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.
It’s six months today. And a Tuesday, just as it was then. Another solstice.
And the great world spins.
Inspirations–4 of Them
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.
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.
Eventually, she bought one of these things: an adult carry pack. It made her weight easier for Andrew to carry.
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.
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.”
Back in western Massachusetts, Caitlin’s cousin Melissa Bavaro Klevans and her husband Sam challenged themselves to a 26-Mile, 1-Day EXTREME Hike.
⬆️ 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.”
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.”
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.”