My lighter side loves April Fool’s Day. My literary side loves National Poetry Month. But our beautiful Caitlin has been waiting almost a year for a lung transplant, and what’s most on my mind is that April is also Donor Awareness Month. So click on the photo for a poem that rethinks the way we think about organ donation.
Synchronicities—so many of them. Including the fact that Caitlin’s from-Maine boyfriend’s grandmother grew up in Pittsburgh. Today we discovered “Polish Hill,” where Andrew’s great-grandfather owned and operated a drugstore, right next to where that red awning is.
Caitlin’s great-grandfather in Massachusetts was also a druggist.
Our address in Boston is Staniford Street, #16.
Our address in Pittsburgh is Stanwix Street, #16.
The hospital here is bounded on one side by O’Hara Street and on another by Euler (the name of Caitlin’s doc at home, though with different spelling. Same pronunciation.)
The list goes on.
Today marks 11 months on the transplant list. Andrew has been away for a while, visiting his very beloved grandmother who fell and has been in and out of the hospital. Today we took a bunch of photos for her, and hope she’s doing better.
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Today marks three months here, but this beautiful painting, which our wonderful friend, Stephanie Danforth, recently painted and sent to Caitlin, reminds us that spring is imminent, and that every day spent waiting means one fewer day to wait.
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I created this blog exactly one year ago this afternoon, which I realized when WordPress sent me a renewal bill. We were in Pittsburgh to complete the transplant evaluation. Caitlin had been sick all winter. Everything had changed, and we were preparing ourselves for even more change. I never would have really thought that a year later, we would still be waiting. But that is the reality of organ transplantation.
We like to keep the blog upbeat, so I don’t go into any real detail about what Caitlin goes through. In my last post, I referred to a difficult two-week stretch as some “not-great days.” Caitlin intensely dislikes drama of any kind, and does not like to call attention to her problems. But as we mark a year of this surreal time that is waiting for organ transplant, I’d like to toast my noble little bird.
She has been remarkably stoic her entire life. And I’ve been full of admiration, this past year, to see just how well she has coped with the kinds of issues we hope never to watch our children deal with.
I saw this quote by Maya Angelou the other day; it resonated with me:
Having courage does not mean that we are unafraid.
“Any news yet?” No, we are still playing the waiting game. Caitlin’s been on the list 10 months today.* April 24-February 24! And it feels longer, because it technically has been longer. A year ago today, February 24, we were getting ready for her to be flown from The Brigham to Pittsburgh, and I wrote in my diary: The trip to Pittsburgh begins. So much was unknown then, and remains unknown.
The last few weeks were up and down because Caitlin caught a cold after months of stability. The cold passed, but she’s been dealing with the inevitable after-effects. There have been some not-so-great days, but right now, things are okay.
In that vein, here is a report on WHAT IS GOOD:
Puzzles! We are HOOKED on Liberty Puzzles, thanks to our dear friends, the Danforths, who sent us our first. Liberty Puzzles are beautiful, wooden, puzzles laser-cut into fantastical shapes.
Henry! Yesterday Caitlin said, “Aren’t you happy he’s here? It’s like a great TV show that’s always on.”
Pittsburgh! I keep saying it, and it’s true: “Things could be a lot worse.” This is a nice city, with a lot going on. I happened to stumble upon the opening of the above living art installation the other day. And on Sunday, Nick and I went on a “cello” hike, which consisted of a walk around the city that included tours of cultural venues, and ended with a private cello performance at the Capital Grille. After that, we had a glass of wine at a favorite little place. I usually have no problem playing it cool when I see a celeb, and there have been a lot around here because they are filming a movie, but it was hard to contain myself, I must admit, when right across from us, tucked into a corner, was Diane Keaton. She is just one cool cat. She’s one of Caitlin’s absolute favorites, and I wish Caitlin could have seen her.
Friends & Family! It’s been great to have people here. My sister and niece were here, then Diane & Katie and baby Diego. People send notes and Florida grapefruits, and crafts and cookies and flowers, and prayers and overall kindness that we are overwhelmingly grateful for.
–Maryanne
*It’s not uncommon to have to wait so long. Organ donations are not as plentiful as they could be, so please, if you agree that you’d like an organ if you desperately needed one, go on and register with the organ bank, if you haven’t already done so: http://www.organdonor.gov/index.html
As you may know, I’ve been gracing your Facebook news feeds here and there with posts about my efforts to save the Prouty Garden at Boston Children’s Hospital.
Tom Farragher wrote a great columnin today’s Boston Globe, bringing more, much-needed public awareness to the issue. It’s a little awkward to see my name in dramatic print like this, but it;s an important issue. Many who care about the Prouty Garden are fighting illness and challenges that do not abate; they may not have the time or energy to speak up. This is not a situation that will simply resolve because people care—hospital boards are powerful entities. I urge people to please comment on the Globe article, and email SaveProuty@gmail.com to get involved.
To the thousands of doctors and patients who have gained sustenance from this natural garden, with its tall trees, birds, rabbits, and grassy lawn, this is akin to building over the Public Garden or Boston Common and replacing it with “parklets” all over the city—can you imagine? Except now imagine further, that those parklets are not just enjoyable spots, where you take a little stroll or sit and read a book, but places where you must spend some of your most vital life moments—relearning how to live, or wondering if you won’t.
Since this is my blog I will be more candid here. Look—we are talking about a building. Construction, architecture. Here is a hospital that claims to and does perform miracles on the daily– making the impossible happen. I am not lacking in understanding of the need for clinical advances — I am waiting for a procedure that, each day I think about, “How will it be possible that they will put someone else’s organs into my body?” I am in awe of, and grateful, for the miracle of science that I am waiting for. Perhaps because I know what feats are possible in a seemingly impossible situation like mine, I know that finding another space for this clinical building is small potatoes in the world of miracles. It comes down to a desire by the board, and money. Previous boards were surely tempted by the space of the garden, in their plans for expansion over the years, and they resisted.
Today marks 9 months on the transplant list, and almost 6 weeks here. The time goes by so quickly! These days are as much a part of our lives as any other part of life and so we do try not to live as if we are in limbo.
Transplant patients are urged to be as fit as possible, to help with recovery, post-surgery. It’s remarkable (and a good reminder for all of us) to realize how much benefit can come from a minimum of of effort. We have a workout room in our apartment building and Caitlin has been going there every other day to do a little self-monitored cardio and weight-lifting. She’s seen some nice gains.
Today marks one month since we arrived in Pittsburgh! It feels like we’ve been here a long time, but the days go by very quickly, too. Christmas was festive and pretty in the city, and we were so grateful to receive fun packages and cards and notes from our friends and family, and a wonderful New Year’s visit from my sister and her family.
Caitlin saw her pulmonologist yesterday. As far as her wait goes….her score is pretty high for her blood type and chest size, or so it seemed when he looked at the list. Of course, that still doesn’t mean that a donor will come any time soon, or that another person her size and blood type won’t get on the list and be ahead of her. It fluctuates day to day. But it’s pretty positive.
A friend’s nephew out in CA was transplanted in December (after waiting 2 years!) and is doing really well.
I also had the pleasure, the other day, of meeting with a friend I made when I was here last year. Her husband was transplanted last January and he just celebrated his first year! They are a lovely young couple who have been through so much, and I hope that 2015 treats them very well.
It’s been frigid here, so I haven’t been out taking photos the way I’d hoped to. Still, I strung together some silly iPhone moments from the past month and made the montage, above.
Having Henry around is great. He makes us laugh every single day. He will be 11 in two weeks and we still MARVEL at how puppin’ CUTE he is. His presence inspires us to compose wonderful songs.
“You, me, and Henry, and Andy, and Nicky…. Down by the River Allegheny… Allegheny…”
Here we are in Pittsburgh! All is well. We’ve settled in to our apartment. Christmas Eve will mark 8 months of waiting on the transplant list. And now marks a year since Caitlin has been in need of one. Last December, she bought herself a tree, brought it home, and decorated it—-then caught the virus that “broke the camel’s back.” The tree was beautiful! Here it is:
We arrived in Pittsburgh on Monday. The city is festive and our apartment is comfortable. Caitlin and Andrew decorated the tree. For the first time, we have colored lights, but this is a different kind of Christmas, Caitlin says, and it’s all about doing new things.
I can tell you that there is great relief in knowing that we are close to the hospital, and I no longer need to keep the emergency list of medical transport services with me at all times.
Happy holidays to everyone! I’ll post some photos of Pittsburgh in the coming days. It’s an interesting place.
Anyone who knows us knows that GROUNDHOG DAY is a favorite family movie. We know every line, and even Henry is part of the act—he was born on February 2. Caitlin and I were watching the movie a few weeks ago, and fell off our chairs with laughter when we realized that the opening segment (see above) clearly shows the apartment building where we will be living! Who would ever have thought??
We are getting ready to head there soon, to wait out the winter. The early snow and cold temps have made us a bit nervous; it’s best that we settle in before Christmas.
The furniture at our apartment was delivered last week. Everything is pretty much ready! We’re going to make the most of this adventure. Thanks for all the continued prayers, good thoughts, hellos, and help.
9 Lives Notes 