In his first few years he was a typical child, he grew, walked, talked and was happy. At about the age of three, he began to exhibit odd behaviours, perseverating, not understanding the sequences of everyday life, and odd tantrums. This is when our odyssey with the medical services started. At five years old he was diagnosed with Lennox Gastaut syndrome a rare seizure disorder (estimates range from one to ten in 100,000 children). Typically the onset is at about three years old with many seizures of multiple types, which are resistant to medication, leading to cognitive deficits and intellectual disabilities.

As he grew the symptoms of the diagnosis became all too apparent. The doctors prescribed multiple regimens of medication and the ketogenic diet. None had any lasting effect. He was hospitalized several times due to uncontrolled seizures and head injuries resulting from falls. He struggled in school, despite a full-time teaching assistant. He never learned to read, although he loved books, being read to, and watching Disney, Star Trek and Tin Tin movies. Despite all this he was generally happy and loving. He enjoyed playing simple computer games, being with friends, and watching them play.

He died very suddenly, 24th April 2007 when he was 16, after a night of seizures.

To commemorate his life we are setting up a fund within the LeRoi Foundation primarily, to help others with special needs as well as other areas of need. We were very blessed to have had James in our lives. We thank all the wonderful caregivers and all the institutions (KBRH, BC Children’s Hospital, Trail Association for Community Living, Community Living BC, School District 20, and many more) that provided support for him throughout his short life.

Word of the Day; Copil

Copil, copilă: child

January 26th 1991 Pitești, Romania.

Today I will get custody of my son, if all goes according to plan. I have learned this is uncommon, here in Romania. I arrived on January first, spent the first ten days finding a child and since then dealing with the documents and officials to enable me to bring my son home. Finally, yesterday I went to court, with my interpreter, Viorel. All our documents were presented and a judge issued a piece of paper that gives me legal custody of Elvis Gheorges, my son.

Today I will become a mother. After ten years of infertility treatments, of heartbreak and disappointments, my husband and I will have a child. Last night after a three hour wait for an international phone line, I spoke to him and I was able to tell him the good news. I had so much to explain and was almost incoherent with excitement. He had to remind me that it is not yet finished; not until I bring the baby home to Canada. He was unable to come with me as his work would not allow him the necessary time off so he has been waiting and worrying at home, three thousand miles away in British Columbia, while I have been in this alien environment wishing him here. His rational scientific reasoning would have calmed my anxiety. In 15 years of marriage we have not been apart this long. I have lost count of the times I cried myself to sleep. I am glad I could not get a line out the day I was told we would have to wait six weeks for a court date. Viorel was able to resolve this and all I had to show for it was two more bitten finger nails. I doubt my hands will be very pretty by the time I get home.

Today the words I have chosen are child: Copil masculine or Copilă feminine and păpuşă, doll. I have had mixed success with previous days’ words, although I can say buna diminață for good morning and mulțsumesc for thank you. I thought that if I chose two words each day, I would build up a vocabulary and be able to understand the language, but I still struggle and frequently misunderstand what’s been said. Yesterday my words were cameră meaning room, and casă meaning house or home. I must practice those as well as the new ones. I am surprised I have not chosen “child” before this.

I sit down to breakfast. Pete, a fellow Canadian, who is also adopting a child (copilă), is seated drinking coffee. We had a celebration last night with copious amounts of wine, beer and whisky. He and Viorel were still drinking when I went to bed.

“How are you feeling?” I ask.

“I’ve been better,” he says. Ana, Viorel’s mother, mama, enters with a cup of tea for me.

“Buna diminață, Mic dejune?” she asks

“Mulțsumesc, Mic dejune.” I reply. She smiles at my use of the Romanian word for breakfast. She returns ten minutes later with the daily black bread, (pîine) toasted and a boiled egg. Ana and Ion, Viorel’s parents, have a large apartment here in Piteşti. Viorel organized for us to stay here for the last week leading up to the court date. Lenuța, Pete’s just adopted child, (copilă), and Elvis Gheorges, were born in this region. We went to court here, gaining custody of the two children, yesterday.

“Good morning, good morning.” Viorel enters looking none the worse for the drinking. He hugs his mother. He is gangly and over six feet tall, while his mother is barely over five feet. He is wearing his habitual leather pants and jacket and sits down as his mother brings him his usual thick, black coffee.

“I have been thinking that we have to do things differently today. We have to split up again,” he says and I groan. The inevitable change of plan.

“Don’t worry, it is not so bad. I will take Pete to the orphanage where Lenuța is. My parents will take you, first to get a new birth certificate and then to the hospital in Cîmpulung.”

“But how will we manage? What if something goes wrong? Or I misunderstand again” I say. “Your parents don’t speak English.”

I am remembering the discussion with Elvis Gheorges’ birth mother where they gave her money; I was convinced they had given her too much. I wanted them to wait until the court date, imagined her disappearing before then. I spent hours pacing my room waiting for Viorel to return. I cursed him, wanted to smash something, and I wanted to give up and go home. I cried myself to sleep. When he returned, the following day, he explained that they had only given her part of the amount and promised the rest for after she appeared in court.

“What French?” I protest. I have a few words in English high school French and Ana, even fewer, in Romanian school French.

“Don’t worry. My mother will look after you. Trust her. You will do fine” Ana smiles at me, saying something I do not understand. It seems we are going.

Ana asks me a question. Viorel translates, “Do you have what you need for the baby? My mother wants to see what you have. Let her help you.”

We go to my room and I lay out on the narrow bed the clothes I have brought from Canada; sleepers and vests in various sizes and colours, socks, jackets, a baby blanket, a changing mat, baby wipes and disposable diapers in two sizes, newborn and the next size up, formula, bottles, and a dark green snuggli. I did not know how big a baby I would adopt. Even now, I only know that Elvis Gheorges was eight and a half pounds at birth and, is thriving at seven weeks old.

Ana picks up each item and eyes it critically. She discards the thinnest sleepers and the larger ones and indicates which to bring with us. She marvels over the disposable diapers. She has never seen such things. She tells Viorel that his wife, Angela, would have loved these. They have a son, Costin, who is three years old. Viorel explains that when Costin was born they lived in an apartment in Bucharest where there was only hot water for half an hour a day and sometimes not even that. Washing all the cloth diapers was very difficult. He wrinkles his nose at the memory.

They have never seen a snuggli. I demonstrate how to use it. I have only tried it once myself so I am slow and clumsy. This is good practice. Under Ana’s supervision I pack my bag. I wonder if I have everything I will need but Ana seems satisfied. I add my camera and my crocheting as something to do during the inevitable wait. I take a deep breath and pick up the bag. I am ready to get my child, my copil.

It snowed in the night, zăpadă; one of my first words. The crowded streets of Pitesti are even more congested than usual. A couple of vehicles have slid off the road. There are no snow ploughs and snow seems to be piled at random. Drivers swing out around these piles, often into oncoming traffic. One minute we are driving on good tarmac and then it is cobblestones bumping us around. Big holes in the road have to be avoided too. I avert my eyes several times as we pass other vehicles by a hair’s breadth. There are no seat belts in the car and I wonder how I will manage when I have a child in my arms. When we come to park, almost anywhere is permissible. Some cars just park in the middle of the road. I breathe a sigh as Ion slides into a space beside a pile of snow bigger than his car. It is just behind the courthouse. We walk through the snow to the entrance.

I am told getting a new birth certificate issued will take 10 minutes. It is half an hour past noon and we do not leave until almost two. A woman sits behind an imposing desk. She has glasses perched on her nose and bright pink lipstick. Her short, steel grey hair is elaborately curled. We approach and Ana starts talking to her. She is busy and tells us to wait just outside her door. I pace up and down the corridor until Ana pulls on my arm with a frown and indicates the chairs. I sit next to Ana in a red plush chair while the clerk painstakingly writes something. I get out my crocheting. I start to make a fourth cotton bib for my child. I have completed four rows when the woman calls us in. Ana gives her the original birth certificate and the custody papers, explaining what we need; she also gives her lipstick. The woman barely acknowledges this “cadou”. I learnt the word for gift quite soon after arriving. I am still not altogether comfortable with this aspect of Romanian officialdom. Everyone we encounter needs something; lipstick, or pantyhose for the women, a bottle of whiskey or Kent cigarettes for the men. I have become good at hiding my discomfort for some of their customs. I remind myself that this may not be the Canadian way, but it is their way. I must respect it.

The clerk scrutinizes the documents and asks some questions. She gets out the relevant form and starts to fill it out. She stops and asks another question. She mentions Canada and then Fruitvale, the small community where I live in British Columbia. Ana replies. The woman shakes her head pointing to the document. The woman shows me our address on the last page of the custody agreement. Canada is written first, followed by Fruitvale. It seems the clerk thinks Canada is a village and Fruitvale the country because it is written the wrong way round. Ana explains it is a mistake and the clerk shakes her head. She can only write what is on the document. Ana starts to talk faster, repeating Fruitvale, sat. I recognize this as the word for village. I want to shake this woman who is arguing that Canada is a village. I must be missing something. Later, I am surprised to learn from Viorel that I understood it just fine. Finally the birth certificate is rewritten and the old one cancelled. The original says he was born in Cîmpulung, Arges province, Romania, but the new document reads; Elvis-Gheorges, born December 9th 1990 in Fruitvale, BC, Canada, the village he will go to live in as part of our family.

We leave the court house and drive from Pitesti, a city of 100 thousand people to Cîmpulung a town a tenth the size. The roads become narrower. We pass cars slid off the road and slow down behind donkey carts. These seem better transportation in the snow.

After 20 minutes we arrive at the hospital in Cîmpulung. Ion lets us out and zooms off with a wave of his hand; he will return for us in an hour. Ana smiles and takes my hand. She is plump and shorter than I wearing a bulky rabbit fur coat in brown and white with a matching hat. She adjusts the scarf around my neck. I left mine on a bench at Frankfurt Airport, on my way here. She gave me this one ten days ago. I was about to venture out without one in the cold and snow. It is a fine, square, cream, woolen scarf with a traditional flower pattern, printed in green and red. I touch the scarf and smile back hoping it will make me feel less anxious. We do a lot of smiling.

The hospital is a square dark grey, brick building with narrow vertical windows. It is menacing in the gloomy overcast weather and looks like a prison. My knuckles are white as I clutch the court documents that give me custody of my son and we enter the main door. We are plunged into blackness. There are no light bulbs in any fixtures. Once a week the janitor replaces any missing ones and ten minutes later they are all stolen. Only on the wards, where the nurses keep watch, are there lights.

Ana knows where she is going and I stumble along behind her in the darkness, our footsteps ringing on the tiles of the dank corridors. We pass a partially open door. The sound of typing and conversation indicate some sort of administration office. From another door comes a whiff of carbolic. I glimpse an orderly kneeling on the floor by a bathtub, a pile of laundry beside her. She glances up, but her eyes do not meet mine. The smell of urine seeps from beneath a door labeled as a men’s washroom. I hear distant sounds of gurneys being wheeled but we pass none. We enter a stairwell. It hardly seems possible but it is even darker here, almost pitch black. The smell of mold is added to the urine and faint traces of carbolic. My bag grows heavier as we climb three floors. We step into the brightly lit corridor of the maternity floor and for a moment I am blinded.

It is quiet. I have been told there are 20 babies but I hear no evidence of them. Ana consults a piece of paper Viorel has given her. Room 216. Here we are. She knocks and we squeeze in. One wall is filled with banks of filing cabinets; another racks of medical supplies and drugs with a shelf of blankets, towels, and what looks like hospital gowns. Two nurses are at the desk in the middle of the room. There is only one chair. One nurse, no taller than Ana, is standing, the other is seated. Ana introduces herself. They talk for a while; I hear Canada mentioned. Ana turns and introduces me.

“Buna Diminață,” I say. They laugh at my pronunciation.

“Very good,” says the short nurse. She grins a lot, has bad teeth and speaks some English.

“We have adopted Elvis Georges, copil,” I say, showing her the custody paper. She glances at it, hands it to the other nurse who examines it and nods. She does not smile.

“We are happy to see Elvis Gheorges go to Canada,” says the short nurse. “He is a good baby. He is big. He eats well.” Ana asks something.

“Ah no!” the nurse throws her hands up, “The doctor is away. He will not return for an hour. We cannot release Elvis Gheorges.” She seems quite distraught. “You must wait”.

At first, the short nurse chats to us.

“We have very small babies here,” She explains, “One week old only. Bigger babies go home or upstairs.”

“Where is Elvis Gheorges?” I ask.

“He is upstairs too.” She notices the camera visible on top of my bag. “You take our picture,” she smiles and beckons the taller nurse. Both nurses pose and smile for me. They wear once-white uniforms and have caps on their heads; the short nurse has a crisp starched cap on top of short curly hair, the other has a blue one completely concealing her hair. I take several pictures and then put the camera away. The taller nurse looks at her watch and says something.

“Come, you can wait in here,” the short nurse says. She walks down the corridor with us and opens the door to a larger room.

“Cameră,” I say, remembering this is one of my words today. She smiles and leaves us alone while they go back to their work. We are in a large room, with white tiles to shoulder height and a dozen chairs against the walls. There is one window which opens to the nurse’s office and no pictures or posters on the dirty, greenish grey paint above the tiles. The floor is pale green linoleum with damp patches as if it has just been cleaned. The smell of disinfectant permeates everything.

A girl comes in dressed in a ragged housecoat and worn down slippers. She is very pretty and looks to be about 12. She sits down, undoes her housecoat, attaches something that looks like a gas mask to her breast and begins to pump milk. Ana starts talking to her. She has a soft voice, barely audible and does not smile. Her name is Florina, she is 15, and the baby’s father is 17. She gave birth four days ago. Downstairs is another girl, waiting to give birth, who is only 12. Florina switches the pump to the other breast. I cannot keep my eyes off her.

A bell startles us. The door opens admitting a trolley wheeled by a third, greencapped nurse. It is laden with bundles, and followed by a parade of women all in dressing gowns and slippers. They shuffle in and sit down. The nurse lifts a package and reads out a number.

“Opt “(eight) one of the women gets up to claim what looks like a bundle of blankets. She starts to unwrap it. Out of the unbleached bandages emerges a copil or copilă, a child, wrapped in grey blankets. The mother pulls down the shoulder of her gown and hefts a swollen breast out of its heavy-duty bra and begins to feed the child. The child makes no noise. This procedure is repeated with each number; a baby swaddled and tied to a board. Nine babies. Nine mothers.

The taller nurse brings Florina her child last. She is tiny and looks like a doll, păpusă. The baby is less than two kilograms and is not gaining weight. A child of this birth weight in a Canadian hospital would be in an incubator. A girl of this age would have social workers or family and friends around to help her through this. Florina is expected to feed the baby on the same schedule as all the other mothers; for half an hour every eight hours. She attempts to get her to suckle at the breast without success, so offers the small bottle of breast milk she pumped. The baby sucks a little. Ana, who has three grandchildren, helps Florina as best she can.

The room is filled with the sounds of babies suckling. I cannot sit still. Soon, I think, soon, I will have my own baby to feed. A child starts to cry and a nurse hurries to see what is wrong, she is frowning. The mother soothes the child and soon it is feeding again. I think of a day back in October when I went to visit my neighbor in our local hospital. She had just given birth to her second child, a girl. The card I gave her went beside the half dozen others on the table, next to her bed. They had pictures of teddy bears and toys and pink bonnets. A balloon tied with pink ribbons was floating at head height by the window and there was a big bouquet of red roses. Her husband had just left and the baby was wrapped in pink blankets in a bassinet by her bed. When she cried her mother picked her up and started breast feeding.

Florina still has a half a small bottle and her baby has stopped feeding.

The bell startles me again. It is 3:15. The mothers have had their half hour to nurse. The nurse reappears with the trolley. The women stop feeding and start to wrap the babies up. Some of them start to cry as they are removed from their mother’s breasts. As each one is wrapped and swaddled tightly again, the crying diminishes. The nurses chivy those who prolong the feeding. Florina is last. Ana looks at her and shakes her head. I learn later that the baby is expected to die, since she cannot thrive on this rigid schedule. The nurses shepherd the mothers out. The trolley, with the fed babies, turns left and the women go right. The babies are kept in a room at one end of the ward and the women at the other only meeting at feeding time. Florina gets no extra time with her little one. The room empties. She sits hunched over in a chair when everyone else has gone. Ana pats her head and murmurs to her. I turn away with tears threatening. I am more than twice her age and do not have my own child yet. I can think of nothing to say to help her. The shorter nurse comes in and angrily pushes her out.

“She must not love the child,” says the nurse. “It will make it harder for her. You are lucky in Elvis Gheorges. He is such a good baby. If we are a minute late with his feeding he will cry.” Her expression softens a little and she takes Florina by the arm to lead her back to the ward.

Ana and I sit down alone. I take out my crocheting. In an hour I have completed half of the bib. As I move the hook in and out and count the repeats I think back over the last year. I remember watching “60 Minutes” on Television and crying at images of children in overcrowded, filthy Romanian orphanages. When President Ceausescu of Romania was overthrown in December of 1989 reporters from the west were allowed into the country. As a result of Ceausescu’s insistence on women having children, prohibiting all forms of birth control and not providing any family allowance, orphanages had seen a huge increase in children during his term as President. The 60 Minutes team had visited several orphanages and created a stir world wide with horrific scenes of the overcrowded conditions. This had led many people to come to Romania to adopt the children. We had already been contemplating an international adoption after finding that the number of babies in Canada available for adoption was not high. We were getting older and our chances of adopting were not good. Romania seemed the perfect solution. Nine months ago we began the process that is about to come to full term now. There were endless interviews for the Home Study, paperwork to bring a child home, talking to others who had already adopted here, finding an interpreter, gathering information, and getting ready to bring a child home. Now I have stomach cramps as I wait for the doctor to appear, for my child to arrive.

I cannot concentrate; I keep getting up to look down the corridor. Perhaps the doctor will not come, or perhaps he will and we will not be told, or maybe he will deny us the child. I discover two mistakes several rows back. I am undoing the second mistake when he arrives. I jump up and my thread unwinds on the floor. My hands are shaking as I scramble to pick it up.

“Come into my office” he speaks good English. It smells of smoke and ashtrays overflow on the desk. He is tall with dark hair and scowls at me.

“This is very irregular you know. Usually all adoptions go through me.” He inspects the court documents. Ana says something. I sit on the edge of my chair, my thumb nail in my mouth.

“Very well,” he sighs and says something to the nurse in Romanian. She leaves to get the child. Viorel had warned us that the doctor feels cheated. He had planned to make money from the adoption of my son. Because we talked to the mother before him, he gets nothing. Ana offers him a carton of Kent cigarettes, as Viorel had instructed us, but he brushes them away. He gets up.

“Come,” He leads us to another room. “Wait here,” and he is gone. There is a large marble slab table, masă, I think. There are racks of wooden shelves around the room. Most are empty. The nurse returns with a bundle. She delivers my son to me. I see his crown almost hidden by blankets. I freeze; I don’t know what to do. Ana takes him. She unwraps the blankets, and hands him back to me. I struggle to hold him, afraid I will drop him. He opens his eyes and looks at me, alert and bright. The nurse with bad teeth grins and I relax and smile too. I lay him on the table and she and Ana help me dress him. The nurse runs to get two colleagues. They return to inspect the clothes and diapers. The smallest size will not fit him so I give them to the nurses. They clap their hands and exclaim. I smile with them. I am careful as I dress him in vest and diaper, blue sleeper, jacket and bonnet. Finally Ana wraps him in the blanket. The nurses examine the snuggli and watch as I put my son in it for the first time. It seems to take a long time. He does not object to being manipulated into it. I strap it around my neck and waist. The nurse then returns with the doctor.

“This is the formula we use here,” he hands me a carton. “Do not give him your American formula yet. It will be too rich. Mix the two together for about a week and then wean him off it. You are lucky; he is a very healthy child.” He walks us to the door. He is no longer frowning. “Good luck”, he turns and, before I can say thank you, closes the door of his office. The nurse with bad teeth grins at us. Ana picks up my empty bag and we prepare to leave the maternity floor. The taller nurse bends down to give Elvis Gheorges a kiss. I want to hug them both but the child is in the way.

“Mulțsumesc,” I say,” Mulțsumesc.”

Outside it is 5pm and, despite being dusk, it is brighter than in the hospital. Ion is waiting in the car. It has been three hours. I am ready to take my child home. Copil, casă.