Hey everyone. Here’s our site for keeping all of our far-flung friends and family abreast of what’s happening with the kitten’s long, strange, lung transplant trip. Yes, of course that’s a candy cigarette. We love you all.
I’ve been meaning to write down a bunch of coincidences for a long time. I’ll start with this most recent one.
We are home, as most know. We escaped Pittsburgh for a few weeks. It’s been strange but great to be back.
While here, I was reading an old journal from 2010. Back then, Caitlin, her friend Alyssa and I had had some “soul readings” done. Each of our readings was completely different, quite uncanny, and whether we believe in the idea of souls or not, what I will recount was interesting. From my journal, 2010:
At the end of Caitlin’s reading, during which she had revealed nothing about herself or her beliefs, she told the reader about recurring “Nazi” nightmares she has had for much of her life.
The reader assured her that these dreams did not mean she had been a Nazi. “You could not be bad! You had a life in that time, but it wasn’t Germany. It was Czechoslovakia. You were a musical prodigy, literary, from a cultured family. You were killed at age 11.” Then she asked, “Did something happen to you in this life at 11?”
The whole time Caitlin was telling me this, my entire body was full of prickles and I started to cry.
Caitlin said yes, and the woman said that often, a soul will reenact an earlier trauma, at the anniversary age.
When Caitlin was 11, she was very ill and spent much of the year in Children’s Hospital. She had surgery to remove part of her left lung, which had been ravaged by an infection. She experienced a bunch of complications that necessitated a second surgery. There were more complications. We feared we would lose her.
The musical prodigy part was also interesting because when Caitlin was young, she read music so effortlessly that her music teacher thought she practiced all the time. She never practiced (the lazy sod!)! In fact, her whole soul reading had been about musical lives — she had once been someone who wrote patriotic battle tunes to send troops into war, which had supposedly been a great job. The reader said that in this current life her soul had begun to experience magical thinking regarding music, i.e., if she pursued music, something bad would happen. Her soul type couldn’t reconcile the pain associated with music — writing battle hymns, though it had been a respected job, meant being a part of war. Once her parents were killed in a concentration camp, it ruined music as a calling.
A page later, in the 2010 journal, I wrote:
So, just to do it, I googled “pianist, child prodigy, Czechoslovakia, killed.”
And the first hit was about a book about 1940s musicians, “Music in Terezin, 1941-1945.” Google had highlighted this passage: “Her family moved back to Czechoslovakia where the five year old Edith started her musical studies. As a child prodigy of eleven…”
“Beyond the Border of Love” was a short story I had recently published in the North American Review. It was about a musician named Edith.
Now, years later, rereading the 2010 journal, I recognize “Music in Terezin” as the book I have been using for research for my new novel! I did not remember that I had heard of it prior to this year (2016.)
So after I wrote this post this morning, which Caitlin did not know about, I went into her and she said, “Oh man, I had horrible nightmares last night!”
“So did I,” I said. “I dreamed we were packing the car for Pittsburgh, then we realized, Hey, we don’t have to leave yet!”
“Ha,” Caitlin said. “You don’t know nightmares until you’re dreaming you’re traveling down the River Styx. And I can’t remember if I dreamed about it a few weeks ago. What if it’s a new recurring dream?!?”
Caitlin remembers: “The reader asked if music was important to me. It was hard to answer. From an outsider’s view – I am not a musical person. That makes me sad. Inwardly…I don’t know how to say that music is everything to me….it is my life’s blood, the only thing that can uplift my soul. I don’t even play an instrument though.”
Yesterday my dad sent my mom and me a photo of a little menu he had drawn up: “How to entertain yourself when your wife is in Pittsburgh.” He had gone to the Ashland farmer’s market that morning — where he is a regular, making the rounds — after returning the previous night from the Vineyard, with fresh fish caught by his buddy there. The menu had smiley faces at the end of certain options. For Starters there were “Cotuit Oysters — Just Grilled :)”, Mains came with a choice of greens which included the option of “Snap Peas — as is. :)” There was Rosé from Provence to drink and “Trio of homemade cheeses by French lady from farmer’s market Ashland” as a finishing course. (He doesn’t like sweets.)
This menu ripped my heart out of my chest. I’m an easy cry — but the ‘sad dad’ phenomenon has always made me cry. “Sad dad” is not about dad being sad…it’s about a dad, any dad, being sweet, vulnerable, nice, cute, making an earnest effort. I suppose anyone, anywhere making an “earnest effort” is enough to bring me to tears. Smiley faces, tryers for happiness in the face of difficulty. It all just gets me. The first time I became aware of the emotional power of ‘sad dad’ was when I was about 10, not quite a teen but no longer a true child, and my father had secretly, without telling my mom, ordered a live Care Bear to show up at my birthday party. I was way too old for this, and when the Care Bear showed up I felt for the first time what it was to be embarrassed not only for yourself but for someone else, and wanting to protect them from feeling bad. That combination of feelings implodes inside your stomach and turns into “sad dad.” I shared this feeling with my friend Katie, who of course, as with so many things, understood completely. Over the years our moms shared in our talking about the sad dad thing and we’d send pictures or share stories. It would always be sweet and small moments — a t-shirt or a gift, a big smile and a wave. They understood it with their fathers too, and other people could be sad dads, on tv or in movies, people we didn’t know. Eventually, in Katie’s case, she had a child and experienced sad dad double-time – sad husband, sad grandpa. Even a not-so-great-dad can elicit the feeling, so long as there is a painful moment of earnest trying, even if it fails. The complicated nature of all parental relationships — the drive we have to connect, protect, forgive, we are all vulnerable to that. The resulting feeling on our parts ends up being one of wanting to hug them and cry….and of course they are always baffled. It seems like pity, I am sure. No one wants to be labeled ‘sad’ something. I have seen Katie, or my mom or dad or Andrew look at my small frame (which doesn’t seem small to me), squeeze me and say, “Oh Kitten” and I think, “What? Don’t oh Kitten me, I’m doing just fine” … No one wants to be the painful one, tugging at people’s heartstrings. But we are, and thank goodness for that, because just as everyone wants to feel loved and protected, I think they also want to do the same for someone else.
My dad has spent his life providing for me, and subsequently protecting me. At 32, I am not married yet or having kids, but waiting for a lung transplant and still dependent on my parents. I am like the family doctor around here, watching their diets and advising them on prescriptions, checking moles, doing all the worrying. Maybe it is the one way I can protect them all, until I can stand on my own and become independent. Maybe that’s where sad dad really comes from: a need to protect. I love him so much, and I suppose the things we love we want to protect, even in situations when we are not in the role of protector. My dad and I have a great time together; there are certain specific emotional moments where, despite my closeness with my mom, I find myself reaching out desperately to my dad. I am not even sure if he knows it. Perhaps they are why we chose each other in this life. We clash too, and it has made us have to try harder to achieve the friendship we now enjoy. We are a lot alike, and I think two people who are so alike do best if one is not so dependent on the other.
My dad is complicated––unafraid to change. My mom once pointed out that if he sees something he doesn’t like in himself, he will and can change it…which is pretty rare. It is true. I like to think I have inherited that characteristic. My dad always makes everything look beautiful – even if it’s just a snack of cheese and crackers, or rocks arranged on a beach, or items on a table while we’re waiting for dinner. I did not inherit that as much. He is an artist at heart who sees a unique way of combining things in everything he looks at. Lately he has been sending me cards with birds on them. My grandfather, his dad, whom they called “Gigli” (after the famous Italian tenor) because of his lovely singing voice, was a milkman who kept birds. I love birds too, like my grandfather. My dad and I seek common ground. We keep up our earnest effort, because we love each other, and of course, now, I have tears in my eyes.
And here’s to Vito, my own sad dad. Thanks for looking out for us, from wherever you are.
Caitlin has been listed for lung transplant for 2 years, as of today.
( n )
n stands for everything I don’t have the energy to write. In fact, I wasn’t going to post anything today—-there is nothing new to say, but—-I can’t let the day pass without marking the date.
So! In the spirit of positivity, here is a fairly recent photo from a good day, when Caitlin was feeling well. I post it as a harbinger of good days to come.
On this particular March day, Andrew pushed her up and down something called the “roller coaster” trail at Frick Park. They came upon this rustic hut.
Today also marks 100 years of Irish independence, an important day in our family. ☘ Easter, 1916. ☘
Update: I’ve alway read Yeats. This poem has nothing to do with Caitlin or our situation. I’m just noting the big Irish anniversary….
I have met them at close of day Coming with vivid faces From counter or desk among grey Eighteenth-century houses. I have passed with a nod of the head Or polite meaningless words, Or have lingered awhile and said Polite meaningless words, And thought before I had done Of a mocking tale or a gibe To please a companion Around the fire at the club, Being certain that they and I But lived where motley is worn: All changed, changed utterly: A terrible beauty is born. That woman’s days were spent In ignorant good-will, Her nights in argument Until her voice grew shrill. What voice more sweet than hers When, young and beautiful, She rode to harriers? This man had kept a school And rode our wingèd horse; This other his helper and friend Was coming into his force; He might have won fame in the end, So sensitive his nature seemed, So daring and sweet his thought. This other man I had dreamed A drunken, vainglorious lout. He had done most bitter wrong To some who are near my heart, Yet I number him in the song; He, too, has resigned his part In the casual comedy; He, too, has been changed in his turn, Transformed utterly: A terrible beauty is born. Hearts with one purpose alone Through summer and winter seem Enchanted to a stone To trouble the living stream. The horse that comes from the road, The rider, the birds that range From cloud to tumbling cloud, Minute by minute they change; A shadow of cloud on the stream Changes minute by minute; A horse-hoof slides on the brim, And a horse plashes within it; The long-legged moor-hens dive, And hens to moor-cocks call; Minute to minute they live; The stone’s in the midst of all. Too long a sacrifice Can make a stone of the heart. O when may it suffice? That is Heaven’s part, our part To murmur name upon name, As a mother names her child When sleep at last has come On limbs that had run wild. What is it but nightfall? No, no, not night but death; Was it needless death after all? For England may keep faith For all that is done and said. We know their dream; enough To know they dreamed and are dead; And what if excess of love Bewildered them till they died? I write it out in a verse -- MacDonagh and MacBride And Connolly and Pearse Now and in time to be, Wherever green is worn, Are changed, changed utterly: A terrible beauty is born.
I made Caitlin pose for this photo (almost 2 years ago) — but I like it and she said “ok” to putting it up to raise organ donor awareness during organ donor awareness month. Caitlin has been on the waiting list since APRIL 24, 2014. Two years! And she’s not alone in her wait. There’s a rally going on in downtown Pittsburgh as I write, informing passersby that 138,000 people are currently waiting for organs in the USA.
Are you a donor? I’ve been one since age 16. It takes two secs to register. You can’t take them with you but you can leave a bit of yourself behind and save a life.
I have never known Katie, my oldest friend and near-sister, to be a runner, so when she started running more and more last fall, I just sort of quietly observed, impressed, and didn’t really say much. I know sometimes it can feel like a jinx, to talk too much about a new resolution or interest, and how determined you are. I figured she’d explain it to me at some point.
Gradually she was running more and more. She even ran a 10k on New Year’s Day morning — alone. Her running buddy, a woman in her neighborhood, was sick, but Kate had set her mind to do it, so she went off, driving herself, and did the race and sent me a picture from the end that made my eyes sting.
We have always joked that Katie greets the yearly turnover with the words “It’s a New Year!” — up and awake brightly and sprightly before everyone else, even when we were younger, and everyone was hungover, groaning. Even then Katie had likely fallen asleep before midnight, reading. Mentally preparing for what lay ahead, I thought.
We have always been different that way. Katie loves to plan ahead, down to the very last detail. She likes to imagine the future the way people like me imagine the past…the little details. What clothes will we be wearing, what dinners will we cook? What rugs will adorn our houses 10 years from now? You know, things everyone needs to know NOW. It’s extreme. I’m no better — a pathological non-planner, the other extreme. With an illness, sometimes you stop making plans to avoid disappointment. But when you wake up in the morning and can’t commit to what you’re going to do that day, living in the moment can become paralyzing. Katie and I make a good team because we can meet somewhere in the middle — I can try to pull her back into enjoying the moment, and she can probe me to figure out, what do I really want for the future?
Katie visited me here in Pittsburgh shortly after that 10k, and so we got to talk about the running thing, finally. And I learned something that surprised me. Apparently, she’d always dreaded the New Year… “It’s a New Year!” was an effort to feel good when she didn’t actually feel good. She’s finally realized that for her, the new year starts in September. I think a lot of people can relate to this —I know I can, and it was like a revelation! Because of school, of course. August is slow and swampy and then September is crispy, chillier, brighter. You feel like you want to buy pencils and notebooks and start taking notes! Yes, we’ve been doing it all wrong. She realized that to start on January 1, to try to pick yourself up from an already low point of holiday exhaustion, partying, e-commerce, was like signing up to lose. Why not SET a goal for January 1, so that ON January 1 you are achieving something ? Something that you begin in September, when it feels like the right time to do something like buy new sneakers and hit the pavement, or fill out applications, or start saving.
So that’s what she did. And though the 10k was a challenge on Jan 1, it was more like an achievement. How much better to start 2016 off having already completed a goal, rather than trudging through the first day of your journey towards one.
I loved this point of view. This mentality flip was right up my alley. She told it to me while she was giving me a leg massage — my legs ache terribly and she is better than a certified masseuse. She told me about running and thinking of me and repeating a thought in her head about me to keep her going. She said she knew it was cheesy, but it made us both cry anyway. I think there’s nothing more inspiring than seeing someone actively make a change in themselves, quietly and sincerely. I thought how cool it was that I could inspire her to run, but that little did she know, this running of hers would inspire me. I have been worried about after transplant — I’ve never been someone who likes to exercise because it requires routine, something I struggle with. Yet I know that finding a rigorous exercise routine, and sticking to it, will be vital to keeping my new lungs healthy. I’ve secretly worried that I will hate it so much, how will I ever power through? Hearing her explain how she finally did, was so so helpful. It made me feel like if she could do it, I could do it when the time came.
Katie’s next goal is running a half-marathon, in Pittsburgh, for Cystic Fibrosis! It’s in less than 2 months, I am so excited and proud of her, and lucky, really lucky, to have her in my life. I feel like we are always learning from each other, and this year I am going to cast off my hatred of New Year’s Day, and no matter where I am in September, whether its Pittsburgh or Boston, sharpen a pencil, and set a goal.
I happened to be looking for a particular photo last night, and came across these ones from exactly two years ago. March 4, 2014. Caitlin had been on IV meds for a couple of months, and after a long stay at the Brigham, it was clear it was time to head to UPMC to complete the lung transplant evaluation that had begun, proactively, in 2010 while she was still ‘well.’ The coordination of the transfer, hospital to hospital, had hit one snag after another. A week of snags. Finally, late on the night of the 4th, an ambulance brought us from the Brigham to Hanscom Airfield where we waited for the medical jet that was to bring us to Pittsburgh.
The night was cold. The jet was late, due to an emergency in Florida, and when it arrived, it taxied in so much tinier than I had expected. The crew—2 pilots and a nurse—swiftly got into action. They were cordial but all-business, bundling Caitlin into the rear with oxygen and monitors. After the bright, organized ambulance, the interior of this working jet, cluttered and dark, was a shock. I looked at it and thought, “You can’t get in that thing. You have to get in that thing.”
They stuffed me into a pop-up seat behind the pilot and we took off.
It was close to midnight, long past the time we would normally be asleep. I could see the moon through the cockpit. It was a waxing crescent moon, I remember that. But the rest of the trip is just a sense-memory of our bodies hurtling through darkness, the deafening noise of the engines. We were heading to a new hospital. Caitlin had finally reached the point where she needed a lung transplant. We didn’t know what was going to happen.
I wrote, in the last post on this blog, about my thoughts at that time. “Okay, let’s get this over with so life can get back to normal.” I’m glad I didn’t know I would be writing this post, here at my Pittsburgh desk, two years later, the big event still ahead of us, the details still unknown.
Two years, March to March:
So many days. Each day thinking, Maybe today. Have to be ready.
Caitlin’s been remarkably resilient, but as it gets tougher, physically and mentally, it’s also tough for people to understand exactly what’s going on—-with our situation, with her health. The other day, I posted a photo of her looking pretty darn great, laughing and holding Henry. But that’s the nature of both cystic fibrosis and photography. The looks of things can fool you.
Yesterday, the cabin fever was bad. We had to get out of the apartment, go for a little drive. We drove aimlessly, with no destination, until I noticed that we were close to a place called The Society for Contemporary Craft. I’d been there a couple of times, and pulled in. It’s a space that consists of a rotating art exhibit on one side, and artwork, for sale, on the other.
The exhibit, this time, was called “Mindful: Exploring Mental Health Through Art.”
Inside, the show was all about depression, breakdown, attempts to self-heal. “Mom,” she said, half-serious. “Did you bring me here on purpose?”
I laughed and said of course not. She didn’t really like the exhibit — not her style. But it was something to do.
The exhibit concluded by having you follow a length of string down a hallway to an alcove, where the overhead criss-crossing of string became so closed-in as to be claustrophobic, and where visitors could give voice to their own methods of coping by writing their thoughts on squares of paper and tying them to the resulting spider’s web.
Shall we do it? Of course.
“This is one that goes through my mind a lot,” she said, writing.
Interesting coincidence we discovered after I published this post:
So last year, we moved from a “temp” apartment to a more home-like condominium here in Pittsburgh. The real estate agent was a lovely woman who told us that her daughter had a heart transplant years ago, was now in her 20s, and an accomplished artist. That seemed like some kind of good sign.
When Caitlin wrote on the slip of paper at the mental health art exhibit, I tied it to the string and tucked it into a tiny print of bananas that happened to be hanging there, which I admired. Turns out the banana art is a reproduction of a screen print by Gianna Paniagua, the very same artist. Wild.
I have been trying to write a post since the holidays, but there’s not much to say, except, it’s getting hard!! We’re two years into this, which seems impossible. Two years ago, when it was clear that Caitlin was finally going to need a lung transplant, I thought to myself: Okay! Let’s get this over with so our lives can get back to normal!
The universe is still laughing at me. I hope it stops laughing soon. But it seems we are living in crazy times. Caitlin recounts a recent dream:
“We were home in Ashland. I was upstairs, sick, and Donald Trump came to visit. He was nice at first, but then he started insulting me. “Only losers stay sick! I would have gotten better a long time ago! I would have gotten that transplant a long time ago, and it would’ve been the best transplant, better than anyone else’s!” At first we were all just dealing with him, out of some weird politeness, but then I thought, I don’t have to take this shit, and I rose up and bellowed at him at the top of my lungs and voice (which were both working well): “Get the hell out of my house! Now!” and he clammed up as I stared him down and pointed the way to the door.”
Every day is an effort for our kitten. In addition to lung problems, she’s got heart issues, blood sugar issues, headaches, body aches. The cold weather doesn’t help. When it’s super cold, the valves on the antiquated oxygen tanks can freeze, so she has to stay cooped up. Cabin fever produced yesterday’s silliness:
Oh Henry oh Henry how lucky are you!
Your brain’s the size of a walnut;
you’ve got nothing to do.
Nowhere to go and nowhere to be,
in many ways you are also like me.
But your walnut brain keeps you happy, content,
whereas mine leaves me sometimes needing to vent.
I’d trade with you for an hour, or maybe even a day.
Just to see what it’s like to live the pup way…..
It might be easier to have a walnut brain for a day, but she doesn’t; she has an overactive, optimistic brain that wants to get back to life. We know she will.
Recently, she had a good idea–that we should stop saying, ‘We are waiting for our daughter to get a transplant.’ No. We now say, ‘We are here to get a transplant.’
So that’s our plea to all who send prayers, good energy, thoughts, etc. each day. Here’s our mantra: Caitlin is ready and in good shape for her transplant.