Saving Henry Read Free Page B

thumb, and heart defect—are often linked to a broader syndrome. Much to our relief, he quickly eliminated many horrifying possibilities. The only test result we were awaiting was for something so rare Dr. Rosenbaum didn’t even bother to tell us its name.
    The name, it turns out, is Fanconi anemia.
    â€œ F anconi anemia.”
    â€œI’m sorry?” I heard Allen say into the phone two weeks later. We were lying in bed together late on a Friday afternoon in early November, catching a quick respite between feedings, diaper changes, laundry, and doctor’ appointments. Henry was peacefully sleeping in the bassinet next to our bed. “Can you please repeat that?”
    I didn’t know this at the time, having never heard of Fanconi anemia before, but those two little words were about to wipe out all the dreams I’d ever held for my family in a matter of seconds. Later, when I thought about that moment, it’s not the hearing of thewords that I remember as much as the moment right before it. The moment when it was only his thumb and heart. Those problems, I’d learn, were easy to fix. Like many new moms, I had a stack of books on my night table that promised to help me navigate my way through parenthood, but none of them prepared me for Fanconi anemia.

Henry’s Favorite Things
    â€¢ Jack
    â€¢ Blowing bubbles
    â€¢ Driving Papa Sy’s Farmall tractor
    â€¢ Yoda, especially in the final scene of Star Wars Episode II: Attack of the Clones
    â€¢ Pony rides
    â€¢ Squidward’s comment to SpongeBob: “Could you keep it down? I’m trying to be boring.”
    â€¢ Root-beer-flavored anesthesia

3
T HE W ONDER Y EARS

    Henry tries to swallow me whole
The Strongin Goldberg Family
    G rowing up outside of Washington, DC, the mantra in my home was “There’s always room for one more.” Our house was a meeting place where neighborhood kids, family, and friends of all ages gathered for food, fun, and conversation. Our pantry was stocked with cookie-making ingredients, and our garage with balls, skis, bikes, stilts, and other suburban accoutrements. Our days were filled with public school, visits to parks and museums, and hikes onthe C & O Canal. Our nights initially featured Red Rover and Kick the Can and, eventually, late-night excursions to the Tastee Diner in Bethesda, Maryland, in my 1947 Willy’s Jeep or my friends’ Duster or Pinto. The rules in my family were simple: Be honest, treat others the way you wanted to be treated, give back to the community, work hard, be prepared, and enjoy. When, from time to time, things didn’t go our way and Abby, Andrew, or I would exclaim, “It’s not fair,” my dad, Sy Strongin, a labor arbitrator by trade, would answer, “Life’s not fair.” I listened, but the truth is, I didn’t believe him.
    I’m not sure whether it was out of fear of being average or just my nature, but as far back as I can remember, I had always hovered around the extremes, at least for a suburban good girl. I would run ten miles in a stretch and then eat a pound of M&M’s. One summer I won honor camper and after another, I was asked not to return to sleep-away camp due to a series of episodes involving capsized boats and bras up the flagpole. I was captain of the Bethesda–Chevy Chase High School field hockey team and on the homecoming court. I held the esteemed position of being one of two women to participate in the University of Michigan’s first-ever Nude Mile in 1986 but took comfort in the predictability of living an adult life that mirrored the one I had as a child: a life based around family, trust, and love.
    For Allen and me, it wasn’t love at first sight. The first time we met, Allen Goldberg and I were each out on a date with someone else. But by the end of the night as we drove out of the Tower Records parking lot in downtown Washington, listening to the words of U2’s