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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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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JANUARY 28– The Answer, from Caitlin

When Caitlin was a small, small person and had frequent hospitalizations and weeks of home courses of IVs and then a long, serious surgery at age 11, my mother would always marvel at her. “She’s so stoic,” she would say. But it wasn’t like Caitlin didn’t have fears or anxiety. It was just that she […]

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JANUARY 24–The Price We Pay

We are home. We decided to fly out of San Francisco on Saturday. It was time; we need to get things done here. I was sorry to miss the marches, but as my good friend Ellen pointed out: I wasn’t sure I could go into the Boston apartment, never mind sleep there, but we did, […]

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JANUARY 19–Words from Jess

Jess wrote a post on her own blog today. It’s beautiful and here it is: Castro avoided over 600 assassination attempts throughout his life, but even he couldn’t hide from 2016.  2017 is the year of the Rooster and the year that a person who has never held public office is slated to become the […]

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JANUARY 17–In the Redwood Forest

Below is a screenshot of Caitlin’s Instagram from our trip home in September, 2015, when she got to visit the Prouty Garden one last time.  As I’ve mentioned, the current Children’s Hospital administration made their decision to cut down/kill the Prouty Garden’s 65 foot Dawn Redwood tree this past December, the same day Caitlin went […]

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JANUARY 12–A Sampling of Messages

People are asking how Nick is. He’s not on social media, so it’s hard for people to tell. He’s up and down, as am I, but we are a pretty seasoned see-saw act, and we are doing okay. We do both want to say how very grateful we are for all of the wonderful messages […]

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