Monthly Archives: June 2017

JUNE 20–Solstice to Solstice

I am not the first person to compare time to a river, but from my desk here, the comparison is ever-present, the imagery apt. Drop something into the river and off it goes. It’s never coming back.

FullSizeRender

It’s six months today. And a Tuesday, just as it was then. Another solstice.

And the great world spins.

Inspirations–4 of Them

1st-CAITLIN

When Caitlin was born, she weighed 9.4 lbs and measured 21 inches long. For the first year of her life, until she started developing one pneumonia after another and ‘failed to thrive,’ she was in the 95th percentile for height & weight. And when she was little, I mean really little–1st-2nd grade little– she loved to run. She could run as easily as anyone else and always won the races.

Years later, we would all do 23andMe and see that she and her naturally-athletic father shared a special genetic variant.

Screen Shot 2017-06-20 at 7.44.34 AM.png

I always wondered what if.

As a college freshman in DC, her up-and-down health was at a ‘good’ level and she rediscovered running–doing miles at a time, big loops between the Lincoln Memorial and the Capital. Even after she transferred to Boston College because of declining health, she liked to run when she felt well enough. But by 2004 or so, she needed oxygen to sleep and to fly, and  to do pretty much anything that raised her heart rate. (Blood oxygen levels drop with these activities.)

By 2011, she had to move to an apartment with parking and an elevator. She needed to plan trips around what kind of walking or climbing would be involved. But she and Andrew discovered that she could still ‘hike.’ Andrew would carry her up a trail and then she could walk down.

Screen Shot 2017-06-20 at 7.33.20 AM.png

Carried to the view by Andrew

ireland.JPG

In Ireland on her 30th birthday.

IMG_7424

Caneel trail on St John, 2013.

Eventually, she bought one of these things: an adult carry pack. It made her weight easier for Andrew to carry.

Screen Shot 2017-06-20 at 8.18.07 AM.png

I would like to donate hers. I hear they’re good for autistic kids?

The last couple of years, with hope for new lungs a reality, she cautiously let herself hope that she would really run again. And just last fall, she bought herself this book, and had a plan for recovering, post-transplant, by climbing all the featured stairways.

Screen Shot 2017-06-20 at 8.05.26 AM

2nd-JANET

By chance, two of Caitlin’s cousins challenged themselves physically and mentally this past weekend, in honor of Caitlin. In Australia, Janet Jordan faced her lifelong fear of heights and climbed the Sydney Harbour Bridge to raise funds for the pediatric Cystic Fibrosis Unit at the John Hunter Hospital in Newcastle, NSW.

On her page, Janet talks about a dream she had in which Caitlin challenged her to climb the bridge. As the day of the climb approached, nerves set in. On Saturday, she wrote, “Today’s the day I face my fears, and keep my promise.”

Her next update: “I did it!! What started at 4.30 with an hour long safety induction ended at 7.50pm with the greatest feeling in the world. Photos to come.” 

Screen Shot 2017-06-19 at 6.59.36 PM.png

3rd-MELISSA

Back in western Massachusetts, Caitlin’s cousin Melissa Bavaro Klevans and her husband Sam challenged themselves to a 26-Mile, 1-Day EXTREME Hike.

Screen Shot 2017-06-19 at 2.10.42 PM.png

                  ⬆️ One of those peaks is called Misery Mountain.

The hike started pre-dawn and took them 13 hours to complete. It was tough and toward the end, Melissa’s feet were in such pain she didn’t think she would be able to finish. But she looked at Caitlin’s photograph, took off her boots, and hiked to the end in her socks. She shared her thoughts with me:

“After the hike I was able to process everything that I had gone through on the mountains and it came down to this one little thought. It’s NOTHING compared to what my sweet and beautiful cousin had to go through. Nothing.”

Screen Shot 2017-06-19 at 2.14.10 PM.png

Melissa, with Caitlin’s headscarf around her neck.

About the breakfast the morning after the hike, she said, “We were able to speak if we wanted to. I hate public speaking, but I needed to say something. I talked about organ donation. I expressed the importance of going online and signing up and that the license sticker was not enough. The great thing about me moving past my fear was that I got through to people. I had at least four people come up to me after and thank me for my speech. They had no idea, as most people don’t. That was powerful.”

4th-BARRY

While I was in Pittsburgh, I met some incredible people. One of them was Barry Lavery, who went into the hospital for routine surgery three years ago and discovered he had ALS.

Like Caitlin, Barry has faced his fate with grace and humor and tenacity. He and Caitlin had lots more in common: a love of philosophy, a love of birds. Wise, witty senses of humor. But they never got to meet.

He’s now on hospice care and he tells me that when he “hops his perch,” he’s going to seek out Caitlin. “We will drink good Haitian rum, grow wings and feathers and soar…

Last week Nick and I were out on the river at dusk, and the air was full of the sounds of birds and waterfowl. I sent Barry a little video, to share the moment. He texted a response that ended, “Let the river heal you. Remember the quote from a River runs through it.”

💫

Screen Shot 2017-06-20 at 8.57.28 AM.png

river runs.png

–Maryanne

 

JUNE 2 — An Overdue Update with Pics

We are 5+ months out now, a time when a lot of grieving people notice that they have been—-unintentionally of course—-left alone with their grief. We are grateful this hasn’t happened, that so many wonderful people continue to reach out to us. Thank you, thank you. It means so much…. because I will be honest—-it is not getting easier. In many ways, it is worse.

We lost Caitlin in winter and because winter lasted forever, time felt elastic, a time in which she still existed, was still somewhat ‘of the present.’  Now, New England has done its thing and jumped from raw/rainy/nasty/cold to suddenly-summer. A new season that emphasizes the finality of her absence. Yet every day we still experience the jolt: it can‘t be true. That jolt that is followed by images of her face, her voice, her presence. The despair of never seeing her again.

It’s terrible.

Yes, I do get a lot of ‘signs,’ but the human me is still missing the human her. And I know it’s the same for Nick. Philosophical reflection can only give you so much comfort, so early in this sad game. But… writing on the blog helps bring her close. For the past month, I’ve felt I should write something, if only for myself. So here goes.

LONDINIUM

Caitlin and I were last in London together in 2012, a year that was magical for a ton of reasons. During that visit, on her own, she visited a place she had heard about and loved the moment she stepped inside its walls: the Chelsea Physic Garden, the world’s second oldest apothecary’s medicinal garden.

This past April, Jess and I, as well as my sister Kate, traveled to London, where we spent time with Sinead and with each other. We visited the Chelsea Physic Garden in honor of our buddy.

IMG_6430.JPG

It was as beautiful as Caitlin had described, and also served to remind me that modern medicine is still quite new, that it is all still—really—so primitive. It also reminded me, once again, that Nick and I were lucky to have our CF child for 33 years, to have lived in the first century where children weren’t expected to die.

Everywhere, there were reminders of the battle Caitlin faced all her life with those diseased lungs.

FullSizeRender.jpg

IMG_6419.JPG

Of course I brought along the photo.

IMG_6422.JPG

And found a little hide-away.

IMG_6434.JPG

At the Chelsea Physic Garden

It reminded me of a beautiful drive that Caitlin and I made through the Arnold Arboretum, with Henry, right after she was first listed three years ago.

 

On other days, we saw some art, both official and of the street.

IMG_6436.JPG

David Hockney at the Tate

Screen Shot 2017-06-02 at 1.36.30 PM.png

Shoreditch. Street art. We all got our wings.

 

BACK IN MASS

I returned in May to a month I had been kind of dreading. Mother’s Day and my birthday are always back-to-back, and for three decades, waking up to the surprises my daughter had left for me made those days more special than any other holiday. But everyone made it really nice for me.

I can make myself cry thinking about it.

Look at these sweet babies. The hidden one was born a day later. 🙂FullSizeRender-2.jpg

Now it’s June, and Facebook keeps serving up “On This Day” memories, like the ones that popped up yesterday to nudge me into writing this post.

a paris.png

That time in 2012, Caitlin said goodbye to me in London to travel to the apartment she had rented in Paris. It had been a dream of hers—-to spend long, solid weeks, living alone, in the city she loved so much.

Her (truly) giant, heavy suitcase contained weeks worth of meds, syringes, neb cups, plus her bulky nebulizer and portable oxygen machine. Such a big suitcase and only the tiniest bundle of clothes and toiletries. In another life, she would have been a backpacking Peace Corps volunteer.

I was worried but full of admiration. And off she went, that June 1st, 2012 morning, in a taxi to the Chunnel train.

 

Screen Shot 2017-06-02 at 5.34.03 PM.png

No words.

JESS & ANDREW

Everyone asks how they are. Here are updates:

ANDREW

Andrew is still in Vietnam, teaching, but says that he is coming home soon. I sent him pictures of these tacos I made with Maine lobster meat, to try and lure him. I hope it worked. He’s been eating things like bugs, and although he finds his Vietnamese diet healthy, he’s missing Maine and his friends and family.

IMG_7052

Last weekend, for fun, he played in a big poker competition. As one of the finalists, he won a trip to a Manila casino to continue the competition.

8747a9db-9a10-4cc3-b6e6-d22271eafa99.jpg

Andrew in Hanoi last weekend.

But the Manila casino is the one that was bombed today, Isis claiming responsibility for 37 killed.

Yet another example of how precious ‘it’ all is. Our lives. Our planet. I have joined an activist group that some of my very dear friends are running: Mothers Out Front, a fast-growing organization that is “mobilizing for a livable climate.” Western PA friends, I will be getting in touch, as the group needs a Western PA presence! I went to the annual fundraiser a couple of weeks ago and Gina McCarthy, former head of the EPA, was the most kick-ass, inspiring speaker I’ve heard in a long time.

**OKAY***   Again, you can’t make this stuff up!  JUST as I typed that paragraph, I was distracted by a text from Nick. I opened the IM window, which also revealed my Gmail window and what email had just arrived into my inbox? This from Gina McCarthy.

Screen Shot 2017-06-02 at 5.25.47 PM.png

Anyone, anywhere, not just here in MA, not just PA: I urge you to check out Mothers Out Front, and feel empowered by joining with others who speak your language.

 

JESS

Jess is still undergoing her cancer treatments every three weeks. She’s had some complications but they have not stopped her from traveling. Last week she got back from a beautiful boat trip in Croatia with her mom and sister, and today she is headed to Barcelona.

Screen Shot 2017-06-02 at 8.39.41 AM.png
Beautiful Jess ❤

She’s a real-life angel. Trust me.

Screen Shot 2017-06-02 at 6.00.11 PM.png

I’ve been sorting through Caitlin’s things and I will post some of her stuff soon.

xo

–Maryanne