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.