And I knew she loved me more than I deserved, took my side in any conflict, and would still, after twenty-seven years together, sound excited when I called her on the phone.

  But your arrival, Chika, triggered something new, a sense of discovery that happens for most couples, I guess, much earlier than it did for us. It was a splash of new color on an otherwise familiar canvas. Watching her dress you, bathe you, nurture you, sing to you, gave me a deeper appreciation for this woman whom I married, and her instincts that were coming now so easily to the fore, like a bud that had been waiting decades for sunshine.

  That first Thanksgiving, you wanted to dress up, so she outfitted you in a sparkly blue tutu and a little black sweater, with a headband that featured a large pink flower. You asked to wear a necklace and she gave you two, and you looked in the mirror, so proud of yourself. I don’t know where your penchant for fashion came from, Chika, but I suspect you’d often watched Miss Janine get dressed, and in some way, you wanted to be like her.

  That night we made a toast to the new faces at the table. Miss Janine said how grateful we were to have you with us. For the first time in countless Thanksgivings, we felt less like a couple and more like a family. I know how much that meant to her.

  By your second Thanksgiving, after two trips to Germany, things had changed so much. Your speech was slowed. Your eye drooped severely. You weren’t able to run or play with the other kids. Eating was a laborious process. You drooled food sometimes. Worst of all, for you, Aidan seemed more interested in the other cousins, who were racing around the house. When we sat you two together to eat, you didn’t have much to say. Maybe you felt self-conscious. When the meal was over, he ran off to play.

  Miss Janine and I saw the hurt in your eyes. Sitting on the couch, you asked us, “Why doesn’t Aidan love me?” I wanted to grab the boy and make him stay next to you all night. But Miss Janine was more tender in her answer. She told you not to worry, that all things come in time, and that you were beautiful and she was so proud of you. And I was never prouder to be her husband.

  There were moments when you wanted to call Miss Janine “Mommy.” It touched her heart, more than you know. But as much as she might have privately desired that, she always reminded you of who your mother was, and was always seeking out information to share with you.

  One night you were watching the movie Pan, a scene where Peter Pan sees a vision of his departed mom. When it ended, you asked if you would ever see your mommy again.

  “Yes, sweetheart,” Miss Janine answered. “You’ll see her in heaven.”

  “But how will she know me?”

  “Mommies never forget their babies.”

  You dropped your head. “But how will I know her?”

  We realized your memories did not go back that far. In truth, you had been with us—at the orphanage and then in America—longer than you’d been with your mother or your godmother. Some might take that as a claim to the Mommy word. But Miss Janine was not concerned with titles, only with loving you, protecting you, and making you aware of all the wonders of this life, including who you were before you graced our little universe.

  Remember how you fantasized about getting married, Chika? Well, when people get married, they share the love of a couple. But when children arrive, they create another love, not just for the new additions, but for the new entity they have created. The family. It is not better than a couple’s love, it’s complementary, forged with a new appreciation, and a wider, expansive heart.

  I think back now on the three times a day, every day, Miss Janine cleaned your PICC line, slowly, studiously, rubbing the alcohol pads to insure no infections. I think about all the baths and toilet duties and dressing and undressing of you that she did. I think back on all the mornings the two of you played under the covers, all the movies where you sat in her lap, all the times she let you brush her hair, or try on her earrings, or lead her by the hand to whatever new discovery you just had to show her, saying “Miss Janine! Look!” I think about her sitting beside you, long after you’d fallen asleep, praying for a miracle, then looking at me with tears in her eyes and whispering, “We can’t lose her, Mitch. We can’t.”

  There may be other words for that besides Mother, but it’s as motherly a role as I know. And getting to see Miss Janine that way was a rare and precious gift. You showed it to me, Chika. That is why it’s on the list.

  One afternoon, we hear her singing from the bedroom. Janine gets a camera. It’s a gospel song called “No Longer a Slave” that the kids in Haiti do in devotions. Chika is singing it verse after verse, sitting up in bed, wearing a yellow T-shirt and pajama pants.

  Normally, when an adult enters a room, children will stop singing, especially if that adult is trying to film them. But when Janine enters, Chika doesn’t stop. Her eyes are almost glazed, and she seems in communion with something invisible.

  “I’m no longer a slave to fear

  I am a child of God.”

  She sings it for eight minutes. Nonstop. Even with the camera inches away from her face. When she finishes, she lies down and closes her eyes.

  Janine emerges from the room, stunned.

  “She sang to herself all that time?” I ask.

  “Not to herself,” Janine answers. “She was talking to God.”

  You

  Our final trip to Germany, in early December, felt a bit like coming home. Same apartment in Cologne. Same funny Italian landlady. Same nineteen steps. Same wheelchair rides to the markets, plazas, and clinic. And you, Chika, were happy to be away from the Thanksgiving crowd and back in the center of attention.

  But it was colder, and we had to bundle you up tightly with blankets. Your speech was noticeably slower and your torso wobbled back and forth, which made it look like you were keeping a dance beat, but in truth was a slow loss of your motor control. When we ate, you had trouble pressing the knife down and you drank things through a straw so as not to drop the cup. At a Christmas market, I saw you studying your fingers, struggling to wiggle them one at a time.

  There were other ominous signs. A young girl you had befriended at the clinic was not coming back, because her tumor had advanced and a second one had formed. One visit, while you watched a movie on an iPad, Dr. Van Gool showed Miss Janine and me statistics of his studies to date, graphs with black and green lines, green representing the newest patients. The goal, he said, was to get the green line to curve and flatten above the black, suggesting a truce between the immunology treatment and the DIPG progression.

  Near the end of the black, I saw a string of red markings.

  “What are those Xs?” I asked.

  Miss Janine touched my arm.

  “Those are crosses,” she whispered. “It means they died.”

  That night, in the cramped kitchen of the flat, we played children’s songs as you tried to color. You sang along as well as you could. You seemed to be rekindling a love of nursery rhymes, maybe because they were simpler to remember. You loved “Twinkle, Twinkle, Little Star.”

  I remember us in the backseat of a car once, singing that song, and you putting your hand over my mouth so you could finish solo. Afterward I asked, “Did you know you can wish upon a star?”

  “Huh?”

  “You can say ‘I want to put a wish on that star and it will help my wish come true.’”

  “Or,” you suggested, softly, “we could make a star come to us.”

  “To us?” I said.

  “Like a gift.”

  “You mean pull it out of the sky?”

  “Yeah.”

  “And let it knock on the door and say ‘Hello’?”

  “Noooo . . . Stars can’t talk.”

  I should have said, yes, Chika, they can, because I was listening to one. Instead I mumbled, “That sounds like a good idea,” and you leaned your head into my chest and I kissed your hair. I could have stayed in that moment a long time, looking down at your cheeks and nose and eyes. We adults can be a wretched lot, Chika. Yet in every child’s face we see the Lord has not given up on us. Yours was proof of that.

  * * *

  When we came home from Germany, something must have happened. You were sluggish. You threw up in the car. Your eyes lost focus. Your sentences started strong but trailed to a whisper.

  We took you to Mott Hospital, where they did an MRI. The worst was confirmed. There was “significant progression” of the disease. I thought about how much that word had changed for us, progression, which used to mean something positive and now was anything but. Christmas hung on the calendar, a week away, Miss Janine had the tree up, and people were already dropping off your presents. Sometimes I caught you sitting on the floor, gazing at the ornaments, but you didn’t say anything, and when I asked, “Whatcha looking at, Chika?” you stared at me before you answered, blinking, as if trying to find me in a snowstorm.

  Us

  “OK, I’m gonna go now.”

  Why, Chika?

  “Because you’re gonna get sad.”

  Is that bad?

  “It’s not bad. It’s just . . .”

  She taps her cheek with her finger again.

  “. . . not fun.”

  Do you only want to have fun?

  She throws out her hands. “Ummm, yeah! I’m a child!”

  She says child in two syllables, “chi” and “uld.” I don’t know how to respond.

  “I’ll come back when you are done,” she says.

  Wait! I shout.

  She looks at me curiously.

  Where do you go? When you’re not here. Where do you go? Can you tell me? Can you tell me what it’s like?

  She looks down.

  “Can you tell me what it’s like?” she says.

  This was something she often did when she wasn’t sure of an answer. Affect a false confidence. Like the time she was singing a show tune and stopped in the middle. Janine asked her, “Don’t you know the rest of the words, Chika?”

  “I know,” she cooed. “But you don’t.”

  No, I answer her now, I can’t tell you what it’s like. I want to believe that you are happy and at peace and with God and forever young. That you get to play and laugh and use every part of your body. Is that it? Is that what it’s like where you go when you’re not here?

  She lifts on her toes.

  “How come you don’t feel good, Mister Mitch?”

  What do you mean?

  “You have lots of hurts.”

  I don’t know, I say. The doctors can’t find anything.

  “Not those hurts.”

  She puts her hand on top of mine. Her T-shirt has drawings of ice-cream cones.

  Please stay, I whisper.

  “It’s a hard-knock life!” she sings.

  And she is gone.

  Seven

  Courtesy of the author

  You

  Do you remember a night in Germany, when we were all in the same bed, and you said to Miss Janine, “I have a secret to tell you”? And Miss Janine said, “What?” And you whispered, “Kiss Mister Mitch.” So with you lying between us, we kissed over your head, and you said, “Now you can live happily ever after.”

  If only.

  I didn’t want to reach a seventh chapter in this book, Chika. I wanted to stop at six, like the A. A. Milne poem, be clever as clever, stay six forever. You were good at six. You had your funniest moments. Your biggest adventures. You were still six on our last trip to Cologne. I remember pushing your wheelchair past an elderly homeless woman sitting on the pavement. You asked what she was doing. I said she needs help and we should give her money. So you took the bills I handed you in an unsteady grip and you swayed as you leaned toward her. “Hi,” you mumbled, and she smiled, the way you made everybody smile. And I thought, OK, Lord, we can stop here, we’ll take this, even if she’s in a wheelchair for the rest of her days, even if she sways, and mumbles. Please, just stop here and we’ll be grateful.

  But we don’t get to set our stops.

  For the record, the treatments we tried toward the end of your battle were vast and varied. We left nothing unexplored. We resumed the Avastin infusions at Mott Hospital. Meanwhile, at the suggestions of various doctors around the world (thank the Internet) we pursued something called peryllil alcohol, which you inhaled through a nebulizer, and later something called valproic acid, which was injected through your PICC line. We chased after a PMK inhibitor from a major drug company that matched a mutation in your tumor and, in theory, might have some effect, even though it wasn’t designed for such use.

  I doubt any of this means much to you, Chika, nor do the hours of debate, research, phone calls, hand-wringing, or flat-out begging to get our hands on some of these things, which was often difficult and contrary to conventional medicine. We kept this all away from you, and I believe that was the right choice. Still, I want you to know that we tried.

  In writing these pages, I read your medical file provided by the hospital. I saw an entry in December of 2016:

  Her neurological status has deteriorated acutely, with marked weakness/decreased tone (and) near absent/dysarthric speech. Her MRI corroborated further radiographic deterioration.

  Nevertheless, her guardians continue to want to pursue active treatment. . . .

  Nevertheless. That word stood out. You were now nineteen months into surviving something they thought would take you in four, and the word being used was nevertheless. It summed up the battle Miss Janine and I often felt we were fighting with the medical world. Because to doctors, no matter how empathetic, you were one of many, and to us you were one of one.

  On another level, nevertheless was a perfect word. It means “despite anything to the contrary.” And there was so much in our journey that was to the contrary, Chika, right from the start. We were unlikely to have encountered you in Haiti. You were unlikely to be in our care. We were too old. You were too young. The tumor was supposed to take you fast. We were supposed to accept that.

  Nevertheless, here you were.

  Nevertheless, here we were, too.

  Me

  I wonder if you know what’s happening now at the mission, Chika. Are you able to see? Do you drop in there as you drop in with me?

  Are you aware of the four new children who are sleeping in the little girls’ room that you once called home? Or that Miss Anachemy, your wonderful former teacher, had a baby boy? Or that our older kids go with Miss Gina on Saturday mornings to hold infants at a clinic for premature babies?

  Can you see the planting garden we began, right next to the school building, with kale and beans and spinach, that was protected by wire until one of the kids accidentally ran into it and knocked it down? Or the small music room we have now with a drum set and a couple of guitars and a little keyboard?

  Do you hear Mr. Yonel, our second Haitian director, when he prays for you in the chapel on Sundays? Do you know that your two oldest mission brothers, Siem and Emmanuel, are now in America, on college scholarships? Did you see that when they moved into their dorm room and unpacked their simple belongings, they took out a picture of you and put it on the desk?

  Are you aware that Emmanuel is studying to be a doctor, because he wants to help children after what happened to you? Can you see the influence you still have, even being gone? Is that a blessing bestowed on us when this life is over?

  Or is it just a fierce and desperate hope we have on Earth, like the one we had about finding you a cure, something that remained forever beyond our control?

  You

  Your final Christmas was a muted one. We took you to the annual family gathering the night before, but you mostly watched as the other kids ate and opened presents. We were hand-feeding you by this time, spooning you soft foods, because your ability to hold utensils was shaky, and swallowing had become an issue.

  The next morning, we had our own little holiday at the house, just the three of us. Miss Janine dressed you in a red sweater for the occasion, and we cradled you in our laps as you opened gifts. You swiped at the wrapping paper, determined to get through all of them, even as your arms swung out of control. You mumbled, “Wha’ issit?” when the wrapping fell away, and I held up each new toy and explained it, waiting until you nodded.

  It took most of the morning. There was no squealing or cheering, no racing to set up toys, no pancakes or eggs or toast with almond butter, because you could no longer eat such things.

  But remember what I said about Christmas mornings with no children? For the first time in our lives, that wasn’t true for us, Chika. And for the first time in your life, you had a mother and father figure all to yourself on the holiday. That afternoon, sitting with you at the table, Miss Janine began to cry. With your hand wobbling, you reached for a tissue and gently patted her tears. Then you pushed our two faces together so we would kiss.

  There were moments at this stage, Chika, when I wondered if we were pushing you too hard. If the treatments weren’t wearing out your precious little body. The things you endured. The side effects. You often looked so weary.

  But having you there that Christmas, in our arms, watching you unpack a red stocking, just knowing you’d made it to another day—and to this day in particular—felt full and lovely and very much like a family trying to cherish every moment, which is sometimes all a family can do.