycobacterium had completely ravaged her left lower lung. The lobe needed to be removed. It was the only hope of stopping the organism from invading the rest of her lungs. There were many unknowns and absolutely no guarantees.  One day, before the surgery, I was sitting in my living room sobbing, sick with fear and dread, when I heard a voice—-clear and strong and female. The voice said, “Have faith.”

I sat up straight and looked around.

I thought about how it would be very easy to doubt what I had heard but that I must always remind myself that I had indeed heard it.

During these past 3 years, I hoped to hear that voice again. I never did. One thing that did happen, though, was that about a year ago, I was doing chest PT on Caitlin when I heard her voice, not her real voice, clearly say, “I’m dying, mum.”

I tried to unhear it. Tried to “have faith.” Hoped that that long-ago voice had been ‘good for’ forever.

Caitlin wrote about faith here in November:

Tolstoy had an existential crisis where he couldn’t figure out how to have faith…and decided the only logical thing he could do was to kill himself –  He spiraled out of control… he couldn’t think himself out of the problem of living, the meaninglessness of life, and the uncertainty of faith. He thought that if life had no meaning, which his reasonable mind believed because he could not prove the opposite, then the brave thing to do would be to end it. But he did not want to kill himself at all. He finally found his kernel of faith exactly right in front of him. His desire not to die, to keep on living despite the fact that he KNEW he was going to die, was a kind of miraculous leap of faith that we all do every day when we wake up. He figured the fact that faith even exists at all makes it a truth in and of itself. And he went on. (you can read this in his “A confession”).

I finished reading the Scorsese article as the technician finished the pedicure. Then I went out onto the beach. Down near the water stood a big flock of seagulls. I started to pass them, telling myself I couldn’t desperately look at every seagull you see, hoping for a sign.

But I turned to watch them anyway, and saw that the one closest to me was standing on one leg. He stood on it for so long that I thought perhaps he only had one leg. None of the other gulls were standing like that. I kept watching and waiting for him to move and found myself getting all choked up and happy and talking to Caitlin. She felt real and close for those moments and I thought, This is what you’re going to have to do: take whatever portal is open, whenever you can. 

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A Santa Monica gull

–Maryanne

JANUARY 4 –Bird and Bindi

I can’t even begin, right now, to sort out all of the almost supernatural occurrences of the past weeks, write them down, pass them on. I know I am meant to sort all of it out, in words that make sense, to ultimately help other people. And I will do that. But right now I’m super tired.

Still, to remind those who care: there is work to be done. As everyone has been informing me, France is now one more “opt-out” country—-meaning you’re an organ donor unless you opt out. We are going to work on fixing as much of the broken transplant system in our own country as we can. I’m grateful to everyone who has volunteered to be part of the army, and we will be in touch.

For now though, Nick and I are going to California. My wonderful brother will be warming the hearth fires here, minding our house, so we don’t have to worry about leaving it untended. Caitlin’s tree will be up through Twelfth Night and beyond.

California is a place Caitlin and I had planned to visit ‘after transplant.’ (How easily that phrase had become part of our everyday conversation; seems sad and naive now, but I’m grateful for our optimism. It kept us going.)

Oddly, neither she nor I have/had ever been to California, so we will take her with us in the only way we can: spiritually. We will drive up the Pacific Coast Highway, stay in Big Sur, and eventually visit Jess in San Francisco. We will see redwoods, and honor the one so foolishly cut down by the arrogant and sorry young souls who make up the current administration of Boston Children’s Hospital.

A few years back, in her beloved Paris, Caitlin bought herself a tiny, bird-shaped ring. It became one of her most treasured possessions. I just couldn’t bear to put it into the

<< coffin, horrid word>>

Instead, I’ve tied it to a necklace of mine. I added a red bindi from the little sticky-pack Jess brought back from India. I put the bindi in between the bird’s wings. I will wear it on our trip and Caitlin will be with us up at Big Sur and in San Francisco with Jess, and with us among the redwoods that stupid humans haven’t yet destroyed.

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Bird and bindi

My niece Emily wrote this to my sister the other day:

Know what’s so strange? A few days after Caitlin passed I heard this poem called ‘the art of losing’ on an NPR podcast and it felt really significant to me so I looked it up and saved it and now I’m sitting here reading the writings in Caitlin’s pamphlet from her service and that poem is in there

Later, my sister wrote:

Today is my first day back at working out. I always put in a podcast to keep me on the treadmill and it turns out the first one in my queue was the one that ends in that poem. ❤

These are the coincidences that are not coincidences.

The only omission in the service program was the title and author of the quite-famous  poem–which is actually a form of poem called a villanelle, a form that itself, is very hard to master….

ONE ART

by Elizabeth Bishop

The art of losing isn’t hard to master;
so many things seem filled with the intent
to be lost that their loss is no disaster.
Lose something every day. Accept the fluster
of lost door keys, the hour badly spent.
The art of losing isn’t hard to master.
Then practice losing farther, losing faster:
places, and names, and where it was you meant
to travel. None of these will bring disaster.
I lost my mother’s watch. And look! my last, or
next-to-last, of three loved houses went.
The art of losing isn’t hard to master.
I lost two cities, lovely ones. And, vaster,
some realms I owned, two rivers, a continent.
I miss them, but it wasn’t a disaster.
—Even losing you (the joking voice, a gesture
I love) I shan’t have lied. It’s evident
the art of losing’s not too hard to master
though it may look like (Write it!) like disaster.

–Maryanne

JANUARY 2–Blue Moon

It is a quiet house here tonight. Jess is on her way back to California. Andrew has gone home to Maine. It was a difficult day. We were going to go into the Boston apartment but never did make it out of the house. All I could do was flop from one surface to the next and cry. I mainly lay on the couch in the family room near Caitlin’s tree, TV tuned to a favorite movie, long-ago DVR’d, which Caitlin and I watched half of this past summer when we were home. The Remains of the Day. One of our favorite movies, one of my favorite books.

I let it play on from where we had left it in August, midpoint: all the melancholy of Mr. Stevens’ trip to the west country to try and reclaim all he had lost. The meeting, after 20 years, between Miss Kenton and Mr. Stevens is all about regret and the inability to change the past– ‘Blue Moon’ playing in the 1950s background, all that poignant, post-war sadness.

It reminded me that before Andrew left today, as he packed up his truck, he found a note from Caitlin in his glove compartment, a reminder for all:

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