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 column in 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…”