Tuesday, December 17, 2013

20 and 21 March 1999, Notification Day, Operation Smile, The Philippines

20 March 1999, Saturday, Notification Day

I did not shine today. I dropped the ball. I dropped the ball and let it roll away from me. Today was the day I was most concerned about: selection day, the day we winnow out those not suitable for surgery, the bad choices. The brutal and only feasible way to inform the mass of people who passed through our screening process is to simply post a list. There are no reliable phones here and many of the poor can’t access one anyway. I prepared for this at my training. If your name is on the list you win, you get the surgery, your life is changed. The manner is of passing finals, getting a good mark on your test, making the grade. Can’t find your name? You are shit out of luck.

After the build-up and tension of four days of screening, after the punishing travel many people endured for the chance at a life, we tack up five large sheets of paper, one for each surgery day, with the names of the lucky ones - the selected ones, printed neatly in tall block letters with a black marker.

I thought I developed a handle on the situation. I talked with the team leader, John, several times about when the list would be posted and where. I asked him to encourage some of the medical personnel to participate. I needed assistance explaining and answering questions. I knew there would be reluctance to do this. It is easy to offer information to someone just given good news. But the turn-aways, the children and teenagers who weren't going to find their name on any of our lists, no one wanted to face them. I spoke with the head anesthesiologist, a wise and experienced guy from Maryland. Quentin was the final approval in the medical team decision to put someone on the list. He was familiar with the public anguish accompanying notification. He saw the need to add some humanity to the process, to offer something to those who cannot be offered surgery. I made an announcement at Friday breakfast briefly outlining one more job to be done. I plastered on my most charming smile and invited all Op Smile team members to attend.

My weakest link was the one that gave way. I didn’t figure the sheer mechanics of the posting would throw me off. Irene, the medical records secretary, was up most of the night after the surgical team made its decisions, pulling records and actually creating the lists to be posted. She arrived at the hospital late for breakfast and, observing a crowd of anxious families, decided to put them out of their misery and post the lists early. She stuck them up with some masking tape and came upstairs and quietly went about getting her breakfast. I was already there, too nervous to take the opportunity for some extra sleep, casting around for a copy machine to reproduce some of the resource lists I compiled, and about to sit in on some nurse training. I thought posting time would be just before noon.

One of the floor nurses pushed through the swing doors to our makeshift cafeteria. She was sobbing. She sat down at my table and announced all hell was breaking loose outside. How could we be so cruel?

My heart clutched in my chest. I spit whatever food I was chewing into my napkin and ran down the cement wheelchair ramp and out into confusion.

Two extremes: prayers-answered, scared, tear-streaked joy and blank despair. As I think about it now there was no possibility of one person, me, handling it all. I was caught up in a maelstrom. I planned so carefully for notification day: empathic listening, calm guidance, steady, informative composure. Instead I found myself flustered with three and four people talking, often shouting, to me at once. The mixture of euphoria and hysteria and the non-stop stream of words were staggering. Everyone recognized me from screening. “Ma’am Trudy,” they called me. “Why?” “Why was my little girl not chosen?” “Thank you Ma’am Trudy for giving us a chance!” “Can’t you see I can’t send Franco to school looking like this?” “Can you ask the doctors for me, Ma’am Trudy?” “My baby won’t eat, can’t sleep, will never speak. No one wants to look at her. Why did you say no?”

My voice rose, trying to be heard over the commotion. I started shouting and making things worse.

Finally, I found some English speakers in the crowd and put them into play translating for me, helping people find their names, giving instructions: what to do, where to go. Some of the surgeons got wind of what happened and came down from breakfast to help. Quentin showed up and John and another John, a retired surgeon from North Carolina, through-and-through a gentleman, took places on the wooden veranda of the hospital and started offering some genuine answers to these people. I didn't know who to tell that they should try again, come back next year, their baby needed to gain weight or get rid of an ear infection. The atmosphere lifted with the presence of the experts. A bit of calm and reason returned.

Then Darcy arrived. She works across the street from the hospital in the physical rehabilitation facility. Small, well-kept, gold-rimmed glasses, and a voice like a bark, she heard the turmoil outside her office and came out to investigate. What wonderful English she spoke! She fell in beside me just as my voice started to give way and the doctors were forced to leave to attend a surgical team meeting. Her no-nonsense manner made all pay attention and soon everyone was lined up and participating in name searches. She gave a quick lecture to the lucky ones: where to go for a blood test, when and where to show up for surgery, and what to bring, and sent them off. We offered what we could to the others.

Oh yes, there was anger and some openly expressed despair. I found this easier to take than quiet acceptance. Again and again a jeepney would pull into the hospital entry and a father or mother would climb out with baby and siblings in tow. They would step speechlessly before each day’s list, running their eyes up and down and, just to be sure, going over it once again. After the last list, Friday’s surgical schedule is short and filled with only minor cases not likely to be complicated, reality silently hits them. Some go back and reread. This is so important to them. They are so nervous, surely they missed something. Others wander off the hospital porch, the implications of “no” forming in their heads. Life will continue as it is, as they know it now: fearful, outcast, and filled with shame.

The simple sheets of paper posted to let patients know they've been selected for surgery.

The Philippines is known as a country of beauty pageants. I see signs tacked up on lampposts and electric poles advertising “Most Beautiful Girl” contests for various age groups. I pass store fronts filled with those lacy confectionery dresses little contestants or their proud mothers favor along with snowy white anklets, patent leather Mary Janes, and carefully engineered cascades of brown or black ringlets. This land prizes beauty. These people are quite beautiful: dark eyes, smooth skin, round faces, a mix of tropical island ancestry, Spanish colonists, and the proximity to the Orient.

To be turned away, told to go back into hiding when the opportunity for a normal life in both form and function is so tantalizingly near – to take up once again the burden, the weight of this solitary dividing factor keeping you or your child from school, from work, and from the day-to-day tide of life must be soul-killing. There is nothing for it. I thought I came prepared for this. I brought my good old American can-do attitude, that omnipotent spirit of making everything right, knowing what is good for everyone, the Mom-connected urge to make the bad stuff disappear. Turning these people away fills me with sickening frustration. There was nothing I could say or do to temper this brand of resigned grief. I handed out phone numbers, addresses of Op Smile contacts in Manila. I reminded them to keep in touch with the hospital and with the sisters who ran it. I looked into their eyes if they were willing to raise their heads. I squeezed their shoulder, their arm, their hand. I experienced the bitter sensation of powerlessness when they thanked me for what little I offered them.

I give myself up to sleep and wish for no dreams. There is no moon tonight, only thousands of stars I do not recognize. The door to the balcony is open and drifting through it I hear splashes and laughing in the pool as some of my teammates indulge in a midnight swim. I can smell flowers from the garden, a heady mixture of sweet, over-ripe fruit, and some unfamiliar, un-tasted spice. The slow, varying breeze is tinged with the sour compost odor of the open sewer outside our gate. In the distance, when there is a lull in the truck traffic on the highway, I hear the vocal ebb and flow, a chorus of voices rising from the cock-fighting coliseum. 

21 March 1999

I am in paradise. It is our day off, one rest and relaxation day before we enter the tight schedule of surgery week. We need it. All around my teammates are napping on lounge chairs, reading, or quietly chatting in the hot tub. That’s right, a hot tub. It is connected to a pool connected to another pool connected to two other pools at different levels by slides. Our in-country hosts delivered us to this resort this morning, a former coconut plantation in the southern region of Luzon, for a taste of Filipino hospitality and recreation. So far, I love it.

My team: We are a group now - a good one, I think. I surmise the success of Operation Smile missions depends on the smooth dynamic of each surgical team. John is a wonderful leader: patient, soft-spoken, a great sense of humor. He is concerned with everyone. You get the sense he loves his wife and kids. This work pays interest on his good fortune. John brought half of our team, another surgeon, surgical and pediatric nurses, pediatricians, and anesthesiologists, from the University of Iowa. The rest of us represent the world: Hungary, Salt Lake City, Wales, Norfolk, Seattle, Columbia, New York, and Australia. The accents are wonderful. All of us are trying to learn Tagalog from our translators and counterparts at the hospital, some with more success than others. Each morning in the van on the way to the hospital I corner Michael, a young dentist from a suburb of Manila, for language assistance. He gives me a different phrase to use every day. I repeat it over and over trying to get the stress on the correct syllables. I can’t keep much in my head. Two words I use often: “Salamat” – thank you, and “Mabuhay” – welcome. Veronica, a pediatric anesthesiologist from Budapest, is putting together a little cheat sheet of phrases to use over surgery week, an idea I should copy. I like one phrase she’s translated, “We’re going to mend your smile.”

In the last week this group pulled together, no interpersonal dramas, no whiners, no noses set out of joint. There are some characters. My roommate Izzy is one of them. She is a straight arrow who longs for a warm Cinnabon and her scuffed house slippers. In a short week we all find ourselves comfortable with each other. At breakfast this morning we were all laughing at one of the doctor’s deadpan imitation of our morning wake-up announcement. He was just repeating it to the people at his table, but soon he had the whole room giggling, “Good Morning Kalapayan Estate, Operation Smile, time to get up!”

I am not in Kansas anymore. This resort is a feast for the senses, filled with absurdity and luxury. We are surrounded by acres and acres of tall, evenly spaced palms forming a tangled roof over our heads, a regulated jungle. Is that an oxymoron? There is undergrowth when you get away from the beaten paths but nothing insurmountable. Light filtering through the concentrated growth in the canopy is the same light you find in a medieval cathedral: sifted and made reverent by glittering patterns of stained glass. I look up through the breeze-blown fronds and see a sky fractured into a moving checkerboard. The sun falls through in small intermittent beams, soft and almost green in a place where all I set my eyes on is green.

I nabbed one of the big lounge chairs and I’m anti-social. My headphones are on and I’m listening to Pat Metheny. Several others do the same. We all could use a little time to ourselves. There is much to write about, especially this surprising place. I must get some rest though. I will write till I can write no more and then a nap.

This place: We arrived this morning after an incredible 1 ½ hour, high-speed drive past dingy apartment complexes, jungles, a smoking volcano, some dirty-looking industry, and more and more plantations. There was one limited access highway, a highway - with actual signs. The toll booth operators took our money with one hand and clasped their machine guns in the other. The vans dropped us off at the entrance and we were issued two tickets, one for lunch and one for a water buffalo ride. They call the water buffaloes “caribous,” but they sure look like water buffaloes to me. We all headed off to the museum, figuring we’d get it over with before eating lunch and hitting the pool.

What a museum! The signs said it was created by the former plantation owner before the property was sold and developed into a resort. I loved it. If you cram together all the American side-of-the-road wonders you can think up: Indian trading posts, alligator wrestling attractions, meteor craters, and the world’s largest ball of tin foil, and jam them into one dimly lit, musty-smelling hall it would come close to this. I can’t remember all of it. There were shrunken heads, a Japanese sword collection, mounted butterflies and dusty taxidermy snakes, lizards, and warthog-like creatures, various carts and floats with stare-y eyed saintly effigies, Victorian costumes and military uniforms displayed on mannequins qualifying as antiques themselves, stacks of ancient pottery, the Lord’s Prayer written over and over again in microscopic print formed into a map of Australia, an assortment of jawbones, and a large collection of souvenirs from what must have been a memorable trip to Bermuda: beaded belts, painted ashtrays, embossed leather wallets, and a scrapbook of postcards. It was, well, very American to me – like Aunt Lizzy’s attic or the mother of all garage sales. We were steeped in unexpected kitsch and it was quite pleasant. Outside we wandered about a formal garden decorated with Japanese and American ordinance from World War II, a nice finishing touch.
On our way to the resort museum under a canopy of palms.

We hiked far through the palms to find our meal. There must be a name for the room created by the soft floor of the jungle and a muted canopy above. The giant trunks bow like the ribs of a whale. The roof is thick and luminous, as if it quarters another level of life. Again, I keep coming back to the light: long moving shafts filled with golden motes.

It was surprising when we handed in our ticket and were told to check any bags we didn't want to carry along with our shoes. Past the entrance turnstile we descended four flights of steep stairs alongside a massive waterfall. The last step was into the warm, churning water. Long tables and benches were fixed into the rock of the stream-bed from the foot of the falls downstream for 200 yards or so. The steep banks and the waterfall formed three sides of the open-air restaurant. A large, red-clothed buffet was set up for our group further downstream.
The restaurant in the river below the waterfalls.

I was a little squeamish at first. My imagination got to work on all those organisms, micro and otherwise, lurking about ready to nip at my ankles, burrow into a toenail, or invade my circulatory system with an unpronounceable and incurable rotting disease. But the bottom wasn't slippery at all. One of the servers assured us the stream-bed was scrub-brushed every night. Other patrons were eating and happily posing for photos in front of the silver curtain of the falls. I loaded up my plate with more of the amazing mangoes and papayas and pork wrapped in leaves, and, oh-yes-rice-again, then waded out and found a seat with my teammates, all of us knee deep in moving water. We grew accustomed to the tumbled roar of the falls in the background and broke the unbidden silence that somehow settled among us. A curious sense of relief or giddiness took hold. The river banks were planted with ferns, palmettos, and hibiscus. At waist level the banks were studded with giant South Sea clam shells into which some of the flowing water was diverted to make a series of smaller falls. Our servers explained, these were for washing up when we were finished.

Some Op Smile team members, including Karlene, Michael, and John, enjoying lunch at the restaurant below the falls. Notice the water flowing past the table.

I sat mesmerized when my meal was through. It was hard to leave. Coal black and bright red and iridescent blue birds kept swooping through the airspace just above our heads and darting about in the curving canopy above us. This is no Disney World or Great Adventure or any other kind of carefully packaged, predigested entertainment. I felt wonder in me – immersed in this world – roiling, rushing, buzzing around me and with me.

I am very tired. 

Later on 21 March 1999, Sunday night

We’re back, sunburned and happily tired from our day at the resort. It is awful but I never caught the name of the place. How crass! I’m used to this sort of thing being in my face all the time: precisely designed logos on the napkins and paper cups and coffee stirrers in trademarked colors, hum-able ditties over the airwaves. 

Our drivers brought us back to Cavite via a different route. Joy, our hostess, wanted us to taste some fresh coconut so she led all of the vans to a ramshackle open market at the side of a busy road. We piled out, smelling of sun block with our straw tourist hats and cameras hanging from our necks. She picked through a shoulder-high pile of fat green coconuts till she found a few to her liking. The peddler handed her a dodgy-looking machete and this tiny woman swung it through the air and whacked the end off of each nut like she did this every morning before breakfast. I didn't get a taste of the milk but managed to nab some of the meat – delicious, thick, and different. Not your tasteless Stop ‘n Shop $1.99 two-for-one, but sweet and warm and with a nose to it.

During this demonstration two little girls in ragged undershirts and no underpants peeked out from behind the ripped half-curtain dividing selling area from living space. Their eyes soaked up our group with unreserved curiosity and a dose of fear. I found my eyes running over their perfect faces, their perfect mouths. I am accustomed to defect I think, or fast grown jaded by my exposure to so much physical imperfection. I wonder at my reaction to their appearance. They seemed so beautiful to me. Their feet were so encrusted you couldn’t see skin. The smaller girl sucked on the two middle fingers of one hand, leaving two wet dark rings up close to her knuckles. A half-bald dog sprawled across the dirt floor.

While the team hung about waiting for tastes I stepped down the road a bit, checking out the fruits and vegetables for sale. I hardly recognized anything. Colors swam everywhere, dark orange and purple and smooth yellow and green/ I love papayas and mangoes and pineapples but there are many fruits and vegetables in this place I don’t recognize: eggplant-looking things that are almost blood red and thick, segmented roots covered with fine hair. I looked for the leaves they make “crispy leaves” with. Our food service at the hospital served this several times and they are good. Our server referred to them as crispy leaves as if they were as common as French fries. On the plate they retain their shape, delicately scalloped and dark green. Perhaps they are spinach or grape leaves.

One of the stands was guarded by an old woman with spectacular wrinkles. We engaged in one of those conversations I am starting to get used to: lots of hand gestures and smiling and inane nodding. There would be difficulty understanding her even if she spoke a little English. Her mouth was small and puckered inward from lack of teeth. Her face was thoughtful and expectant, as if understanding me was going to happen at any minute. She selected a round yellow-green fruit, sliced it up, and offered me a piece. I cautiously bit into the inside layer. It bloomed in my mouth like tart ginger, sweet and burning at the same time. She refused my money, so I thanked her as graciously as I could and was about to turn away when she pointed to me and blurted out, “Murphy Brown? Murphy Brown?” This is the second time I've been pegged as Murphy Brown in these travels. Us Caucasians all look alike.

We scrambled back into our vans and I promptly fell asleep on John-from-North-Carolina’s shoulder. One minute I was looking out the window at everything streaming by and the next I was waking up as the van took the final curves into the hospital driveway. I was mortified. He was a gentleman. He let me sleep for quite some time. I hope I wasn't snoring or talking. I blushed my redheaded blush. I hope my sunburn covered it up.  

The hospital stop was a final check on rooms and supplies and tomorrow’s patients. The schedule calls for tomorrow’s surgical candidates to check in the night before their surgery so we can monitor them for fevers and make sure they have nothing by mouth before their big day. Every single patient was there.

The sisters cleared out one floor of the hospital for us. There is a central nursing station and four big connected rooms. These are filled with rusting metal cots; some better than others, all with makeshift IV poles. So many surgical patients showed up, the sisters brought more beds from the maternity floor. Beds line each of the hallways and there are two along the wall across from the nursing station. Four barely functioning toilets serve all of these people.

Our group trailed through each room, some of us still in our bathing suits and sandals. The surgeons gathered around and discussed some of the lips and palates, the nurses checked in with the Filipino floor staff. The rest of us went around shaking hands, greeting excited scared parents and kids. There is no food service at the hospital and only one bed per patient. Whole families arrived with many of the designated patients. They will be there to run out and obtain food, participate in the nursing, and sleep all together on one narrow bed or the floor nearby.

I was gratified so many recognized me. I didn't have a translator with me but discovered there is usually someone who speaks at least a little English nearby. American TV can account for this. I fell into what is become my habit here: asking if anyone had any questions and handing out the answers, unless they are very specific, in a public way. There is a natural shyness in these people, almost a form of politeness, along with the frightened reticence that comes before surgery. Always their children are in their arms, against their side, within an arm’s length.

This is a position I am familiar with: the hours before a surgery are scary and without end. The foreign place, a hospital with strange sounds, smells, and people displaces you and makes you question what you are doing and imagine the worst. You head is filled with “what ifs” and “I should haves.” Your child is frightened and will pick up any fear she senses in you. It is almost impossible not to be afraid.

I liked this part though. Despite the unknown, the great imagined changes occurring tomorrow, these are the people we’re not saying no to. They all heard Yes! Tomorrow will be daunting and busy and cruel in the price of passing physical pain, but tomorrow we start seeing results. 

My sons are on my mind tonight. I am missing them and wishing all is well at home. I hope Josh is making out okay in school. As always, I worry about Trev taking his medication. I’m halfway around the world and I find myself willing him not to forget it. I must allow this child to grow up.   

There is so much I want to tell Josh and Trev now: the people here, the plants. Trev would be wild for the birds I've seen. How things are so different here and very much the same. How parents love their children. How children want to live. I have one week more. I know I will be busy, busier than last week in a more profound way. I’m not frightened of this surgery. These doctors are a responsible lot. They are meticulous and, despite the stark conditions, they are not about to take any crazy risks. I am hopeful. I look forward to this work. This is where I can get behind what the parents are feeling. This is where I can hold up the light for them, show them the way to the end of this tunnel. There is work to be done: relentless, heated, tiring, bloody, dirty work. What will come of it is worth every effort. I better get myself to sleep. Tomorrow: surgery.  

Tuesday, December 3, 2013

18 and 19 March 1999, The Philippines, Operation Smile

18 March 1999

The ride home, back to the estate where we are staying, is beautiful. Our keepers feel security is a big concern in our locale, so our travels are always by group and with escorts. The team keeps three vans constantly busy. They cart us to the Dr. Jose Rizal Hospital in the morning and relay us back at dusk. Most of us were released early this evening to attend a banquet in our honor given by a local politico and Operation Smile sponsor. I managed to remain alert enough to get some bearings of the surrounding area.

The hospital is in a walled compound. The stretch between hospital and the Kalapayan Estate teems with people and business and life. The ride is about ten miles, much of it on dirt roads with no stop signs, traffic lights, or street signs. During heavy traffic times there are traffic directors who stand valiantly in the major intersections, trying to direct the flow. I don’t see any posted speed limits. Our drivers go as fast as possible. There is much traffic and no apparent road rage. I’ve been in several situations that, had they occurred, say, near Exit 16 on the Interstate 95 corridor in Connecticut, tempers would ignite, most participants would give or receive the bird, and more dangerous driving would erupt. Disorder is rampant here but, despite the constant crush and confusion, there is a politeness of sorts.

There are trucks, some buses, a few cars, but mostly jeepneys and tricycles. Tricycles are motorized bicycles with sidecars. They serve as taxis. Most are slapdash affairs, dented, beat-up, and covered with road dust. They weave in and out of traffic with slapstick abandon and even bump up onto sidewalks in congested spots to get where they want to go.

Jeepneys are Filipino SUVs. I think they are some bastardized version of American military vehicles. About the size of a Chevy Suburban, there are two doors up front for driver and passenger, and an opening in the back with bench seats for paying riders to clamber in, pay the fare, and hold on. Most display signs and an array of lights across the top of the windshield alongside several long decorative horns. Shiny stainless steel is the embellishment of choice. There are babe-mobiles decorated with curvy silhouettes and holy-rollers plastered with bloody crosses. All of the jeepneys are named: “Saved by the Light,” “Sexy Cool,” “Purple Heart,” and “Hot Love.” They are the main form of local transportation. People grab hold of railings next to the back door and swing themselves in, then pass their fare from person to person up to the driver. I would love to get the chance to ride in one.    

A typical Jeepney

Our commute circuits by a mango plantation, a university hospital with a sign out front reading, “This is a No Smoke-Belching Area,” a technical school, a McDonald’s. Children walk along the roadside in crisp Catholic school uniforms – plaid jumpers, starched collars, handkerchiefs over mouths, arms linked with one another, book bags, and backpacks.

We pass rows and rows of corrugated-steel-topped shacks – open-sided, dirt-floored, with flickering blue TV lights visible in the advancing darkness. We pass a rice peddler, a coconut peddler with a large wide-bladed knife, a blind man by the side of the road. I see women with cloth bags and infants slung over their hips, thin men in sagging shorts with lit cigarettes dangling from their lips. I find myself searching through the faces in the crowd, waiting for people to turn around so I can see what they look like. There is such a mix here: Asian, Spanish, South Sea Island, and more.

A cock fighting stadium sits within walking distance of the Kalapayan Estate. It is the size of a bowling alley with open sides along the roof line. We get held up in traffic there and through the open windows I hear roars and bellows and whistles of derision. In a half-minute’s delay we vicariously experience the contest taking place inside.

We pass an open sewer and turn into the entryway of the estate.   

19 March 1999, first light

I am up early by some quirky rhythm my brain is adhering to. I’m still tired and could use more rest, but here I am, synapses popping away, my legs restless and ready to move. The dawn sun is slanting through our curtains and I’ve got at least a half hour before our gun-toting stewards announce over the speaker system in monotone English, “Good morning. Kalapayan Estate. Members of Operation Smile. Time to get up. Good morning. Kalapayan Estate . . .”

Okay, the Kalapayan Estate: an oasis, literally. We are holed up here in beauty and luxury, surrounded by barbed wire and armed guards. I prepared for Spartan. I brought rolls of toilet paper and antibacterial hand wash. I figured if I don’t find a shower, hell, no one else would be finding one either. Dorothy, a post-op nurse experienced in Op Smile missions, claims we are most lucky. I agree.

I share this room with two others: Karlene, the child life worker and Isabel – or Izzy as she likes it, one of the floor nurses. Each of us is assigned her own bed and closet. The room is more efficiency apartment than hotel room. There is a small kitchen area with no running water but a table and chairs with enough room to organize our papers and equipment. There is running water in the bathroom although we must request our hosts to turn on the hot water for us every evening. Floor-to-ceiling drapes cover the double sliding glass doors to our balcony. Yes – a balcony. From it I survey extensive gardens, a pool, fountain, and servants’ quarters.

I’m told Operation Smile was given the use of this facility by a wealthy trucking baron. He purchased the property for his wife to grow a garden and he constructed this apartment-style structure with accompanying penthouse as a venture to house business travelers.

His wife is an astonishing gardener. There are orchids trailing everywhere and different varieties of palms and pines and ginger and more I don’t recognize at all. There are seating arrangements and cabanas scattered throughout begging for a bestseller and a lazy afternoon. In the center of the compound is the Olympic-size pool. I’m not sure how big an Olympic-size pool is supposed to be. This one might be bigger. There are dramatic water features, night lighting, wide lap-lanes, and, in the far corner, an elevated man-made island suspended above the water on cement pillars. The structure has a roof and railings and a ramp across the water along with steps down into the water. Aside from some dispersed tables and chairs, every available patch capable of holding a bit of earth is lush with vegetation. Our team has fallen into a routine of meeting here after we all straggle back from the hospital.

We are pampered by the staff. They are more servant than chambermaid, a collection of eager teenage boys take care of our needs. Every night we return from the hospital and find our rooms immaculate and all of our possessions repositioned. Some of the team was concerned about this invasion. It is disconcerting. There is much worry about possible theft but nothing is established as missing as of yet. My belongings, I brought clothes and toiletries but took up the most luggage space with trinkets and stickers and toys to give away, are thoroughly rearranged each day but I’m not missing anything. The one change of earrings and bracelet I brought with me remains on the night table by my bed. The few valuables I carry, passport and money, are within my sight at all times so I’m not worried. I think they are curious and not wayward enough to hide it.

What I find most charming here are the geckos. As I lie in bed now I can spy two frozen in place on the ceiling. I shepherd them gently out of the shower each morning. I surprised one on the wall when I returned to the room last night. It darted off with electric speed. They all peacefully co-exist with the human population here. I suspect they offer pest control. I observe no alarm or significant reaction from the locals. One of my medical student translators at the hospital, Janine, tells me most homes consider it good fortune if a “house lizard” takes up residence with them. These, I think, are bigger – more substantial, than the finger-length green geckos dangling above my head right now.

My call. Time to start this day.

19 March 99, 6:05 PM

Back from the volcano, grimy and hot but not feeling as scattered as before. Yesterday and the day before were overwhelming, so much, too much. Today was better. I remembered to breathe. I maintained a handle on some things. There was solid interaction, beneficial exchange. I found a rhythm of sorts. Yesterday I found my pace but it was within so much chaos, so much action and sensory input, such a stream of faces and no bearings, no point of intuition about what I should say, what I could say, how they will handle and absorb it. Am I making sense here? Did I make sense there? I am not sure.

I know I worked as hard as I ever have in my life, incredibly hard and then harder. Quietly, patiently in the brutal midday sun, the families waited for a chance. I caught glimpses of the crowd out of the side window. The sisters who run the hospital distributed numbers so no one needed to stand in line but you could see the urgency, the reluctance to escape the heat even through flying dust and blazing pavement.

This is Leo and his Mom. See the worry and love on her face.

Our in-country host, an orthodontist from Manila named Joy, went from room to room begging us to continue despite the crowds, despite the impossibility of ever offering help to all these people. She broke down in tears in my room when I told her I would go on as long as my translators were willing and the doctors kept sending me patients.

I saw humanity flow before me, one face after another. Even now I don’t recall it in a continuous thread but flash after flash. Children, frightened and clutching their anxious mothers, babies with faces gaping open to the world, fathers wiping tears from dusty cheeks, toddlers with teeth splayed out – unable to talk but smiling, pointing to the sticker they want, looking straight through me with pearl brown eyes – haughty teenagers with Reeboks and Nike t-shirts, dirty feet, history in their eyes – a story I know just a little about: how they are toughened by their lives, how there was no protection. They all nod to me in understanding or speak as best they can, covering the ugliness of their mouth with the habit of their hand, their sotto voice.  

When I am through with my questions and explanations they say they understand. They have no questions. This is translated to me by Sheila or Romille or Pam, my translators for the day. I know these people have at least one burning question for which I don’t hold the answer: What is my future with you?

Today was better, much better, but draining in a way I don’t experience in my normal life. I will regroup and pull myself together for tomorrow. I worry so many will be turned away. The best outcome, the ages the surgeons prioritize for surgery, is somewhere from one-and-a-half- to four-years-old. If an open palate is closed this early, or if a lip is joined together, the prognosis, especially for speech, is a better one. The teenagers who moved past me today, many of them hidden from life, withheld from school, and kept by their families in shame, what is my future with them? 

Friday, November 22, 2013

16 and 17 March, 1999, Cavite, The Philippines

9:55 PM, 16 March 99, Kalapayan Estate

Exhaustion. Up this morning at 5:30 AM, cold shower, bus to hospital at 6 AM, breakfast, some announcements, a short effort to arrange some chairs in an airless room, then: families, patients, families, patients, one after another, after another, after another.

We passed them on the bus ride to the hospital this morning. They were camped out under the few trees in the courtyard of the hospital, holding rags to their faces against the dust. One after another, after another. Large families clutching a tiny infant or dark-eyed toddler, a preschooler in her ironed Sunday dress, school-uniformed elementary school students – elbows linked with older and younger siblings. The teenagers swaggered in, often alone, with baseball caps just so, a practiced attitude in their walks, a quick hand lifted to their mouth to hide an unrepaired cleft of the lip. If their palate is affected they are reluctant to speak and difficult to understand.

I use translators for the first time. I am assigned a group of first year medical students from the local university. They switch effortlessly from English to Tagalog and back. I remember from training to keep my eyes on the person I’m talking to. Tagalog is at once guttural and musical. There is a rhythm to it but I’m lost without any of the familiar cues of French or Spanish. I remember hello. I remember thank you. I don’t give out much good news. Every possible patient is funneled to me at the end of the screening process, after being poked and prodded and weighed and discussed. I review their files and make sure all the paperwork is there. Then I make sure they understand. In many cases the answer is no, clearly no: we can’t help you. Your case is too difficult, too complicated, your child is too sick, your baby has a fever, doesn’t weigh enough, is too young for the risk of surgery.

Operation Smile uses established parameters. For our safety and the safety of our patients, no child is offered surgery under a certain age or outside a prescribed state of health. We are a surgical mission with a beginning and an end. The odds of a safe, quick recovery must be in our favor. We must avoid complications. Despite the flow of humanity here, the pleading, the 12-hour bus rides with screaming infants, despite the evident, palpable desperation for a normal life, we say no.

Many show up with disorders we cannot treat. I meet a little boy, Miguel, with Apert’s Syndrome, a rare syndrome closely related to my son Trevor’s diagnosis, Crouzon’s Syndrome. Like Trevor, Miguel needs massive staged surgeries only available in Los Angeles, New York, Paris, and possibly Sydney. Suddenly I became an advocate, pulling Miguel’s file for an Australian surgeon who is briefly visiting our team to review possible teaching cases for the hospital he is affiliated with. “Rare” is interesting. Rare is a teaching opportunity. Rare might get little Miguel some help.

A local advertising poster created for our mission mistakenly included a photograph of a child with a large encephalocele. These are defects involving the protrusion of the brain through the skull (a crude layman’s description). They are different and dangerous to remove in the best of circumstances. Because of the poster, many children and adults with encephaloceles show up and, in each case, it is up to me to explain “no” to them. No, it is too dangerous. No, we can’t offer you help.

A father enters my room, his wife, cringing, a few steps behind him. This is his last stop in a long day of waiting through each rung of the screening process. They traveled four hours in the back of a jeepney, the local open-backed panel-truck-like public transportation. He holds his tiny daughter in the crook of his elbow. Her huge head, elongated by a cruel encephalocele, is cradled in a pillow. The growth is so enormous she can’t turn her head from side to side.

The screening doctors gave him the reality. I am thankful for this. I am hot and tired and my legs are sticking to the plastic chair and I don’t want to tell anyone else there is nothing we can do. The little girl is tiny and quiet. She doesn’t cry. She barely moves. Her father holds her carefully, tenderly. There is a shocked look in her round dark eyes. The hair on the side of her over-large head is lovingly brushed back. On her neck there is a tiny gold cross with a dark pearl at the center. I ask him the usual questions, the ones I repeat all day, the ones my savvy translators memorize and, I suspect, improve upon now that they understand why I am here. “What did the doctors tell you? Please repeat it to me. Do you understand? Do you have any other questions? Have you eaten? Do you have a place to stay, a way to get home? I’m so sorry we can’t help.”

I touch this father – put my hand on his shoulder, squeeze his arm. I touch his daughter; trace my finger through her silken hair, brush it up past her perfect ear. I show him a photo of my son. I look him in the eyes and ask the translator to tell him I think I know how much he loves his daughter.

17 March 1999, late

You keep on working. You do the job you remember how to do. The people astound you, alive in this heat like a wall up around your ears.

I make sure and look into everyone’s eyes. I know the words coming out of my mouth only make sense after they are processed through my translator so I try to connect with a direct gaze. If I can communicate concern, care, some form of understanding that I know it is scary, that we are here doing the best we can – is that success? Is it enough?

They file past. In my ordinary life I never encountered adults with unrepaired clefts. It just wouldn’t happen. It wouldn’t be found in the United States. The “cleft cases” I met there all were post-surgical, at least for the outwardly visible part, the lip, by the age of one or two months. Palate surgery, knitting together the roof of a mouth cleaved open to the sinuses above it, takes place before one year of age to avoid any roadblocks to language acquisition and speech development. Afterward there is the possibility of surgical fine-tuning and further consultations with speech pathologists and orthodontists. Cavite offers a parade of teenagers and young adults with hair carefully draped over a gaping mouth, hands practiced in the art of hiding themselves from view.

I sit with a chatty mother and her engaging toddler, Pilar. Her smooth dark hair is clipped back by yellow and blue butterfly clips matching her smocked dress. When Pilar gets fussy her mom plucks a bottle of milk from her bag, tilts her child’s head back and drips a steady stream of milk into the cleft just off the center of her face.

I meet people kept in the house, the closet; kids tied in the backyard, hidden for the length of their lives, children from the streets with thick lines of dirt on their necks and no school learning, no language, no voice because of their broken lips, the broken roofs of their mouths.

My throat hurts from talking. I hear myself repeat the same questions, say the same things. I hand out crumpled translations I brought with me from the US: help for school, for speech, help for nutrition, and help for what now feels like trite American self-importance: self-esteem. Sweat pours down my back and sticks my legs to my cotton skirt. My head feels starchy. Someone from the team walks in and shoves a water bottle onto my lap, “Drink! Are you drinking? You need more water.”

I take a drink and clear a little and nod and look into beautiful dark eyes, touch an arm, smile, squeeze a shoulder, chuck a small chin. I ask again and again, “Do you understand? Do you understand?”

Tuesday, November 19, 2013

14 March 1999, Operation Smile, The Philippines

I’m on my way. Blessed and cosseted and fussed over by family and friends, fretted over by Trev, and worried myself by the plague of health difficulties dogging me for the past few weeks. I am off. Somewhere over Canada, within 1000 miles of the Pole or so our pilot claims, I’m flying nonstop to Tokyo then on to Manila. Tomorrow night I meet the various players in the Operation Smile mission I will participate in. It is difficult to sit here, still, after all the preparation. I know I’ve not done enough. Imagining conditions and dynamics halfway around the world is just that: imagination.

As a last minute stand-in, I scrambled to get ready, to gird my loins as my friend Bonnie would term it. The hurry and the planning of the past few weeks make me, not complacent in attitude, but anxious to fly – to experience the experience. I know part of the get-ready work is to be open to it, to expect the surprise, and welcome it. I feel it now with attendant butterflies. All of the tired clich├ęs apply: roll with the punches, make lemonade when life serves up lemons, etc. This is the element of my mission I am ready for even if I can’t remember all the medical jargon and the few phrases of Tagalog I’ve drilled into my thick skull. I know how to take the unknown part, the shock-part not in the itinerary or listed in the mission plan. I know what it is like when chance throws a big punch, a baby you don’t recognize. I carry this with me and hope to gently testify. I intend to work hard. I expect to learn. Terri, the speech pathologist who served on last year’s mission to Cavite, the location where I will be working, told me she wanted to give but came away with much more. And so: I travel to the Philippines with a somewhat selfish design and, I hope, not too many illusions.

On this note I christen this particular travel journal of mine: a record of learning and reflection for the next few weeks. I anticipate the visitation of memories, a testing of whatever mettle exists within me. I wish to spin my cognitive wheels a few times and churn out observations as best I can for further examination.

(Later) 14 March 1999 Over the Pacific

My life carried me here, a fourteen-hour flight from New York to Tokyo, in a circuitous fashion. I serve as the representative mother on my mission team, because I am the mother of a special child. I am here because I am divorced. That bitter parting spurs me to grow, push my limits, and force myself outside the safety net. I’m here for the curiosity, adventure, and the goody-two-shoes factor. My pain can be put to use: to help soften someone else’s. What a waste if it were just that, left as pain: lonely nights in fluorescent-lit children’s hospital wards, anxious hours and days spent picking through medical texts, talking to other families, quizzing doctors and surgeons. I am an expert, an expert on Trevor only, but still an expert. During my accumulation of knowledge I didn’t dream it could be extrapolated into something worth offering to others. In many ways it confounds me now. It’s difficult to see the road here through the pain and the blame, self-doubt, horror, and sometimes terror.

I must do this. It would be wrong for me not to. I recognize the element of selfishness. I make this journey for myself. To face it again. To face it down. 

9:42 AM, 15 March 1999, Manila, Philippines

I checked into the hotel last night after a crowded flight from Tokyo, so crowded it seemed people were sitting on each other’s laps. I was lucky to sit next to John, my team leader for the Cavite mission. We were both tired and there was a high noise level but I did get to pick his brains a bit and try to clarify for him my anticipated role in the surgical mission. I liked him, a laidback Midwesterner, calm and intelligent but approachable in a way many surgeons in my experience are not. He seems glad for every support he can get and agrees there is a need for patient and family education, the role I hope to fill on this trip. I drew a bit of confidence from his endorsement. This is his fifth mission to the Philippines, second as a team leader, and first mission to this site, Cavite. He said our mission will be the second of the usual series of five Op Smile makes to a particular hospital/location. They try to address the initial crush of unrepaired cleft lips and palates in a given district and, at the same time, educate and train the local surgeons. After five yearly visits the goal is to leave a mission site self-sufficient enough to care for arising cleft cases and the referral of more difficult diagnoses. The Cavite team is one of five traveling to different parts of the Philippines at the same time. Our team will be closest to Manila, an urban site on the same island, Luzon.

Last night - really early this morning, I think it was around 2 AM local time, all of the teams convened in the banquet hall of our hotel. We picked up our IDs, itineraries, and other paperwork, listened to an abbreviated speech from the exhausted Op Smile Philippines coordinator, drank orange juice, and ate pieces of what tasted like angel food cupcakes and, after chatting it up with old friends and new acquaintances, dispersed to our room assignments. I managed to meet briefly with the only other Family/Patient Educator, Joe from Chicago. He is enthusiastic and full of concrete plans for each stage of his assigned mission. Unlike me, he’s had months to prepare and plan what he will do. Since I was asked to attend less than a month ago, filling in for someone with a family emergency, I am feeling rather unprepared next to his list of intended activities and suitcase full of supplies. My guess is I bolstered his confidence a bit.

I would call Joe a young adult. He was a participant in my Colorado training, though I didn’t get to know him well at the time. Joe has a cleft lip and possibly a cleft palate, although it is hard to tell. His speech is flawless and the surgical repair on his lip, to my experienced parent’s eye, is excellent. He is a handsome young man who I can’t help but admire: strong drive and a clear intent to spread and share the strength he’s gained from personal experience. I wish him well.

Joe made me wonder if I match his enthusiasm. It was clear to me during our training in Colorado the two groups selected to serve as trained Family/Patient Educators, affected adults (most in their mid to late twenties) and parents of affected children, held different perspectives on “appearance differences.” Clearly, the people bothered most by the grueling, in-your-face, reality-time training were the parents. Affected adults seemed to recognize the anticipated grizzly aspects of the experience and take it in thoughtful stride. I wonder, I know, this will affect our respective approaches and attitudes on these missions. Joe may, or may not, experience difficulty relating to the parents here. On the other hand, he’ll know exactly where the patients are coming from. I am only a parent who experiences “looking different” vicariously through my child. I am lucky to have a socially acceptable visage, to pass for “normal” at all times. Will it work against me in this setting? I will soon find out.

Time is topsy-turvy. Last night, after exchanging several sentences with my roommate Karlene, who is also on the Cavite team, I slept the sleep of the dead. Waking up was like starting to breathe again, abrupt gulping, gasping, and sputtering. I am dutifully watching my water intake, only bottled – even for brushing my teeth. I lost my camera. I think I parted with it when I went to the lobby early this morning to see Joe off on his flight to the southern city of Davao. Did I leave it in my chair when they called his bus? Oh well, my visuals must come from writing. So far dawn brilliantly lights a waking Manila, a lush, tropical, and very metropolitan place. The smell here is of hot tarmac and coconuts, and the clinging tobacco smoke of old hotel drapes. I haven’t met any natives that have trouble understanding me. We are warned to stay near the hotel in case of schedule changes. Flying in last night we crossed miles and miles of lighted civilization. Beyond this eighth floor window there is sprawling urban development. However remote I am from Connecticut and the tri-state center of the universe, there is an abundance of life here: heated, tropical, crowded, and dissonant.     

I must bring my bags downstairs. The bus leaves for Cavite in 20 minutes. We settle in to our living quarters tonight. Tomorrow we start a week of screening patients for surgery next week. Work begins.

Tuesday, November 12, 2013

The Uses of Pretend, Circa 1987

“Mom! Josh won’t leave me alone!”

“Josh, leave your brother alone.”

“Mom! Josh called me barf breath!”

“Josh, don’t call your brother barf breath.”

“Mom! Josh poked me!”

“Josh! Get away from your brother now . . .”

The boys were cranked up from cake and ice cream and too many toys. I was exhausted from cake, ice cream, party managing, and too many toys. It was the perfect time for sibling rivalry to rear its ugly head.

The deck was littered with squashed boxes and ripped paper. Tables and chairs were strewn with sticky paper plates and napkins. Only the yard remained birthday party-ready. I rented a large helium tank, far larger than I expected, and so, generously tied bunches of balloons to every shrub and branch I could reach. They floated above the green early-summer grass like monstrous bouquets.

Josh put his younger brother in a head lock. He was intent on strangling the recipient of all the attention.

“Josh, go and gather all the balloons from the yard. If you can get them all tied together you can keep them. Trev, go inside and wash your face. You are helping me clean up this mess.”

That was the day Josh invented sky fishing. He grabbed his fishing pole to use some of the test line for tying the balloons together. The rest, as they say, is history.

I looked out in the yard after Trev and I finished stuffing the garbage bags. Josh was flat on his back in the center of the yard. He was holding the fishing pole and feeding out line into the sky. I craned my neck out and leaned over the railing, not clear about what the line was attached to. On the sidewalk in the front of the house I saw our elderly neighbor George walking his dog and tilting his head back. He was shading his eyes in order to get a better look at something in the sky. I walked down the steps and looked up. A large bunch of balloons was sailing eastward above the tree tops.

I ran into the house and grabbed an old picnic blanket. When we joined Josh on the grass, the balloons were suspended above the house next door and heading for the park. The current in the higher elevations became turbulent. Josh struggled a bit to handle his “catch.” By now the balloons were colorful spinning dots in the distance.  We talked of clouds and migrating birds and prevailing winds.

The remainder of the afternoon was spent in various balloon experiments. Josh and his Dad figured out how to lift small water balloons and release them to bomb our side yard and garden. Then his GI Joe paratrooper action figure came out. It was fun to see him gliding confidently down with parachute billowing brightly behind him. After I got Trev off to bed that evening, we went back outside again, added a few Mylar balloons to the bunch, affixed a small pen-light and, giggling in our collusion, perpetrated our own UFO hoax on the neighborhood.

Later in the summer, we put together a party for Josh’s birthday. The guests arrived combed and cleaned and ready for musical chairs and pin-the-tail-on-the-donkey. Instead they went sky-fishing. When their parents returned, they found their children resting on scattered blankets and angling big bunches of balloons in the airspace above our house.

When Trev was four years old he wanted to be He-man, Master of the Universe, for Halloween. It was six weeks after a surgery that left his jaws wired shut. Despite my most creative efforts pulverizing cheeseburgers and spaghetti with my blender, he was emaciated from the required liquid diet. His sunken eyes and bony knees gave me little to work with in the creation of a beefy blonde warrior.

I made a yellow yarn wig, no problem. I picked my way through the rest. I decided to put together a new body for him. I took a set of white sweats and dyed them to a pale flesh tone, then lined them in the appropriate places with cotton batting, making beefy arm and leg muscles. Using my rudimentary sewing skills I managed to quilt He-man’s signature washboard chest.

Trev couldn’t wait to try on the muscle suit. We added a skimpy pair of red shorts and makeshift studded armbands and he became He-man: the Super Hero who spent his spare time catching meteors and plugging erupting volcanoes. My sister contributed a blue satin cape and He-man learned to fly. He practiced every afternoon from the third step.

Long after Halloween passed, after Trev’s jaws were unwired and he ate through his Halloween cache of Milky Ways and Reese’s Peanut Butter Cups, He-man would make sudden appearances at our dinner table. I found him vainly flexing his muscles in front of my bedroom mirror. I looked out the kitchen window and saw him playing with the kids next door. Often, I tucked him snugly into the bunk bed above Josh.

Most of the time now Harry just sits on Trevor’s bed. Like Josh’s over-sized Garfield doll and worn stuffed bunny, he guards my children’s dreams. Harry is big, about the size of a three-year-old. There are corduroy horns on his head, plastic bug-eyes, and a bulbous, warted green nose. His body is covered with shaggy blue fur. His mouth is set in a permanent leer. Run your fingers through his fur and you’ll find it punctured from numerous IVs, blood tests, and catheterizations. He’s withstood more rectal temperature takings than anyone I know.

Harry is Trevor’s personal monster. When Harry first appeared in our home, under the Christmas tree with a large bow attached, Trev was a little afraid of him. He soon discovered Harry was afraid of the dark, the dog, and even the cellar stairs. Trev helped him. After all, a monster can’t live his life in fear.

“Don’t worry,” Trev told him, “I’ll show you how not to be ‘fraid.”

And he did. Trev would get a shot, turn to Harry and say, “Now hold still. This will only hurt for a second.” Harry cried and fussed but he never got away.

“You have to have it Harry, if you want to get better.” Trev was patient but unrelenting. Blood pressure cuffs, stethoscopes, and urinal bottles were explained again and again to the forgetful Harry. He’s been taped and bandaged and oxygen-masked. Trev generously shared his IV pole with him on many occasions.

Over the years many doctors examined Harry, listened to his heart and peered into his blue-haired ears, and pronounced him a difficult case. Harry is a lucky monster. With Trev’s help, he has survived.

Trev was strapped into a bed in the Pediatric Intensive Care Unit. Between the IV lines and drainage tubes, I held his hand. I sat in a metal fold-up chair pushed close to the bedside and rested my chin on the chrome railing. The whoosh and suck of the ventilators beat slowly in the background. I whispered stories to him.

They were outlandish tales. Tales I loved, starring Trev and, his brother Josh, with their pretend names of Hong Kong Heart-out and Ryu. They were bold knights searching in dim caves for a key to an invisible castle, or space adventurers planet-hopping to battle menacing aliens. Ryu chased dreams and demons across wide blue skies. Hong Kong Heart-out flexed his biceps and befriended tormented ogres and threatening trolls. They rescued worlds, saved us all from destruction, and then came home to finish their homework and eat macaroni and cheese for dinner. 

Thursday, November 7, 2013

7 March 2013, Introduction to The Uses of Pretend

7 March 2013

I am rewriting a series of vignettes about Trevor and Josh. These slices of my life are from an earlier time. They were gathering dust in a blue three-ring binder at the bottom of a box of old papers. I came close to recycling the whole shebang without examining the contents. These short histories emerged from my past and into the light like a time capsule, something I wrote long ago in a mindset I am now wholly unfamiliar with. Was it me?

The voice I used to tell the tales is oddly squeaky, oddly Pollyanna-ish. I think the original intent for the snapshot writing was as a contribution to a support newsletter for parents like me, parents of children born with a craniofacial disorder. I wrote them during a midstream period of parenting when Cub Scouts and spelling tests demanded my attention along with weekly visits to the doctor and developing a network of people I could call when I suddenly needed to stay overnight at the hospital. Life with a child impacted by complex medical needs included a surgical team, hospital stays, and many other health-related necessities. The stories are entitled, “The Uses of Pretend.”

I am struggling to tighten them up. I feel like shaking the writer of these tales, grabbing her by the shoulders and slapping her. Was I so upbeat? Was I that person? Me? Or was it artifice? “Oh fa-la, my kid is in the hospital again, not to worry: I am super mom.” Here’s the deal: I wasn’t. Maybe I fancied myself as super mom in a Walter-Mitty-alter-ego way but when my kids were making their way through elementary school, my present-day memory tells me I was a rumpled wallflower. Yes, I was deeply involved in my children’s education but I was far removed from the belle of the PTA mommy ball. I was the tired bifocal-wearing, scruffy-jeaned, and un-styled-hair-type mom driving the old Volvo station wagon with a barking beagle in the back. My writing dreams were only that then: dreams. I kept my journals hidden and secret and filled them with grousing and longing and, yes, my own brand of pretend.

My tone in the newly discovered pieces – written to share - is, by and large, upbeat, reassuring, and steadfast. At least this is what it sounds like to me today. When I first came across them I thought I’d somehow find a place for them in my current major project – wait, spell it like it is, all caps: MAJOR PROJECT. This project, currently absorbing the majority of my writing time, purports to chronicle my life, my growing years – a memoir drawn from my journals. I sit down to transcribe the new stories and find myself not recognizing myself. Was I that person? Gooey? Sappy? It was a long time ago. My writing chops were undeveloped. This is certain. I wasn't crafting and playing with words, fashioning them to my own ends.

It is the nature of this early writing I find a little frightening. Part of it is not acknowledging, during the darkest hours, that I was caught in a dark vortex: scary parenthood coupled with marriage to the wrong person. That should be in all caps, too. I wouldn't and didn't share the struggle with any of the other players in my life then, the teachers, doctors, and other mothers populating my life. Did they know? No matter: I pretended. I was pretending. The title “The Uses of Pretend” colludes with that notion. I keep on looking behind these little stories – these brief snippets from the whirl of my life back then, thinking about the shadows, the unstated, and the barely mentioned.

Was I writing myself out of my life? Was I creating something to hide under? My first reaction to these simple, declarative narratives is: this isn't me at all. Where am I in this picture?

I look through the lens of intervening years, knowing the tough times ahead for the optimistic mom, den mother, cupcake chef, and vacuum-er of Legos. My old journals are so constantly a part of my life these days. I work daily to transcribe the labored writings of a person worried about the future and worn from the constant duties of parenthood, the duplicities of a fractured marriage. Perhaps my diaries, the ones forming the arch of my story project, don’t tell me everything.

Truth be told: I never nurtured a dream of motherhood. I never featured myself in a fuzzy golden light swaddling a fussy baby, coaxing mushy carrots into a toddler, or quizzing a third grader on all the state capitols. My youthful aspirations focused on traveling the world, exploring cultures, art, language, theater, music – and writing. Getting pregnant changed everything, although, when it came along, I embraced motherhood. I was surprised by my babies and intrigued. I fell in love with them. Helping children to grow, guiding them, was a big adventure, far more than anticipated in some ways.

Still, I scratched away at my journals, late at night or early in the morning before the alarm sent me to the kitchen to pack lunch boxes. The upbeat mother who wrote glowingly of pretending to fish in the sky and making up stories with my children as the conquering heroes wrote also of longing, fear, and unhappiness. She never let anyone read the dark stories.

All the writing, all the college-ruled notebooks I filled over the years, comes together now.  I unearth each sentence and, like an archaeologist dust off the person buried there. Considering it again after a period of brooding, I am glad I was hopeful and engaged. I put on my happy face. I am glad I was writing articles to be read by others and writing in privacy to console myself. It made all the difference. The time capsule holds surprises: a repressed version of me, someone I hardly recognize, perpetrating a cheerful ruse on those around her. From a long-ago scary place I wrote my way forward, through the difficult years and into the present as a more confident, clear-eyed writer.  Gradually, imperceptibly, my two writing personas merged. Now I emerge, as ever gathering my courage as I strike out, word by word, sentence by sentence. Writing to save myself, writing to make sense of my world, writing to live my dream.

Tuesday, October 22, 2013

9 December 1983

The darkness I pushed away, the black fear walking at the edge of my consciousness, is here with me to stay.

They stuffed these words into my head: deformity, orbits, birth defect, genetics, coronal sutures, surgery, staged surgery, reconstruction. What is there to reconstruct? I failed at the construction. I was worried about his breathing. I kept asking about it. I worry it might stop. I listen to him breathe all night long. How am I to understand this?

They are sending us to Boston next week, to a doctor - the doctor who wrote “the book.” They showed me this book while we were in Norwalk Hospital. A photograph in it looked like Trevor: his exposed eyes, the beak nose. Did I do this to him? Was it me? The genetics people asked me so many questions: my family, my health, the pregnancy. They counted my fingers, asked me to take my shoes off and examined my toes. No one told me what happened to Trevor. They told me what he has, what he is now: a diagnosis, Crouzon Syndrome. They told me he needs plastic surgery, again and again – like an accident victim, like a socialite.

He is so sick so often. I am tired. My Mom cried. I can’t remember ever seeing her cry.

The night Trev was born six months ago, I was so happy to have another boy. I was afraid I wouldn't be good at a girl – such a silly thing to be afraid of.  Alone with Trev in the hospital room, I was excited, so confident, looking forward to the wonder of watching him grow. My thoughts were: I've done this before, I know what to do. I peered at his serious eyes, the odd shape of his forehead, and considered how he didn't look like any of us – no family resemblance. He looked like a wise old man. 

Monday, October 7, 2013

18 & 20 April 2011

18 April 2011, 2:41 PM

Now into the fifth hour of trying to find summer, fall, and life options for Trevor. He is home from school and we are attempting to work together. It’s not easy. I am impatient. The medicated slowness with which Trev approaches the various tasks and research involved in tracking down programs, registering at websites, and making decisions about what interests him and what does not is a lesson for me. Right now I've decided I need some fresh air. I’m off for a fast walk at Mine Hill Preserve. I will drag Trev along and we can air out our brains to prepare for a few more hours of work before dinner time.

Progress? Not much.

20 April 2011, 1:33 PM

Back at my desk. Trev went back to Worcester this morning to pick up his prescriptions. Due to the health insurance restrictions, he couldn't renew them before he returned home last week. Grrrrrrr.

I’m glad for the respite though. We were experiencing communication frustrations and falling into our usual roles. My role: lecturer, enforcer, voice of doom, efficiency expert, organizer, encourager, impatient conscience-like guilt-inducer. Trevor’s role: calm voice, guilt-wracked graduate, fiercely independent/shamefacedly dependent, nervous son, environmental expert, musician, dog-petter, person with several handicaps that serve to bollix up access to resources and manipulation of complicated and often arcane online job/school application processes. We dance this dance and our actions bounce off of each other in an oil-and-water way. An eavesdropper might think we’re fighting and, sometimes, this is the case. I’ve got the voice, the tone you would read disapproval into, the demanding accusatory-sounding one. I think I developed it as a young mother giving my kids instructions on how to clean their room. It’s the listen-up-good voice, the only-way-method voice, the I’m-in-charge-here voice.

Read another way: I fall back onto old habits perpetuating a mother/son dynamic we should have stepped away from years ago.  I know I should step back. How? Trev will fall into depression, move home, and play blues guitar in his room for perpetuity if I don’t, ahem, help him. He’s got a bachelor’s degree and a master’s degree. He’s smart. But he can’t see or drive and needs to take seizure meds that make him operate as if he’s under water.  He is often alone. He’s experienced depression to the point of suicide. His absent father is non-participatory and functions more as a sibling than a parent. Friendship – a physical circle of nearby friends who know, understand, and offer support – eludes him. Many people ignore or take advantage of him. I can’t just stand by. I am compelled – hard-wired, to help.

This is a frustrated parent thing. I’m supposed to know what is right – the right path for my child. I sort of do: Trev gets an education, a job, and contributes back to society. Along the way friends and relationships develop. Trev grows apart from me and develops his own life. I fade from parent to advisor to cheerleader to doting and doddering grandparent. Fading hasn't occurred to the extent it should. I know this. I want to let go. Trev wants me to let go. It’s the right thing to do, but it’s also the wrong thing to do.  We’re back to what I’m supposed to know: the right path. Truth is I don’t know it. I can’t find it. I’m exhausted looking for it. There are very few highly-educated, fully employed blind people. A lot of them have a spouse serving as life guide and manager/supporter/helper. What is the secret to getting there? How do we get these particular planets to align? This is my heartache. This is my fervent wish.