Mothers and Daughters – Page 3

SEPTEMBER 18 — Matches struck in the dark

Update needed, as Caitlin would say.

Three years ago today, on the 9-month anniversary of her lung transplant, during a walk around Walden Pond, I decided to start writing what I called “the Caitlin book.” I wasn’t even sure what kind of book it would be, or if I could manage to write it, but it seemed a worthy goal, and I had no idea what else to do with myself besides lay down and die.

I wrote ploddingly, like a zombie at first, and then as if in a fever. It took two years. I was fortunate in that it found a very good home, very quickly, last fall, with HarperOne, a visionary and soulful house tucked inside the busy and sometimes spirit-crushing world that is New York publishing.

Today, three years later, I can announce that the book is well into production, with a cover and beautifully designed pages. It is now a book that can exist in this world without me, and there’s a very large measure of relief in that.

People have been asking when they can pre-order and there are two answers: right now and thank you. Pre-orders help books so much, you may have no idea, but it’s the age-old story: the more interest there is in something, the more interest there is in something, and the more popular and supported that something becomes. I do believe that this book is very worthy of support, so thank you for pre-ordering, and sharing this page with others, and gifting it, and talking about it.

The book is about my search for revelation and meaning, for answers to the big life questions: Where is she? Is she? Is there more to life than this life? Does consciousness survive death? Does my existence have any real purpose? Does anyone’s?

I wrote it, but some of it almost feels divinely downloaded. And Caitlin’s old-soul wisdom permeates the entire book, of course.

People ask about the title. LITTLE MATCHES is a riff on a few lines from a favorite book of mine. Those two little words —”little matches”—represent all that the book is to me, and what I hope it will be for others.

Part 3

Chapter III

“What is the meaning of life? That was all — a simple question; one that tended to close in on one with years. The great revelation had never come. The great revelation perhaps never did come. Instead, there were little daily miracles, illuminations, matches struck unexpectedly in the dark; here was one.”
Virginia Woolf, To the lighthouse

When you write a book, you also end up writing a little script whereby you distill its essence so that you can talk about it at events and such. Here’s what I wrote for the preface and what I know I will say over and over and it will always be a truth: I am not the first person to have lost what was most important to me. Humans lose every day, and lose hard: children, beloveds, sacred homelands, freedoms. LITTLE MATCHES is for anyone who loses hard and asks, Now what?

♥️ Thank you.

Pre-Order Links to Receive Your Copy on Pub Day:

30 JUNE––Arc of a Life, a heart intact

I thought that losing Caitlin taught me all there was to know about love and loss and “you don’t know what you’ve got till it’s gone” but with my mother newly departed from this earth, I’m reminded that life is constantly teaching, and my faulty human self always has more to learn.

The practical side of my nature has often been bewildered by the fact that after someone’s death, the people closest to them seem to develop amnesia regarding who in fact the deceased had been. Before my father died, my mother, who had been divorced from him, always referred to him as “your father.” After death, he became good old “Dad.”

I saw this happen with others. Friends and the parents they’d never really gotten along with. Exes. Although I certainly agreed with recognizing the good in a person, I was perplexed by the all-over coloring in of the negative.

For four months now, we knew our mother could pass at anytime, but it was only during her last days, when she was definitely in transition, that the alchemic something happened inside my own brain. We were finally allowed to visit her in hospice, where she lay uncommunicative, and as I held her hand, I could not see anything but the positive in her, and wondered why on earth I’d ever been bothered by the negative.

Later, I sat at my desk to write her obituary. One’s final day is such a punctuation mark, the arc of the life laid out, with all the good (and the generally understandable reasons for the not-so-good) there in plain sight, forcing us to consider, what really matters in the end?

Some people seem to know what really matters from birth. Caitlin was one. And I have siblings and nieces and nephews who are others.

My niece Jillian summed up “what matters” very well in this Instagram post, and I would like to share it.

jillian_hyllantree_twisla

This light crossed over today, on her way home to join the ancestors ✨
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In March, as covid came to Maine, we got a few hours notice that the facility she was receiving end of life care at would close to visitors for the foreseeable future. I was the only one who could drop everything and get there that day to be with her. I asked her what she wanted from the outside world. Pink lipstick she said. That sums up her personality exactly; truly a Sagittarius, bucking all social norms, always looking for an adventure…
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So I bought pink lipstick and soup from a local deli and spent a few hours with my Nana while I could. I was afraid I might never get to see her again. I tried not to show it. She told me that day that she had never thought she’d die, but she realized now that it was happening.
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For the last three months we have only been able to see her through a glass door, talking on speakerphone. Every single time was painful. I kept feeling like she was holding tight, waiting to go. Waiting for covid to pass first.
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Then on Wednesday, because she had transitioned, I was able to go see her. After months of seeing that building as an impenetrable fortress, I found myself casually walking through it’s doors. I put on my medical gown, my mask, and went to find my grandmother.
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What an honor, unexpected relief and joy to be with her as she died. To massage her wrinkled hands, her shoulders, her arms. I traced her face with my fingers the way she traced mine as a child, something I always loved, something that feels so gentle and loving. .
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Earlier that day I had an ancestral healing session. One of the many exchanges I’m in the midst of for the ancestral healing practitioner training I’m in. In the session my ancestors showed me the way she was being held, surrounded by love, nurtured… They showed me the healing taking place between her and her many years deceased mother. They showed me how well received she would be.
Humans are complex. We have as many faults as we have strengths. But at the core, this is a woman who lived and died with her heart intact. And for the example, I’m truly grateful.

These past months, I’ve been grateful to have siblings who are people of good character. When our mother went on hospice care in April, and with all of us unable to visit, we began lighting candles and texting photos of them to each other every night at 8pm. It became a lovely ritual––the buzz of the phones, the screens full of light. I shall miss it.

✨ Florence Daly Bavaro, 1936-2020 Obituary ✨

2020 — Big World

On New Year’s Day 10 years ago, I woke up to a text from Caitlin.

She was still living independently and rarely talked about long-term survival, but transplant was looming. Transplant was on her mind, and it showed in that confession of uncertainty tucked inside the bigger message of optimism and love.

She did see that blue moon, in Pittsburgh five years later. I write about it in LITTLE MATCHES:

We watched it on her birthday, from our window high on the 15^th floor, and here it is, still existing inside my phone: the full moon shining through a band of bright clouds, the lights of Mount Washington reflecting in the black Monongahela River below. Caitlin stood in front of me and the feeling then was like the feeling now, like I am existing inside multiple dimensions as I recall how I recalled that 2010 text and our first, frightened trip to the city where we had come to find ourselves trapped inside time, waiting.

Time. I’ve always had a complicated relationship with it. It’s always hurting my head. I’m the kind of person who constantly thinks, “One week ago, __ happened,” or, “Exactly two years ago on this day, we were ___ ” or “How can it be ___ since _____, when it feels like maybe 3 weeks ago at the most???”

I cannot believe it is 2020. That it was five whole years ago that we had just moved to Pittsburgh and were saying to ourselves, “In five years, this will all be long over…”

I amused myself yesterday by making some illustrations of how muddled and partially erased the last decade feels.

At Christmas that first year in Pittsburgh, I put a small rubber ball, printed with the map of the world, in Caitlin’s stocking.

“After transplant, the world will be yours,” I said.

She dared to hope for the freedom to travel easily, to go to Africa with Jess. Jess is there now, officially opening the doors of THE LEO PROJECT IN HONOR OF CAITLIN O’HARA on January 17th. She’s got a bunch of friends with her, to celebrate her incredible accomplishment. I don’t think her friend Perry Tyler will mind if I share a couple of her stunning photos. I’d ask, but they are all climbing Mt. Kilimanjaro as I write…

The world is so big and beautiful. What do the next ten years hold for you?

For me, with LITTLE MATCHES coming out about a year from now, I almost feel like, “my work here is done.” But I will spend the coming months preparing for publication and planning how I will talk to audiences about the many topics the book speaks to.

I can’t wait.

–Maryanne

“I always pull back and picture myself in time and in space geographically. It makes me removed enough to ultimately feel that there is not much I can do to change the shifts of the world, but also inspired enough to think – what is my role in this lifetime?”–Caitlin

DECEMBER 6 — Tiger, Angel

Thank you so much for the outpouring of caring. Reading all the notes made me teary and grateful for all of the wonderful people in my beautiful daughter’s life. I’ll try to update every day, but sometimes it might be hard.

Things are changing quickly. After a traumatic couple of days, Caitlin was relatively stable in the ICU yesterday. Late last night, I even texted a simple “things are good” to a few people.

But part of Caitlin, I think, believed that she “lost control” over the weekend, and caused herself to end up on ECMO. Yesterday she was trying to do everything she could to control her situation, control her life. She was talkative, questioning, in charge and speaking her mind, and also quite funny.

She’s always been her own advocate, but she pulled no punches. When someone did something wrong: “You should have known. Don’t do it again.” “I usually say please and thank you but I can’t waste the breath.” To the attending ICU doc who was part of the ECMO procedure: “I like you. You’re good.” To the annoying resident who started to examine her: “You just touched your hair, change your glove.” To the nurse last night: “You’re good. I bet you’re a Capricorn.” “I am,” he said. “I bet you’re good with money.” “I would be if I had some.”

But she wasn’t herself, spoke in a flat, blunt, odd way, and that was beginning to alarm me. Still, I reasoned, she had been through a lot. I hoped she would sleep and come back to herself. She did not sleep. Instead, she became increasingly hard to talk to and would not stop talking. She took my new brown notebook and began to write, constantly—- ideas for her care, new plans, instructions for all of us, lists, trying to account for every day, every hour. Her heart went into SVT again, and she had to be shocked again. By 4am, she still hadn’t slept and was no longer making sense. It wasn’t even like she was Caitlin.

Sleep deprivation on top of trauma. What a combination.

We had promised her we would stay close to her the first night, and we did, but by 5:30 am it was clear we were doing more harm than good. Nick went to sleep in the family room, where I’d managed to get about 6 hours “rest” on a chair. I went home and showered. I was almost back to the hospital when Nick said she still hadn’t slept and was still writing as fast as she could in the notebook and that the team thought it best we not see her for a while.

We talked to the attending about the fact that her condition was no longer stable. We talked about options. Shortly thereafter, the attending called us back and said the team had decided to intubate her. That allows her to breathe on a ventilator to rest her body/her lungs. Tomorrow they will put in a trach (which she would have likely gotten after transplant anyway.) The trach lets them have easy access between her body and the ventilator, and access to her airways. She’s having trouble coughing, so this will help. Tomorrow, they are also going to do a bronchoscopy, where they go into the lungs and clean them out. None of this is ideal but it’s now necessary, and it’s common, and it saves her life for now.

A while later, her wonderful nurse called (I need to clone this nurse) and explained that Caitlin was finally resting but told me, with honesty and compassion, about how out-of- control and combative Caitlin had become. I’ll spare the details but basically, the kitten had become a thrashing, panicky tiger. Erin, God love her, said, “Right before sedation, I told her, ‘Caitlin, I don’t care what you say or do. Right now, I’m going to save your life.'”

And that seemed to get through to her.

Now, on the vent, she can be a bit more sedated, and as comfortable as possible… and hopefully her new lungs her surgeons have promised will be inside of her soon.

I want to weep with gratitude for this hospital, the only one in the country that will accept such high-risk transplants, the people other hospitals have rejected because the transplants might fail and mess up their shining success statistics.

The good news? Remember yesterday I wrote about that other family from MA? The young CF woman had also been intubated and on ECMO and had even been on dialysis before transplant. Well, last night I went up to the terrible cafeteria because I was desperate for something to eat and there they were! The mother and daughter, the daughter on her feet, walking around ! 3 1/2 weeks after this same trauma, after transplant. I felt like I was seeing an angel.

–Maryanne

Mostly Companion, written by Caitlin

At some point when I was little, my mom and I started referring to one another as our “mostly companion.” It probably grew out of the time I was having surgery when I was 11, and was in the hospital a lot. We would get overly tired, stressed, and…really silly. We were absurdly often at our funniest when things were worst. I guess that is common for people in trying health situations, and it’s a nice silver lining. The other day, in the hospital while I tried to eat lunch, my mom put on quite a show of impressions and we were laughing so hard. The game was to do one small word, look or movement from a movie…not a whole line. Her imitation of Salieri yelling “MOZART!!!” from Amadeus was the best…she has an incredible man-voice that she harnesses from deep within. Oh my goodness, maybe you had to be there.

I don’t write much on the blog, but today is the day to do it. For those of you who know us well, I am so close to my mom that it sometimes terrifies me. Maybe it terrifies her too. I know how lucky I am to have a mom like her, and parents like mine, and our situation — my situation — has made our link stronger, and sometimes that’s scary. We both know that there will be a time, hopefully, strangely, where I am well again and we live apart like typical adult mother and daughter, and we will look back on this time with nostalgia. Right now we are suspended, and we do puzzles together and watch Mad Men and she gives me leg massages, and everything, good or bad, is heightened. Everything makes me cry these days, good things more often than bad — so there’s a lot of appreciating that goes on. But its also draining, exhausting. Living in the moment is a good adage, but like anything, there can be too much of it.

My mom is doing everything for me, she has uprooted herself. My dad is living alone in MA when he is not here, and I know its hard for him in a way I can’t imagine. Andrew is back and forth as well. Here since December though, non-stop, has been my mom. She cooks, does the laundry, listens to me, sits with me in the ER, in the hospital…she even feeds Henry homemade food that she makes herself. Here in Pittsburgh, where she knew no one, she has made friends and found interesting things to do, always finding something to be enthusiastic about. Even writing this now is making me want to be more like her, and I feel even more thankful just putting it into words.

She has somehow found time to write everyday, and has since July 1st, circling the date in red when she is done — she has remarkable follow-through with things. It has taken me over 2 months to gain 4 pounds, and I WOULD NOT have been able to do it without her. When you get evaluated for transplant, part of the evaluation is making sure you have a good support system, because it is so vital to how well you do. This might seem hard to grasp to a healthy person who thinks that ultimately, you can get through anything on your own if you really have to. I am telling you – haha – you can’t. You need people, and I wouldn’t be here without her.

I am also aware on a day like today how hard it must be for some people, who have to be painfully reminded each May that they don’t, for whatever reason, have that relationship. It reminds me again that everybody has some kind of pain, as well as some kind of good in their life, and that none of this is a contest. As hard as it is being sick and being here, my mostly companion and I are having some laughs. There’s probably a lot of people out there with great lungs, and no mummy. Everybody is just trying.

As it usually is when you love someone so much you can’t put it into words, everything I have written here feels inadequate. But most of you already know what a great mummy she is, I am just here to tell you …that she is even better than that, and that I love her so so so much.

happy mother’s day!

DECEMBER 8–Packing for Pittsburgh

Anyone who knows us knows that GROUNDHOG DAY is a favorite family movie. We know every line, and even Henry is part of the act—he was born on February 2. Caitlin and I were watching the movie a few weeks ago, and fell off our chairs with laughter when we realized that the opening segment (see above) clearly shows the apartment building where we will be living! Who would ever have thought??

We are getting ready to head there soon, to wait out the winter. The early snow and cold temps have made us a bit nervous; it’s best that we settle in before Christmas.

The furniture at our apartment was delivered last week. Everything is pretty much ready! We’re going to make the most of this adventure. Thanks for all the continued prayers, good thoughts, hellos, and help.

–Maryanne