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“It’s part of why the idea of souls makes sense to me. This place is just like a ropes course for souls. A learning center. It never changes and the collective body of humans can never sustain their progress too too much or else there is not enough to challenge the souls. Imagine all the people living life in peace ✌️ John Lennon – well that wouldn’t really work if you believe we need to be challenged to grow.”  —Caitlin O’Hara

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Christmas, 2012

JULY 31–From Martha’s Vineyard

If someone had told us, last summer, that Caitlin would get her transplant and that we would be celebrating her next birthday on the Vineyard, we would have been overjoyed.

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Aquinnah cliffs

Caitlin loved it here. We came here for two magical weeks after her months in the hospital when she was 11. There were teenage years visits to Uncle Mike when he lived here part-time. And during their early twenties, she and Jess would stay at Jess’s mom’s house on the island for restorative weekends. ‘We don’t party,’ Caitlin would say. ‘We drink milk, eat pie, go to Lucy Vincent, and sleep.’

Soon Nick and I started visiting more regularly, too.  The last time we were here, in 2013, Caitlin was independent and daytime oxygen-free. Obama was our president. It is truly bittersweet to be here, in every way. But the island has welcomed us.

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Meow, meow says the other window.

We are staying in a house we found as if by divine intervention—a house named LovingKindness Retreat, owned by an angel of a woman. 

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The house has a lot of bird imagery, and the gardens and trees are full of birds.

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We decorated it for Caitlin.

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Lots of old pics of Caitlin & Katie, her almost-sister

JULY 29

On Saturday afternoon, we hosted a gathering of some of Caitlin’s closest friends. It was so special, Jess’s very good idea. 

I wish I had thought to get a group shot of everyone. But here are some favorite faces.

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Jacqui, Kenley, Mieke

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Getting ready. Andrew, Auntie Di, me, Hen

After dinner, everyone received an individual pie with one gold leaf candle, a glittery golden bird, and a little box of matches bearing photos of Caitlin on the Vineyard. I asked everyone to ‘please light your candle and make a wish for Caitlin’s spirit and for your own.’

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The beautiful pies from MV Pie Chicks

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Carly, Shelley, me, Kate Ryan

 

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….and remembered happier years.

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JULY 30

Caitlin was born on the 31st at 1:17am, but I spent every minute of July 30th in labor. It’s always been the day where I reflect the most, the day that feels most like her birthday.

 

JULY 31

After she was diagnosed with CF, on August 1, 1985, I never again took any birthday for granted. But I’m grateful for those two years of ‘ignorant bliss,’ when we thought she was just like any other baby.

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From the attic. We never wanted to erase it.

 

33 to 34

On Mondays, I get an email from something called ‘Joe Photo.’ I don’t remember ever signing up for it, but I like it because each Monday brings an image of some random beautiful spot on the planet. This morning I opened my phone just as 7:33 was turning to 7:34. My Joe Photo pic was the first thing in my inbox, and here it is.

 

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–Maryanne, and with love to all from Nick

 

 

 

 

 

 

 

 

JULY 10 — The Miracle of Video

In the past hour, I’ve heard from a few people who said how nice it was to read Caitlin’s words, to “hear” her.

I’m going to share a few snippets of iPhone video here.  I often think that not long ago, people didn’t even have photographs of loved ones. All they had were drawings (if they were lucky) and memory. These are comforting when I can bear to view them. 

*Click HD in the lower right corner to enable HD quality.

Most of the videos are of Kitten joking around. She had a great sense of humor.

The next one was a year ago, at the Andy Warhol Museum. We both did “Andy’s Screen Test,” where you stare into a camera for 3 minutes. Playback is 4 minutes.

This was the first go. For some reason, Caitlin decided she wanted to go back and do a second one. She let her hair down and then, seemingly presciently, threw off her oxygen and smiled at the very end. We used the entire four minutes to conclude the tribute film

 

Pretending to be an old washer-woman, at our apartment in Pittsburgh. This was the fifth take. She kept laughing.

 

More joking around:

JULY 10 — Announcements

The Memorial Service

In December, we barely knew what we were doing as we quickly put together the most beautiful funeral service we could. We wanted to include everyone who wanted to come. But the chapel at the cemetery was tiny. We could only accommodate 100 or so people. Plus it was the holidays. A few dear friends were away and we didn’t want to put pressure on anyone to come. So we held our small service and I announced that we would have a big memorial service at some future time.

But honestly, the service on December 30 could not have been more perfect. The large, luminous portraits of Caitlin gracing the walls, the stained-glass windows, the music, the friends who spoke, Uncle Mike’s tribute film, the service program, the atmosphere–all was perfection and we can’t imagine repeating it.

So there will not be a memorial service, per se. 

 

A Dedication, Instead

From the very beginning, Nick knew that he wanted to build a private mausoleum for Caitlin, one made of stone. In December, he found a beautiful little knoll at the cemetery and arranged to procure it. He originally planned for the new structure to be ready in July, in time for Caitlin’s birthday, but instead we had to deal with six months of red tape from the town. At long last, we have now received permission, and Nick will build something beautiful, magical.

We are collecting heart-shaped rocks to use in its design and construction. We found a few on the beach at Provincetown last week.

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And others have already started collecting them for us!

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If you would like to contribute a heart-shaped rock to Caitlin’s memorial, we would be honored to include it. The address is 11 Cordaville Road, Ashland, MA 01721

At some point after it is constructed, we will have a dedication of some sort. I will post about it when we do. I’d like to think it could be soon, but…….

 

What the Medium Said

One of Caitlin’s friends, back in January, visited a medium, as I’ve mentioned before.

Medium to friend: Do you know if her parents were thinking of putting a memorial place that has some rocks in it? She’s showing me no, not Plymouth Rock but rocks. They may move rocks around, make sitting places on the rock? Not a place where people would frequently visit but you would walk past it or something.

Friend: A mausoleum.

Medium: In the 15-16 years I’ve been doing this work, I’ve never been shown a mausoleum. I think Jim Morrison is in a mausoleum. Okay, she’s saying “yes yes yes. New is the way to go.” She is talking about creating a shrine or mausoleum–they look the same to me. She’s saying, “No, we make our own garden, a place where people can come and visit, where no one can bulldoze it.”

Medium: I feel that … so she passed away before Christmas?

Friend: Yes.

Medium is quiet a moment, says she’s trying to understand what she’s being shown. Then says:

It’s a rainy day, people in cars, windshield wipers… brave ones endure cold rain, It’s fall, close to Thanksgiving, before Christmas, we have come together for an unveiling of something to do with rocks, a place made of stones, beautiful stones, she’s saying “this will be my gift, the gift of the people to me, and I will love this gift, she’s putting trust in people to do it as they are inspired to do. I feel that someone in the group of friends has what was supposed to be my Christmas present, a mug or something, that we are toasting, and we are saluting life. Like when Jewish people say l’chaim, toasting to life, ‘And I will be there with you.” I also see where this garden will be, there will be a few stones put in place on the ground, flat stones, I don’t know if they are man made or with hand prints, something written in them, cement? We are writing love messages in stone or concrete that are there forever, “a beautiful shrine in my memory and I love it.”

 

Notes & Cards

To everyone who has sent messages, thank you so much. I’ve been slowly trying to get through them and respond with postcards I made. (I want to.) But there are hundreds, and at some point someone ‘helpfully’ took a bunch of them out of their envelopes, so I don’t always have addresses and can’t always read handwriting. I hope to eventually write to everyone.  Please know that all the reaching out has meant everything to us

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Caitlin’s Birthday

At an event the other night, someone asked me how we were doing, said, “There must be good days and bad days?”

Actually, every day is a mixture of both good and bad. Sometimes more bad than good. That’s the honest answer.

This is a tough month, her birthday month. She loved being a July baby, a Leo. We will be celebrating the day on the Vineyard with some of her closest friends, remembering how much she loved that island, and grateful that she had so many good life memories.

A note she wrote to a good friend while waiting in Pittsburgh:

i am longing for a new england feeling day.  even as i type it i can feel the feeling of just being somewhere like that.  going into a place to get an iced coffee.  heading to the beach.  walking around a rental house. packing a tote bag.  ugh, i miss martha’s vineyard.  for a couple summers we were renting this little house in chilmark.  i found it the first year, and it was actually kind of a dump.  very rustic, but clean…and i LOVED it.  my mom liked it too, but only for a week, and my dad was skeeved out by it haha.  but i dont know what it was, i kind of LOVED that it was so rustic. my friend jess’s mom lives in chilmark, and so jess would always go there too, and some of my happiest memories in the past few years are of being there in the summer when she is there.  because her house was right down the road.  we’d have our cars there, and it was like being on vacation together, but also in high school…because we were “living at our parents” sort of.  i’d call her and pick her up 3 mins later…we’d drive around, spend basically all day and night together doing lazy stuff. and i would be a total hippie, and never watch tv, and read all the time.  one summer for 2 weeks i didnt wash my hair.  hahahaah you are probably so grossed out. i would take showers of course, and go in the ocean and get it wet, but i didnt wash it, i just would braid it and brush it and keep it tied up in a scarf.  it was weird, it didnt even look that bad.  and when i went home to boston i washed it and it was AMAZING – my hair was like a commercial. 

anyway i miss that so much.  its probably the most relaxed ive ever been.

 

–Maryanne

JUNE 20–Solstice to Solstice

I am not the first person to compare time to a river, but from my desk here, the comparison is ever-present, the imagery apt. Drop something into the river and off it goes. It’s never coming back.

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It’s six months today. And a Tuesday, just as it was then. Another solstice.

And the great world spins.

Inspirations–4 of Them

1st-CAITLIN

When Caitlin was born, she weighed 9.4 lbs and measured 21 inches long. For the first year of her life, until she started developing one pneumonia after another and ‘failed to thrive,’ she was in the 95th percentile for height & weight. And when she was little, I mean really little–1st-2nd grade little– she loved to run. She could run as easily as anyone else and always won the races.

Years later, we would all do 23andMe and see that she and her naturally-athletic father shared a special genetic variant.

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I always wondered what if.

As a college freshman in DC, her up-and-down health was at a ‘good’ level and she rediscovered running–doing miles at a time, big loops between the Lincoln Memorial and the Capital. Even after she transferred to Boston College because of declining health, she liked to run when she felt well enough. But by 2004 or so, she needed oxygen to sleep and to fly, and  to do pretty much anything that raised her heart rate. (Blood oxygen levels drop with these activities.)

By 2011, she had to move to an apartment with parking and an elevator. She needed to plan trips around what kind of walking or climbing would be involved. But she and Andrew discovered that she could still ‘hike.’ Andrew would carry her up a trail and then she could walk down.

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Carried to the view by Andrew

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In Ireland on her 30th birthday.

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Caneel trail on St John, 2013.

Eventually, she bought one of these things: an adult carry pack. It made her weight easier for Andrew to carry.

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I would like to donate hers. I hear they’re good for autistic kids?

The last couple of years, with hope for new lungs a reality, she cautiously let herself hope that she would really run again. And just last fall, she bought herself this book, and had a plan for recovering, post-transplant, by climbing all the featured stairways.

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2nd-JANET

By chance, two of Caitlin’s cousins challenged themselves physically and mentally this past weekend, in honor of Caitlin. In Australia, Janet Jordan faced her lifelong fear of heights and climbed the Sydney Harbour Bridge to raise funds for the pediatric Cystic Fibrosis Unit at the John Hunter Hospital in Newcastle, NSW.

On her page, Janet talks about a dream she had in which Caitlin challenged her to climb the bridge. As the day of the climb approached, nerves set in. On Saturday, she wrote, “Today’s the day I face my fears, and keep my promise.”

Her next update: “I did it!! What started at 4.30 with an hour long safety induction ended at 7.50pm with the greatest feeling in the world. Photos to come.” 

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3rd-MELISSA

Back in western Massachusetts, Caitlin’s cousin Melissa Bavaro Klevans and her husband Sam challenged themselves to a 26-Mile, 1-Day EXTREME Hike.

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                  ⬆️ One of those peaks is called Misery Mountain.

The hike started pre-dawn and took them 13 hours to complete. It was tough and toward the end, Melissa’s feet were in such pain she didn’t think she would be able to finish. But she looked at Caitlin’s photograph, took off her boots, and hiked to the end in her socks. She shared her thoughts with me:

“After the hike I was able to process everything that I had gone through on the mountains and it came down to this one little thought. It’s NOTHING compared to what my sweet and beautiful cousin had to go through. Nothing.”

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Melissa, with Caitlin’s headscarf around her neck.

About the breakfast the morning after the hike, she said, “We were able to speak if we wanted to. I hate public speaking, but I needed to say something. I talked about organ donation. I expressed the importance of going online and signing up and that the license sticker was not enough. The great thing about me moving past my fear was that I got through to people. I had at least four people come up to me after and thank me for my speech. They had no idea, as most people don’t. That was powerful.”

4th-BARRY

While I was in Pittsburgh, I met some incredible people. One of them was Barry Lavery, who went into the hospital for routine surgery three years ago and discovered he had ALS.

Like Caitlin, Barry has faced his fate with grace and humor and tenacity. He and Caitlin had lots more in common: a love of philosophy, a love of birds. Wise, witty senses of humor. But they never got to meet.

He’s now on hospice care and he tells me that when he “hops his perch,” he’s going to seek out Caitlin. “We will drink good Haitian rum, grow wings and feathers and soar…

Last week Nick and I were out on the river at dusk, and the air was full of the sounds of birds and waterfowl. I sent Barry a little video, to share the moment. He texted a response that ended, “Let the river heal you. Remember the quote from a River runs through it.”

💫

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–Maryanne

 

JUNE 2 — An Overdue Update with Pics

We are 5+ months out now, a time when a lot of grieving people notice that they have been—-unintentionally of course—-left alone with their grief. We are grateful this hasn’t happened, that so many wonderful people continue to reach out to us. Thank you, thank you. It means so much…. because I will be honest—-it is not getting easier. In many ways, it is worse.

We lost Caitlin in winter and because winter lasted forever, time felt elastic, a time in which she still existed, was still somewhat ‘of the present.’  Now, New England has done its thing and jumped from raw/rainy/nasty/cold to suddenly-summer. A new season that emphasizes the finality of her absence. Yet every day we still experience the jolt: it can‘t be true. That jolt that is followed by images of her face, her voice, her presence. The despair of never seeing her again.

It’s terrible.

Yes, I do get a lot of ‘signs,’ but the human me is still missing the human her. And I know it’s the same for Nick. Philosophical reflection can only give you so much comfort, so early in this sad game. But… writing on the blog helps bring her close. For the past month, I’ve felt I should write something, if only for myself. So here goes.

LONDINIUM

Caitlin and I were last in London together in 2012, a year that was magical for a ton of reasons. During that visit, on her own, she visited a place she had heard about and loved the moment she stepped inside its walls: the Chelsea Physic Garden, the world’s second oldest apothecary’s medicinal garden.

This past April, Jess and I, as well as my sister Kate, traveled to London, where we spent time with Sinead and with each other. We visited the Chelsea Physic Garden in honor of our buddy.

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It was as beautiful as Caitlin had described, and also served to remind me that modern medicine is still quite new, that it is all still—really—so primitive. It also reminded me, once again, that Nick and I were lucky to have our CF child for 33 years, to have lived in the first century where children weren’t expected to die.

Everywhere, there were reminders of the battle Caitlin faced all her life with those diseased lungs.

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Of course I brought along the photo.

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And found a little hide-away.

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At the Chelsea Physic Garden

It reminded me of a beautiful drive that Caitlin and I made through the Arnold Arboretum, with Henry, right after she was first listed three years ago.

 

On other days, we saw some art, both official and of the street.

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David Hockney at the Tate

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Shoreditch. Street art. We all got our wings.

 

BACK IN MASS

I returned in May to a month I had been kind of dreading. Mother’s Day and my birthday are always back-to-back, and for three decades, waking up to the surprises my daughter had left for me made those days more special than any other holiday. But everyone made it really nice for me.

I can make myself cry thinking about it.

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Now it’s June, and Facebook keeps serving up “On This Day” memories, like the ones that popped up yesterday to nudge me into writing this post.

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That time in 2012, Caitlin said goodbye to me in London to travel to the apartment she had rented in Paris. It had been a dream of hers—-to spend long, solid weeks, living alone, in the city she loved so much.

Her (truly) giant, heavy suitcase contained weeks worth of meds, syringes, neb cups, plus her bulky nebulizer and portable oxygen machine. Such a big suitcase and only the tiniest bundle of clothes and toiletries. In another life, she would have been a backpacking Peace Corps volunteer.

I was worried but full of admiration. And off she went, that June 1st, 2012 morning, in a taxi to the Chunnel train.

 

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No words.

JESS & ANDREW

Everyone asks how they are. Here are updates:

ANDREW

Andrew is still in Vietnam, teaching, but says that he is coming home soon. I sent him pictures of these tacos I made with Maine lobster meat, to try and lure him. I hope it worked. He’s been eating things like bugs, and although he finds his Vietnamese diet healthy, he’s missing Maine and his friends and family.

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Last weekend, for fun, he played in a big poker competition. As one of the finalists, he won a trip to a Manila casino to continue the competition.

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Andrew in Hanoi last weekend.

But the Manila casino is the one that was bombed today, Isis claiming responsibility for 37 killed.

Yet another example of how precious ‘it’ all is. Our lives. Our planet. I have joined an activist group that some of my very dear friends are running: Mothers Out Front, a fast-growing organization that is “mobilizing for a livable climate.” Western PA friends, I will be getting in touch, as the group needs a Western PA presence! I went to the annual fundraiser a couple of weeks ago and Gina McCarthy, former head of the EPA, was the most kick-ass, inspiring speaker I’ve heard in a long time.

**OKAY***   Again, you can’t make this stuff up!  JUST as I typed that paragraph, I was distracted by a text from Nick. I opened the IM window, which also revealed my Gmail window and what email had just arrived into my inbox? This from Gina McCarthy.

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Anyone, anywhere, not just here in MA, not just PA: I urge you to check out Mothers Out Front, and feel empowered by joining with others who speak your language.

 

JESS

Jess is still undergoing her cancer treatments every three weeks. She’s had some complications but they have not stopped her from traveling. Last week she got back from a beautiful boat trip in Croatia with her mom and sister, and today she is headed to Barcelona.

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Beautiful Jess ❤

She’s a real-life angel. Trust me.

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I’ve been sorting through Caitlin’s things and I will post some of her stuff soon.

xo

–Maryanne

 

APRIL 24–Three years ago today.

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.

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She was grateful.

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She had plans.

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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.

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ORGAN DONATIONS ARE DESPERATELY NEEDED

Spread the word, far and wide.

APRIL 20–Speak to Me in Joni

Somebody somewhere recently posted a meme I agree with:  Belief + Doubt = Sanity.

That said, I’m just going to relay what happened.

Previously, I’ve talked about the fact that three of us saw a couple of well-regarded mediums and that Caitlin ‘came through’ with details that no one could possibly know.

Here is a small part of the transcribed recording of my session. K is the medium:

K: She keeps also showing me that she’s very music-oriented. She’s saying, “I’m trying to send my mom music but she didn’t always like the same things that I listened to.” But she’s very music-oriented and she’s wanting to bring through speaking to you through music as well. She’s saying, “Just keep paying attention.”

K: Now, going back in time, she makes me feel like you love–I feel like there’s shared undertones of music that she grew up with with you. Did you listen to Joni Mitchell?    She keeps saying, “Listen to Joni Mitchell.”

Me:  Joni Mitchell??? (I was like, what???)

K: Yeah. Or something of this era, maybe?

Me: She loved Joni Mitchell. Loved her.

K: She’s saying, “Let me speak to you in Joni.” (laughs) “When you put this music on,” that’s what she’s talking about, when you want that experience, it’s like you have these express pathways to her, when you put that music on, you read her stuff, it’s like the sense of feeling her essence come to you, okay. She’s saying, “Mom, it’s more important than any words anyone’s going to say to you.” It’s the essence of her soul just being connected to you.

So that was in February. And we’ve been traveling and I haven’t listed to a whole lot of music. But last week, some of Caitlin’s close, local friends came to dinner here. Instead of my usual Pandora jazz stations that I put on for dinner gatherings, I decided to create a Joni Mitchell station. As I cooked, I noticed that it was playing no Joni, and that the songs it was playing seemed ridiculously message-like. I started jotting down the titles.

Spirit in the Sky, Norman Greenbaum.

Let’s Live for Today, The Grass Roots.

Turn, Turn, Turn, The Byrds (To everything/there is a season).

Stairway to Heaven, Led Zeppelin. (Aside from the obvious, we used to laugh with horror because a volunteer harpist who played in inpatient units at Brigham & Women’s Hospital always played that song!)

Last Dance with Mary Jane, Tom Petty. (This one has special significance because it was a lifelong joke. When her fifth-grade class was graduating from Lower School, they all got up on stage and sang their made-up lyrics, “Last Day in Lower School,” to the Tom Petty tune, and they sang in such a morose and funny way, we parents couldn’t stop laughing.)

The Sound of Silence, Simon & Garfunkle. (see earlier post)

Finally, a Joni song came on, one I didn’t know. At first I thought I wasn’t hearing correctly. 

Willy, Joni Mitchell. (Nick’s brother Willie died at age 29, when Caitlin was 5. Caitlin loved him.)

The friends arrived, and someone said, “Hey, this sounds like Caitlin’s music.” I didn’t really pay attention after that, but when we sat down to eat, I mentioned how the music had been a bit spooky. And as I was talking I realized what was playing. I couldn’t believe it. I said, “I can’t believe this.”

You Can’t Always Get What You Want, Rolling Stones.

I ran upstairs and brought down the little notebook I recently found in her bedside table. She had only written on one page, back on January 14, 2014 when she was first on 24/7 oxygen and very sick, obviously ready to be listed for transplant.

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She had written, “You can’t always get what you want, and if you try sometimes, you get what you need.”

She went on to tell herself to “Let go. Just be strong. You will not be able to predict the future. Accept that. You are getting what you need.”

But “It is going to be scary and you might die.”

Last Thought for Today, on this 4 Month Anniversary

Yesterday, I went to the mausoleum. I’d only been there once before. I don’t find it comforting, and I don’t feel my kittycat there. I mainly went there to cry, after a particularly good Daoist Yoga class. But while I was doing so, I realized a crazy thing. Kitten is in the space adjacent to someone whose last name is PARIS, and whose first name is BIRDIE.

I texted a few people to tell them. I wrote, Come on !!!

And as I drove out of the cemetery and merged onto the main road, I found myself behind this:

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You can’t make this stuff up.

Here’s a little more of what Caitlin herself wrote about writing, and inspiration, and music.

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Update

I published this post, got in my car, and this:

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Also, I’d almost included a link to this but had taken it out. Now I will put it back in, as a few people called my attention to it. The lounge-y cover of the song that played at the end of BIG LITTLE LIES. Have been listening to it over and over.