She was walking down the hospital corridor in stocking feet, a tall, striking woman with long hair and the head-covering of an observant Jew. We must have said a quick hello. It was a mutual recognition of an experience shared but not articulated: so you too are here because your kid has a brain tumor. You too are a soldier drafted into a war you never would have imagined you’d have to fight. How is your war going? It’s hell, isn’t it? But of course, none of this was spoken because it is too painful to tell the story. We pass in the night, not wanting to know the details of the particular battle, but knowing all the same that we are connected because our children are battling a life-threatening disease.
She went into one of the rooms on the main floor. I headed to the Intensive Care Unit, where my son was recuperating from brain surgerya shunt revision. Although it is brain surgery, it is considered a minor problem compared to other procedures he has endured.
I knew that for me the next 24 hours would be tiring but not truly worrisome. Nathaniel had been diagnosed in 1992, and seven years later we were I.C.U. veterans. By Friday he would be moved to a regular room and probably would be home by the weekend. I wasn’t really worried about him. I was more concerned with making sure we could get a TV in the I.C.U. to watch the last Seinfeld episode. I wanted Nathaniel to be able to see it, even if he would be groggy from the anesthesia. With that mission accomplished, I would sleep on an uncomfortable chair-bed, expecting to be home the next night.
Surgery, however, is never predictable. After the procedure, Nathaniel ran a fever, so we prudently decided to spend one more night in the hospital. That is how I met the woman I had seen the night before in the hall and with whom I later came to share a Sabbath meal, together with her husband, on a small card table in the cramped parents’ kitchen of the hospital.
Although I was born and raised a Christian, I have for many years had a strong, positive connection with Judaism. When I was growing up on Long Island, most of my friends were Jewish. In grade school just before a pop quiz, while I was reciting the Lord’s Prayer, my friends Diane and Sharon would cover their eyes and recite the Shema. There were memories of sharing the rituals and holidays of our next-door neighbors, the Sasses. Edie, the mother, would light candles on Friday evenings, letting them burn to the end as a welcome for the Sabbath. However it happened, Jewish prayer and festivities were imprinted in my soul. In the early 1970’s, when I went to an interfaith seminary in preparation for ministry, I enjoyed being invited by the rabbinical students for a Sabbath meal before the synagogue service. Now the mother of two children, a suburban housewife and theology student, I remember these experiences fondly. But I had not shared Shabbat with anyone for nearly 20 years.
But I was not thinking about the meaning of the Sabbath that Friday morning. I was more concerned with my son’s fever. Would the blood tests he needed show that he had a bacterial infection? Nathaniel was actually able to leave the I.C.U. and was wheeled back to the floor. In the last-minute ballet maneuver between locations, he was assigned a room in which a boy of 5 or 6 lay crumpled in his bed. Next to the child sat the woman I had seen in the hall the night before.
We introduced ourselves and began to share stories cautiously. The encounter between parents of sick children is often very hard. There is a tendency to evaluate and compare, and comparing stories often brings up fear, worry or even jealousy. If a child looks sick or is in pain, a parent may ask silently, Is my child going to end up like that? If the other child looks well, then the inner reflection may also be of hope: maybe my child can get better too. But there can also be jealousy and anger: Why is my child sicker, lucky for thembut why unlucky for me? So exchanges are often cautious, diffident. Neither parent is happy to be there and, if the diagnosis is recent, may still be in a state of shock and terror that precludes deep conversation. Each parent is probably undergoing the greatest challenge he or she will ever face in a lifetime. We are very vulnerable. We want to reach out. We know that we have so much in common. We can understand each other better than the doctors and nurses can. But we are also afraid of hearing about more pain, more sorrowand what it might mean for our child’s future.
In this room the contrast could not have been greater. Nathaniel, despite his current fever, looked well and had already survived seven years. Although he is not cured, he has a chronic, slow growing lesion, which has not invaded his brain tissue. Surgery has left him with memory and learning problems, but he looks good. Most people meeting him for the first time would not suspect he has had a brain tumor for seven years. Any parent observing him could draw hope from the picture he presents.
The woman introduced herself as Rebecca and her son as Isaac. Because of the after-effects of surgery, Isaac was slumped in his bed and lacked muscle tone. Since he could not eat, he was being fed intravenously. He couldn’t walk, talk or control his limbs. Since he had a malignant tumor, he was undergoing radiation daily. In the seven years of dealing with my own son’s illness, I had rarely encountered a child with as many problems as Isaac had.
But with intense, bright eyes he followed his mother’s movements around the room. Isaac understood Rebecca’s questions and he communicated the best he could, with a shake of the head or a small singing sound. Rebecca explained that her son had had surgery almost six weeks earlier and had developed Posterior Fosse syndrome, which had left him incapacitated. Only about 10 percent of brain tumor patients have this reaction. While it can be remedied, it requires intense physical therapy. There is no guarantee of a complete recovery.
Rebecca was restrained in talking about the diagnosis, surgery and recovery process. One day, a few months earlier, Isaac had complained of double vision. At first Rebecca thought he might need glasses. With a reaction I understood all too well, she explained that she had been dismayedtoo bad, he will have to wear glasses all his life if he starts now. Later that week, the ophthalmologist referred them to a neurologist and the neurologist, with alarm, sent them to a neurosurgeon. She then realized, ruefully, how misplaced her initial concern about glasses had been. What seemed like a big problem becomes much less so in the face of a life-and-death situation. Six weeks of hospital stay had left her exhausted. Rebecca was going home to her year-old twins for the weekend, and her husband, Steven, was coming to spend the Sabbath with Isaac.
The day passed quickly. At about 4 o’clock, Steven arrived, a big, friendly, energetic man with a laughing voice. We were introduced, and I helped them carry luggage to the car as they prepared to spell each other for the weekend. Then I disappeared for awhile. Steven needed some quiet time to regroup after the workday and prepare for the Sabbath. I knew that he would be more comfortable shaving and changing if I were not around. I went shopping and had an early dinner by myself. Nathaniel was resting quietly. Because we were expected to go home the next morning, I had only to get through the night on that uncomfortable chair-bed.
I returned to the room. The two boys were sleeping, and I expected to turn in early myself, but Steven came into the room. He invited me to go the parents’ lounge, where he had set up a table to eat his Sabbath meal. Even though I had already had dinner, he insisted that I and two other parents, the Goldfarbs, both Orthodox Jews, join him in the meal. I hesitated. Did I really belong? I had already eaten. I wasn’t sure that I wanted to meet anyone else at this late hour. Or tell my story, or hear theirs. But here was that longed-for chance to share once again in a Sabbath meal. The memories of happier Shabbat meals overcame my hesitations. And Steven was insistent; he wanted me to share the food, the wine and the conversation.
Over dinner, Steven talked about some of what his family had gone through since Isaac’s diagnosis, the emergency surgery and the subsequent unexpected complications. He spoke of his trip to Israel, when Isaac was in critical condition, to pray at the Western Wall. He said his whole family had come to the hospital after the surgery and had filled the I.C.U. with their prayers and psalms chanted in Hebrew.
I shared with him Nathaniel’s story of near death, multiple surgeries and years of chemotherapy. Nathaniel’s diagnosis had come abruptly. One day he came home from school complaining that he had bumped his head on the school bus window. Two hours later he had a stomachache and headache. Four hours later he had an acute hydrocephalus swelling caused by the tumor that had been growing slightly. We almost lost him that night. Only the quick intervention of the emergency room doctor who placed a shunt in his brain saved him from death and brain damage. Later, an M.R.I. showed a mass. Since that day in March 1992, Nathaniel has had four major surgeries and many minor ones, and years of chemo treatment. And still the tumor persists.
The other Sabbath diner that Friday evening, Mrs. Goldfarb, also shared her story. Her daughter, in great pain from recent surgery, was expected to recover quickly from a benign spinal cord tumor. Each of us asked the same questions: Why? Why our children? Why did this happen to us? We who had tried to be faithful, who had followed the tenets of our respective religions. Why were we in this predicament?
Jews and Christians, believers and parents all, ours was not the polite or scholarly interfaith dialogue of people trying to find common ground. No, ours was the dialogue of hearts that are trying to comprehend the truth that our beloved children, our innocent children are in jeopardy and that our God seems to be silent in the face of our cries.
All the same, it was still Shabbat. Despite the devastating illnesses that Isaac faced, Steven celebrated the holy day of rest. He ate and drank with relish and urged us to join him in the celebration. Delicacies from his brother’s delispicy meatballs, apple and potato kugel, sweetmeats, candy and wine. The card table was piled high with food.
I marveled at the contrast. The hard questions and the tender celebration. The bitterness of facing a life turned upside down by illness and the sweetness of the short reprieve from sorrow. At least for this moment, Steven could suspend his grief over his son’s fate and celebrate the Sabbath meal that gave him strength to carry on.
In our dialogue that night, there were no voices from heaven to answer our questions of why and for how long we were to endure. There were no visions, no angels appearing with the specific answers we were seeking. But perhaps each of us did have part of our answer, and we were able to share it with one another. Steven saw his ordeal as a test, a burden to be borne, sent by God. He said, The same God who sent me the miracle of my twin sons’ birth, also sent this problem. I know that Isaac will get well and be completely healed.
I instinctively rejected that answer. God was not testing Nathaniel or me in this illness. Things happen, and the test, if there is one at all, is in how we learn, through a long-term process of growth and acceptance, to deal with this unwelcome part of life.
Mrs. Goldfarb shared her relief at the favorable prognosis for her daughter, but wondered why some escape the hard trials and some do not. We both knew that, all theological theories to the contrary, no logical answer is forthcoming. Yes, we agreed, we had become more compassionate and understanding of other peoples’ pain. But this was a secondary outcome. Certainly God did not send this illness to make me a better person. I could easily have become a more bitter person. Some days I still am. I cannot believe that God would send this amount of pain and tears to prove a point or teach a lesson.
The Sabbath dinner that I had anticipated with white linen tablecloth and silver candlesticks, a joyous and elegant celebration with old friends, was not what we shared. But with Steven and Mrs. Goldfarb that night, I celebrated an eternal faith that in the midst of our troubles and in the face of our pain God gives rest, meaning and companionship across boundaries. This was not the meal that I had longed to eat among friends. Instead, I was fed, in an unexpected way, by virtual strangers, in an impromptu fashion. Reality trumped expectation and fantasy and was all the more nourishing. Yes, I thought, this was not what I had expected. But neither was Nathaniel’s illness. And over and over again, through this difficult passage, I have learned not to anticipate my own steps, nor God’s shadowing of my path.