Saving Henry (27 page)

I
didn't know what to do or where to go without Henry in my life. For seven years, our mobile party traveled wherever Henry's health determined we needed to be. His inspiring attitude paired with his serious illness gave me something to fight hard for every day. The moment-to-moment lack of urgency that followed Henry's death left me rudderless. Even more difficult, it gave me time to absorb the overwhelming feeling of utter failure that didn't have time to haunt me while Henry was alive. Clinging to the edge of a black hole that threatened to steal me away, I held true to the commitment I made, and reaffirmed, when I got pregnant with Jack and then Joe: I would not only survive, I would give my boys a great and full life, enriched by their older brother and the knowledge that Allen and I didn't just say we would do anything for our children, we had proved it.

Just as at the beginning of Henry's illness, I knew I could move forward as long as I had something I could do. I continued providing information, insights, and support to other families, and pushing for federal support for embryo and stem-cell research. To honor Henry's legacy of living well and laughing hard even in the face of serious illness, on October 25, 2003, on what would have been Henry's eighth birthday, Allen and I established Hope for Henry Foundation. Recognizing the restorative effects of laughter and learning, and how much smiles and hope can add to a patient's quality of life and determination to get better, Hope for Henry does for other ill children what we did for Henry—fills all the time the kids are waiting to get better with fun and entertainment. We give
iPods, portable DVD players, digital cameras, satellite radios, and portable game players to kids undergoing bone-marrow transplants and chemotherapy. We fill the hospital clinics with new computers so kids can IM their friends, surf the Web and play games; DVD players and movies to provide distractions; and new pianos and piano lessons so they can enjoy the benefits and pleasure of music. In 2005, in the midst of Harry Potter mania, Hope for Henry threw parties in hospitals around the country to celebrate the release of
Harry Potter and the Half-Blood Prince.
Since hospitalized kids couldn't get to the bookstore, we brought the book; chocolate frogs, capes, and wands; trivia contests; and cakes depicting Harry playing Quidditch to the hospital. The success of this party led to annual superhero celebrations, summer carnivals, Halloween parties, birthday celebrations, and more. This work has generated news coverage on ABC and CNN, in
The Washington Post
and
The Wall Street Journal
, and, more important, smiles on the faces of a lot of kids like Henry, Jack, and Joe.

Our family finally has the normalcy we were fighting so hard for. We can make plans for playdates, birthday parties, or dinners with friends with near certainty that we can see them through. I can leave work with a “to-do” list, knowing that in all likelihood I'll be back the next morning. I can buy a week's worth of groceries without it being a gamble. Our family has all the simple things we fought so hard to have with Henry. But he's not here.

Fairly late into motherhood, on parents' days at school, I peer into the lunch boxes of Jack's and Joe's friends to see what normal moms pack; and I try to relate to my friends' anxieties over the school curriculum and summer camp and other wonderfully normal concerns of lucky people like us. I work hard to balance being the proud and thankful mother of two beautiful, thriving, wonderful boys with the agony of living without Henry.

 

R
ecently we took our annual trip to Funland. This time, Joe was ready to go on the Paratrooper. I handed the ride operator eight tickets, we wiggled out of our shoes, and we climbed into the sparkly gold car. As the ride got going faster and faster, Joe gave me a sideways glance and squeezed my hand. His terror and delight intermingled with laughter and screams. Each time we reached the peak of the ride we screamed and waved to Allen and Jack down below. Tears of joy and loss spilled down my face but were quickly dried by the warm summer breeze before Joe could notice them. After a family Skee-Ball tournament, a few rides on the bumper cars, and victories in the horse race and beach-ball toss, with hands filled with stuffed animals and leftover tickets, the four of us walked along the boardwalk in search of cotton candy and soft ice cream. I felt something I hadn't felt in a long time… happy. Henry was all around me. His laughter echoed in the waves as they playfully crashed on the shore. His spirit danced with the kites in the warm summer breeze. His smile lived on in the faces of his two beautiful brothers.

I knew then that he would be with me forever, reminding me to eat dessert first.

M
ax Henry Winaker was born on a Saturday morning in July 2007. His father, Jeremy, explained, “We've been waiting for a boy. We wanted you to know as we honor your Henry's gift to us and the world.”

When I first met Dr. Ali Mendelson, Max's mother, she was sitting in the lotus position on the edge of Henry's bed at Georgetown. The lights were off, their eyes were closed, arms resting on their thighs outstretched, thumbs pressed to middle fingers. The only sounds were the rhythmic beating of Henry's IV pump and the soft repetitive chanting
“om”
between long deep breaths. I arrived breathless with arms filled with containers of Pringles from the basement vending machine. By that point the chemo had pretty much limited Henry's taste buds to salty food, so I acquired enough to last the day. I quietly put the stash on his bed tray next to his Pokémon figures, which waited mid-battle. I listened to the mesmerizing sound and took a deep breath, something that felt like a luxury amid the chaos of our life.

Ali Mendelson is a smart, straight talker, meticulous in her patient care. She, like so many before her, had fallen for Henry. More than one of Henry's doctors explained to me that to endure as a
pediatric hematologist/oncologist—a doctor searching for cures for as-yet incurable diseases—you have to create an emotional divide between yourself and your patients and their families. Objectivity requires detachment from the heightened emotions of the moment. It also potentially offers these doctors needed breathing room to focus on the big picture—new treatments and new cures—that help current and future patients far more than providing yet another shoulder to cry on. Because this line of work nearly guarantees early and frequent exposure to children who suffer so much and die so young, feelings of failure can overwhelm and lead to despair or a retreat to the laboratory.

Perhaps the barrier is a desperate attempt to avoid inevitable and crushing feelings of grief surrounding the reality that their idea, their protocol, failed, and the cost of that failure—a human life—was too great. But then every once in a while a kid like Henry would come along and well—forget it.

I don't know if it was when Henry whipped out his sword, stuck it in the air, looked his doctor in the eye, and said, “Bring it on” in the face of yet another IV. Or when Henry showed up for his transplant workup in his Batman costume. Or it could have been the beauty of Henry's constant smile and infectious laugh. But Henry crashed through that divide from Johns Hopkins, where his doctor confessed to putting Henry's picture on her fridge for inspiration as she fought her own illness, to Detroit, where the Wayne State University researchers were motivated by Henry's photograph while they conducted our genetic testing, to Georgetown, where he sat meditating with Dr. Mendelson. Henry's world was one filled with sunshine, laughter, and fun, and it was energizing to be part of it, perhaps especially for the doctors working so hard to beat the odds and save his life.

Over the next two months, Ali and Henry talked a lot, watched cartoons in his room, and became friends. When Henry left for
that last trip to Minnesota in November 2002, he didn't get a chance to say good-bye to her.

Ali was among the dozens of doctors, nurses, social workers, and art therapists who left Georgetown the morning of December 13, 2002, to attend Henry's funeral. I didn't see her there, just like I didn't see Molly Nash and her family. As it happened, Ali sat next to someone who neither we nor Henry knew. Jeremy Winaker was the new youth rabbi at Adas Israel, our synagogue in downtown Washington, DC. Ali didn't know him either, and her innocent question of “How did you know Henry?” may have been to distract her from the painful reality that one of her young patients was dead. It being early in her career, this was likely to be one of many. When Jeremy answered that he was the new rabbi and he had heard so much about Henry that he was determined to get to know him as best as he could, even in death, Ali made the connection that her sister, also a rabbi, knew Jeremy, and had mentioned to Ali that they should meet.

One year later, Ali and Jeremy got engaged. When we received the wedding invitation in the mail, I wanted to go, but Allen thought we should do the gracious thing and decline as we were clearly “B list.” That week, when the
New York Times
“Vows” reporter called to interview us for her piece on Ali and Jeremy's wedding, it was clear that Allen was mistaken. On November 13, 2004, Allen and I danced at their wedding, the first time we'd danced since Henry's death two years earlier.

I didn't have to think hard about what would be an appropriate gift to honor the birth of Henry's namesake. I sent him Batman costumes in size infant, toddler, extra-small, small, and medium. Just enough to get him started.