Two weeks later, we celebrated your seventh birthday. For this event, everybody came. I mean everybody. Our sisters and brothers, our cousins, their kids, all your “friends” in their forties, fifties, and sixties, and the pied piper line of contacts you had made, from nurses to musicians. What a crowd you drew! We had it at our house, and we dressed you in your favorite yellow Belle dress, and when Miss Janine and several friends wheeled you into the room, I played “Happy Birthday to You” on the piano as the crowd sang along.

  We’d arranged for two “princesses” to attend, dressed as Cinderella and Sleeping Beauty, and when they came through the door, despite whatever heaviness your brain was feeling, you lit up. The princesses played games and gave out gifts and sang songs accompanied by a boom box, including “A Dream Is a Wish Your Heart Makes,” which ends with the lines about grieving but believing, and your wish will come true. You couldn’t really say much; you sat between Miss Janine and me most of the time, holding our hands. But your eyes followed everything.

  I couldn’t stop hugging you that afternoon, Chika, I’m not sure why. I’d walk away for a minute, then come back and lift you up, gathering the billowing yellow skirts under my forearms. Sometimes, I felt you burrow into my shoulder, and I tried to get you to look at your cake, but you couldn’t lift your head. It was the happiest and most heartbreaking birthday I have ever experienced.

  On my next trip to Haiti, I ask Alain to take me to a cemetery. He nods but says nothing. Nothing needs to be said.

  We go to a place called Parc du Souvenir, with an entrance driveway that slopes up through big gates. It is quiet and hot when we get out of the car, and I see uneven rows of headstones in patchy grass, some of it green, some of it dried to the color of sand. The markers are so close together. I cannot imagine this for Chika. My breath accelerates. I am sweating.

  A worker approaches and I ask him to show us a more secluded area. He says there is no such thing. We keep walking. The headstones are shaped like large white padlocks. Many of them have two, three, even four names.

  “They bury people on top of each other,” Alain says.

  He sees my reaction.

  “This isn’t how you do it?”

  The sun is brutal. I hear a truck go by. Several workers have now attached to us, one wearing garden gloves. They seem curious about an American doing the searching. We finally find a small corner, under some trees, where there are two unused plots together. I see a butterfly flitting between the tree leaves. I watch it fly away.

  “Can we get both of these?” I ask Alain. “So there can be more space?”

  “We can ask,” he says.

  In the office, a middle-aged woman with glasses and crimson lipstick takes my information. When I tell her I want to buy the two plots, she says, “For how many people?”

  “One person. A child.”

  Her eyes bulge.

  “That does not make sense. You can bury ten people.”

  “I understand,” I say. “But this is what I would like.”

  She shakes her head.

  “Maybe you will have other children who will need it?”

  I just look at her. What do you say to that?

  She finishes the paperwork. I make the payment. We get back in the truck, and the man with the garden gloves waves as we exit.

  It’s a quiet ride back to the mission. Upon arrival, I see some of our kids playing soccer, and a few jumping rope. Two of our girls, about Chika’s age, are leaning against a picnic table, looking at the sky, as if the hours will never run out. How can certain children have so much time, and Chika have so little?

  I feel suddenly ashamed, like I just did something terrible. I want to race back to that cemetery and yell, “Cancel everything! A mistake has been made! She’s just a kid!” But Alain has taken the truck to buy diesel fuel for the generator, and I am left there alone, standing in the sun.

  Lesson Seven

  What We Carry

  One afternoon, when you could no longer walk on your own, we were coloring at the kitchen table. I glanced at my watch and realized I was late. I stood up.

  “Sorry, Chika, I have to go.”

  “No, no,” you protested. “Stay and color.”

  “Chika, I have to work.”

  “Mister Mitch, I have to play.”

  “But this is my job.”

  “No, it’s not!” You crossed your arms. “Your job is carrying me.”

  I have thought about that sentence more than you could imagine. At the time, I laughed it off as you being your lovable, bossy self. But the more you weakened, the more you needed me to transport you even across the room, the more I realized the wisdom of your words. Your job is carrying me. That line became the underpinning of the final item on my list, maybe the biggest lesson you taught me.

  What we carry defines who we are.

  And the effort we make is our legacy.

  The first week of February is traditionally Super Bowl week. For sportswriters, this is a big event. I had covered every Super Bowl since 1985. Thirty-two years straight. It was something my newspaper expected me to do, and I’d actually grown a bit proud of my little attendance streak, figuring I’d keep it up until I retired.

  But I didn’t go in 2017. All the things I had carried before, all the work that had once seemed so critical, had come to a halt, dumped out like a flatbed emptying its contents. When that week arrived, signaling your twenty-first month of battle—which put you on the furthest reaches of DIPG survival—you were in a different place than at your birthday party a month earlier. The tumor, as Dr. Van Gool put it, “had grown quite scandalous.” You could no longer eat on your own, so a feeding tube had become necessary. At first, they tried one that went through your nose and down your throat. You yanked it out when no one was looking. (Honestly, part of me wanted to cheer you. Who would want such a thing?)

  But that only led to a more stable version, a G-tube that was surgically placed inside your abdomen. Every day and every night we would load new bags of liquid food and run them through the stand-up pump, down the tube, and into your belly. We also infused medications through your PICC line multiple times a day, sterilized it, flushed it with heparin, tucked it under the small white sleeve on your arm. We nebulized the peryllil alcohol through a plastic tube in your nose.

  I don’t know how you handled it, Chika, all the apparatus. But even with all that, even with your precious voice reduced to a few grunted sounds, you were still you. You would dip your head ever so slightly to show me which doll you wanted to sleep with at night. You would wave a wobbly hello when we FaceTimed with the kids in Haiti. One time I was coughing badly, and your eyes turned to me, and Miss Janine said, “He needs someone to smack his back. Chika, do you want to hit Mister Mitch?” I leaned down, and you tapped me three times.

  The day of the Super Bowl, I was sitting on your bed, flipping through movies for you to watch. I read the titles out loud and you didn’t react until I came to Mr. Peabody & Sherman. You raised a thumb. So I watched it with you.

  At one point in that movie, Mr. Peabody, a dog, goes before a judge to adopt his protégé, Sherman, a boy.

  The judge asks, “Are you sure you’re capable of meeting all the challenges of raising a human?”

  And the dog says, “With all due respect, how hard can it be?”

  * * *

  I’ve decided, sitting here, that I will not explain in any great detail the final eight weeks we had with you, Chika. They were difficult and trying, with last-ditch medical attempts, and an oxygen machine, and rubber thumpers that we used on your back to get you to cough, and a suction tube that went in your nose and throat to pull up the stuff that was blocking your breathing. You wore a small monitor on your finger to measure your pulse and oxygen levels, and it flashed red numbers all through the night, waking Miss Janine and me with beeps if a level moved too high or low. It got to be that I knew the right numbers—and the wrong ones—within a second of my eyes opening. I don’t hate many things, Chika, but I hated that monitor. It was like a glowing red countdown on your existence.

  Still, there were positives. You continued to effuse a life force that melted the most experienced workers. A team of physical therapists from a place called Walk The Line started making house calls when you could no longer travel there, because, they said, “We miss Chika.” A chief nurse named Donna from a company called Health Partners would drop by unscheduled, just to see how you were doing. There were times when I would walk in the room and you had two of our friends, three of our family members, a couple of health care workers, and someone playing the ukulele. You drew the biggest crowds.

  One night we told a nurse named Shawn, who was tall like your mother, how much you liked church music. Out of the blue, she asked if she could sing for you.

  And with all of us gathered around, and you lying in your little medical bed, Shawn launched into the most beautiful rendition of “His Eye Is on the Sparrow.”

  “I sing because I’m happy

  I sing because I’m free

  His eye is on the sparrow

  And I know He watches me.”

  Your eyes watched in wonder. And there was wonder in that moment. Miss Janine wept.

  Your final days took us into April, when the clocks had been pushed forward and the weather had warmed. You had now made it to a twenty-third month. That is exceptionally long for someone with DIPG. Miss Janine had said you were a miracle, and in so many ways you were.

  I studied you each evening before turning out the lights, so still, so innocent, your lineless face without expression. It’s hard for me to explain how helpless I was feeling, Chika, unable to fight beside you in whatever battle was raging in your head. How were you so strong? I thought about the tale of Jacob and the angel, wrestling by a riverbank all through the night. I’ve often wondered why that fight took so long, since the angel only had to touch Jacob’s hip to cripple him.

  But I suppose it was Jacob’s fierce determination that brought him to the morning light. And it was your fierce determination, Chika, that brought you to this point, still here, after nearly two years of wrestling.

  Yes, the price was dear. We lost your lovely voice along the way, and had only your half-open eyes, into which I would look each day and say, “Good morning, beautiful girl.” Your body, through so many weights and changes, had returned to the thin, long-legged form of your arrival in America. You were taller by a few inches, but in certain ways, you had come full circle.

  In the predawn hours of April 6, your numbers dropped precipitously. Your heartbeat was way down, and your breaths came sporadically. I was sleeping on the floor by the closet, because the beeping monitor had kept me awake, when I heard a hospice nurse call my name. I sprung up in the darkness, shouting, “What? What?” and the nurse said, “It might be time.”

  Miss Janine and I leaned into you, rubbing your soft cheeks. We tried to steel ourselves. But as the morning broke in a gray fog, it did not feel right. It did not, to us, feel like “time.” I pushed my ear against your chest and I heard a sound, almost a groaning.

  “She’s struggling,” I said.

  “Those are just the sounds children make,” one of the hospice workers said, “at the end.”

  I looked at Janine. She shook her head. I felt the way I did in that conference room with Dr. Garton two years earlier.

  “No,” I said. “She’s fighting. And if she’s fighting, we’re fighting.”

  I leaned you forward, and, forgive me, Chika, if I did the wrong thing, but I began pounding on your back with the small rubber thumpers, as I had been taught, and running the suction tube through your nostrils and down your throat, as I had been taught, and pounding again, saying, come on, baby, come on, baby, if you want to fight, then fight. And with the hospice workers watching in utter astonishment, your heartbeat lifted and your respiration increased and within five minutes you were back to a safe zone. Miss Janine stared at me, both of us heaving breath, and one of the hospice workers whispered, “I’ve never seen that before.”

  And through our tears, Miss Janine and I thought of the same word:

  Nevertheless.

  What you carry is what defines you. It can be the burden of feeding your family, the responsibility of caring for patients, the good that you feel you must do for others, or the sins that you will not release. Whatever it is, we all carry something, every day. And for all your time with us—as you so defiantly stated, Chika—my job was carrying you.

  My job was—and is—carrying your brothers and sisters in the orphanage.

  My job, it turns out, after so many years without them, is carrying children.

  It is the most wonderful weight to bear.

  One night, while she can still speak, Chika takes a small stuffed bear to bed. A gift from the hospital. A Care Bear, they call it.

  The bedroom is dark. I kneel down next to her.

  “Well, hello,” I whisper to the bear. “Do you belong to Chika?”

  Chika puts the bear in front of her face.

  “Yes,” she murmurs.

  “You’re a lucky bear. I think Chika is a really special girl.”

  “Uh-huh.”

  “But don’t tell her. That’s between you and me.”

  “I am Chika’s bear,” she says, “so I have to tell her everything.”

  “Well, don’t tell her how much I love her. It’s a secret.”

  “Chika already knows how much you love her.”

  “She does?” I say, skeptically. “How much?”

  Chika takes the arms of the bear and does what I always do, pulling them around until they touch behind its back.

  “Thiiisss much.”

  My eyes tear up.

  “That’s right,” I whisper. “That much.”

  You

  And so.

  After you rallied so brilliantly on that foggy April morning, we called everyone who loved you, and everyone you had touched, and we told them if they wanted to see you, they should come see you now. And they did. Oh, my, they did. You loved a parade? Well, you had one of your own, Chika, a day-long procession of family, friends, and your small army of touched souls. They came and sat by you, holding your hands, and we shared the details of that morning’s return from the brink. And if that was the final story in the million or so we have told of you, it was a good story, a brave and defiant one, which is what you were.

  That night, all the kids from Haiti were gathered after devotion, and we held an iPad up to your ears as each of them said, “Good night, Chika” or “Good night, precious.”

  The next day, April 7, was a fine spring morning. And just after lunchtime, with the sun up high like an island sky, you began to say goodbye.

  This time there was no horror, no bolting up in the darkness, no groaning sounds. You were lying on your back, your head tilted down. There was soft Haitian music playing. Miss Janine got in one side of your bed, I got in the other, and we held you, the way you liked, the way we did in Germany when you told us to kiss and live happily ever after. Someone had figured out how to put photos on the bedroom TV, and they flashed silently, happy photos of your time here, wearing your swimming goggles, playing with me in a sandbox, slurping ice cream. There you were, a few feet away, untouchable, yet so full of life. And here you were, just inches away, so touchable, yet slipping from this world.

  “We love you, Chika,” I repeated, softly. “We love you so much . . .”

  We rubbed your fingers. Your shoulders. Your cheeks, which, to the end, had a softness we have never found anywhere else on Earth. We kissed you many times. We counted your breaths. They came so slowly. Only five in a minute.

  Then four.

  Then three.

  It got very quiet. Family and friends waited outside. It was just the three of us entangled together, like the fluffy, cozy bed camp you created and loved.

  Finally Miss Janine, tears dripping down her cheeks, took a deep breath and whispered, “It’s all right now, Chika. . . . You can go be with your mommy in heaven.”

  She broke down, sobbing, and my heart snapped in two, because I knew how hard that was to say.

  And I knew that you would listen to her.

  Two breaths.

  One.

  Us

  My head is in my hands. My eyes are bleary. I feel like I am going to pass out.

  “It’s finished?” Chika says.

  I barely look up.

  It’s finished, I say.

  “See? I said I would come back.”

  I rub my cheeks with my palms.

  Come here, sweetheart, I say.

  She steps in front of me. She has the My Little Pony pajamas on again, her hair is tightly braided, and she looks like the first morning she woke up in our house, and we made scrambled eggs together.

  Listen, I say, choking up. I know this is all in my head. I know you can’t really be here in front of me. But I want to tell you something while you are.

  “Ooookay . . . ,” Chika drones, placing her elbows on my knees and resting her face in her palms. “What do you want to say?”

  Just this. You weren’t my child. But you were my child to me. I could not have loved you more, and Miss Janine could not have loved you more. And wherever you went after you left this earth, you went as part of a family, actually, a lot of families. You made us a family, Chika. Miss Janine and me and you. I wish more than anything that we could have saved you, even if the Lord had different plans. But we miss you every minute. And you never have to worry about us forgetting you, because we could never forget you, we’d lose every memory we ever had before we would let go of yours. You took a huge part of us with you, Chika, the best part, but it was yours to take, and I hope it will always be close to you. I just wanted to say that, in case, for even a fleeting second, you thought you left this world alone.

  She scrunches her lips, as if thinking. Then she grins and throws open her arms.

  I reach out—and for the first and only time, I can initiate contact, I can touch her again. I pull her in, I feel her forearms around my neck, her soft cheeks and braided hair against my temples. I snuggle her into a familiar embrace, and she fits as if she never left.