JUNE 29–The Update

waiting

I’ve been trying to write an update, with great difficulty. A lot has changed; nothing has changed—still waiting—and all the national emotion of the past week left me feeling oddly subdued, not ready to talk about our own issues.  But here we go–

One crappy new thing has afflicted Caitlin.  She has been unusually hoarse since having a virus in February, and has lost some of her range in her voice. Although she’s experienced laryngitis all her life following colds, she knew this was something different. She visited a voice specialist last week and found out what she suspected:  that one of her vocal folds is paralyzed.  Both folds (or chords) must meet to properly produce sound or to effectively cough; when one isn’t moving, this can’t happen.  There are temporary fixes (injections similar to getting cortisone shots) which she might undergo before transplant for some relief, (but probably not, since she tries to avoid unnecessary procedures).  She will have to have the injection soon after transplant anyway — the vocal chords need to be working properly to protect the new lungs — and eventually will have to have the minor but permanent surgery of having the vocal chord enhanced by a permanent procedure.  She sounds like she has laryngitis, and she has to speak in a higher register than normal, making it difficult for her to be heard, talk on the phone, etc. Overall, it’s frustrating.  The permanent surgery won’t happen till months after transplant, so … that’s another thing our Kitten didn’t need, but which she is dealing with with her usual grace.

Her singing career, now stalled.

Her singing career, now stalled.

The happier news is: we’ve moved! The move has been of tremendous benefit for me and my mental health, and Caitlin really loves the fact that she has more freedom, comfort, and privacy. We’ve a little balcony, and my sister and I fixed it up with a tree and plants, first thing. That little balcony is our summer vacation this year! And not a bad vacation. Pittsburgh is famous for being fireworks-crazy, and it’s home to the famous Zambelli Fireworks. We could always hear them in the old apartment. Now we can see them.  We feel very lucky.

Pittsy's Balcony

Pittsy’s Balcony

Fireworks!

Fireworks!

And I have a real built-in desk! So no more taking over the dining table. And here’s one thing I’m very very proud of:  Last year, on July 1, I vowed to set a timer and write for a minimum of 30 minutes a day. I knew that no matter how busy the day was, I could always squeeze in 30 minutes. I also knew that it would be easy to *not* write during this time of waiting, and that I would end up feeling really bad about myself if I went months without producing anything. I can announce that as I approach July 1, I have not missed a single day AND I’ve managed to eke out a very ugly draft. (But ugly drafts are beautiful, as my writing buddy Barbara says.)

Henry thinks it's ugly, too.

Henry thinks it’s ugly, too.

Many know that Caitlin has been a big part of a tireless effort to save the beloved Prouty Garden at Children’s Hospital Boston. She hated having to miss the gentle protest last week. But now, at a very late hour, the group has the opportunity to work with an environmental law firm that is enthusiastic and hopeful about saving the Garden.  Caitlin spent the weekend working with her group as they decided to go for it. They got a GoFundMe account going yesterday, and the group has already made great gains in raising money for the necessary legal fees. I’ve been so proud of her these past months, watching her work so doggedly at this, even at times when she’s been at her weakest.

Donations are so welcome! I can promise you that there’s not much more of a better cause than saving this garden that pretty much saved *us* during the darkest days of her childhood.

Save the Prouty Garden!

Save the Prouty Garden!

Lastly, a small eulogy. Everyone knows how much we love St. John. The highlight of our trips are always our days on the water, zipping around the BVIs. Over the past decade, we always went with our favorite captain—the vivacious, enthusiastic, safe, and professional Captain John Brandi. John and his wife Sue had long dreamed of retiring to St. John, and they worked their asses off to be able to realize that happy dream. They moved down from Marblehead in 2005 and launched Palm Tree Boat Charters. Canceling “boat day” was without a doubt the most depressing part of canceling our annual trip two winters ago, when Caitlin first got sick. And then late last year, a startling post appeared on our Facebook feeds: a sudden announcement, by John, that “due to health issues,” he was selling his beloved boat.

It turned out that back pain that had been niggling at him all year was actually cancer; the world lost him last week. The outpouring of sorrow on St. John has been both wonderful to see and terribly heartbreaking. Everyone loved him, and of course, everyone’s memories of him are wrapped in their own memories of happy, happy days. As I’ve cried for him, I know I’ve also been crying for myself. Some days are just well and truly over, and there’s nothing to be done about that, except to say “onward,” and make these new days the best they can be.

Godspeed, Captain Brandi.

Captain Brandi

Captain Brandi, photo by Krista Volk

 

–Maryanne

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6 thoughts on “JUNE 29–The Update

  1. erikarobuck

    Life is so fucking hard sometimes. I’m sorry for my vulgarity, but there’s no just no other way to say it. Thank God for fireworks, and balconies, gardens, blue water, grace, God, love. Much love and many prayers to you all, as ever…

    Reply
  2. juneymoon76

    Hi Maryanne, I’m so sorry about Caitlin’s new “condition”. It’s so unfair (trite, but true). She’s a remarkably courageous young woman, and well done with the Go Fund Me page for the garden. I’ve remained active in the “Save Prouty Garden” campaign and have had articles published in a few newspapers. I flagged a message from Anne yesterday & will read it now, & visit Cait’s Go Fund ME page!
    You all remain in my thoughts and prayers.
    xo

    Reply
  3. Jennie Fields

    I want to applaud you for writing every day in the midst of holding your breath regarding the transplant. That takes a very special, committed, and wise soul, and you clearly are one. It’s challenging to remember one’s dreams in the face of delays and adversity. And you are doing everything so admirably. Thinking of you and Caitlin, and wishing you many happier, sunnier, days ahead. xo

    Reply

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