Tag Archives: Boston Children’s Hospital

JANUARY 17–In the Redwood Forest

Below is a screenshot of Caitlin’s Instagram from our trip home in September, 2015, when she got to visit the Prouty Garden one last time.  As I’ve mentioned, the current Children’s Hospital administration made their decision to cut down/kill the Prouty Garden’s 65 foot Dawn Redwood tree this past December, the same day Caitlin went on ECMO.

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The dawn redwood is in the middle rear of this pic

Today, in Caitlin’s honor, Nick and I visited the Muir redwood forest here in California.

The last movie that Caitlin saw was at the Carnegie Science Center a few months ago, the recent “National Parks Adventure” at the Omnimax. From CNN’s review of the film:
Two of the most integral figures in national park history are also honored in the film — conservationist John Muir and President Theodore Roosevelt, who convened in 1903 at Yosemite National Park. Their famous three-day camping summit under the stars in a giant grove of Sequoia trees is re-enacted by a pair of dedicated tribute actors.
“That meeting [between Roosevelt and Muir] is often regarded as the most important three days in conservation history, so we knew we had to include it,” says MacGillivray.

“They believed that nature was of spiritual value, and that you could get more out of it by not changing it. It was a unique point of view then — and one that people might take more for granted now.”

Like anything so natural and overwhelming to puny beings like us, photographs cannot do justice to how it feels to walk there among our earth’s tallest living things. But if you’ve never been, try to go in this lifetime. The forest is like a cathedral–hushed, and filled with shade and light.
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Nick and a redwood

At one point, Nick opened his knapsack and took out the photo of Caitlin that he’s been carrying on this trip.

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This is quite a large photograph but looks like a 3×5 against this tree.

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He also brought the religious gifts various people had given to Caitlin while she was sick and which hung on her IV poles in the hospital and during her surgeries.

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It’s 4 weeks today, exactly, and as I write that, it hits me all over again that it is true.

But Jess is here, and we love her. And we saw Kenley, too, last night. And read aloud a wonderful note we received from the kids’ former headmaster at Fay. And basically went on living, as impossible as that seems to be to do.

–M&N

DECEMBER 23–Remedies for LOVE

We came home yesterday. Our wonderfully kind friend Jimmy C sent his plane for us in Pittsburgh, and Oh my God!—it made for an easy, stress-free transfer, and we couldn’t be more grateful. To just get driven to the airstrip, board the plane, kind pilots, up we go, 50 minutes: home.

Home.

My wonderful sister Kate and her husband Phil were waiting at our house, heat on, food cooking. Over the day, my dear brothers arrived, and friends arrived, and friends have continued to arrive. Jess flew in from San Francisco today and will stay with us until she has to go back for her next treatment. Katie (Caitlin’s almost-sister) came down from New Hampshire. Jacqui, Kenley, Alyssa, Liz—-some of Caitlin’s closest friends are here right now, gathered with other friends and all my family, downstairs, as I write, and it’s wonderful.

We need people around us. Caitlin knew this. We need each other. Being alone is horrible. This past week, anytime I’ve been alone it’s been unbearable, makes me want to jump out of my body. But having people around helps so much. The Jewish custom of sitting shiva is one that I think is so smart, and I’m realizing that what’s happening right now, downstairs, is kind of a combination of sitting shiva and a good old Irish wake. I can’t always interact with all of them, but I’m grateful they are here, and I love hearing the talking/laughing/crying sounds they make.

In Pittsburgh, our condo building didn’t allow live greenery. Caitlin had always wanted a fake white tree with colored lights, so last winter we bought one. This year, we put it up right before she went into the hospital on November 16, and kept it lit as a vigil. We decided to pack it up and bring it home, and I’m so glad we did. From now on, it will be our Christmas tree. Caitlin’s tree.

IMG_4157.JPGWe are grateful that Caitlin’s story is traveling so far and wide. The comments from friends and strangers have heartened us, unbelievably so! To all of you who have written,

“You don’t know me..”

“You haven’t met me, but..”

“I hope you don’t mind ..”

Please please know: we love all of your comments. We love knowing that Caitlin’s short life has made a difference to so many people. It’s the most wonderful thing.

We are also so grateful that the Boston-area media wants to celebrate her life and pass on a) the message of the importance of organ donation, b) the need to change the regional lung allocation system, and c) the need for a new healing garden in Caitlin’s honor, to replace her beloved Prouty Garden. I  spent over an hour on the phone today, talking to the Boston Globe‘s Bryan Marquard, who is going to write a beautiful feature about Caitlin. He then spent another another hour talking with Andrew and Jess.  Bill Shaner and photographer Art Illman of the Metrowest News spent an hour here at our home today, talking with us about the importance of Caitlin’s story. The Boston Herald also wrote a truly lovely piece today, written by Chris Villani. The  photo they chose to use is from this past Mother’s Day and it both breaks my heart and fills it to bursting.   (Herald story)

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This beautifully-lit face! Mother’s Day, 2016

I’m going to keep writing these posts, for as long as I need to. They help me, and I know they are helping the people who loved Caitlin. It’s funny—-I’m a writer but all these years, I  never ever EVER wanted to write about Caitlin’s medical struggles—I felt we had lived them once and once was enough and I didn’t want to dwell inside them. I wanted us all to move on and LIVE. But this is different. These posts are keeping her alive.

We are probably going to have a private service next week, and then a very public memorial and celebration of Caitlin’s life at a later date. I’m not sure where or when—I’m a little wary of planning something during a New England winter. But I will announce it here and we want everyone who wants to come to please come.  (We just can’t do the typical wake and funeral. Standing in a sterile room with a coffin, a receiving line–it doesn’t work for us, and it was something Caitlin would not have wanted, either.)

At one point, Caitlin considered doing a masters in philosophy. She got too sick to really pursue that, but she read deeply, and was only interested in reading good, complicated things. She had no time for crap writing, junk reading, beach reads. No time. I loved that about her, loved that she got so into Virginia Woolf in high school—that she GOT Virginia Woolf at such a young age.

In the hospital, I read aloud to her from Mary Oliver’s new book of essays, Upstream.  We started when she was on the medical floor and fully ‘normal,’ and then continued in the ICU when she was in and out of consciousness. In the ICU, her blood pressure always went up when I read (a good thing on ECMO!) and we joked that she was was liking the Mary Oliver. MO talks about Emerson and Thoreau in some of these essays. They were old soul writers whom Caitlin loved. This little dish was a gift from her, and always sits on my bedside table. Remember the message, friends. It is Thoreau’s message, and it is Caitlin’s message.

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–Maryanne

 

 

JANUARY 31–Small Potatoes in the World of Miracles

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Caitlin here,

As you may know, I’ve been gracing your Facebook news feeds here and there with posts about my efforts to save the Prouty Garden at Boston Children’s Hospital.

Tom Farragher wrote a great column in today’s Boston Globe, bringing more, much-needed public awareness to the issue.  It’s a little awkward to see my name in dramatic print like this, but it;s an important issue. Many who care about the Prouty Garden are fighting illness and challenges that do not abate; they may not have the time or energy to speak up. This is not a situation that will simply resolve because people care—hospital boards are powerful entities. I urge people to please comment on the Globe article, and email SaveProuty@gmail.com to get involved.

To the thousands of doctors and patients who have gained sustenance from this natural garden, with its tall trees, birds, rabbits, and grassy lawn, this is akin to building over the Public Garden or Boston Common and replacing it with “parklets” all over the city—can you imagine?  Except now imagine further, that those parklets are not just enjoyable spots, where you take a little stroll or sit and read a book, but places where you must spend some of your most vital life moments—relearning how to live, or wondering if you won’t.

Since this is my blog I will be more candid here.  Look—we are talking about a building.  Construction, architecture.  Here is a hospital that claims to and does perform miracles on the daily– making the impossible happen.  I am not lacking in understanding of the need for clinical advances — I am waiting for a procedure that, each day I think about, “How will it be possible that they will put someone else’s organs into my body?”  I am in awe of, and grateful, for the miracle of science that I am waiting for.  Perhaps because I know what feats are possible in a seemingly impossible situation like mine, I know that finding another space for this clinical building is small potatoes in the world of miracles.  It comes down to a desire by the board, and money.  Previous boards were surely tempted by the space of the garden, in their plans for expansion over the years, and they resisted.

 

–Caitlin