Category Archives: organ donation

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.

 

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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 — 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.

FEBRUARY 23– Eleven

A powerful pulsing of love in the vein

We are in Arizona. We packed up Pittsburgh, sent all those boxes back to Massachusetts and came to another ‘bigger-than-we-are’ place to regroup.

Pittsburgh was tough. It was also comforting. We were able to see a few of the good friends we made there. Mary and Ralph, our wonderful neighbors in our equally wonderful building, hosted a gathering for us on Friday night. We included some new friends: Diane and Mallory Smith, who, like us, had to relocate to Pittsburgh to wait for a lung transplant for Mallory. They’ve only just arrived. They are from LA, a crazy long way from home. We introduced them to some of our Pittsburgh people.

People have asked, as did Mallory’s mom, Isn’t it hard to be with people who still have a chance? Or who have had successful transplants? Of course. But is it easy to be with them once you overlook your own pain and come to love them and realize that you want only good things for everyone? Yes.

Organ donor awareness must continue, please.  For the brilliant and beautiful Mallory, and for everyone else.

Boarding a Greyhound in Pittsburgh…

On Monday the 20th, at 5:45am, we left in the dark. It was so hard to walk out of our home of the last two years, to take one last look and close the door.

We had arranged for our favorite driver, Jim Stanley, to pick us up. You feel safe with Jim. He is an ex-Marine and an all-around good guy. He drove Nick and all of our visitors back and forth from the airport the past two years.

Jim is also a very talented acoustic guitarist. As we merged onto the on-ramp, he said it was hard for him to talk about hard things, but that he wanted to tell us that our family had inspired him, that witnessing the support of all our friends and family had made a strong impression on him.

He said, ‘Your daughter was teaching herself guitar.’ And told us that after we flew in from Boston picked us up, he had been inspired to do something he’d planned to do for 20 years. His brother, he said, had battled cancer on and off for years, and had lost his struggle at age 41. The two used to play guitar together and Jim had always meant to record a favorite song of theirs.

Well, he’d finally done it. He said, ‘I’d like to play if for you and if you like it, I’ll send it to you.’

The Sound of Silence filled the dark car. A gorgeously complicated acoustic arrangement that was perfect, beautiful. Nick and I clutched hands, and he passed me a tissue, and as we sped along the highway, high in the sky was a waning crescent moon, inverse to the waxing crescent moon that had hung outside the medical jet when we flew to Pittsburgh, 3 years earlier, so full of hope for a speedy and successful transplant.

Our plane departed from gate 33. A few hours later, we landed in Phoenix.

Arizona

In July of last year, I wrote on this blog about coincidences, and about how Caitlin once had something called a soul reading done. The reader had asked Caitlin if anything had happened to her when she was 11?

Age 11 was the time she came very close to dying. After the year of surgeries and complications she endured (she would hate me using that word–she so disliked drama regarding her health), Arizona was our first family trip.

I was struck, back then, by how calming this place was. It still is. We’ve been hiking the desert mountains every morning. It’s so quiet, so still. There are so many birds to remind us of Caitlin. We’ve shouted her name into the canyons and the echoes are pleasing.

Penny sightings

I had never heard of pennies from heaven until about a few years ago, and then only from my sister, the very practical Kate, an RN. But Kate is also rather intuitive, and when she says something in her no-nonsense voice, I tend to listen, even though this particular  phenomenon seemed too far-fetched to make any sense.

But I’m just an earthling, a human. What do I know? And anyway, regardless of how coincidences happen, the way you read coincidences can be helpful with self-reflection. Here are some recent, striking penny stories:

We knew people could have ‘dry runs’–offers of lungs that didn’t work out, but we didn’t really expect it to happen more than once. At one point during the last week that we crisis-waited, I went into the hospital bathroom I used each morning and saw 4 pennies. She’d had 3 dry runs at that point. I hoped those pennies meant she would indeed get a transplant, get one more chance.

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Washroom pennies

She did. She got her transplant on the 4th offer, on December 18th, one of the happiest days of the last three years. But it was all too late for her beat-up body.

On December 20th, as they turned off the ECMO machine, I saw that there was a penny on it.

On December 21, Nick and Andrew and I walked over to the Fairmont to get out of the apartment, to get a quiet lunch, to get out of our heads. The Fairmont is two blocks from our apartment, and to get to it, we had to walk through all the holiday goings-on–the ice rink and gingerbread house display signs, the European Holiday Market stalls in Market Square.

On our way back, as we were walking by the ice rink, an urge came out of nowhere. ‘Let’s go see the gingerbread houses,’ I said. I veered sharply to the right to lead the guys toward the building where they were on display. Near the entrance, I saw a bunch of pennies on the ground. I picked them up, counted them.

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The day-after pennies

There were 11.

I put them in my pocket and walked into the crowded atrium containing the giant displays of gingerbread houses. Standing right in front of me was Kwesi, a young man who had a lung transplant in 2014. I’d only met Kwesi twice before. I knew he lived miles from downtown. I couldn’t believe he was right there in front of my eyes and I almost couldn’t speak. But I did, and I stammered something about Caitlin.. and then we left.

Because I’d had no real interest in seeing the gingerbread houses. I’d seen what I was supposed to see. 11 pennies and a successful transplant recipient.

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11 Mourning Doves

11. 11 has been knocking on our heads. Before coming to Pittsburgh to help us pack, my sister had 3 instances of mourning doves settling in the branches of a tree outside her window, not on the ground the way they normally visit.

Each time, the branches contained 11 mourning doves. Each time, she took a pic.

Back in the old AOL days, I sometimes lurked inside a chatroom full of astrologers. One of them struck me as bright and very good. Once, I emailed her a quick question about Caitlin. She ended up responding at length, gratis.

First, I need to tell you that the prime focus of Caitlin’s chart is her sixth house. For all intents and purposes she has 4 out of 5 of what I call the “god” planets there. The god planets are the planets that represent energy we think of as coming from God, as opposed to those energies we ordinarily think of as “human.” And 3 out of those 4 were, until recently called “malefic”….Pluto, Saturn, Uranus. That is way too much energy for one house, especially one having to do with health.

She then told me that Caitlin was lucky to have survived the year she was 11, that there had been great stress on her from several angles in her chart.

During her wait for transplant, Caitlin’s lung function hovered around 20 percent of normal. Last week, I found a pulmonary function report from the year she was 22, 11 years ago. Her lung function was averaging 35-40 (bad) then, and at one point was as low as 24.  Those were the years when she really declined, when she started needing oxygen at night, and to fly, when she avoided stairs and much of regular life.

She lived with invisible struggles for a very long time.

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PFT report, age 22

It’s crazy, but 30 percent can look like this:

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One tough kitty.

CF. It’s a demon and it’s mostly, until its cruel end, invisible.

So maybe 11 is a reminder that we got 22 ‘extra’ years. That Caitlin lived 33 years with a killer disease during this time of miracles and wonder that we live in.

It does provide some comfort.

 

PS to those in the know:

Across the Universe is playing in my hotel coffeeshop right now, as I get ready to publish this post.

FEBRUARY 7–(Turn and face the strange) Changes

I have a cold and haven’t been able to breathe through my nose the past few days. I’ve been trying not to mind. It’s the least I can do. Being unable to breathe through her nose was just one more thing that Caitlin had to deal with. Her sinuses were blocked–a common CF problem–and after 2 1/2 years of nonstop oxygen blowing into little nostrils, they were irritated as well. She got to the point where she had to sleep half sitting up and tilted to the side, against four vertical pillows, to try and get relief.

Not that she ever slept through the night–she also had to take a beta-blocker every day at 4am. And then 8 hours after that, and 8 hours after that. Her failing lungs had put such a strain on her heart.

As Andrew said in the service, Caitlin climbed a mountain every day. He is planning to climb Mount Kenya this week. He wrote: “The air on Mt Kenya will be so thin. I will struggle to breathe. I’m actually looking forward to it.”

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Andrew and Jess at 6389 feet

Every time I wonder whether I should still write these posts, I get another email–often from someone who didn’t even know Caitlin–thanking me for writing them. Even when I write about things like altitude.

Not all that long ago, in 2013, Caitlin and I drove out to Lenox to visit Edith Wharton’s house. As we drove along the turnpike, she began to feel tight, breathless. As we climbed a slight incline, it occurred to her what was wrong. She checked the altitude app she kept on her phone. 1200 feet.

She was still living independently then, and functioning ‘normally,’ but that change in altitude was high enough to hurt.

This past weekend, Nick and I spent two nights in her apartment. We are trying to use it, take comfort in it, and slowly accustom ourselves to this vast change.

One afternoon, we walked home from Back Bay via Charles Street, which I had been avoiding because memories are literally everywhere on that street. After college, Caitlin worked at the Polly Latham Asian Art Gallery there. And the yearly Holiday Stroll, in 2013, was the last time she ever went to an event without wearing oxygen. Two days after that stroll, she was in the hospital. She began to need oxygen 24/7. She knew, although the rest of us refused to believe it for a while, that the oxygen was permanent. The forever-change we had been dreading forever had come, at last.

Jess left me a message yesterday. One of the things she said was something along the lines of, My mom always said the only thing that’s certain is change.

Polly Latham closed her storefront quite a while ago. I think the space has been a few things since, but I somehow knew that something new had opened there. As we approached, Nick was doing a nice job of listening as I tearfully described the vanilla eclairs Caitlin used to love at Cafe Vanille. (That space has changed, too. It’s now Tatte). And how she bought me a favorite shirt for Christmas at Dress (which used to be in a different location). I was outright weepy by the time we got to Polly’s old shop, remembering the  layout: big front window looking into a small display area, then a tiny staircase that led to an upper balcony area where Caitlin used to work and where she would give everyone who came through the door a big, bright smile.

It’s now a handmade jewelry – slash – antique jewelry shop.

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Heart, bird, wings.

And like everything these days, it felt like there was a message in this window.*

 

*More about messages, signs–the wild stuff later. Like Caitlin listening to David Bowie in the sky. Still need to wrap my head around it all.

–Maryanne