FEBRUARY 8 — St. John Onward

I haven’t been blogging because I am focused on writing “the Caitlin book,” but we are on our family’s beloved island of St. John right now, and it seems a good time to say hello.

In 2014 (4 years ago, how can that be??), we had a big trip to St. John planned. I had rented our favorite villa. It sat on a hilltop looking down over the Caneel Bay resort peninsula.  These photos really do not do credit to the view.

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58262_10200224406441297_1427296344_n.jpgAndrew and Katie and Alvaro would be joining us. We had “boat day,” our favorite day of vacation, all booked with our captain, John Brandi.

On Christmas Day, as Katie and I talked in our hyped-up, excited way about the trip plans, I remember reading Caitlin’s face. She knew, as she would later tell me, that things had changed irrevocably for her, that there was no way she was going to be able to go. I remained in desperate denial for a couple of weeks but at one point, I said to Katie, “She’s either going to get better, like she always has, or we are entering a whole new place with this disease.”

A year and a half later, I wrote:

We are still waiting. There is that hope that a year from now everything will be normal again, or better than normal. St. John seems like the paradise it’s always been, even more so now that it is out of reach.

Everyone knows how much we love St. John. The highlight of our trips are always our days on the water, zipping around the BVIs. Over the past decade, we always went with our favorite captain—the vivacious, enthusiastic, safe, and professional Captain John Brandi. John and his wife Sue had long dreamed of retiring to St. John, and when they moved down from Marblehead in 2005, they launched Palm Tree Boat Charters. Canceling “boat day” was without a doubt the most depressing part of canceling our annual trip two winters ago, when Caitlin first got sick. And then late last year, a startling post appeared on our Facebook feeds: a sudden announcement, by John, that “due to health issues,” he was selling his beloved boat.

It turned out that back pain that had been niggling at him all year was actually cancer; the world lost him last week. The outpouring of sorrow on St. John has been both wonderful to see and terribly heartbreaking. Everyone loved him, and of course, everyone’s memories of him are wrapped in their own memories of happy, happy days. As I’ve cried for him, I know I’ve also been crying for myself. Some days are just well and truly over, and there’s nothing to be done about that, except to say “onward,” and make these new days the best they can be.

Godspeed, Captain Brandi.

Last winter, Nick and I could not yet bear the thought of visiting St. John, but this past summer, we decided we would go in January. In early September, I began looking for a small villa for the two of us. I planned that we would spend part of the vacation in a villa and part at Caneel Bay. I’d only begun my research when the hurricane warnings started. Then Irma hit. And a week later, Maria. Two Cat 5 hurricanes that tore through these islands, sucking away every bit of vegetation.

Screen Shot 2017-09-17 at 8.53.19 AM.png That house I loved? Roof ripped off, the insides destroyed:

Screen Shot 2017-09-17 at 8.51.15 AM.pngA couple of restaurants we’d been visiting since the 1990s? Flattened. Gone. Caneel Bay was closed, with no opening date in sight.

With such a huge recovery effort, there seemed no possibility of us going, so we didn’t plan to. But recently, friends who live here urged us to visit. “We are getting back on our feet. The beaches are still beautiful, restaurants are now open, there are places to stay! We need tourists/visitors/customers!”

So we are here. Our longtime island friends Delbert & Delrise are hosting us in their beautiful 8-unit vacation-rental condominium building on Turner Bay, Seashore Allure. I’m listening to the tranquilizing crash of the ocean as I write this.

Every single meal we’ve eaten has been extraordinarily good. Maybe because the chef/owners are actually cooking every night…. I don’t know. But La Tapa, Extra Virgin, The Longboard, The Terrace, Greengos, Cruz Bay Landing…all are consistently fantastic.

Our friends Ruth and Ron, who own the great little shop St. John Spice are back in business, resilient, like the rest of the locals who love this island. We had dinner with the lovely Karen, who gifted us with a beautiful piece of heart-shaped coral for the mausoleum. Her Treetops B&B sustained very little damage and is welcoming vacationers again.

Every morning, Nick and I have hiked the Lind Point trail into Honeymoon Beach and had it all to ourselves for at least an hour. It’s like being back in the 1990s, when we first started coming here, when Caitlin was little and we fell in love with this place.

Nick has been taking pictures of the beautiful island stonework as he prepares to build the mausoleum come spring. He returned from a walk near the island cemetery one morning, enthusiastic about a beautiful tomb he’d seen. The stone is the classic St. John stone and brick combination, and he pointed out the beautiful blue glass heart.

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Being here has been strange, sad, surreal, lovely.  It’s weird to see photos of us smiling, when two minutes earlier we were all choked up. But that’s how it goes. It’s also been really good. Just this morning, we talked about how last March, we were at a hotel in Vero Beach, Florida, and it seemed like we were surrounded by happy families with  kids and grand-kids, and it was all a reminder of what we no longer had.  Here, as in California last month, we are reminded that we are not the only ones who’ve borne hardships, and that honestly does make you feel better… sad to say.

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Caitlin & Andrew, 2013
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One of many boats days past.

We rather bravely decided to do our own quiet little “boat day,” with Cleve, the sweetest guy and a really good captain. Local Flavor is his boat. We got a water’s edge view of so much of the damage. Gorgeous Caneel Bay looks like a place abandoned after an apocalypse.

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Word is it will likely won’t reopen until 2021.

We headed over to Jost van Dyke, where the damage was extensive. Here is a picture from ten years ago, when we had lunch at Foxy’s Taboo with Kitten and Katie and Kate’s parents, two of our oldest and dearest friends.

Foxy's Taboo, 2008.png

Foxy’s Taboo, now:

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For those who know Jost: Sydney’s harbor is trashed. Disappeared houses in one spot, untouched houses right “next door.” People are living in tents.

On Great Harbor, the sandy Main Street looks so bright, so exposed. Very few trees left standing. The roof and windows of the pretty little church were blown out, but the congregation has erected a tent and set up chairs and a pulpit there.

DSC00343 (1).jpgVendors are open, selling water and rum punch and painkillers and chicken roti and Johnny Cakes. Original Foxy’s is in good shape. And this survived there:

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Foxy is some kind of Trump supporter (yikes/eek/#toomuchrum) and wearing a Trump hat and pin, but he’s still singing.

We ended boat day, as we always have, on White Bay. A photograph of the Soggy Dollar was one of the first photos I saw, post-Irma. STILL STANDING, they had posted.

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We knew they were open but weren’t sure what to expect.

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It’s rebuilt and a bit roomier for the workers and visitors, and it looks great! They’re planting 100+ palm trees all the way down the beach and into the other harbor.

Jess’s sister Carly’s friend Annie is a manager at the Soggy Dollar. Her parents own the place. After Caitlin’s service, Annie arranged an “organ donor awareness” day there, on New Year’s, 2017. They used a photo of Caitlin and Andrew, taken there in 2013.

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While we were there, we suddenly remembered that Annie was probably on the property. Nick went to look for her.

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Annie is one lovely person. So warm and kind. We learned that her family lost her beloved brother CJ six years ago.

Her parents live on St. John and we hoped we would run into them, and St. John, being such a small island…well, of course we ran into her dad and other brother a day or so later.

As talk progressed, we realized that the beautiful tomb that Nick had admired and photographed was CJ’s, the blue glass heart one of the favors at his island wedding. Another coincidence, one of many.

RIP, CJ O’Connell and Caitlin O’Hara.

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DECEMBER 29–Soggy Dollar Boat Days

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Update, 12/30. Kitty and Andrew at the Soggy Dollar.

Caitlin never complained. Her not-complaining actually became a problem—we who knew her best honestly could not tell how she was feeling, because she always put up a good, rather jolly front. Andrew would say, “Hey, Kitty, should we go to a movie today?” Or I would say, “Want to try and go out today?” And there would be a flicker across her face, usually of pain, and she would say, “Maybe,” or “Oh, no way.”

So we came up with a system. Around late morning, she would rate the day from 1-10 (1-10 being her version of a 1 or a 10, not a normal person’s). If the day was a 5 or 6, then yes, perhaps, we might be able to take the wheelchair out, later, and go to the museum for an hour, or go see a movie.

If the day was a 2 or 3, as it often was, just showering was going to be tough—-there was no chance of an outing.

(No day was ever an 8 or a 9 or a 10, fyi.)

At one point during the last couple of years, she told me how any time she looked at photos of the previous decade, she could remember exactly how she had had felt when any particular picture was taken. In all those photos she looked great, looked like she was having the time of her life, but she would point and say, “I remember that night. I was desperately hoping that everyone would want to take a taxi.”  Or, “I wanted to run down that cliff like everyone else and jump and dance around the sand and party on the beach but all I could think was, how will I climb back up?”

I was reminded of this, today, when I was looking for photos for a tribute that’s happening tomorrow.

St. John was/is our place. Our happiest holidays were spent there and the happiest of the happy days were “boat days.” We would board a charter boat, with a captain, at 8am, head over to Tortola to do customs paperwork, then make our way to Norman Island and Cooper Island and maybe Marina Cay, always a stop at Sandy Cay, and always, always, ultimately ending up on Jost van Dyke.

Boat days always ended on Jost, at the Soggy Dollar Bar.

In the early days, when Caitlin’s health was okay and she could keep up, these were her favorite days. Here we are, back in 2004, enjoying boat day. We always took a pal of hers on vacation with us, usually her almost-sister Katie, and also always filled our boat with island friends. Those days were the best. The best of the best. I hope that everyone who reads this post gets to enjoy days like those days were: life suspended, wrapped up in hours of unending moments of sunshine and turquoise and laughter and rum punch.

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But: back to the reason I was reminded of Caitlin’s 1-10 system today. I was looking for some boat day pictures. I was doing this because this world we live in is a ridiculously small world.  Jess’s sister Carly is friends with the people who own the Soggy Dollar Bar on tiny Jost. Tomorrow they are going to honor Caitlin with an organ donor awareness day. They asked for a photo to make a banner and so I was looking for a good picture.

We all have 10,000 pictures on our phones and another 10,000 lost in the ether of the last decade. I know that I took photos of Caitlin at the Soggy Dollar Bar, but could I find one? No. I did find this:

jost

Taken in 2008 on the eastern side of Jost. We were introducing Katie’s parents, our dear dear friends, to St. John. We were all excited to be there together and boat day was going to be the big event. But soon after our arrival, it was clear that Caitlin had caught a virus, despite her always-vigilant precautions.

The night before boat day, she took me aside and begged me to let her stay home in our rented villa. “I’m happy to just hang out here by myself. I’ll be fine. You guys go and have a good time.”

Caitlin was our life of the party. No one wanted to go on boat day without her. I’m ashamed to admit that I didn’t let her not come. I insisted she suck it up. “We’ll make it comfortable for you, I promise. You’ll be so glad you came. I know you don’t want to miss boat day.”

She gave in and we all got on that boat at 8am. And if you look at pictures from that day, you would think we were all having the time of our lives. The rest of us were. But she later told me that anytime she looked at the day’s pictures she could only remember how horrible she felt.

A week later, our trip had been cut short and she had been admitted to Boston Children’s for  what the CF community calls “cleanouts.” Cleanouts are a few weeks of IV antibiotics and chest PT. They stave off the inevitable, give people a boost, and they worked for Caitlin for much of her life. They worked that time in 2008. She “got better” and  we went back to St. John a few more times. Her last trip was with us, and Andrew, in 2013.

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This is the photo I sent for the Soggy Dollar Bar to use tomorrow. I’m glad I never knew, when I snapped it, that it would be the last one I ever took of her there. Because it was a good day that did not deserve one drop of sadness. A great day. We had snorkeled and lunched and snorkeled some more and swam (swum?) onto Sandy Cay and had just landed at Foxy’s for rum punch and Roti. We were about to get back on John Brandi‘s boat to end boat day, as always, at the Soggy Dollar.

So everyone who  will be at the Soggy Dollar tomorrow for New Year’s weekend: Thank you! Honor Caitlin and don’t be sad. Do remember organ donation and how important it is. Spread that awareness. But savor your delicious painkiller, the nutmeg, the coconut milk, the rum and the sunshine. Caitlin will be cheering you on, all the way.

 

 

JUNE 29–The Update

waiting

I’ve been trying to write an update, with great difficulty. A lot has changed; nothing has changed—still waiting—and all the national emotion of the past week left me feeling oddly subdued, not ready to talk about our own issues.  But here we go–

One crappy new thing has afflicted Caitlin.  She has been unusually hoarse since having a virus in February, and has lost some of her range in her voice. Although she’s experienced laryngitis all her life following colds, she knew this was something different. She visited a voice specialist last week and found out what she suspected:  that one of her vocal folds is paralyzed.  Both folds (or chords) must meet to properly produce sound or to effectively cough; when one isn’t moving, this can’t happen.  There are temporary fixes (injections similar to getting cortisone shots) which she might undergo before transplant for some relief, (but probably not, since she tries to avoid unnecessary procedures).  She will have to have the injection soon after transplant anyway — the vocal chords need to be working properly to protect the new lungs — and eventually will have to have the minor but permanent surgery of having the vocal chord enhanced by a permanent procedure.  She sounds like she has laryngitis, and she has to speak in a higher register than normal, making it difficult for her to be heard, talk on the phone, etc. Overall, it’s frustrating.  The permanent surgery won’t happen till months after transplant, so … that’s another thing our Kitten didn’t need, but which she is dealing with with her usual grace.

Her singing career, now stalled.
Her singing career, now stalled.

The happier news is: we’ve moved! The move has been of tremendous benefit for me and my mental health, and Caitlin really loves the fact that she has more freedom, comfort, and privacy. We’ve a little balcony, and my sister and I fixed it up with a tree and plants, first thing. That little balcony is our summer vacation this year! And not a bad vacation. Pittsburgh is famous for being fireworks-crazy, and it’s home to the famous Zambelli Fireworks. We could always hear them in the old apartment. Now we can see them.  We feel very lucky.

Pittsy's Balcony
Pittsy’s Balcony
Fireworks!
Fireworks!

And I have a real built-in desk! So no more taking over the dining table. And here’s one thing I’m very very proud of:  Last year, on July 1, I vowed to set a timer and write for a minimum of 30 minutes a day. I knew that no matter how busy the day was, I could always squeeze in 30 minutes. I also knew that it would be easy to *not* write during this time of waiting, and that I would end up feeling really bad about myself if I went months without producing anything. I can announce that as I approach July 1, I have not missed a single day AND I’ve managed to eke out a very ugly draft. (But ugly drafts are beautiful, as my writing buddy Barbara says.)

Henry thinks it's ugly, too.
Henry thinks it’s ugly, too.

Many know that Caitlin has been a big part of a tireless effort to save the beloved Prouty Garden at Children’s Hospital Boston. She hated having to miss the gentle protest last week. But now, at a very late hour, the group has the opportunity to work with an environmental law firm that is enthusiastic and hopeful about saving the Garden.  Caitlin spent the weekend working with her group as they decided to go for it. They got a GoFundMe account going yesterday, and the group has already made great gains in raising money for the necessary legal fees. I’ve been so proud of her these past months, watching her work so doggedly at this, even at times when she’s been at her weakest.

Donations are so welcome! I can promise you that there’s not much more of a better cause than saving this garden that pretty much saved *us* during the darkest days of her childhood.

Save the Prouty Garden!
Save the Prouty Garden!

Lastly, a small eulogy. Everyone knows how much we love St. John. The highlight of our trips are always our days on the water, zipping around the BVIs. Over the past decade, we always went with our favorite captain—the vivacious, enthusiastic, safe, and professional Captain John Brandi. John and his wife Sue had long dreamed of retiring to St. John, and they worked their asses off to be able to realize that happy dream. They moved down from Marblehead in 2005 and launched Palm Tree Boat Charters. Canceling “boat day” was without a doubt the most depressing part of canceling our annual trip two winters ago, when Caitlin first got sick. And then late last year, a startling post appeared on our Facebook feeds: a sudden announcement, by John, that “due to health issues,” he was selling his beloved boat.

It turned out that back pain that had been niggling at him all year was actually cancer; the world lost him last week. The outpouring of sorrow on St. John has been both wonderful to see and terribly heartbreaking. Everyone loved him, and of course, everyone’s memories of him are wrapped in their own memories of happy, happy days. As I’ve cried for him, I know I’ve also been crying for myself. Some days are just well and truly over, and there’s nothing to be done about that, except to say “onward,” and make these new days the best they can be.

Godspeed, Captain Brandi.

Captain Brandi
Captain Brandi, photo by Krista Volk

 

–Maryanne

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