Category Archives: organ donation

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

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