22 March 1999, Monday night
I’m back from a swim in the dark. I swam a few laps to clear my head. There’s a force within me, an energy source I managed to tap into but can’t turn off easily. So, towel in my wet hair, my roommates wisely slumbering around me, I write to see if I can bleed off the excess energy, staunch the flow. I must reserve this drive for tomorrow.
My first day of surgery: The team worked. I can’t describe it as confusing since each of us played our respective roles and, within the parameters of our roles, there was efficiency and a tightly-woven integrity. The day ran like an elegant machine, a clockwork, actions triggering other actions. The assemblage of these intricate parts whirred away in the dense humidity and heat to accomplish a singular goal again, again, and again.
There are five operating tables in two rooms and seven surgeons. Three doctors are from Manila, here to assist and receive training. Beginning bright and early, a steady flow of patients filed down from the pediatric floor to the playroom outside of surgery. Each child was lightly sedated, carried in for surgery when a table came free, brought out for a brief stint in a makeshift recovery room reworked from an old infant nursery, then placed back into the waiting arms of parents and family. Along the way a thousand checks and rechecks occurred. As the day wore on the average age of the patients went from infant to toddler to grade school. The surgeons assembled their schedule to accommodate each age group’s ability to go without food.
I spent the day floating between the playroom – talking to parents and patients about what was about to happen and assisting my flat-mate Karlene, the child life worker – and the parents’ waiting area, answering questions, speechifying on appearance differences, getting surgical reports, and preparing moms and dads to see and care for their post-surgical child. Somehow my ragged voice is still with me.
Karlene is the Tasmanian devil. She instantly fixed on each child’s capacity to understand and managed, in whatever brief period of time allowed, to connect with them, comfort them, and convey a simple explanation of their approaching surgery. With a plastic stethoscope, some wooden tongue depressors, and a gift for clownish exaggeration, she imparted a pared-down version of the future for kids and parents to dispel some of the mystery. With or without the help of a translator I witnessed her playing a roomful of nervous people and entertaining them with the story of how a doctor will arrive, they will be asked to drink some medicine they will not like, they will go to sleep and wake up later with their arm fixed straight to accommodate an IV, a bad attitude, and a lip or palate changed forever.
Our translators are a group of nursing students doing their surgical rotation. We all crowd into the playroom – really a storage room in the process of rapid redecoration with crayoned children’s drawings. The sisters were kind enough to provide us with a very loud floor fan. It moves the air around but the noise takes the anxiety level up a notch.
Once the initial complement of patients filled the operating tables, I received a steady tide of anxious parents to handle in the waiting area. I set up a group of chairs in the landing of a stairway a short distance from the recovery room, where they would be instantly available to escort their post-surgical child back to the floor. I carried around my pile of handouts created to educate and calm nerves. My training for this role was filled with exhortations to use this waiting time as an opportunity to offer an encounter group discussing the myths about birth with a disfigurement, the importance of school attendance, and social problems. I’m feeling a twinge of guilt about this. Yes, I spoke with parents as a group, mostly at the prodding of Quentin’s wife Gail, a professional psychotherapist who joined our team to offer her services where they might be needed and, after the mission is completed, travel the islands with her husband. Her help here is invaluable. The scores of parents and patients passing through defy an individual’s ability to handle them all.
I don’t feel comfortable in front of a group. I never have and didn't hide this when I went through my training. (Sounding mighty defiant here!) I feel more at ease speaking directly and individually with each parent. In my mind, in my memory, the segment of time you endure after they take your baby out of your arms, making a breathless leap of trust - giving up control – waiting for surgery to end, in those frozen moments listening to a speech is as effective as watching the television news with the sound turned off. Instead I made every effort to be there, next to Rodeth’s mother, next to Arthur’s mother, next to little Christina’s father, and tell them how much they must take care of themselves: to rest, to eat, gather their energy for what is coming. I told them as much as they can manage to calm themselves it will benefit their child. I asked them to think about what their child will feel: groggy from the drugs, moody and angry about the discomfort, and surprised at their restricted arm held firmly straight for their IV. Prepare for blood. Prepare for big black stitches. If there is a palate repair, there will be a stitch on the tongue as a safeguard against swallowing it should the inflammation following surgery be severe. I showed them photos of freshly post-op children and more pictures of children with completely healed repairs. Smiling kids, beautiful kids. I told them I was no expert: not a doctor, not a nurse. I am here because, like them, I am a mom, because I traveled this road.
Tears come to me now to think of it. So long ago I went through all this, again and again. The life of my child was so important, to fragile, so precious. What would I have listened to? Are these the right words for it? Does anything break through that kind of terror, the interminable period between when your child is taken away and when they are returned?
I must lie down and close my eyes, even if sleep won’t come to me. Today was a rich, beautiful day, intense with life.
23 March 1999
It is very late and this will be short. We are just returned from another dinner hosted by a local politician and Op Smile supporter. The team is showing signs of wear. I noticed several drooping heads after dinner, sitting through another long-winded welcome/thank-you speech. The pace continues.
A night out with the team after busy day. We look pretty lively here:
Michael, Isabel, Karlene, and me.
I arrived at the hospital early today to cruise through the wards, see how the patients were doing, and greet the newcomers. They crowded into the hallways and down the wheelchair ramps in the stairwells. One of yesterday’s patients developed a slight fever. The rest make rapid progress: recovering from anesthesia, taking some fluids, getting up and about, removing the IV, and even taking in some food. All but one went home today with instructions to return next week and get their stitches removed by the local surgeon.
There was a different atmosphere on the floor today. The mixes of people, pre- and post-surgery, were buoying each other. Op Smile hands out “smile packages” to all cleft and palate patients before they leave the hospital. It’s an assortment of trinkets: toiletries, toothbrushes, a small toy or two, and always a little hand mirror. I caught several of the cleft-repair children gazing fascinated at their new reflection, holding the mirror in one hand and letting the other lightly explore the line of their new mouth: no more splayed teeth, no more open gap. The palate cases were not as comfortable, all were ready to have their tongue stitch removed.
Parents are thrilled. Considering the overcrowded conditions, the heat, and lack of any privacy, all are thankful and uncomplaining.
I sat on little Christina’s bed chatting with her father and a worn, elderly-looking woman who turned out to be her mother. The small bundle of the family’s food and possessions was neatly tucked against the dented bedrail. Behind her headboard, up the cracked, stained yellow wall, a long lizard crept to the high windowsill to bathe in the sun. The window held no glass or screen. Christina’s mom gripped my hand; tears trickled over the sunburst of wrinkles on her face. “Magandá,” she whispered, turning to straighten her daughter’s sheets for the third time, “Magandá: beautiful.”
The departing people were full of questions about talking to teachers at school and how to handle teasing. I even heard a few questions about what causes cleft lip and palate. There was a little empowerment there, I guess. They withstood the mysteries and fright of surgery; now they are ready to take on the rest of their lives.
I can’t write any more. Sleep sounds so good to me right now. Tomorrow I can’t forget to write about Lucky. I must write about Lucky.
24 March 1999, late
I carried this journal all day thinking I’d get a chance to write. Not! Karlene woke up sick this morning and couldn't come to the hospital. There are several other people down with stomach trouble too. I took over the playroom and, with help from Gail and the nursing students, supervised the waiting room and the pediatric floor. I’m not as good as Karlene but hell, I managed.
Yesterday Karlene and I borrowed a Polaroid camera from one of the doctors and scrounged a packet of film. We compiled a little picture book of the surgery process to use in the playroom: a doctor in scrubs and mask, an operating table with oxygen tanks and big overhead light, the recovery room, a close-up of an IV, etc. It was worth the effort. I pulled apart one of my before-and-after photo albums and inserted the newly-taken pictures. Parents pored over it and immediately started explaining it to their children.
Satisfying work: this is how I feel. I am tired beyond any threshold I've reached before: bright yellow circles burned into my retinas. Each vertebra, right up to the base of my skull, feels held together with old chewing gum. It lends an element of unreality to this reality. I make sure to sustain myself, eating though the heat takes away any appetite and sucking down bottle after bottle of water. I don’t want to get too exhausted to help. There is no question. These missions help children. Their lives are changed.
Lucky. I met him during screening and knew he was unique. He is twelve years old but looks closer to nine or ten. This is the case with many of the children here, poor nutrition and poor development. He was born with a cleft lip and palate along with clawed hands and feet. His dad named him Lucky because his hands have seven fingers altogether. Lucky was also born with a disposition any parent would die for: sweet, engaging, and curious despite difficulty talking, walking, and manipulating things with his hands. Lucky is always happy. I was glad to see him selected for surgery even though, at his age, there’s little chance for him to speak clearly.
Lucky showed up in the playroom Tuesday afternoon swathed in a jonnie coat and eager to play with our toys; offering us his endearing smile along with a wide cleft parting his upper lip halfway up his nose. I made name-tags for him and his “Auntie” and ran through the usual pre-surgical chatter. Lucky was bright-eyed and receptive and, even after dutifully swallowing his sedative, he hobbled into surgery on his own two feet guided a doctor’s steadying hand.
I brought Auntie out to the waiting area and told her to take some time to rest and eat and let her know where she could find me.
“Ma’am Trudy?” she said as if about to ask a great favor. “Please Ma’am Trudy to meet Lucky’s mother?”
I followed her up the wheelchair ramp to a corner of the pediatric floor. A small dark woman was weeping quietly on a low cot. She spoke very little English but her sister, “Auntie,” was fluent. My heart broke for her. Lydia, Lucky’s mother, explained how she loved Lucky even though so much was wrong with him. She’d rather have him the way he is than to see him go through any more hurt. She was afraid: to see him changed, that she might lose him. He was the only child she could have and he was everything to her. Her breathing shook with emotion. I asked her what Lucky’s diagnosis was. Lydia didn't know. She thought her child was born this way because she slept with Lucky’s father after an argument. Lucky was retribution for remaining angry with her husband.
I walked Lydia down to the waiting area and got one of the surgical nurses to obtain a progress report on Lucky. He was sailing through surgery, everything normal and on target. I held her hand and we sat with the other parents and looked through the surgery photos. I passed around pictures of Trevor. I brought a large assortment of them, before and after many of his surgeries, Cub Scout events, Halloween costumes, horsing around in our backyard. I talked about what makes Trev Trev: a rabid Yankees fan, letting the dog sleep on his bed, a geography buff, how he can’t stop from drumming his fingers on everything in my house, his collection of pine cones and rocks, and his dislike of all green food. I talked about what causes cleft lip and palate: heredity, polluted water, and sometimes just a twist of nature – a mix-up in the instructions. We all discussed how hard it is when people can only see what is wrong with your child, when they can’t see past the surface.
I watched this woman turn around. I’d like to take credit for it but can’t. She tapped into some inner resource, the same one providing Lucky with his thirst for living. Lydia gathered herself and, when Lucky was stabilized in recovery, she was allowed to be with him: to touch his face and quietly cry a little more, then be there for him when he needed her.
Lucky and family were checked out today. One of the team pediatricians, Kevin, researched a diagnosis for him, going so far as to call his wife in Iowa to find some textbook entries. He succeeded in giving Lucky’s family some solid information and a contact in Manila for more. Before, the condition was a mystery to them, a punishment. I think this subsided a bit. There is a name, a diagnosis. The blame and guilt fade a little. Lucky left, after clowning for the other kids in the ward and charming the floor nurses with his unaffected, eager attitude. He took with him a wonderful, broad, unbroken smile.
There is more, much more. So many stories to tell but no time to write them all down in detail: Jessica, a Down Syndrome child, her mother a seamstress with no help and very little money; swaggering Gabriel, a tough and dirty street kid – all alone and not able or willing to talk; sweet Francesca, a tiny quiet toddler and her frightened fourteen-year-old mother.
I must put my head down if I am to work tomorrow. Karlene is better but others on the team are not so well. We’ll need every hand.