Category Archives: organ donation

NOVEMBER 16–& the Anniversaries Begin

I know all the dates.

Yesterday a year ago was the last night Caitlin would ever sleep in her own bed. That night, she was so weak she did not have the strength to sit in the bathtub and let me wash her hair. I was so alarmed I emailed her doctor at 10pm.

On the 16th she was admitted to the hospital for the last time.

I wonder now, how many times in her life was she admitted to a hospital? I don’t know that I could even guess.

After I went home for the night, she texted me

Caitlin: Had to get an echo. Feel sick. And tired and can’t breathe. Love you. Hope you get rest.

Text message: 11/17/16 9:14am

Caitlin: My score is 70

Maryanne: Oh my God. Oh wow. What happened?

Caitlin: Dr hayanga came in. Because of my oxygen

Maryanne: What did hayanga say

Caitlin: He was optimistic. Very. He was Iike, we expect to get offers.

Caitlin: Andrew says we HAVE to be hopeful

Maryanne: We ARE hopeful. This is going to happen.

I drove to the hospital that morning with a light, happy heart. It was finally going to happen. The head surgeon came in and said he had been up all night fielding offers for her. None of them were a match, but with so many offers coming in, and with her score so high, a match seemed imminent.

She was on a lot of oxygen but she was stable, and felt much better than she had at home. Finally, finally, finally, after 2 1/2 years, it was going to happen.

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Yesterday, another CF tragedy occurred. Mallory Smith of California, who, like Caitlin, could only be transplanted at UPMC and moved to Pittsburgh to wait, received her transplant in September. Her recovery was hard but she was recovering. She was on the other side. Just a few weeks ago, she celebrated her 25th birthday. Soon after, when the docs removed her last chest tubes, she said, “Today is the happiest day of my life.”

Then a pneumonia took hold in her chest. Without an immune system to help her body fight the infection, she became sicker and sicker. The cepacia bacteria that had damaged her native lungs began to destroy the new lungs as well.

We were all hoping for a miracle of science for Mallory, but she slipped these surly bonds yesterday afternoon, her most beloved people by her side.

She was brilliant and kind and everything wonderful. A few years ago she wrote an essay that contains these words:

My life is a miracle because I should be dead. Your life, even if you’re healthy, is a miracle, because your existence is the result of stars exploding, solar systems forming, our Earth having an environment hospitable to life, and then, finally, millions of highly improbable events accumulating over millions of years to bring you, a capable and conscious bag of stardust, to the here and now.

Acknowledge that miracle. Existing is a rare gift, a privilege. It isn’t a right. Think of all those atoms that never ended up inside a human body.

So pick something, do something, to respect that miracle. Step up to the challenge of making your own meaning out of mere matter. Let the whole, the human, be altruistic, be greater than the sum of the parts, the selfish genes of our genome.

Set an intention and get after it feverishly, frenetically. Give back what we’ve taken by paying it forward, save a life, smile at a stranger, climb a mountain leaving nothing but footprints, inspire a child, take care of your body, bring happiness through laughter, plant a tree, and sometimes, just breathe and exhale a little bit of calming energy to your environment.

Give back in whatever small way you can, any time you can, because we are not small. No one of us can do everything, but all of us can do anything. Do it because we have survived, and that is a miracle. Do it because why wouldn’t you? Do it to justify your life.

I hope Caitlin found you, Mallory.

Full text:

And we are big (spoken word unspoken), by Mallory Smith

View story at Medium.com

 

OCTOBER 31 — Thinning of the Veil

Caitlin’s friend Shelley and I were just talking about the origins of Halloween—Samhain. She sent along a great link about all that, and about the “thinning of the veil” that supposedly occurs during this autumn/winter transition point: Halloween, Samhain, and the Thinning Veil. She said she was interested in paganism.

I said, “I agree. Connected to the earth, cycles of nature, the spiritual. And then greedy men had to turn it all into religion, for their own gain.”

Shelley: “Yesss.” She talked about having her husband read the link, because he was “all down on Halloween, hating the commercialization aspect of it, the excess. I couldn’t quite describe why I appreciate it and then that article made it really clear, how it’s this last remaining pagan holiday that’s widely celebrated, and wasn’t co-opted by the Church, aka the patriarchy. It’s really a big F U to all that. And a returning to a life more in tune with natural rhythms.”

In Mexico, these 2 days are called Los Dios de los Muertos, the Days of the Dead. People visit their departed loves ones in the cemeteries; they celebrate. Interesting to me now to remember that one of my first published stories was a musing on this holiday and how it compared to Irish Catholicism. I published “Afterlife” almost twenty years ago. The ending reflected my beliefs at the time, that there was “nothing but this moment.”

I’ve changed my mind, although I have no certain opinions anymore, other than that I do believe there is more to life than this life. I’ve believed that for a long time, and even more so these past months, when the signs I receive are outrageous and constant.

Last year on this day, we drove to Schenley Park in Pittsburgh. Andrew was going to play disc frisbee and she and I were going to go for a “walk.” A walk meant that I walked and she rode the little seated scooter she had recently bought for herself. But she didn’t have the energy for it, so we sat in the car and talked instead. It was a beautiful day. We were up on a hill with a view to the city. When the radio began to play “Monster Mash,” she got a crazy little burst of energy. She opened the door and got out and danced for a minute, happy.

The sweatshirt says I AM A CAT. The hood has ears.

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My friend Diane just texted:

Thinking of Kitten. Thinking of how great she always looked in any costume she wore🎃
Such happy memories of your parties❤️

Caitlin as Audrey Hepburn was as good as the real thing. Caitlin as Mia Wallace, with a syringe sticking into her chest was typical bad ass Kitten.

( She would shake her head to know that I just had to look up Uma Thurman’s character name because I’ve never seen the movie. She used to get so ticked off at me, for not seeing movies. )

Here’s a little video I just took, of Henry wearing the costume she made in Pittsburgh two years ago. A. Red sweatshirt, bag of leaves, glue gun.

Happy Samhain. Keep your spirits aware.

–Maryanne

 

 

 

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.

 

33 to 34

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

 

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–Maryanne, and with love to all from Nick

 

 

 

 

 

 

 

 

JULY 10 — 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