MARCH 4–Knock knock knockin’

Yesterday I heard Knocking on Heaven’s Door (different versions) 3 times before 10am. That got me thinking about Caitlin, and about Bob Dylan. Here’s a text she wrote, in November, about him winning the Nobel Prize for Literature. Something to read on a frigid Saturday.

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The more I think about the Dylan thing the more I

think it is wrong. I think there’s a whole thing where

we’ve got this idea of the arts being lumped in

together. That all forms of creativity fall together

and — I think like Simeon said — create overlapping Venn

diagrams.

 

But what if they weren’t the overlapping Venn

diagrams that we all kind of just assume they are?

Perception is the question, right?  Music is words +

sound ….but it is reminding me of the arguments in

alternative medicine. Cancer feeds on sugar cells.

Cancer dies in alkaline environments. Subtract sugar

cancer dies. Drink alkaline water and cancer dies. It

misses the point that you can’t just add or subtract

things to your body–that the body is designed to

take whatever you give it and do what it’s going to

do to maintain homeostasis. You could say homeostasis

— the equilibrium we feel and enjoy as humans

physiologically — is the same as a FEELING,

generally. Ok? So like — maybe arts aren’t defined

the way we define them at all. Maybe they’re really

entirely separate. The feeling you get from a

painting that moves you is as separate from the

feeling you get from music as a worn out kidney is

from a worn out liver. Sure they’re all organs. But if

your lungs fail your homestasis will be threatened in

a way much different than if your liver fails. How do

we FEEL when we see a painting we love. How does

that compare to when we read a sentence we love.

And to when we listen to a song that makes our

heart swell. I know for me all those feelings are very

different. They feel different, they seem like they’re

coming from different parts of my brain. They aren’t

just all coming from the art department. Or the

creativity “side”.

 

I guess it kind of goes a step further though

because yes if I clang spoons together and start

yelling that can be called music. But what makes all

of these different forms GOOD. What makes them

provoke a feeling etc etc all the stuff that basically is

needed to win a Nobel prize. It has to be these

things that we feel and really it has nothing to do

with the fact that words were used. It’s like awarding

the best pie award to a cookie because it used sugar.

Also, the point isn’t the ingredients! It’s the result. And

what we get from music isn’t what we get from lit.

 

And they’re all arguing “well the cookie was too easy

to make” or “the cookie didn’t even taste good”

….but that’s not the point. The point is it’s a cookie.

 

Which some people were saying.

It just seems obvious now.

 

Regardless I am still weirdly glad he won?

 

–Caitlin

 

 

 

FEBRUARY 23– Eleven

A powerful pulsing of love in the vein

We are in Arizona. We packed up Pittsburgh, sent all those boxes back to Massachusetts and came to another ‘bigger-than-we-are’ place to regroup.

Pittsburgh was tough. It was also comforting. We were able to see a few of the good friends we made there. Mary and Ralph, our wonderful neighbors in our equally wonderful building, hosted a gathering for us on Friday night. We included some new friends: Diane and Mallory Smith, who, like us, had to relocate to Pittsburgh to wait for a lung transplant for Mallory. They’ve only just arrived. They are from LA, a crazy long way from home. We introduced them to some of our Pittsburgh people.

People have asked, as did Mallory’s mom, Isn’t it hard to be with people who still have a chance? Or who have had successful transplants? Of course. But is it easy to be with them once you overlook your own pain and come to love them and realize that you want only good things for everyone? Yes.

Organ donor awareness must continue, please.  For the brilliant and beautiful Mallory, and for everyone else.

Boarding a Greyhound in Pittsburgh…

On Monday the 20th, at 5:45am, we left in the dark. It was so hard to walk out of our home of the last two years, to take one last look and close the door.

We had arranged for our favorite driver, Jim Stanley, to pick us up. You feel safe with Jim. He is an ex-Marine and an all-around good guy. He drove Nick and all of our visitors back and forth from the airport the past two years.

Jim is also a very talented acoustic guitarist. As we merged onto the on-ramp, he said it was hard for him to talk about hard things, but that he wanted to tell us that our family had inspired him, that witnessing the support of all our friends and family had made a strong impression on him.

He said, ‘Your daughter was teaching herself guitar.’ And told us that after we flew in from Boston picked us up, he had been inspired to do something he’d planned to do for 20 years. His brother, he said, had battled cancer on and off for years, and had lost his struggle at age 41. The two used to play guitar together and Jim had always meant to record a favorite song of theirs.

Well, he’d finally done it. He said, ‘I’d like to play if for you and if you like it, I’ll send it to you.’

The Sound of Silence filled the dark car. A gorgeously complicated acoustic arrangement that was perfect, beautiful. Nick and I clutched hands, and he passed me a tissue, and as we sped along the highway, high in the sky was a waning crescent moon, inverse to the waxing crescent moon that had hung outside the medical jet when we flew to Pittsburgh, 3 years earlier, so full of hope for a speedy and successful transplant.

Our plane departed from gate 33. A few hours later, we landed in Phoenix.

Arizona

In July of last year, I wrote on this blog about coincidences, and about how Caitlin once had something called a soul reading done. The reader had asked Caitlin if anything had happened to her when she was 11?

Age 11 was the time she came very close to dying. After the year of surgeries and complications she endured (she would hate me using that word–she so disliked drama regarding her health), Arizona was our first family trip.

I was struck, back then, by how calming this place was. It still is. We’ve been hiking the desert mountains every morning. It’s so quiet, so still. There are so many birds to remind us of Caitlin. We’ve shouted her name into the canyons and the echoes are pleasing.

Penny sightings

I had never heard of pennies from heaven until about a few years ago, and then only from my sister, the very practical Kate, an RN. But Kate is also rather intuitive, and when she says something in her no-nonsense voice, I tend to listen, even though this particular  phenomenon seemed too far-fetched to make any sense.

But I’m just an earthling, a human. What do I know? And anyway, regardless of how coincidences happen, the way you read coincidences can be helpful with self-reflection. Here are some recent, striking penny stories:

We knew people could have ‘dry runs’–offers of lungs that didn’t work out, but we didn’t really expect it to happen more than once. At one point during the last week that we crisis-waited, I went into the hospital bathroom I used each morning and saw 4 pennies. She’d had 3 dry runs at that point. I hoped those pennies meant she would indeed get a transplant, get one more chance.

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Washroom pennies

She did. She got her transplant on the 4th offer, on December 18th, one of the happiest days of the last three years. But it was all too late for her beat-up body.

On December 20th, as they turned off the ECMO machine, I saw that there was a penny on it.

On December 21, Nick and Andrew and I walked over to the Fairmont to get out of the apartment, to get a quiet lunch, to get out of our heads. The Fairmont is two blocks from our apartment, and to get to it, we had to walk through all the holiday goings-on–the ice rink and gingerbread house display signs, the European Holiday Market stalls in Market Square.

On our way back, as we were walking by the ice rink, an urge came out of nowhere. ‘Let’s go see the gingerbread houses,’ I said. I veered sharply to the right to lead the guys toward the building where they were on display. Near the entrance, I saw a bunch of pennies on the ground. I picked them up, counted them.

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The day-after pennies

There were 11.

I put them in my pocket and walked into the crowded atrium containing the giant displays of gingerbread houses. Standing right in front of me was Kwesi, a young man who had a lung transplant in 2014. I’d only met Kwesi twice before. I knew he lived miles from downtown. I couldn’t believe he was right there in front of my eyes and I almost couldn’t speak. But I did, and I stammered something about Caitlin.. and then we left.

Because I’d had no real interest in seeing the gingerbread houses. I’d seen what I was supposed to see. 11 pennies and a successful transplant recipient.

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11 Mourning Doves

11. 11 has been knocking on our heads. Before coming to Pittsburgh to help us pack, my sister had 3 instances of mourning doves settling in the branches of a tree outside her window, not on the ground the way they normally visit.

Each time, the branches contained 11 mourning doves. Each time, she took a pic.

Back in the old AOL days, I sometimes lurked inside a chatroom full of astrologers. One of them struck me as bright and very good. Once, I emailed her a quick question about Caitlin. She ended up responding at length, gratis.

First, I need to tell you that the prime focus of Caitlin’s chart is her sixth house. For all intents and purposes she has 4 out of 5 of what I call the “god” planets there. The god planets are the planets that represent energy we think of as coming from God, as opposed to those energies we ordinarily think of as “human.” And 3 out of those 4 were, until recently called “malefic”….Pluto, Saturn, Uranus. That is way too much energy for one house, especially one having to do with health.

She then told me that Caitlin was lucky to have survived the year she was 11, that there had been great stress on her from several angles in her chart.

During her wait for transplant, Caitlin’s lung function hovered around 20 percent of normal. Last week, I found a pulmonary function report from the year she was 22, 11 years ago. Her lung function was averaging 35-40 (bad) then, and at one point was as low as 24.  Those were the years when she really declined, when she started needing oxygen at night, and to fly, when she avoided stairs and much of regular life.

She lived with invisible struggles for a very long time.

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PFT report, age 22

It’s crazy, but 30 percent can look like this:

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One tough kitty.

CF. It’s a demon and it’s mostly, until its cruel end, invisible.

So maybe 11 is a reminder that we got 22 ‘extra’ years. That Caitlin lived 33 years with a killer disease during this time of miracles and wonder that we live in.

It does provide some comfort.

 

PS to those in the know:

Across the Universe is playing in my hotel coffeeshop right now, as I get ready to publish this post.

FEBRUARY 16–Back in the Burgh

On November 16, three months ago today, we took Caitlin to the hospital for the last time.

Now we are finally back in Pittsburgh, packing up our apartment. I’d been sick with dread, anticipating this, but I knew it was necessary to do it personally. My sister and brother-in-law are helping us, and that means everything. Also, our neighbors in this building, and the management team that runs it, are incredibly kind and supportive.

We were grateful for this place. Caitlin was so comfortable here. She was able to easily move between the living room, kitchen, her bath and bedroom.

It was pet-friendly.

It was exactly what she needed, what we all needed.

Over time, the good days here will be what we remember best.

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Some very favorite visitors

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Adoration from a Pup

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Bad ass Kitten

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She got herself some wheels and got back some independence

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Andrew & Katie running the 2016 Pitt 1/2 marathon for CF and Kitten

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One of our views from the 15th floor

 

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First Avenue in springtime

 

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Christmas, 2015

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First Steelers game

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Out at the PPG rink last February

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Cooking Indian with the wonderful Shreya

 

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The calm before the packing begins

 

 

 

FEBRUARY 11–Do you have kids?

The Surprises

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I forgot that I had ordered, for Caitlin, these kitty slippers from LL Bean that were back-ordered for months and last night I got word they were shipped. To Pittsburgh.

Then I was rinsing dishes and realized that the candle from her last birthday cake was tucked into a little vase on the windowsill.

….💔….

Life is a minefield these days, but the biggest mine I’ve been waiting to step on has been ‘the question.’ For the past 7 weeks, I had been expecting it, but no one ever asked. Even while we were traveling and meeting strangers. Our last night in California, we were talking dogs with a woman–a real dog person–when I decided to bravely show a photo of Henry in Caitlin’s arms. Oh, is that your dog walker? she said.

😳  (Dog people apparently do think differently!)

The other day we drove up to Portland. Maine is important to us. We have a lot of family and close friends there, including Andrew. We fully expected that Caitlin would move there post-transplant. The week before she was listed in April 2014, our last ‘getaway’ was to Portland.

It felt painful but also good and right to be there.

We didn’t expect the blizzard. Most of our plans were altered by it, but our friend had made me an appointment with an aesthetician she had praised and surprisingly, the spa was open and a short walk from our hotel. I went.

I was lying on the table, eyes shut, face wet from the steam, when the question finally came.

I froze. Then I think I said the word ‘I’ a couple of times.

She said something kind and neutral. It can be painful is what I think she said. Giving me an out.

But I managed to tell her. I forget what she said, exactly, but she said all the right things and asked if I wanted to talk about it, and I did. We talked about Caitlin and the woman’s beloved father, also gone to the other side. And it was okay. But.

I still don’t know how to answer this question. I’ll always be Caitlin’s mother but a yes answer leads to followup questions, and it doesn’t feel wise to put myself in the position of losing control or making strangers feel uncomfortable.

I also can’t say no.

It’s a dilemma, one I know that others have faced, but I don’t want to research or google ideas. And I’m not asking for advice. I’m just writing about the experience.

Caitlin had recently written something to me: “I have always felt that when it comes to decisions the only true and right ones are the ones you make completely for yourself. Not meaning that you don’t listen to others. But it has to come from a deep place of certainty and knowledge with all the evidence known within you for it to feel really right.”

I guess I will figure it out, Caitlin.

 

 

 


 

 

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.”

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Andrew and Jess at 6389 feet

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.

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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:

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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:

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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.

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

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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?
 
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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:

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Playing sports with the kids.

 

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A little chess.

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

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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.  ❤