Today (May 26) is what the Kidney Transplant Donors and Receipients Group on Facebook calls our “kidneyversary” – marking one year since Amy and I were wheeled into neighboring operating rooms at Hackensack University Medical Center so I could donate a kidney to her. As much as I’ve given of myself to preserve Amy’s life and her quality of living, she’s given right back to me — early and often, starting before the transplant!
It was in the back of my mind that as Amy’s kidney situation over the past two years grew dire that I may have to say goodbye to making children’s music at any time if we determined together that it no longer fits the needs of our family in its state of fragile health. All I knew was that nothing I could ever do with a guitar would be as important as what I was about to do.
With that in mind, every performance, every project we took on as a family/band felt like an improbable gift just to be able to go through with it. Two clear examples come to mind; the trip to Vienna, VA we made in order to keep our first-ever gig at Jammin’ Java, just 2 weeks before the surgery (Amy’s native kidneys were in serious decline and her blood was full of toxins; her energy level was exceptionally low at that time). Though not well enough to get onstage, she was able to be in the audience cuddling with our daughter. The next day, before heading home, we visited the Smithsonian National Zoo and met the giant pandas, featuring Bao Bao, the adorable baby panda. Though Amy’s health was poor at the time, she really wanted to see pandas in-person, so we took the long, long walk up to the top of the zoo’s hill in hot temperatures to have that experience.
Two weeks later we’d have the surgery; of course, a few gigs were cancelled and I had the great help of Miss Nina and Rolie Polie Guacamole to sub for me so that the venues and their patrons wouldn’t be left without entertainment. The hardest part of canceling a show is letting people down.
Then, remarkably, Amy was willing to come out with the band to give performances just 3 weeks after surgery. Our comeback gig was a fundraiser for Essex County Turtle Back Zoo on a rainy day in June – a soggy outdoor gig, to really challenge our resolve. What made that day special (and bittersweet, in retrospect) is that Mr. Lou DeMartino, our bassist at the time, provided extra help, carrying musical equipment I was not yet healed enough to lift. I was so accustomed to refusing to accept this kind of help but understood the importance of following doctor’s orders and giving my surgical wound proper time to heal. We sat in stools and performed acoustically at this gig to avoid the temptation to jump around and possibly disturb the incision. Lou would only live 5 more weeks after that event; a sudden asthma attack claimed his life later that summer.
Just 2 weeks after the Turtle Back Zoo gig, we were back out on the road and Amy was on the stage with me for a 90-minute performance on the 4th of July in Frederick, MD. This was her first time back onstage since the surgery and her first time ever doing such a long show. She’s performed in nearly every show with me since then, except for during a hospitalization.
Late last summer, the transplant center told Amy she had to be admitted even though she felt fine (low white blood cell count in her blood test results). I had the choice of canceling some gigs and Amy spoke her wishes for me to keep our first-ever performance at Jones Beach while she was hospitalized. I felt so loved and supported by that decision on her part; the hospital can be a lonely place and she felt the show was important to my well being enough to encourage me to put on that show, which turned out to be a very special connection with the audience; only having Amy there and onstage with me would have been better.
The bare fact that Amy has rediscovered the energy to give performances and go out on all the family outings with Holly and me (before the surgery she often had to stay home and rest while I kept our daughter entertained) has been miraculous. Much about the recovery from the transplant over the past year has not been easy. When Amy had only her ailing native kidneys, her body metabolized the numerous medications needed to treat her diabetic complications in a very different way than now with a healthy, transplanted kidney doing the work. The past year has been one of trial and error with medication and a litany of side effects. It has required great patience and faith on both our parts and has severely tested our emotions. We’ve had to diligently prepare Holly for both her parents to be recovering from surgery at the same time. Our little girl blew us away with how much she understood before and after the operation.
Yet through it all, Amy has remained steadfast in her commitment to the band – the live shows, the time and money spent recording the new album, the scary financial risks we’ve taken to make this offering of children’s music possible. When I think of all this, I feel greatly, greatly loved. And my love for her flows like a song in my heart – or is that my kidney?
What are the important milestones in your family life? What every day of love within your family look even bigger when you take a look back later? Please get into the conversation in the comments section below.