MARCH 22 — Retablos from Caitlin

I haven’t seen the new movie, “Five Feet Apart,” about two teenagers with CF, but I hear that it  “gets it right” and I’m excited about that. A while ago, I’d said I would start posting more of Caitlin’s own words here. I got too busy writing my book to focus on it, but with […]

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APRIL 23–Coincidences (?)

There are so many, and they have happened pretty much every day, this past year. Here are a couple of crazy ones. When I announced, in September, that I would be writing my story in a more contained form, the universe seemed to lead me to Dani Shapiro, the author of many moving pieces of […]

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DECEMBER 18 — “God was in the room”

So it’s been a year since Caitlin’s transplant. A fact that’s as hard to believe as her absence. This post from that day, if the lungs had come a month earlier, before the weeks on ECMO…. … too painful to think about, really. So. I’m going to let Caitlin’s words take over, with thanks to […]

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NOVEMBER 16–& the Anniversaries Begin

I know all the dates. Yesterday a year ago was the last night Caitlin would ever sleep in her own bed. That night, she was so weak she did not have the strength to sit in the bathtub and let me wash her hair. I was so alarmed I emailed her doctor at 10pm. On […]

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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. It’s six months today. And a Tuesday, just as it was then. Another solstice. And the great world […]

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APRIL 24–Three years ago today.

Caitlin was actively listed for a lung transplant on April 24, 2014. We were ready, expectant, full of hope. She kept herself strong and she kept herself busy. She was grateful. She had plans. We never, ever expected that she would have to wait 2 1/2 years. But when she went into the hospital for […]

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MARCH 27–I Keep Thinking..

Caitlin O'Hara, Cystic Fibrosis, Little Matches

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 […]

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DECEMBER 26–Boston Globe Tribute to Caitlin

Deep thanks to Bryan Marquard and The Boston Globe for writing this beautiful tribute to Caitlin, and publishing it on the front page today: Caitlin O’Hara, who brought compassion to others while she sought a transplant, dies at 33 Caitlin’s death was ultimately caused by her too-long wait. The surgery itself was technically easier than […]

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DECEMBER 24–All is Bright

It’s Christmas Eve, a night for faith and hope, no matter what your faith, no matter what you hope for. Last night, a visiting friend said he was angry, said, “That’s where I struggle with faith. How could any God allow that to happen?” “No, no, no!” I said. “Please don’t think that. I need […]

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