Category Archives: Uncategorized

APRIL 7–Paris Is Always a Good Idea


A couple of comments I received yesterday:

“Thank you for sharing more stories of Caitlin’s amazing life. I think once again of when you told us she tipped generously so that’s what I have been doing whenever I go out to eat. It is fun and I think of Caitlin when I do.”

“It’s funny, I think of her when I tip now, or donate. I’ve always been generous but now I’m over the top. Thank you for that.”

I love that. So much.

I’ve had some occasions, in the past few months, when I’ve gone over the top myself, and each time, I’ve felt like it wasn’t my doing at all, but Caitlin saying, go back and give her some money! Or Make his day!

Everyone’s been asking about Andrew and Jess. After Kenya, Andrew traveled to Vietnam. He’s teaching there for a while, figuring things out. This is a favorite dish of his:

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Bun Ca = Fish Noodle

Jess has been traveling a lot, as well. Every 3 weeks she goes home to San Francisco for her treatment, then takes off again.

She’s figuring things out, too.

As are we, though we are home now.

We were in Florida last week. Every time we asked Kitten for a sign, we got one, to the point that we were laughing. Here are a few pics. (I’ll explain the hawks one of these days…)

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She would be cackling.

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This was actually in Boston, before we left. xo

–M

MARCH 27–I Keep Thinking..

I’ve never been one to say “life’s not fair,” or to be angry about Caitlin’s CF, or about her (not-inevitable) decline and need for a lung transplant. I’ve always tried to be philosophical and optimistic and I truly do believe that tough experiences ‘grow your soul’ and make you a more compassionate human being.

But.

Nick and I are in Florida, at a hotel with an atmosphere that feels more like our beloved Virgin Islands than “Florida.” The hotel plays soft reggae in the background. There are palm trees and thatched buildings and the water here is a Caribbean blue.

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Norman Island, BVIs

Being an only child, Caitlin tagged along on pretty much every trip we ever took–either by herself, or with Katie, or her boyfriend.

So I keep imagining her here–ambling in her slow way across the pool deck. I see her big sunglasses, her long hair, and I keep thinking I was a fool to have had one hundred percent faith that the transplant would happen, and that she would prevail.

I want to go back and cherish every minute even more than I did.

I keep thinking of her first days on ECMO and how the surgeon said, “We’re going to get you transplanted, Caitlin.” And, “I have a good feeling about this weekend.”

He was trying to be positive, and I’m sure he truly believed his own words.

I keep thinking of my own words, written in Cascade, where I describe a feeling that has always haunted me and which haunts me now:

There had been other such days—the long-ago morning her mother took sick, the afternoon the telegram spelled out the fact of her father’s first heart attack. At the ends of those days, Dez had looked back through the blur of hours to the innocent mornings, which started so normally. An egg, a piece of buttered toast, plans for this or that. And if those days had stayed normal, if the flu had passed through her mother’s body, through her brother’s, if her father’s heart had not seized, there would be no marveling at the day’s normalcy, no reeling from being blindsided.

No, normalcy is taken for granted until it’s gone.

–Maryanne

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 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

 

 

 

JANUARY 16–Ropes Course for Souls

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

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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 7–Signs & signs

Weird to open up my little travel computer, here in CA, for the first time since December 20 and see all the windows containing my last hopeful posts, still open. iMessages is updating my text messages before my eyes, and all the texts of the past few weeks are flashing as if in real time.

So strange.

The other day, an old family friend of Jess’s (thanks, Miah) sent me a link to a medium who talks about animals and birds and signs and such. I listened to part of the podcast before we boarded yesterday.  The medium said, “Ask for signs. You will get them. They will surprise you.”

So on the flight to LA, I held Kitten’s bird ring and took photos of all the places she had been unable to visit the past ten years, due to altitude problems—-the Rocky Mountains, the Grand Canyon. I told Caitlin she was with us.

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“How about you?” I asked. “Are you with us? How about a sign?”

I didn’t expect anything, I must admit.

A few hours later, as we were preparing to land, there came this sudden howling in front of us. The howling of a cat. Right there, under the seat in front of us. A kitty had been there all along. It seemed so perfect we laughed.

When we got up to leave, I wanted to sneak a picture of the rascal, but it was hunkered down in its case. I tried anyway, and as I did, it sat up and looked right at me.

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Sign? I’ll take it.

(Note: WordPress would NOT let me upload that photo, and thus not save this post. For the last half hour I tried everything. Just when I was about to give up, it magically displayed here for me. ha)

We walked around a bit once we got here. Weirdly, a store that I really like, and have bought things from online, happened to be right around the corner. (I’ve never been to CA and had no idea where the store actually was.) We went in and I found myself pawing through the sale rack with an actress and her filmmaker husband –people Caitlin greatly admired. Of course my first instinct was to surreptitiously text her to let her know.

I’ll have to get used to that.

There were some other nice “signs,” though. Quite literal ones.

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And this morning, Jess’s mom texted from the Vineyard ferry, as she was on her way to Woods Hole. A gull (like pigeons, a favorite bird of Caitlin’s, she likes how fierce they are), decided to accompany her.

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From Santa Monica, peace and love from Caitlin—-

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