Category Archives: organ donor

SEPTEMBER 26 — The Caitlin Book

From a little notebook of Caitlin’s:

April 27th, 2012
I am grateful for —
My parents
My friends
My apartment & car
My dog
My ability to be able to go out and have fun even though I’m sick.

In July of 2014, 6 months into full time care-giving, I realized that I hadn’t worked on my new novel and that it would be easy to continue to ignore it, indefinitely. So I started carving out a daily chunk of time. I would set my timer to 30 minutes and write, with full focus, for at least that amount of time. At the end of each session, I circled the date in red.

It’s amazing what you can do with 30 focused minutes. I managed 254 pages–a decent draft of a new novel. In 2+ years, I did not miss a day until I finally gave up, in the ICU, on December 11.

Last week, on September 18, which was our 35th wedding anniversary and the 9-month anniversary of Caitlin’s transplant, Nick and I walked around Walden Pond.

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Walden Pond, 2017

When we came home, I started setting the timer again — for 33 minutes, in honor of Caitlin.  But instead of working on the novel, for the moment I’m compiling parts of this blog and other words into something that I’m just calling “the Caitlin book” for now.

At this point, it is painful. I started at the beginning of the blog, but now I’m into the December posts, which I had not read since I wrote them. Reliving each shock after shock, the kernel of faith, the hope, the desperation, and then that final joy when she went into the OR on December 18 and received lungs.

It’s still impossible to believe things played out the way they did.

But a week does not pass that I don’t receive a blog comment, an email, or a hand-written note from someone, somewhere, who has been bettered by Caitlin’s story. Here is a recent one (accompanied by heart-shaped rocks for Caitlin’s memorial). It’s a reminder of why I want to create something more permanent than blog posts in the ether.

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It will not be a story about anger and illness. It will be the story Caitlin wanted told: about light, love, and fierce positivity; about life and afterlife.

I am still figuring out the form it will take.

I told my wonderful friend Jane, in Pittsburgh, a beautiful writer, that I was doing this, and she responded:

Happiest thing in your letter: you’ll start the Caitlin book! This has to be done. This is going to be so wise, so beautiful, such an honoring of life, of soul, of friends, of motherhood, of grief, of CAITLIN. It is going to be a unique gift to the world. And to many many people who suffer terrible illness and loss, But really a gift for everyone. Mothers! Daughters! People who need Inspiration!

I have printed her words out and hung them over my desk, to keep me going.

 

–Maryanne

SEPTEMBER 6–In the Meantime..

I’d like to recognize/document summer, and appreciate the continued kindness and interest in what is going on with us.

VISITORS

They started with Caitlin’s “main” ICU nurse, Erin, who visited us with her husband and three charming little daughters (3 under age 5!) in June.  They called me “Miss Maryanne,” and Nick, “Uncle Mike.”

In July, Dr. Penny, the CTICU director who did everything she could to save Caitlin, visited us, too.

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Emotional times. But anyone who’s lived inside an ICU knows how intense it gets there. These people became part of our lives.

And next week, four wonderful friends/Pittsburgh neighbors are coming. I guess we will always be tied to Pittsburgh.

 

MORE PICS FROM CAITLIN’S BIRTHDAY

Turns out Nick took some photos I didn’t know about. I’m usually the one taking pictures, so I’m in some, for once.

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Andrew at Larsen’s. Steamers.

 

HEART ROCKS

People have been continuing to send us beautiful heart-shaped rocks. There was even an anonymous, perfect one in our mailbox. Thank you! There is no time limit. We haven’t even started building the memorial, and will always have room for more. Here are some more pictures.

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The little kids in Ireland.

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Spain hearts.

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The Islands and Irma

We are worried about our beloved islands and everyone in Irma’s path. We haven’t made many firm plans yet, but going back to St. John is one of them. Like the Vineyard, Caitlin’s spirit is surely there.

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BARRY

I made a good friend in Pittsburgh, Barry Lavery. He was living with ALS and — talk about an inspiration. He had a wise, expansive spirit. I looked forward to our weekly visits/conversations, and after I left, we would text and I would send him videos of New England beauty and the wildlife. He was a lifelong photographer and photography teacher, a bird lover and hawk expert who volunteered at the wildlife center after he retired from teaching at the Art Institute. He was a lifelong student of philosophy, a Taoist. A man who never lost his sense of humor. I will write about Barry in whatever I end up writing about all this. He was certainly a part of the whole story. He left us during the August eclipse and promised he would seek out Caitlin. It’s a welcome thought.

This was his public Facebook profile pic, so I feel comfortable sharing it. It was obviously taken when he was still well, still volunteering at the wildlife center. The hawk connection is so interesting. I still haven’t written about the hawks, but I will.

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Barry and a hawk named Chuck.

 

LASTLY

This hasn’t happened much, but when it does it’s kind of awkward. We think of Caitlin all the time and talking about her is part of this new life.

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–Maryanne XO

 

 

 

 

SEPTEMBER 6 — What will happen?

I keep thinking we can turn back time. An illogical thought, of course, and one which only lasts for a second, but which comes to me every single day.

Inside my kitchen medicine cabinet, I have always tacked up recipes, poems, cholesterol counts, phone numbers of relatives in Ireland. I noticed this calendar last week. Early in 2014, at the beginning of the transplant nightmare, I had taped it up.

I remember looking at all the days still to come and wondering what they would bring. I wrote, What will happen??? Knowing there would be an answer, impatient for it.

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Then, a day later, cleaning out a desk drawer, I came upon an email Caitlin had sent me, again in early 2014. I don’t generally print out emails, but had printed this one, and oddly enough, when I mentioned it to Katie, Caitlin’s closest-to-a-sister (is there an easier word for her??), she said that she, too, had just happened upon the same email, which I had forwarded to her, back then. Another funny coincidence.

Caitlin to me:

This is what has been bothering me most about our argument the other night. We need to make this time as ok and as enjoyable as possible. Who knows what’s going to happen once I get that call. I don’t want to live this time as if “this sucks” or “this time is really crappy and stressful.” I just can’t do it and I don’t think it’s true or smart or good for our hearts. I feel like this is your underlying sentiment despite that your brain tells you to “appreciate what we have.” The truth is is that this could be it. As hard as that is to say, once I get the call I’m going into a hugely risky surgery. There aren’t any guarantees. So this isn’t just a time to get through –it’s a time to try to be happy and make something worthwhile of it.

Everything from the bottom up here is unknown- someone has to die for me to get a transplant, so it doesn’t get any more unknown or unplanned than that. The only option is to go with the flow as best we can and that means basically, assessing everything as it comes, and dealing with things but letting them go just as quickly. That includes like stress and freakouts and fights. There’s no way to avoid them so just deal with them.

This isn’t a sad time we should be waiting for to be over. It will be over soon enough and you could be wishing we were back here. Or we could be glad we never have to go back here. The point is we don’t know, we can’t know, and I don’t want to live like I’m just trying to get through it, when this is still my life.

I love you

Sent from my iPhone

My response:

I love you.
It is interesting that while you were writing that, I was making coffee and thinking about how I needed to tell you that I feel shame when you have to talk to me like that.  You do a very good job of taking the high road, and restraining yourself from fighting and all that.

Sorry.

You are completely right about all of this.  Let’s make today a happy day !

 

So.

We are into September already. September of this year 2017 that has not had Caitlin alive in it. I look at my calendar from a year ago. September 7, 2016: Kitten admitten.

It was the first of three separate hospital admissions she would have. One each: September, October, November.

During the final admission, with such a high score, we were actually happy, expecting that transplant would be imminent, but she was more scared/somber/nervous than I realized. Of course. I see now, reading through much of her stuff, how much she kept inside. One of the things she sent to me then, and which breaks my heart a little:

The Afterlife, by Billy Collins 

I haven’t been writing in the blog all that much. I plan to write this story in a more contained form. I’m still figuring out how.

 

–Maryanne XO

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

 

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.

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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