JUNE 29 – A Few Clarifications

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* 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 http://www.cff.org.

* 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.

–Maryanne

4 thoughts on “JUNE 29 – A Few Clarifications

  1. Judy Graff

    It’s understood you’re holding tight for that call. Thanks for the update, Maryanne. I wonder often when that might be. It’s all about patience and trust in knowing there’s a time for every thing. Humor is a miracle drug. It’s what gets us through the most challenging of times. It should be in everyone’s daily recipe for life. It fills us up and is so satisfying. 🙂 Love Caitlin’s woolen creations… a lot. How sweet to see them under a pot full of clover. As always, sending well wishes, good vibes and prayers. Miss you, my friend. xo
    Judy

    Reply

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