Monthly Archives: June 2014

JUNE 29 – A Few Clarifications


* The other day, I posted a #ThrowbackThursday photo of Nick and me on St. John. A few people didn’t notice the Hashtag-Throwback part.  Nick and I are most definitely not on St. John.

* We can’t venture from our home base in Boston. When Caitlin gets called, we have four hours to get to Pittsburgh. This will involve contacting the list of medical jet services that we have pre-arranged. Since no single service can sit around and guarantee that a jet will be available when we call, we have to hope that one of the services on our list will be able to get to us within the allotted time.

* Once we are in Pittsburgh, if all goes well, we will be there for two to three months. (You  can’t go home until you are definitely stable. And then, for the first year, she will go back to Pittsburgh for evaluations every two months.)

* You know how once you get used to something, it starts to feel normal? Well, that’s us. We are not as somber, sad, or serious as people imagine. On the contrary, almost every day has a ridiculous amount of humor in it. One of our latest pastimes is taking videos of the way Henry reacts to the word LUNCH.

* When people who haven’t seen Caitlin lately do see her, they inevitably remark on how great she looks. Now that she’s not acutely ill, she does look a lot like normal Caitlin. That’s the irony of CF, though. Unlike some diseases, the effects are mostly invisible. For more information on CF, check out

* Caitlin has done a few needle felting sculpture projects–quite out of the blue–and she is rather good at creating the most charming little creatures! (Needle felting is the process of sculpting/interlocking wool fibers by stabbing the wool with a barbed needle.)  

* Happy July, everybody.  Summer! Boston is not a bad place to spend the summer, and it’s not as stifling as St. John in July.


June 13, But It Feels Like April….

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..because we aren’t experiencing time in the normal way. It was just Christmas, wasn’t it? The real beginning of all this. Yet now it’s mid-June. Summer solstice time. We should be planning trips to the Cape, the Vineyard, Maine.

The other day, Caitlin, driving, said, “I keep thinking it’s April.” The sky was dark with approaching rain.  The air was unseasonably chilly.  April seemed plausible.

We are not complaining. This is just an update. We are grateful that we can wait here, in a city like Boston. Andrew is here at the moment, down from Maine, and he and Caitlin share a great camaraderie. Nick and I are doing a lot of things we’ve always meant to do in Boston, like biking all the way down the Esplanade, and wandering the North End early on Sunday mornings.