SEPTEMBER 26 — The Caitlin Book

From a little notebook of Caitlin’s: April 27th, 2012 I am grateful for — My parents My friends My apartment & car My dog My ability to be able to go out and have fun even though I’m sick. In July of 2014, 6 months into full time care-giving, I realized that I hadn’t worked […]

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SEPTEMBER 6–In the Meantime..

I’d like to recognize/document summer, and appreciate the continued kindness and interest in what is going on with us. VISITORS They started with Caitlin’s “main” ICU nurse, Erin, who visited us with her husband and three charming little daughters (3 under age 5!) in June.  They called me “Miss Maryanne,” and Nick, “Uncle Mike.” In […]

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JULY 10 — Announcements

The Memorial Service In December, we barely knew what we were doing as we quickly put together the most beautiful funeral service we could. We wanted to include everyone who wanted to come. But the chapel at the cemetery was tiny. We could only accommodate 100 or so people. Plus it was the holidays. A […]

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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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FEBRUARY 23– Eleven

Caitlin O'Hara, Cystic Fibrosis, Little Matches

A powerful pulsing of love in the vein We are in Arizona. We packed up Pittsburgh, sent all those boxes back to Massachusetts and came to another ‘bigger-than-we-are’ place to regroup. Pittsburgh was tough. It was also comforting. We were able to see a few of the good friends we made there. Mary and Ralph, […]

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FEBRUARY 7–(Turn and face the strange) Changes

Caitlin O'Hara, Cystic Fibrosis, Little Matches

I have a cold and haven’t been able to breathe through my nose the past few days. I’ve been trying not to mind. It’s the least I can do. Being unable to breathe through her nose was just one more thing that Caitlin had to deal with. Her sinuses were blocked–a common CF problem–and after […]

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JANUARY 31–Half-Birthday, Groundhog Pup

Caitlin O'Hara, Cystic Fibrosis, Little Matches

I’ve been doing some reading about grief and neural pathways and how grieving morosely can become a chronic habit. I believe that eventually we want to be in the position of celebrating Caitlin’s life as opposed to mourning her death, as a friend said last week. So I’m going to make an effort right now […]

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JANUARY 30–Windows Left Open

I haven’t seen Hamilton yet, but I know the music well and I keep thinking of the lyrics… The world turned upside down 🎶      My God, it’s so upside down right now, but everyone’s protesting, speaking up. It feels good, but if you’re feeling helpless, you can start here: Join the American Civil Liberties Union […]

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