Retro Jessie: Life With Jessie 11: Falling in Love Again [fall 1996, 6 years old]

The last 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’m still reeling from the expanse of a full day before me, trying to adjust to Life Without Jessie, since Jessie is in grade one and at school all day. I miss her more than ever this fall because something wonderful happened over the summer. I fell in love with her all over again.

You know, the terrible twos lasted a long time for us. About four and a half years to be exact. And while my love and delight in Jessie never stopped growing, it certainly hit a number of rocky patches. Patches where the thought of waking up and battling over getting dressed, or walking to school, or brushing teeth just made me want to stay in bed. But this summer I can honestly say I finally reached a point where I found her persistence admirable.

It has allowed her to learn to swim, to get on the swings by herself, to talk to other children, to continue to try to play tag and hide and go seek when she can’t quite keep up. And this summer Jessie and I were actually able to do things together without either of us insisting on going in different directions.

Perhaps it’s because she has the skills to be more independent now and doesn’t need as much support—she can get most of her clothes on by herself, get her own breakfast, look both ways before she crosses the street, answer the phone, get out her paints  . . . she doesn’t always have to ask for help or have me in there interfering in her life. Or maybe it’s because I eased up this past summer.

Not by choice, mind you. I had grand plans: swimming lessons, summer camp, reading, writing. We were going to get a head start on grade one and really work on developing friendships. We were going to have a “productive” summer.

But just as our productive summer was about to start, my aunt began to lose her battle with cancer. My Aunt Kathy. I don’t know how to describe who she was or what she meant to me, except to say that she was a perfectly ordinary woman with an extraordinary impact on my life. She loved me. But I mourn the space that her dying has left in Jessie’s life. A space that has no real meaning to Jessie, but that strikes me hard and at awkward moments. Jessie needs people who just love her. People who will continue to love her and support her through the different stages of her life. And Kathy won’t be one of those people, which is unfortunate, because Kathy knew how to love unconditionally. That was one of her gifts.

So this summer I spent as much time in Montreal as I could, needing and wanting to be with Kathy and our extended family. Trying to give back a small measure of what she had given me, and scrambling to learn how to love as she did.

When I was at home in Ottawa, a bit dazed and saddened and thinking, that way that you do when you are losing someone you love, about life, I found myself watching Jessie. Not with eagle eyes, but with open curious eyes as she splashed and giggled and did tricks in the pool, or as she transformed herself into a princess and demanded that I be the frog. “No, not that way. You have to hop Mom.”

I listened as she tried to join in on conversations with other children and invented a brother and a sister that lived with her in her house. “A long, long time ago my brother and my sister . . . .” And instead of seeing the falseness of her conversational offerings, I was impressed with her ability to understand that she had to share something that was on topic, which, in this case, happened to be siblings. Searching for something appropriate and finding only what her imagination could conjure up, she boldly offers it and waits for a response. I don’t intervene right away because I don’t want to interrupt the flow of the conversation, the back and forth jangle of 5-year-old banter, in which my daughter is an active participant.

It felt so good to watch her get excited by the prospect of a new day, of going to the pool, of painting , of having a friend over. It felt so good to watch her being happy. I had forgotten, in our struggles over process, just wat a joyous, curious, excitable, perceptive, and creative child she is. I hate to admit it, but I had forgotten to let her be happy, to let her be. And Kathy’s dying made me more aware of just how important it is to be.

The summer passed, not without pain, but certainly with a lot of love.

Jessie drew many pictures for Kathy. Pictures that surrounded her at home, in the palliative care unit, and when she died. Pictures of family, of birds and sunshine and rainbows. The last picture Jessie drew for her was done in bright green paint—a picture of Kathy in bed in the hospital. And beside her she drew pictures of all the things that she thought Kathy would like with her: “Toys, a book, coffee, a ball, and you and Grams. She would like you and Grams to be there. But oh, there is no room . . .” and she pointed to the full page and looked at me with disappointment as she struggled with how to get two more figures on the page. “That’s okay,” I said. “Our spirits are with her.”

While Jessie might not have known exactly what those pictures meant to all of us, she certainly put her heart and her love into them. I was reminded, between Kathy and Jessie, that the most powerful and enlightening force is love.

I fight for Jessie. I advocate for her. I speak to doctors and students, I sit on committees, I stay up late reading and stay out late at meetings, I find resources for teachers, I struggle with existing systems and for changes to the system . . .  because I love my daughter Jessie. That is the underlying force, the ghost in the machine. Sometimes I forget why I’m doing all these things, and they take on a life all their own. Sure, they’re all noble and challenging commitments, often they’re necessary parts of planning for Jessie’s inclusion. But this summer I began to realize that if all these other activities only lead me away from loving Jessie, from having Jessie know and feel that love, then I’ve got to stop doing them. I get tired of having to struggle and be polite and find ways to support the people who are supposed to be supporting us. I get tired of being an advocate and want to shout, “Just let me be a Mom!”

Jessie loves grade one. She gets off the bus smiling, ready to play or paint or do homework. Happy to see me, but also happy because school has been such a delight. She proudly shows me her home reader and says “We have homework” then she pauses and looks at me “What’s homework?” As I explain it to her, I realize that she has been doing homework all her life. It’s time to play. To follow her lead and delight in the messy black paint we are using for the witch’s tower she has created or to act out, once again, the story of Cinderella.

This morning on the way out the door to school, Jessie and I pause for a moment on the front porch. The wind chimes that Kathy gave us tremble and gently ring in the cool wind. “Listen Mom. It’s Aunt Kathy’s spirit,” Jessie says with joy and delight. And I think about how much I miss Kathy, and how much I miss Jessie. Sometimes you have no choice but to let go. And it’s only in the letting go that the joy and delight shines through.  

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.