organ donor – Page 3 – 9 Lives Notes

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.”

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.

Screen Shot 2017-02-06 at 6.08.22 PM.png — *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

JANUARY 31–Half-Birthday, Groundhog Pup

I’ve been doing some reading about grief and neural pathways and how grieving morosely can become a chronic habit. I believe that eventually we want to be in the position of celebrating Caitlin’s life as opposed to mourning her death, as a friend said last week. So I’m going to make an effort right now to remember Caitlin’s great sense of humor, in honor of her half-birthday.

Yes, it’s her half-birthday, something I always jokingly ‘celebrated.’ It started when she was little and I used to send cupcakes into school on January 31.

This Thursday, February 2, is also Henry’s 13th birthday. Well that seals the deal, Caitlin said when the breeder told us he was born on Groundhog Day. Groundhog Day was one of our family favorite movies. Henry was meant to be ours.

We could never have imagined that we would end up living our own version of Groundhog Day in the very area where the movie takes place. Two years ago today, Facebook Memories tells me, Caitlin and I drove out to Punxsutawney for the weekend festivities. We laughed the whole time, and bought ourselves a chainsaw-sculpture groundhog.

We continued to laugh. Here’s a Facebook post of mine from just a couple of months ago:

As for our real little groundhog pup, Caitlin realized she had totally come late to the game with making Henry a famous Instagram dog, but went ahead and made an account for him anyway, about a year ago. For a look at her humor and to remember her with some smiles, here we go:

PS:

An interesting thing about Groundhog Day, the movie, and why it really is so great, is that the more you watch it, the more you realize that it really is an excellent illustration of the evolution of the human soul. New York Times article: “Groundhog Almighty.”

JANUARY 30–Windows Left Open

I haven’t seen Hamilton yet, but I know the music well and I keep thinking of the lyrics… The world turned upside down 🎶 My God, it’s so upside down right now, but everyone’s protesting, speaking up. It feels good, but if you’re feeling helpless, you can start here: Join the American Civil Liberties Union

Caitlin’s father is an immigrant from Ireland, a guy who came here without a green card, and worked hard and who has been employing dozens of people for thirty years.

I love this photo of Caitlin on a cold night—but just wearing a headscarf is a sign of bravery these days. I can easily imagine some ignorant bully verbally or physically abusing her because of it.

Or her having to face this, as she would have in an earlier time.

I was getting some stuff off her computer today, and I remembered she often kept little text windows open where she would jot down her thoughts. These two were still open, unsaved.

what on earth could i have to say?
how much should we self reflect?

wild rice
quinoa
papaya

And this.

Redemption song
what kind of a country are we? “I want to be my own nation” – a character in ___ says. My mind can’t make sense of killing to protect a nation. It’s not my mind actually. It’s something else. My soul? My mind can understand it. We live in a nation and we want the protection and rights it affords us so we have to be willing to fight for that. People want to harm us….I would want to fight for freedom. Its not anti fighting. But as a person, deep down, can you ever really reconcile that? Or is that all part of being human. Having to live with the reality that your life might mean someone else’s death. In any scenario.

Uplifting Stuff:

Jess and her wonderful artist mom, Stephanie Danforth, have been going to Kenya for years, where they do a lot of work for kids via the Daraja Academy and the Simama Project. They are there right now, and so is Andrew. He took this opportunity to expand his world and do some good. Here are some photos from the past couple of days.

From Stephanie:

Screen Shot 2017-01-30 at 2.41.35 PM.png — *A little chess.*

And Jess sent this earlier: a little rainbow where there has been no rain.

It turns out that rainbows can be found in the most unlikely of places.

Update:

Right after I posted this, my niece texted me.

So crazy. I just read your post on the blog and had to share this with you. I was driving home from NH yesterday and there was a rainbow in the clouds. It wasn’t and hadn’t rained though. I tried to get a pic, but just couldn’t capture it. ❤

JANUARY 28– The Answer, from Caitlin

When Caitlin was a small, small person and had frequent hospitalizations and weeks of home courses of IVs and then a long, serious surgery at age 11, my mother would always marvel at her. “She’s so stoic,” she would say.

But it wasn’t like Caitlin didn’t have fears or anxiety. It was just that she pretty much kept all of that to herself.

Once, when she was about 3, I heard her in her bed talking to herself. “Always have to cough, don’t know why.”

And one day I found this little drawing:

Like the frog in the slowly-boiling water, you get used to dealing with what you have to deal with, and it becomes the norm. I’ve been looking through old journals, and as I read through them, I kind of shudder. We always lived with held breath and a cracking heart. From the year she was 11 and spent months in the hospital, after surgery to remove part of her left lung:

I was just looking out the window and saw her clench her fists, then run up and down the yard. She’s trying to make herself better.

Last week, on Caitlin’s Boston bedside table, which was usually stuffed with toppling-over stacks of books, I was surprised to find only two items: one of Dr. Brian Weiss‘s soul/reincarnation books, and a little health journal she sporadically kept. In 2012, that year that I wrote was so great the other day, she had written:

Waiting on bloodwork and doctor’s call. Stressed. Scared. I don’t know if having another disease is something I can handle. So much time thinking about myself. Feel depleted. So much time just trying to care for myself that I have no energy left to really truly do something outside of me. Wish I could just forget about myself and throw myself into something meaningful but the mundane daily aspects of health keeps me tethered to my stupid problems.

Caitlin had cystic fibrosis, but by the end, she also had severe pulmonary hypertension, CFRD (diabetes), ocular migraines that put her at higher risk for stroke, blocked sinuses, and constant, painful total body aches that required round-the-clock doses of Tylenol. I’m sure I’m forgetting something, but the point is, all of these conditions required care. At her service in December, Andrew pointed out that every single day, Caitlin climbed a mountain. Every day involved so much more effort than any regular person can truly imagine.

This past week has been, for me, the hardest yet, the finality of her absence more fully real. It didn’t help that on Monday, I reached out to an MGH therapist who was supposedly outstanding—knew CF, transplant, ECMO, etc., someone who would understand the trauma of Caitlin’s life and last weeks without a lot of explaining by me. I waited for a reply, for a lifeline. On Tuesday, I received this email:

Thank you for your phone message. Unfortunately, I don’t have availability to see people for weekly therapy in my cystic fibrosis clinic at MGH given the limited time that I am there. Do you need to stay within your insurance network? If so, I can ask around in our department to see whether someone with experience dealing with illness and grief may have time.

We happened to be in Caitlin’s apartment when I received that email and I was livid and hysterical and couldn’t stop sobbing all night long. All night I thought: in the morning I am going post this callous person’s name on my blog then march down to MGH and accost her, in person!

I obviously needed to unleash some anger.

I sent a restrained reply instead:

I left you a voice mail explaining that my daughter died after being on ECMO.

I am stunned by the lack of empathy in your response.

Then I let it go. I have to let a lot of things go. Caitlin would be the first to say so.

She was such wise counsel to so many of us. After my inward rant, in that little black health record, I also found this:

___________________

September 12, 2012

Feel desperately hopeful now that Obama will win. Biden’s speech tonight about his grandmother and courage.

Courage. That word means it all to me.

When I feel myself flailing, grasping, panicking with pain or hurt, I get a notion in my head, always, and remember that there is courage. Courage is the answer. Because courage doesn’t negate the problem, it exists within the problem. And when you realize the answer lies in taking in the problem and living in spite of it, with full awareness of it, you feel a new option and a new sense of hope and life.

JANUARY 24–The Price We Pay

We are home. We decided to fly out of San Francisco on Saturday. It was time; we need to get things done here. I was sorry to miss the marches, but as my good friend Ellen pointed out:

I wasn’t sure I could go into the Boston apartment, never mind sleep there, but we did, and it was actually somewhat comforting. Also, by chance, my sister and brother-in-law were staying in Boston that night, and it was also comforting to spend time with them.

Random Thought: Barbecued Oysters

I really appreciated the notes from all of you who were grateful for the trip reports. It was easier to grieve out there, close to that spectacular coastline and those ancient trees. Caitlin felt with us. Now, home, she feels very much absent again. We will work on that.

Our last day, Jess took us up to Point Reyes where we sat at picnic tables in the freezing cold and ate the most delicious barbecued oysters. If you’ve never had barbecued oysters, you’ve got something to look forward to.

Screen Shot 2017-01-24 at 12.38.40 PM.png — *Hog Island Oysters at Point Reyes*

Screen Shot 2017-01-24 at 1.02.33 PM.png — *Beautiful Jess*

Random Thought: 2012

Five years ago it was 2012, and 2012 turns out to have been one of the most wonderful years of our lives. Viking was publishing Cascade. Nick and Caitlin and I took a relaxing winter trip that turned out to be one of our best. And that summer, after living alone in Paris for a little bit (a longtime dream), Caitlin met Andrew.

Screen Shot 2017-01-24 at 12.35.51 PM.png — *Caitlin in Coral Gables, 2012*

Yesterday, I found an old email I sent to my sister:

Caitlin really clicked with that boy. She said they talked instantly and forever, of ‘things’ and that he was very smart and kind. As she was telling me about him, she said “it’s like he was the male version of me,” and then her face went a bit white, and she said, ‘oh my god, that’s what the psychic told me. i would be the female version of this person i was going to meet.’

He felt the same. How lucky they both were.

Also, in 2012, Caitlin had been on a kind of wonder drug for a year. Kalydeco, invented by Vertex Pharmaceuticals, targets the specific genetic CF mutation that Caitlin had. Within hours of taking it for the first time in 2011, she felt better. She gained weight and had fewer lung infections. If Kalydeco had existed before her lung damage happened, it would have been as good as a cure. Although it ultimately came too late for her, she did enjoy a couple of relatively healthy, hospital-free years because of it, and enjoyed talking about her experience to a few groups, including Vertex and the Boston Business Journal. Drugs like this came about because of all the support for the Cystic Fibrosis Foundation, and we all thank you for that support.

*Caitlin interviewed by Boston Business Journal*

Random Thought: Hereafter

Yesterday was the first day I spent alone in the house. Nick went back to work and kept himself busy. I managed to take a shower, but mainly I cried all morning. The news was all horrible and the day was gray and reminders of Caitlin were everywhere. There is a mountain of cards here and we are so incredibly grateful for them. I tried to read one or two but couldn’t manage any more, yet.

I finally decided to watch a movie that I love, “Hereafter.”

Hereafter came out in 2010 but didn’t do well, mainly I think because people went to it expecting a disaster movie–it opens with incredible special effects that depict the 2004 Indian Ocean tsunami. But it’s not about special effects! It’s an intelligent, engrossing, and very well-written movie that ruminates on whether there is an afterlife.

Matt Damon plays the part of a reluctant medium very very well.

After watching it again yesterday, I realized that it was written by Peter Morgan, writer of The Queen and The Crown. No wonder it’s so good, I thought.

In Pittsburgh, Caitlin and I loved to watch series-type shows after dinner. Our last show was The Crown, and we finished it right before she went into the hospital in November.

At the time, I looked up some of the actual events that took place in the show, including the Queen’s friendship with “Porchie,” and came upon this statement she made after his death:

She was, in turn, quoting from Dr Colin Murray Parkes, a hospice pioneer:

“The pain of grief is just as much part of life as the joy of love: it is perhaps the price we pay for love, the cost of commitment. To ignore this fact, or to pretend that it is not so, is to put on emotional blinkers which leave us unprepared for the losses that will inevitably occur in our own lives and unprepared to help others cope with losses in theirs.”

With this quote in mind, I want to point out that we are always going to want to talk about Caitlin, even if our voices crack and our eyes fill up. The pain of our grief was definitely worth the price of our love, and we’ll be paying for the rest of our lives. That’s okay.

With much love for all of you as well,

Maryanne

JANUARY 19–Words from Jess

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Jess wrote a post on her own blog today. It’s beautiful and here it is:

Castro avoided over 600 assassination attempts throughout his life, but even he couldn’t hide from 2016.

2017 is the year of the Rooster and the year that a person who has never held public office is slated to become the 45th President of the United States of America. It was supposed to be the year that I traveled to Red Square with Caitlin. The year of Harry Potter lungs and silicone implants. The year that we emerged with our matching clamshell scars. But it’s not and it won’t be.

This is my first time writing in months. Usually it helps to express and manifest the inexpressible but, in this case, it wasn’t helping. I have tried to make sense of what happened, to play each and every scenario over in my head. Also, everything that I ever wrote, I always sent to Caitlin with the flagrant subject line “DRAFT” – and she would quickly respond with candid feedback. She was my editor.

When I returned from India in the middle of December – from the cacophony of Jaipur and the undulating hills of Udaipur – I immediately flew to Pittsburgh. Caitlin had been on life support for a few days while she waited for lungs. I arrived in the city of bridges, home of the Steelers and quickly enmeshed myself into the daily routine. We – Maryanne, Nick, Andrew, & I – took shifts, ensuring that one of us was always by her side in the CTICU. We held her hands, we massaged her feet, and we read Mary Oliver passages aloud – a small act which seemed to perk up her waning blood pressure.

Last week, I had this terrible moment where a dear friend that I met while living in Kenya texted me after returning from several weeks in Cuba. She wrote, “Did Caitlin get her transplant?” I froze. I slowly typed,“Yes, she did” and then added “but she died” after that. So awful. Little things like that keep happening. I don’t want time to move on because I am so afraid of forgetting. The only image in my head is of Caitlin in the ICU and I am having such a hard time remembering anything before then. There is a dichotomy – as Caitlin’s situation has made me less afraid of dying because I know that she is there (wherever there is) paired with this unyielding desire to live, to really live – for her.

I left Pittsburgh on the morning of December 20th. I had to fly back to San Francisco for chemo but I planned to be in California for just a day or so. I left UPMC – the hospital – and texted the other three, “I’m en route to the airport with Jim but I will see you all in a few days for five little pig Christmas. I’m just a phone call away if you need anything at all. Don’t let leather jacket man steal my chair-bed, keep writing in the chapel book, and keep the sails up…”

Later that afternoon, Caitlin died. She was supposed to live. She should have lived. She should have had the chance to use her new, perfect lungs; to see her oxygen saturation at 100%. But she had to wait too long for her transplant, and her body had been through far more than any should endure.

Below are the promises that I made to her when I spoke at her memorial service:

I promise to do something extraordinary. I promise to make you proud and I promise to keep your light and your spirit alive.

I promise to do all that I can to fix the organ donation system

I promise to plant a garden that will mean for many what Prouty meant for you

I promise to smile at sad looking strangers and to address little pups in your Henry voice

I promise to always be kind

I promise to learn more about astrology and its intricacies

I promise to trust my intuition; to listen to my own voice and to be in a state of non-resistance

I promise to take care of your Mom and Dad and Andrew

I promise to order Watermelon Sherbet in July

I promise to always say Rabbit Rabbit

I promise to do something – once a day – in your honor

I promise to advocate for those who are unable to advocate for themselves; to always be aware of the plights of others.

I promise to listen to Joni Mitchell and to text you when Losing My Religion just happens to play on the radio

I promise to finally see a movie by myself. A good movie. None of that junk.

I promise to keep wearing giant pearls and continue adding to our tribal wrist collection

I promise to find the magic; the unsung beauty.

I promise to attempt to write a Modern Love that tells the story of our friendship; our matching clam shell scars.

I promise to have a day where the only words that I speak are “can I have a water and a muffin?”

I promise to live; to really live; to stay away from the surface and to go deep; deep where the lobsters go.

I promise to keep having faith. Faith that there is beauty in this sometimes tragic life.

I promise to never take my lungs for granted. I promise to cherish each and every breath.

And so, 2017 will be the year of Caitlin O’Hara. My ruby slipper, my person, my heart.

–Jess

JANUARY 16–Ropes Course for Souls

Big Sur. I had it in my head that we needed to get here.

Screen Shot 2017-01-16 at 8.49.13 AM.png — *Fairy Ring of Coastal Redwoods*

The glorious, big days are somewhat easy here. Night is still night, and nights are hard. At 2am the night before last, after getting a dozen messages from people telling me of signs they were sure they received from Caitlin’s soul, I thought, okay, I’m going to ask for a hard sign. I want a monarch butterfly to fly around me in a complete circle. Tomorrow.

And yesterday we went to Esalen for massages and to experience their famous hot sulphur springs.

Time has been a strange thing. Sitting in the hot water with the sea crashing below, all I could think was, Exactly four weeks ago today, Caitlin was in surgery and we were so relieved and happy. And now I am at Esalen, a place that seemed like Neverland.

Nick loved the energy at Esalen and afterward, went to look at the big farm garden there. I sat in an Adirondack chair overlooking the Pacific and I thought about the end of Mad Men and how I wanted Caitlin to see that I was there and a couple of monarch butterflies began flying all around… not right around my face, the way I’d envisioned, but in big swooping circles that took in much more than me.

A few people have said they enjoy reading Caitlin’s thoughts so here’s something relevant, as we all face the coming week.

From: Caitlin O’Hara <caitlin.ohara@gmail.com>
Date: October 2, 2016 at 10:31:46 PM EDT
To: andrew
Subject: Wow read this

https://www.washingtonpost.com/national/finally-someone-who-thinks-like-me/2016/10/01/c9b6f334-7f68-11e6-9070-5c4905bf40dc_story.html

With my big book, Sarum – that I’ve been reading that traces England from beginning of man to now — to this new book I’m reading – which does a similar thing with the slave trade and is already so so so good and opening up news ways of looking at slavery (for me) I just feel like plus alongside this election, which is challenging everything I took for granted ..::it’s an interesting and weird time to be alive and experiencing. I can’t help but imagine these times in the past that I read about, and then think how the time we live in now will just be something that happened to someone else, in the future….It will be this weird blip in history that is a forgone conclusion because it’s over, it’s sorted out. We learn about bad things that happened and somehow they don’t seem quite as unbelievable because the people in the future have figured out why it happens, and we know the ending. I hope it doesn’t happen soon, but at some point the US will no longer be around, or it will be much different than it is now. And it won’t seem weird to people reading about it in history books. We will just seem like the dumb idiots of history who elected trump. Like the sheep in Germany who followed hitler. A question on a test somewhere. We parse the decades out and they all seem so different

– when I read Sarum I have a tendency to do a double take when things are different from say 1650 to 1690—when the area in the book has undergone a huge change. But of course in our modern history entire revolutions and wars happen in shorter times. Countries fall. We are all the same and we all have a collective fallibility and vulnerability. It can happen to any country and any place … but we also are all the same in that we never seem to really learn from history or believe WE are the ones making mistakes.

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

** The slave trade book was Homegoing, by Yaa Gyasi

Sarum is by Edward Rutherfurd

JANUARY 13–Glowing in the Dark with Mary

We have been here a week—feels like much, much longer. The rains kept us from going straight to Big Sur as we had planned, but that turned out to be a good thing. We were made to live inside the moments we found ourselves in. We did things we hadn’t planned to do: see Malibu and Beverly Hills and Santa Barbara and Miles-and-Jack country.

Screen Shot 2017-01-13 at 7.27.50 AM.png — *..and just a flutter of, like a nutty Edam cheese*

Screen Shot 2017-01-13 at 7.28.10 AM.png — *Spirit Bear for Caitlin and for Gary Richardson*

Strange, small-world, meaningful fact: our wonderful neighbors from Pittsburgh, Mary and Ralph, actually own a place just down the beach from where we stayed in Santa Monica. All this time, when they would go to CA, I thought they were somewhere else. (Never having been here, I didn’t have much of a map in my head.)

So we got to visit with them a bit. And that was surreal and healing and very, very good. They are kind friends who will always be in our lives.

Another Pittsburgh–now life–friend, the wonderful writer and soul, Jane McCafferty, has been so supportive with her words and thoughts and the other day wrote, “If you have a favorite saint, or a connection to Jesus, try calling on that now— in my experience this can be real medicine.”

I liked that advice and realized I’d already taken, like Caitlin, the stoic Mary as my own. At the last minute, I had packed the tiny glow-in-the-dark Vierge Marie that I purchased at Chartres when I visited there with Caitlin in 2004. After another 2am bad dream last night, I’ve decided I’m going to keep her glowing figure on my bedside table from now on.

I have a feeling that the real Mary would not have taken herself too seriously, and thus wouldn’t mind this version of herself.

Light inside darkness is always a good thing.

Screen Shot 2017-01-12 at 4.56.36 PM.png — *La Vierge Marie*

As soon as we arrived here last week, I realized I had to buy a stronger chain for Caitlin’s bird ring. I didn’t trust the one I had, but I did trust that I would find the right thing at some point, and as Nick and I were walking up the main street in Santa Barbara the other day, I glimpsed a store that looked to be full of necklace chains. Nick walked in and bee-lined straight to the perfect one. The right length, the right color. “Look up,” he said.

I began to see her everywhere, of course. Even in the most unlikely places.

And also in very likely, lovely places, like this stunning stucco church in Santa Barbara called Our Lady of Mount Carmel.

Screen Shot 2017-01-12 at 4.51.39 PM.png — *St Francis and his birds and Mary*

Screen Shot 2017-01-12 at 4.52.15 PM.png — *Mary and 65 Roses*

She is everywhere, once you know to look.

–M

PS:

Beautiful song sent by Jane.

JANUARY 12–A Sampling of Messages

People are asking how Nick is. He’s not on social media, so it’s hard for people to tell. He’s up and down, as am I, but we are a pretty seasoned see-saw act, and we are doing okay.

screen-shot-2017-01-12-at-7-53-34-am — *Amazing, but we actually can look somewhat normal*

We do both want to say how very grateful we are for all of the wonderful messages we are receiving. They really help….like writing on this blog helps, like anything that keeps Caitlin close helps. We are going to share a couple of them here, with thanks to the people who’ve given us permission to do so.

from Meghan Greenberg Lockwood

About Meghan: We have such a strong memory of dropping Caitlin off to her first day of school at Fay, and of Meghan making a point of greeting Caitlin and offering to walk in with her. Meghan’s note was delightful to receive because it reminded us that 1) Even though 33 is young, Caitlin was around for a long time, and 2) She had mischievous memories we knew nothing about.

Dear Maryanne and Nick,

I wanted to let you know how much I have been thinking of you, and of Caitlin. So many memories have come back to me these past several weeks, memories that I didn’t know I had. The Caitlin I knew best was elementary and middle school Caitlin, and as you know, she was what my grandmother would have called a hot ticket. In the spirit of keeping her light alive, I thought I would share a few of these memories.

During art class, Caitlin would sing very dramatically, “I’m off to New York and I won’t come back till Saturday night, after the SHOW-OW-OW!”

Other times, she would burst into Unchained Melody. She’d be sitting quietly and get a little glint in her eyes and then belt, “OHHHH my LOVE my DARLING, etc.”

At sleepover parties, after pizza and cake, she liked to get under the table, crawl around, and then grab someone’s feet and tickle them. She called it “The Game of Not Knowing,” because you never knew when your feet were going to get grabbed!

I remember one time she was at my house for a playdate recounting to me and my mom an amazing meal she had had. She turned to my mom with wide eyes and said in a conspiratorial stage whisper, “I had to unbutton a button!”

Early on in our French career, Madame Naumes told us that the letter ‘h’ was not pronounced in France. Caitlin looked horrified and said, “But then…how am I supposed to say…I live in…BABY DONKEY LAND?!” (Get it? Ashland, but the h is silent…)

When we did the Explo day camp at St. Mark’s, our little crew performed Ace of Base’s The Sign as a dance number, and Caitlin made a sign to hold that said Slippery When Wet. Even in the awkward middle school days, she made everything she touched cool. I remember a cute boy from Texas named David who had the biggest crush on her!

On kitchen crew, one of her favorite things to do was to make mixed drinks from the soda machine, like different combinations of Sprite, orange soda, etc. I remember her telling me in the mornings about how she had a new recipe in mind for that day.

On a less silly note, even during those adolescent years when everyone was complaining about their parents, I don’t remember her ever joining in except for the mildest of jokes about her mom handing her a banana and saying, “Eat your potassium, Caitlin.” She had the coolest parents, and she knew it, and she loved you two so deeply her whole life.

With all my love and most heartfelt sympathy,
Meghan

P.S. Maryanne, my book club asked me to pass along their condolences. They loved reading Cascade and meeting you, and I know they’ll love reading whatever is next.

P. P. S. On the topic of the signs you’ve been experiencing, have you read this essay from 2015 by Lisa Chase? I thought it was amazing.
http://www.elle.com/life-love/news/a30986/losing-my-husband-and-finding-him-through-a-medium/ ****

*****More on this later

from Betsy Kemper French

About Betsy: Betsy is a wonderful writer and fellow Emerson MFA grad. We actually never had any classes together, but we’ve somehow kept in touch over the years. She is a beautiful writer and thinker, and this letter really affected both Nick and me. Plus: kittens.

Maryanne,

I have been thinking about what to write to you. It’s silly—there’s no obligation, and I’m on the periphery of your life. I never met Caitlin. I don’t know your friends and family. And yet, I feel a powerful connection to your story. It’s not just me. Friends of mine who don’t know you at all became readers of your blog, pulled into this miraculous, tragic, and painfully beautiful journey.

I’ve written before about connections—between people, animals, nature, events. It can’t be scientifically explained, but they are everywhere, and I feel the most peace when I wonder about them. Your writing through this blog has allowed me to feel so many connections with people I’ve never known. It’s like what a great novel does: we get to know and love the characters like they were in our own lives, like we have had experiences and memories with them. You’ve allowed that with Caitlin and all the other “characters” in your “story.” Yet, all of these people are real, and so our connection to them is real, strengthened by your honest writing, the pictures and videos, the text messages, the program from her service. So, is literature allowing us to mimic these connections that we should have in our real lives? So much about your writing has made me ask big questions.

Here’s one way my connection with Caitlin has affected my life. The other night, my youngest daughter, Charlotte (you may remember: “I AM THE BOSS OF ME”) was having trouble getting to sleep. She is so bright, creative and funny, but suffers from a lot of anxiety, even at the young age of nine. I sat on her bed taking some deep breaths with her. Her fear makes me anxious too, and I don’t want her to feel that. So, when I’m trying to stay calm, I often image an angel—yes, the stereotypical one with the wide white wings, surrounded by a golden glow—standing just behind me, putting her hand on the middle of my back. I imagine her light coming into me and calming me, and then that light traveling to Charlotte as I stroke her head. The other night I had that same image, but this time—I hope it’s okay to tell you this—Caitlin came to mind. It was her light and strength that made me feel good and steady. It was her light that traveled from me into Charlotte’s little body. I hope you don’t feel this is “using” her story or exploiting it in any way. But through your writing and hers, you created a stunning work of art that offered her to all of us. St. Caitlin. St. Kitten.

But it’s not just me. My friend Kate Kertscher follows your blog as well. Her oldest son has been asking for a kitten of his own for some time. Kate has three kids and a large dog and an old cat and a very busy life, and was hesitant about adding another creature to the chaotic mix. Yet, the other day when I spoke to her, she said they decided to go ahead with it. She said, “I just thought of Caitlin, and it made me realize how silly I was being! Of course we should get another cat!” **** Seems appropriate too, that it’s a kitten.

So, we are carrying her too, in little ways, but still. Thank you.

I wish I could give you something back, some advice, but I can’t. I haven’t been through anything close to your loss. I haven’t been a mom as long, or a mom who has had to deal with such tragedy. But I can still say what comes to mind, what I hope will help as you make your way through these raw, painful, early days of loss: Stay close to nature, Maryanne. The kind of nature where you can taste the dirt and feel the salt breeze on your skin. Smell the rain or lightning. Feel the snowflakes on your face. That is where I most strongly feel the people I’ve lost in my life—even if they weren’t nature lovers themselves. I know you will feel Caitlin in the silent majesty of those redwoods, where it seems time has stopped and their powerful size reminds us we are not the center of the world, but a small part of something unimaginably intricate and beautiful. The souls of those trees reach out to ours—all the same somehow. I bet you will feel her soar through you when looking at the gorgeous coastline, the sunrises and sunsets, whether in California or here at home.

And keep looking for all those signs of positivity and love. They will always be there.

My thoughts are with you and Nick and Caitlin, wherever she may be.

XO
Betsy

*****Update: the boy got TWO kittens

from Ellen Tarlin

About Ellen: Ellen and I met at Emerson when Caitlin was 8. Ellen watched Caitlin grow up. This is a snippet of a recent note.

I remembered that when I was raising funds for my friend who had brain cancer, Caitlin donated. And when I was spreading the word about fundraising for my friend who had lost her husband, Caitlin donated. She was the last person I would have asked for money but one of the first to give.

Love and peace,

–M and N

JANUARY 4 –Bird and Bindi

I can’t even begin, right now, to sort out all of the almost supernatural occurrences of the past weeks, write them down, pass them on. I know I am meant to sort all of it out, in words that make sense, to ultimately help other people. And I will do that. But right now I’m super tired.

Still, to remind those who care: there is work to be done. As everyone has been informing me, France is now one more “opt-out” country—-meaning you’re an organ donor unless you opt out. We are going to work on fixing as much of the broken transplant system in our own country as we can. I’m grateful to everyone who has volunteered to be part of the army, and we will be in touch.

For now though, Nick and I are going to California. My wonderful brother will be warming the hearth fires here, minding our house, so we don’t have to worry about leaving it untended. Caitlin’s tree will be up through Twelfth Night and beyond.

California is a place Caitlin and I had planned to visit ‘after transplant.’ (How easily that phrase had become part of our everyday conversation; seems sad and naive now, but I’m grateful for our optimism. It kept us going.)

Oddly, neither she nor I have/had ever been to California, so we will take her with us in the only way we can: spiritually. We will drive up the Pacific Coast Highway, stay in Big Sur, and eventually visit Jess in San Francisco. We will see redwoods, and honor the one so foolishly cut down by the arrogant and sorry young souls who make up the current administration of Boston Children’s Hospital.

A few years back, in her beloved Paris, Caitlin bought herself a tiny, bird-shaped ring. It became one of her most treasured possessions. I just couldn’t bear to put it into the

<< coffin, horrid word>>

Instead, I’ve tied it to a necklace of mine. I added a red bindi from the little sticky-pack Jess brought back from India. I put the bindi in between the bird’s wings. I will wear it on our trip and Caitlin will be with us up at Big Sur and in San Francisco with Jess, and with us among the redwoods that stupid humans haven’t yet destroyed.

My niece Emily wrote this to my sister the other day:

Know what’s so strange? A few days after Caitlin passed I heard this poem called ‘the art of losing’ on an NPR podcast and it felt really significant to me so I looked it up and saved it and now I’m sitting here reading the writings in Caitlin’s pamphlet from her service and that poem is in there

Later, my sister wrote:

Today is my first day back at working out. I always put in a podcast to keep me on the treadmill and it turns out the first one in my queue was the one that ends in that poem. ❤

These are the coincidences that are not coincidences.

The only omission in the service program was the title and author of the quite-famous poem–which is actually a form of poem called a villanelle, a form that itself, is very hard to master….

ONE ART

by Elizabeth Bishop

The art of losing isn’t hard to master;

so many things seem filled with the intent

to be lost that their loss is no disaster.

Lose something every day. Accept the fluster

of lost door keys, the hour badly spent.

The art of losing isn’t hard to master.

Then practice losing farther, losing faster:

places, and names, and where it was you meant

to travel. None of these will bring disaster.

I lost my mother’s watch. And look! my last, or

next-to-last, of three loved houses went.

The art of losing isn’t hard to master.

I lost two cities, lovely ones. And, vaster,

some realms I owned, two rivers, a continent.

I miss them, but it wasn’t a disaster.

—Even losing you (the joking voice, a gesture

I love) I shan’t have lied. It’s evident

the art of losing’s not too hard to master

though it may look like (Write it!) like disaster.

–Maryanne