A Very Happy New Year!

It is exceptionally embarrassing to have not posted anything for a full year! When things have gone well, we have tried to get back to regular life; when they have been harder there was too much to do. Apologies all around.

So now I am sitting by the fire on New Year’s Day 2011! We have had a lovely Christmas, both boys have been home, Sam from his new job with a telecom company in China, John from his senior year at Duke. Katie has just finished her first semester at her new middle school. My RISD semester is done and Bob is getting back to work, consulting and serving as a fellow at Harvard. The struggles of the last few years are rapidly fading. So before they do, let me offer a few thoughts at the end of our long saga.

As Bob posted last January, his new liver was settling in, the Hepatitis drugs were miraculously proving effective at last and he was beginning to gain strength. Just as we were settling in to believing it had really all worked, he had an episode of rejection in March sending him back into the hospital for another round of tests and adjustments of his meds. He came through that well. It was a sign of his improved condition and state of mind that he kept telling me to keep up at RISD and take care of Kate, he could manage himself at the hospital. He was in for four days but didn’t even really want visitors, preferring to just keep his head down and barrel through it. They soon decided it was a simple matter of adjusting some medication and he was back home and turning his attention back to the worlds of finance, governance and climate change.

For me, though, things were not going to let up. Practically as soon as Bob was back home and doing well, my dad went into New York Presbyterian for a complicated surgery on his back. For weeks my mother, my siblings and I were all taking turns at the hospital. My brother Tom came out from California, my sister Laura came up from Georgia. My other sister Carol who lives near my folks did yeoman’s service filling all the gaps. I “Bolted” down to NYC almost every weekend. We nearly lost him at one point and the hospitalization was long and awful. By early June he was finally back in Princeton, in a nursing home, then back to the house.

As Dad stabilized, I took a few days to accompany Bob to Amsterdam for the Global Reporting Initiative meeting in May. It was amazing to see the delegates from all over the world coming together to talk about the future of corporate reporting. Everyone was thrilled to have Bob there and to see him looking so well. One of his colleagues literally burst into tears when he saw him. It was very moving and gave us a huge sense of the value of what Bob did years ago when he brought together the group that founded the GRI. I was glad I was able to get there too.

The summer flew by with trips to NJ for me and a little time with Bob’s family in Deer Isle. At the very end of the summer we even got my parents both up their beloved place on a lake in Maine. Dad continues to be quite frail but out of crisis. By the time I went back to work at RISD I was pretty worn out.

But the fall brought new challenges and successes. Katie started at a new very demanding middle school and she has done fantastically well. She has risen to the challenges academically, played soccer for school and for her town team all fall, made tons of new friends and kept up with her old ones. She is playing guitar and writing songs, continuing to do musical theater, and has embraced a new sport – ice hockey!

Bob’s health has stayed good and as of his latest check up is doing fantastically well. He has so much energy now it is hard to believe. The miracles continue – his story was in the news again in November when the journal Science put out a story about the HIV research done by Bruce Walker at MGH. As Bruce told us just when the article was coming out they have ”found the needle in the haystack” isolating the genetic trait that determines why some people like Bob are “elite controllers” for the HIV virus.

So we come to the end of the year and as we get ready to embark on more adventures, I have to say a huge thank you to so many people. I am overwhelmed by the generosity and the breadth of all we have been given. And I know as I list these gifts I will forget others of equal value so I put it down and so the post never gets written. But here is a start:

We offer a profound thank you to everyone, including:

• The members of our families for their unfailing support to us and to our kids. The Massie-Verekers, Tates, and Kagels took care of Katie that summer. Lolly and Martin were by my side all through the surgery and Susanna helped me get the first night’s sleep after it was over.
• All our doctors. We must start with Bruce Walker and Eric Rosenberg, who became true friends, who met with us when first we had the diagnosis of Bob’s liver disease and helped us understand what we faced. Bruce wept when I called him from the hospital to tell him the transplant had been done. And Eric helped to pick our specialists, navigate the system and took every late night phone call I ever placed to him even though it was not his job. I always knew we had a friend waiting at MGH. And Raymond Chung and his team who has cared for Bob in the truest sense for many years. And to Stuart Knechtle, Winston Hewitt, Chris Hughes, and all the surgeons and the entire staff at Emory University Hospital who carried him through a dark valley and back to life.
• Kelsey and Sam for their special offerings – Sam helped both of us in the first stages of coming to terms with this disease. And Kelsey for your great generous effort to rally our friends to help with expenses.
• All our friends who stepped forward to contribute to the trust. It gave us a miraculous peace of mind in a difficult time.
• The potential donors who stepped forward. This website was started when we began to look for a living donor. Dozens of people came forward in a response that literally took away our breath. We can never thank you enough. A few people went even further; to Bill and Nancy we give special tribute and thanks.
• Jean, to whom we literally owe Bob’s life. We also thank the anonymous donor and his or her family, who saved Jean’s life and made her gift to us possible; to them we send our gratitude and prayers.
• All who were standing by ready to jump in if Bob had a transplant call; Jude who was ready to fly anywhere to support me, as well as the Bonseys, Chardes and Hirschis who offered to take care of Katie. Alison who made the trip to Atlanta to help me.
• Everyone who helped us raise our daughter in difficult times – you smoothed her way and relieved my worries. If ever a child was raised by a village it was Katie. And she seems to prove the wisdom of the approach. The Hirschis have been her second family, and the families of her long time friends, Maya, Natalie others have been there for her so many times when I could not. I always felt confident that she had a place to be when we were not available and it was an unspeakable relief to me. I also noticed that the first offers of help were always to take care of Katie. Charlie and Blyth were there when she needed a home.
• Our neighbors, and friends who lived upstairs over the years and provided so much support. Ever since the first time I had to take Bob to an ER in the middle of the night and I could leave Katie home safe in bed, the presence of reliable, caring adults in the house has been a gift.
• The friends and clergy at St James’s, who have given us so much. They stepped forward to consider donation, made us meals, visited Bob, supported Katie, and even provided music that sang us all the way into surgery. Miraculous. There are too many to name here but we thank everyone for the love and community they created for us more than six years.
• Tim for putting together and maintaining this site.
• Laurie and Jodi and others who spent time at the house when Bob was not well enough to be alone or care for Katie.
• The folks at Ceres who kept us in mind, sent visitors and brought meals, over years of waiting.
• Brad, Marcy and Ed who looked after our house renovation while we were away in Atlanta.
• My colleagues at RISD, who were understanding of my situation and tolerated my odd hours and shifting focus.
• Gwen for bringing the Princeton community together for us and linking us to Stuart and Emory.
• Our friends in Atlanta: Nancy and Valerie, Alan and Gretchen, Jon and Karin, Jim, Matt and Heather for making our time in Atlanta so rich in fond memories.
• Everyone who stood by us as we put our lives back together, as Bob found new work and projects.

One of the most powerful discoveries of going through an experience like ours is that, in the end, the greatest blessing is to be able to return to a normal life. We salute and honor everyone who helped us through this long and sometimes very hard journey. We wish there were some stronger way to say the, but the simplest words must suffice: from the bottom of our hearts, we thank you all.