Retro Jessie: Life With Jessie 2: It Begins

Part 2 of an 11-part series about Life With Jessie (written in the early years), first broadcast on CBC radio in 1997/98 and re-shared here as part of 31 for 21. I will be posting the installments here on the weekends through the month of October 2012.

Jessie slept a lot those first few days in the hospital, and rarely cried. I, on the other hand, cried until I thought that if I cried any more there wouldn’t be enough fluid in my body to produce milk. The hormones after giving birth wreak havoc on any kind of logic.

I cried because I couldn’t understand why it had happened to us. I cried because I was filled with love. I cried when I made up songs and rocker her in my arms for hours on end. I cried out of frustration when she wouldn’t get on my breast. I cried when she only had two sucks from the bottle and then fell asleep. I cried when she cried for the first time because she was hungry.

I cried because I had to grieve. And what I was grieving was not Jessie’s birth, but the death of a set of expectations. We had expected a so-called “normal” child, and without realizing it we had a whole set of futures planned for that child. The coos of grandparents, exclamations of beauty, walking, talking, learning the names of seashells, driving, creating, going to university, reading the Alexandria Quartet. I had to grieve the death of a child that had never been born, that had lived only in our imaginations.

Dan and I spent long weepy winter hours balanced on that single hospital bed with Jessie nestled between us. We touched her and cuddled her and tried to catch and hold her sparkling blue eyes. A doctor told us that the sparkles were actually common to Down syndrome—the result of some physiological or chemical imbalance—but we really didn’t want or need to know that. The sparkles were, to us, a magical dance of life, a laughing intimation of Jessie’s character.

I thought long and hard in those hours of rocking and singing and crying about what it was we wanted to share with our child anyway. Already we had shared tenderness—was that so different from other babies? She and I had shared the trauma of the first bath where I was certain I was causing her grievous bodily and psychic harm and I’m sure she felt the same way. We wanted to love her, to challenge her, to lead her into the beauties of the landscape of a changing tide in Maine, to teach her silly spider songs, to go fishing. I wanted to be able to lead my child to herself, to have her love and honour herself and grow to the best of her abilities, whatever they might be.

None of these experiences, these opportunities, had been taken away from us when Jessie was born. If I focused hard enough, they actually seemed to multiply, because when you take away all the externals of achievement, what you are left with is what really matters. I mean, did it really matter if she understood the theory of relativity (which we certainly wouldn’t be able to explain to her)?

One day, on the way home from the hospital through the January slush, Dan saw a little girl with Down syndrome and her father. He followed them, “like a detective,” he said, “only I was crying . . . and I wanted to run up to her and hug her and ask her Dad, oh, I don’t know … I just wanted to know if she was happy. “ But he couldn’t bring himself to intrude with his tears and his questions. So he followed them, for about four blocks. “And Na,” he said as we lay in the hospital bed, Jessie between us, “they looked happy. They were holding hands and laughing.”

His biggest fear was that Jessie would be teased, called names, left out of games. That she would feel this constant sting of being different, of not belonging.

My biggest fear was that I wouldn’t be able to love her right. That I would want to change her.  I wanted to know everything there was to know about Down syndrome so I could accept her the way she was.

The doctors were helpful. They told us all the things she wouldn’t be able to do, and they were numerous. She would never speak very well, she would walk much later than other children, she might never be able to read, she would go to a special school, and she would always be dependent. We were discouraged from finding and early intervention program. As the doctor described it, it just held out false hope for parents and none of the benefits had been proven.

When we asked for something we could read, they gave us a medical text on birth defects published in 1958: a clinical description, complete with photographs, of very kind of birth defect imaginable.

It described the physical features of Down syndrome with close-up shots of protruding tongues and slanted eyes. We kept looking at the book and then looking at Jessie. They weren’t the same.

They weren’t the same because the book described the condition, not the individual. And while Jessie has Down syndrome, she is not Down syndrome. She is Jessie!  The reality is not in the things she can’t do, but in the things she can do, the gifts she has to share, the relationships she has with those around her.

Dan kept thumbing through the book of birth defects. He stared at the pictures and came to believe that we were actually very lucky. Down syndrome seemed minor compared with all the other things that could have happened. “Look at this Nan,” he would say as he pushed the book onto my lap, “I mean, do these babies, do all of them have someone to love them?”

I refused to look at the book again. I sent Dan to the public library and badgered the nurses for something more useful. The hospital social worker was on holiday, but if I wanted, they could contact somebody from the Children’s Hospital for me.

Louise peeked her bright face into my room, introduced herself, and tiptoed over to where we were sitting. She asked if she could hold Jessie and when she cradled her in her arms, I could feel the gentleness and care that enveloped us. “She is beautiful.” My spirits rose and I beamed with pride. Finally, there was somebody in the hospital who could see beyond the extra chromosome.

Louise listened to me talk. She cringed when I told her about the birth defect book and told me not to read anything written before 1980. That information was so out of date it was depressing. Instead, she handed me a packet of information and answered my questions. Life for children with Down syndrome had changed. They aren’t institutionalized anymore; they live with their families, they have friends, they become independent.  But each child is different. Each child brings its own gifts and its own challenges. She encouraged us to just get to know Jessie, to hold her and love her. She could help us negotiate the system, if that’s what we wanted.  It was up to us. We could reach her anytime at the Child Development Clinic at CHEO (the Children’s Hospital of Eastern Ontario).

She left a folder full of information. Articles on genetics, medical concerns, and early intervention. Human interest stories that profiled children and young adults with Down syndrome. She told me to take my time, to talk with Dan, and she’d come back to see us together if we wanted.

Here was somebody who had listened to what I was saying. Who gave me information that was useful and positive, and who actually saw Jessie as a baby and us as a family. When she left I felt a new surge of hope and curiosity.

My parents flew up from Florida as soon as we told them Jessie had Down syndrome. They arrived, tentative and gentle, with presents in their hands. I wanted them to see Jessie with her cute blue eyes and tiny hands, but when they arrived Jessie was under lights because she was jaundiced. As I led them into the nursery, I tried to explain that it wasn’t as bad as it looked. Jessie was in an incubator. She was yellow and had padding strapped over her eyes that made her look like some kind of creature from The Fly. Her stomach and face had red scratches from her long fingernails and her tiny hands were now encased in big mittens. My mother took a deep breath when she saw her. This wasn’t exactly how I had envisioned them meeting their first grandchild.

We cocooned in our private room and watched the snow fall outside. My mother stayed at our apartment and cooked and cleaned and made little flannel mittens for Jessie’s hands. I struggled with breast feeding and Dan departed every night to do his show (he was in a comedy troupe). I hate to say it, but the best thing I did, after  not smoking during those long months of pregnancy, was to give in to the need for a cigarette.

It was down in that dungeon of a smoking room (a six by seven foot lair next to the boiler room) where I met Anne. I must have looked forlorn and weepy as I sucked on my cigarette and this cheery woman next to me asked me what I was in for. “I had a baby,” I said. “She has Down syndrome.” I was trying the phrase on for size, as I would find myself doing for the next two months or so. “Oh, how wonderful!” she said. I looked up at her, wondering f if she had heard me right. She smiled. “My son Scott had Down syndrome. He’s 17, and what a boy!” She laughed with pride and love. I knew it was time to go home.