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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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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SEPTEMBER 6 — What will happen?

I keep thinking we can turn back time. An illogical thought, of course, and one which only lasts for a second, but which comes to me every single day. Inside my kitchen medicine cabinet, I have always tacked up recipes, poems, cholesterol counts, phone numbers of relatives in Ireland. I noticed this calendar last week. […]

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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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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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