Free Saving Henry by Laurie Strongin Page B

fell. Without a perfectly matched sibling donor, his transplant survival rates remained dismally low, and we did our best to cling to hope, which was more challenging with each passing day. We stayed in close contact with Dr. Hughes, Dr. Auerbach, and other members of our growing medical team in search of alternatives. Because no other doctor in the country was engaged in this groundbreaking PGD research, there was no one else to turn to. Shy of rolling the dice and getting pregnant again on our own, which had only an 18.75 percent chance of producing an HLA-matched sibling, there was nothing to do but wait.
    Throughout 1997, Allen was unwavering in his belief that Dr. Hughes would soon find a suitable home for his work and would resume his efforts to help us save Henry’s life. The two kept in frequent touch via e-mail. Those correspondences, paired with Allen’s patience and focus on the endgame—specifically, Dr. Hughes’s securing a new position absent the government’s stranglehold, wherehe would finally be free to conduct his breakthrough research—provided Allen with all the encouragement he needed. I had moments of confidence, but far less often. Although I knew that Dr. Hughes was committed to his work and to us, I was also scared and in need of concrete evidence that things were progressing in our favor. With the passing of months and the continuing decline of Henry’s blood counts, I had an increasingly difficult time taking solace in Allen’s optimism. Without his saying it, I think Allen grew tired of my need to rehash, yet again, my mounting concern and need for additional encouragement from Dr. Hughes. Perhaps my anxiety threatened to weaken his resolve. Maybe I was just asking the wrong questions.
    â€œAren’t you worried that by the time Dr. Hughes finds a job, it will be too late to help Henry?” I would query nervously from my side of the bed in our darkened room at night.
    â€œNo,” Allen would reply.
    And with that, the conversation would end. Over time and with practice, I learned that a better conversation starter was “I’m feeling really anxious about the amount of time Dr. Hughes is taking to get settled into a new job. How are you feeling?”
    â€œJust look at him,” he’d say, gazing adoringly at Henry, who was building and knocking down huge block towers in our family room. “We have the best doctors and the greatest love on our side. It is all going to work out. Just not exactly on our timetable.”
    Simply relating the content of these conversations denies the nuance that better characterized Allen’s and my perspectives and their effect on our relationship. I am neither a cynic nor a worrier; Allen isn’t a Pollyanna, nor is he shallow. Allen and I didn’t fight, nor did we live in silence. Our mutual aversion to conflict and our greatest common goal guided our focus toward what was good and right in our relationship—our shared values and interests, and especially our endless love for our children.
    There were times, however, that I felt so damn lonely. When Henry and Jack were babies, few of our friends had children, and of those who did, none had anything approaching the issues we faced. Prior to Henry’s birth, I’d been very lucky in that things had mostly gone my way, so I had very little experience in allowing myself to be vulnerable and asking for help. Although our family and friends were clear about their desire to hold our hands all the way, no matter what, it was hard for me to be open and honest with them about the pain and fear I felt. It’s not that I didn’t talk to people. During those times, I was awfully grateful that I had friends like the Ladies of the Pines and Karen Chaikin, Debbie, Val, and Susie Weiner, who never seemed to tire of me. Karen lived in Cleveland and we logged in many hours on the telephone, talking from our respective couches, hundreds of miles apart.