I am the middle child of three children. I have two brothers: the older one is Ward and the younger one is Fidridge.
Well, that's a start. I've spent a lot of time wondering what I want to say about Ward in particular, but there is so much to be said about him and his place in my life that I honestly don't know where would be the best place to begin. This morning, I decided to start with what seemed most important to me about Ward at this point in my life. I turned over in my mind my experiences with him and my feelings for him and his effect on me individually, and I found myself sitting in the centre with spokes spiralling out of me like a ten-speed bike wheel. I could not easily excise a singular experience with which to smoothly illustrate any one feeling or memory about him. It turns out, everything is important when it comes to Ward.
When Ward was a baby, there was very little sign that he
was any different than other children his age, both physically
There were complications with my mother's labour when Ward was born, and partially due to a lack of technology and partially due to doctor error, it is amazing that he and my mother survived the delivery at all. Ward had strokes in utero during the labour and was robbed of oxygen because the umbilical cord was wrapped around his neck. He was the colour of a new, blue bruise when he was finally pulled out of her stomach by an unnecessarily horrific caesarian section that ran from my mother's pelvic bone to well above her waist.
Both of them survived and were healthy, but no one knew the extent of the damage to Ward. My mother became pregnant with me when he was two, and it was just becoming more apparent that irreversible damage had occurred. She was anxious throughout her pregnancy with me, because her first born was still not walking or talking and was still acting very much like a baby.
At three, he had started walking, but still could not talk, was not potty trained, and did not eat by himself. He had scar tissue on his brain, cerebral palsy, an inability to sweat, and what appeared to be autism. My parents had Ward tested to find out where his abilities lay and at what age level. They were told that he would never excel mentally beyond the capacity of a one- or one-and-a-half year old. My mother, knowing what a crock that diagnosis was, demanded another test and brought along the bird book. The bird book had over sixty different kinds of birds in it, and Ward, at the age of three, knew every single one of them by name. He couldn't say the names, but he could find the right bird for you if you asked him to.
In the early seventies, doctors gave tests to such children in rooms alone without their normal support structures and then based their judgements about the children's intelligence and abilities on the results. The tests seemed more about measuring children like Ward against the achievements of "normal" children and not finding the strengths of any individual child. Ward cannot point at specific things without using another person's hand. We don't know why, but that's how he works, and that's why he failed everything in his first test. He spent the whole time looking for my mother like any normal three-year-old might do in a strange situation where strangers are putting pressure on them to perform tasks outside of their normal context. With my mother in the room for his second assessment, Ward blew the doctors away with his level of knowledge. He was quite the miniature ornithologist.
Ward was somewhere between three and four years old in this
picture. He was generally a happy child, but he often wore a
hockey helmet at home to protect him when he would
repeatedly bang his head on the floor, and he often woke up
at night screaming from the pain of shortening tendons in
his arms and legs.
He not only had an amazing memory, he was also stubborn as hell. When my parents brought me home from the hospital, Ward knew exactly who to blame: my mother. If he knew that she had anything whatsoever to do with the food on the table, he refused to eat. He refused water if she had poured it. On the third day, my father took Ward to a doctor, because he was still not eating and was becoming dehydrated. The doctor assured my father that Ward would eat and drink soon enough. He did the next day, but only out of his body's basic desire to survive.
As he got older, his sense of humour grew. Without speech, his humour had to be of a physical bent, and it was usually at the expense of someone else. My mother would say the "now I lay me down to sleep" prayer with him every night before bed, which for some reason always drove him into fits of giggles. At the end of the prayer, if he was in a particularly good mood, he would make a grab for her necklace. He didn't want to actually rip it off, but he did want to see my mother panic and call for help in an effort to save her jewellery. He would take the ketchup bottle from the refrigerator, spray it up and down the inside of the door, and then sit and wait to be found out. If you got mad enough to swear, he'd make loud gasping noises just trying to catch his breath from laughing so hard. Confining you in stranglehold hugs, breaking flower pots, eating cigarette butts out of ashtrays, running away as fast as he could go, drinking dish detergent, turning on the taps, dumping books off shelves: these were a few of his favourite things, and it kept my parents very busy.
I have no idea how they handled the two of us together. One regular toddler is busy enough, but having two, the first of which is continually getting larger and therefore more destructive, must have been exhausting. What was probably most exhausting for my parents, though, was having to watch Ward grow alongside their friends' children of the same age and knowing that he was being left further and further behind.
In a way, I am lucky that I came second and did not have to be aware of the slow revelation of his many disabilities. To me, he was just Ward, as he was. When I was very little, before I was old enough to help my parents out with his care, he was not as much like an older brother as an equal. He wrecked my crayons, I pulled on his hair, we shared baths, he gave me the chicken pox, we both loved ice cream. Although I knew that he was different than anybody else we ever saw, and I knew that his difference also made him distinct from the other kids in his special school, he was just another kid to me. I was blessed with being too young to know the emotional stress of physical pain in the body of someone you love and the feeling of futility and helplessness in facing such an uncertain future with your family.