Two Years of Wonder

by Ted Neill

  As they had with Anika, the seconds ticked by like hours and I reflect that I never understood this expression until I had worked in a hospice for children. There had been nights when working the night shift was easy and a sick child would sleep soundly though the night. But other nights, he or she would cry and scream most of the night. I had held such children and was always shocked when it seemed like hours of such torment had passed and I would look at the clock to see that it had only been five minutes.

  This is turning into one of those nights. Oliver is in great pain. I know his hemoglobin is so low that his blood is barely oxygenated. He has to take five breaths where he once just took one. The effort is making his diaphragm work as quickly as if he was running a marathon—a process we can see though the skin just covering his ribcage. What else might be going wrong with him and why, I don’t even know. He has not been able to keep much food down. He says his joints hurt, his stomach hurts, his abdomen hurts, his throat hurts, his head hurts.

  Later, the Dutch student is replaced by another volunteer, an American nun in her sixties. When I return after a brief nap, I find her beside Oliver kissing his hands repeatedly. She has recently retired and come to Kenya to administer to the sick in her retirement. Each time she kisses Oliver she closes her eyes in a swoon of religious ecstasy. It irritates me to say the least. I know that each times she closes her eyes she sees her Lord Jesus and when she opens them and looks at Oliver she sees him in just another form: Oliver, the living embodiment of her Christ, the ultimate love of her life.

  She is my friend, but at that moment I hate her. She is making Oliver into some fetish of religious worship that he is not. In my eyes he is not Jesus. He is a kid who loves pasta marinara, Harry Potter, The Chronicles of Narnia, and Lord of the Rings. He is a child that loves learning, who can beat me half the time at chess. He is a child who used to play beneath a tree covered in passion fruit vines in his grandfather’s yard. He is a child that is not afraid of death because his mother is waiting for him. He is a child we have all deceived by not telling him that his grandfather would be waiting there as well—if one believed in such things.

  But I say nothing to the nun. Maybe she is just trying to comfort him through touch and I just can’t accept the idea there might be anyone better suited to care for Oliver than myself.

  Oliver becomes increasingly restless, writhing and crying out in pain every few minutes. At one point Oliver turns to us. His face is twisted in pain. He looks terrifying and grotesque. In an angry, accusatory voice he says, “Please help me!”

  I look at the clock. It is just after midnight and Oliver is due for another dose of codeine in ten minutes. His last dose is wearing off and I imagine that is why he is in increasing discomfort.

  I cross the room and find the bottle. I use a cereal bowl and spoon as a pestle and mortar and crush a pill into a fine powder. The only drinkable liquid available is orange Fanta. It would not be my first choice and I can only imagine what the carbonation might do to Oliver’s stomach, but it is all we have available. I pour some into the bowl, swirl it around then bring it over to Oliver.

  I lift him up and lift the Fanta with flecks of codeine in it to his mouth. He can’t move his lips well on his own. I have to pour it into his mouth myself. It sits there about his tongue for a long time. He finally swallows.

  Then he screams. I can see his esophagus well at this point and the passage of just this tiniest bit of liquid has been excruciating for him. I lay him back down on the bed where he breathes even harder as he makes up for the breaths he missed while swallowing. I look in the bowl at what I realize now is an enormous amount of soda for him to swallow. I curse myself and realize I have gone about this all wrong.

  I search through the medicine cabinets, full of self-loathing and a familiar sense of inadequacy. I miss Weena who has returned to California. I yearn to talk to my mother. She has worked as a hospice nurse and I feel like there are so many little details, little comforts, that I should know right now that I simply don’t, and as a result Oliver is the one who suffers.

  The nun is beside Oliver’s bed, kissing his hands again, humming a church hymn.

  There are no codeine suppositories. In the past they have been an alternative to having the children swallow pain killers. I am forced to go back to the bottle of pills. This time, however, I crush the pill in the spoon itself then add just enough soda to fill the spoon up. I return to Oliver. The nun holds him up. I tell him I have his medicine.

  “I already took the medicine,” he says.

  “You have to take it again.”

  “It hurts.”

  The nun’s face is softening. I can sense that she wants to relent. But the anger of Oliver’s own words is still with me. His accusatory face is still fresh in my mind. I become firm with him, answering his conviction with my own.

  “Oliver, if you want me to help you, if you want the pain to stop, you have to take this.”

  He nods. I don’t think the nun approves of me speaking to a dying child in such a tone but she moves to hold Oliver up anyway. I bring the spoon to his lips. Moving has disrupted his breathing and we wait for it to become regular once more. Then I pour the concoction into his mouth.

  It remains there a long time, soda orange and chalk-white froth. He is taking hissing breaths in through his nostrils. I think of the stories he has told me over the months about his family. I recall how he always cooperates in the laboratory, even when they have to perform painful, invasive tests. I remember how staff members, volunteers, and children have all told me that Oliver is such a brave boy.

  I’m hoping he can summon that courage now. I begin to think he has given up. The liquid is just sitting there in his mouth.

  Please Oliver.

  He closes his lips and swallows.

  This time the pain is too great for him even to make a sound. His face simply contorts and he looks up to the ceiling while he utters the smallest of cries. The nun and I hold him and lower him to the pillow. He is exhausted. But the codeine takes effect. He begins to writhe less. Eventually he closes his eyes and drifts into something like sleep.

  I’m spent. I have already stayed well beyond my shift. Tired as I am, I know I am of little use, and, if anything, a danger to Oliver. I tell the nun I am going to get some rest and that I will be back in an hour.

  Oliver dies while I am sleeping.

  When Mum Amelia arrives in the morning, I try to relate to her Oliver’s last few hours. What strikes me is that even in his dying moments, he remained the polite, thoughtful boy we had always known him as. He said please and thank you. And in the end, I tell Mum Amelia, his courage did not falter.

  I know on some level this must please her, but she shows no emotion. Her face is still and as expressionless as stone. I know her by now though. She will go back to her room in the cottage and weep there in private. As for me, I weep right in front of her.

  A few days later we bury Oliver on his grandfather’s property up near Meru. The older children from Cottage Yellow, Miriam, Alexis, Tabitha, Jamina, Josephine, and John, attend the service. They even carry his coffin to the grave. It is a light load considering Oliver’s weight at the end. The grave is deep, deeper than the other graves we have buried our children in and there is something about that finality I do not like. I take comfort in the fact though that his grave lies between that of Oliver’s grandfather and mother.

  Back at the house there is rice with beans or meat served by a few of Oliver’s distant relatives. Pricilla is there but she pretends not to recognize Mum Amelia or myself.

  Always a mixture of bravado and vulnerability, I notice Miriam is especially subdued. While I am eating my own beans and rice in the farthest corner of the yard, I find myself staring at a round shape in the bushes. I realize that it is a passion fruit. I stand up and examine the vine. It winds around a low but wide bush. Beneath its long drooping branches there is room for a child to play and create an entire imaginary house with rooms and halls.
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br />   I call Miriam over and show the bush to her. I tell her that this is where Oliver used to play. She stands there, passively staring. I become aware that it is only my own foolish sentimentality that wants her to say something, do something, that will lend this moment some significance.

  Instead she simply picks two passion fruits from the vine. She hands one to me and places the other in her pocket, then returns to her bowl of rice and beans.

  Alexis has just started school at one of the public schools. These were the schools that rejected the kids from Rainbow because of their HIV status. It took a supreme court case to get them to allow our children in, but discrimination remains.

  Alexis is fourteen. She is pugnacious and forthright. The boys of the orphanage will testify to her being a tomboy and very competitive in soccer. Bottom line: Alexis is tough. She is from Cottage Yellow and many volunteers assume she is the one who taught Miriam her strictness (I’m not so sure, I think Miriam is a tough disciplinarian at heart, but I digress). Alexis is one of the big-girls of the house and she is often put in charge of the younger children, however, at times her tough mask slips. On a retreat with the teenage girls, I remember my sense of shock when she came up to me at the breakfast table holding her antiretrovirals in one hand, a glass of water in the other, her brow furrowed, her eyes wide with worry.

  “I can’t take them with water so early,” she said.

  “Why not?”

  She twisted her mouth into a frown, darted her eyes side to side and said in a soft voice, “I’ll throw up.”

  It’s a rare show of vulnerability from her and I can read in her reluctance that the admission is against her nature. But stuck with me for the duration of the retreat, her hand is forced.

  “No problem,” I say, making as little show of it as possible. I was eager to be her co-conspirator, preserving the tough exterior she prided herself on. I realized it protected her from the world, a world that—she later tells me—she felt rejected her from birth and really never stopped.

  Alexis is a total orphan. No one knows where she came from or who her extended family might be. As the orphanage begins to focus more on re-integration, sending the children to stay with family on the holidays, Alexis and a handful of others have nowhere to go and often go home with staff members.

  It’s Alexis who at her new school feels the full brunt of discrimination. When she goes to join the boys in a soccer game at lunch, they stop the game and pull the ball away from her. They tell Alexis that girls can’t play. As if she were at the orphanage, she argues with these boys, insisting that she can and that she is likely better than their best player. Then the real reason comes out.

  “We don’t want to play with someone who has AIDS,” one boy says, his words hitting her like a fist. The taunting snowballs from there, the most painful of many phrases hurled at her: “You won’t even be alive. You won’t even be here in a few weeks.”

  That’s the barb that cuts the deepest and stings the most. Alexis, so fierce in other circumstances, is defeated.

  She is quiet around the cottage for days after that. Stubborn and independent, she does not disclose what happened or how she feels about it to anyone, although from the way she is short with the younger kids, hitting and punching them when she loses her temper, it’s clear she is not herself.

  She does not seek out any grownups for guidance and instead counsels herself. Days, weeks pass. She prays, at first for the boys to be punished, then for strength. Time does not make the hurt less but time provides another revelation that she would share with me later.

  “I realized I was still here. I wasn’t dead. I was taking my medicine and I was fine.”

  The revelation reignites the fight in her. She seeks out the same cadre of boys at school, stands among them in the middle of their soccer game and says, “By the way, I am still here.” It becomes her mantra. Getting off the school bus each morning she bounds over to the boys to greet them with the same phrase.

  “I am still here.” Whether she sees them passing on the stairs, “I am still here,” the hallway, “I am still here,” the classroom, “I am still here,” the library, “I am still here,” the head mistress’ office, the school clinic, the bathrooms, she repeats, “I am still here.”

  Over time Alexis is herself again. I find it a shame that sometimes the children have to take it upon themselves to change hearts and minds, to counter discrimination and stigma, but unfortunately it’s the unfair burden of an unjust disease.

  But in the end Alexis wins. (She always does.) She is one of the few girls that now plays soccer with the boys.

  And she is better than most.

  The night of Oliver’s burial, we have a dinner of pasta marinara in Cottage Yellow to celebrate his life. The children decorate the walls with posters asking Oliver to pray for them. They draw pictures of Oliver alongside angels. When the meal is finished and I am doing dishes, Miriam begins clapping her hands, bringing the children into a uniform rhythm. They begin to sing.

  Mama Wambui

  Kenya Mama we,

  Alinitu tuskamarinda

  Akaniambia wambui ako wapi

  Siku mbali mpenzi wangu

  Alikufa na Malaika

  Nikaenda hotelini

  Nikakuta sister Esther

  Akinipa chips kidogo

  Ongeza Ongeza

  Ongeza Ongeza

  Chips!

  Mama Wambui

  You are Kenya’s Mother

  They were making fun of my dress

  I asked where Mama Wambui was

  Many years ago

  My lover died

  He died in sadness

  I went to the hotel

  I met sister Esther

  She gave me a few chips

  Add More! Add More!

  Add More! Add More

  CHIPS!

  The dancing, clapping, and the happy voices feel incongruous to the sadness I have been experiencing the past few days since Oliver’s passing. But then I admit that my sadness is not misplaced: all these children may face similar ends as Oliver. There is no cure for AIDS, nor are there easy answers to poverty, inequality, and injustice. The tragedy of Oliver will be repeated, I know, over and over again, millions of times.

  And yet, strangely enough, there will still be these children, dancing, singing, and laughing despite it all. It dawns on me tonight that although there is tragedy and loss in this world, it coexists with moments of mirth and beauty and children are stewards of that joy. It’s one of the world’s miracles that in war zones, slums, refugee camps, orphanages, and even AIDS hospices, children will still play, sing, and laugh.

  Years later as I write this, I still think that is something worth fighting for. Most importantly for me, it’s worth living for.

  Afterword

  I hope this story does not read as one of unmitigated tragedy. I hope it is a story of resilience and a testament to what some determined people—however flawed—and some brave children have accomplished in the face of striking odds and even more striking indifference. Many of these children are young adults now, going to school and/or working jobs. Some have become social workers in hopes of helping other children. Some are even parents themselves now—with improvements to prevention of mother-to-child-transmission (PMTCT), HIV-positive women can give birth without infecting their children. So today, those children I knew are generally doing the same mundane things all of us do—they just have to take a few more pills in the mornings than the average Joe and are hypervigilant about safe sex.

  But I should also warn the reader to beware of narrative. In 2006, I wrote the following conclusion to the stories in this book:

  Tabitha still struggles in school. Having experienced malnutrition, illness, trauma and growing up in an environment as deprived as Kibera, she simply missed critical milestones in her psychosocial and cognitive development. At approximately twelve (we can only guess her exact age) she still reads like a six-year-old. Her grasp of English has been slow an
d frustrating. Even the other children find her somewhat backwards. As I have picked up Kiswahili, I’ve realized that Tabitha is the butt of many jokes.

  Ivy’s performance in school has been consistently average. She has been attending classes regularly and is only two years behind most children her age. She can be disruptive in class and there have been numerous instances of her bullying other children. Learning to resolve her differences without resorting to violence is something she still struggles with. Although she has turned eighteen, she still insists, again to the point of physical violence, that she is only fourteen—the age she was at when her brother died.

  Lialabell shows every sign of growing up a completely well-adjusted and affable child. There have been no further instances of sexualized behavior and she shows no signs of remembering what her father did to her.

  I was present the night Jamina asked Miriam what made the children at the home different from other children. Miriam looked to me to explain, but I deferred back to her. Miriam proceeded to tell Jamina in plain terms that there was a disease in their blood that made the children at the home sick very often. This was the reason they all had to take medicine. Jamina asked if the adults like Mum Amelia, Bonava, Teacher Margaret, even myself had the disease. Miriam said no. Jamina’s next concern was for me and whether I would get it from sitting close to her. Miriam again said no.

  I was prepared next for a deluge of tears from Jamina, however, she simply returned to reading Green Eggs and Ham. I realized that for these children, finding out that they had HIV was not an event, but a process. They grow up hearing the acronym but it is only over time that they come to be aware of the implications.

  It turns out that Harmony has the gift of near-perfect pitch and a dazzling voice. One afternoon while she was sitting in front of her cottage singing, a visitor to the home overheard her. The visitor happened to be a woman who makes children’s music. A few weeks later she took Harmony to a recording studio and let her sing backup and even solo on a few songs. Since then, Harmony and a group of children from the home have sung backup for a famous Kenyan pop musician. That particular song made with the children remained number one in Kenya for over a month.