Retro Jessie: Life With Jessie 1: In the Beginning

In 1996/7, I wrote a series called Life With Jessie that was aired on CBC’s Morningside with Peter Gzowski  (collected and published in The Morningside Years). For those of you who aren’t Canadian, CBC is the northern equivalent of NPR. Anyways, I initially began to write about Jessie’s life in response to a number of interviews and stories I had heard on the radio that focused on the challenges and/or joy/inspiration of parenting a child with a disability. I had begun to turn the radio off when these types of stories came on, because they so did not reflect our life, and only told about the difficulties, the challenges, or the amazing things that parents and/or children had done in overcoming their disability.

You know those stories: they fall at either end of the inspiration/desperation scale. As if there were only two ways to parent and/or live with disability. What was missing was any portrayal of the normalcy of life with a child with a disability. It just IS! And I wanted to share that with people. (Remember, there was no blogosphere then!) The road, the twists and turns, the diapers and first steps and first signs and first days of school. The exhaustion of a rocking a child who just won’t sleep, or of holding down a child for some invasive medical test. I just had a feeling that the common threads of parenting would be as numerous and important to the tapestry as the threads that were uniquely ours. I wanted to say: Here we are! We are you! We are part of your community, and you are part of ours, so stop making us so special that we can’t break bread together! So that was the initial impetus for writing Life With Jessie.

I got signed on for about 4 pieces, but the response was so overwhelming, we continued until Gzowski stepped down from the show. It was a good time, and I thank Gzowski, and his producer and right-hand brain—Shelley Ambrose, for the opportunity to marry two of my loves: Jessie and writing. 

For 31 for 21 (the blogging celebration of Down syndrome, hosted by Michelle over at BlueberryEyes, with more than 100 bloggers all blogging every day for the month of October) I will be posting the whole  series (11 episodes) on the weekends., starting … you guessed it! At the beginning. So here is 

Life With Jessie 1: In the Beginning

“Who does she look like?” the nurse asked as she placed this scrunched up bundle of life into my open and waiting arms. “Dr. Sim” I joked, referring to my Asian obstetrician who was impishly grinning at me through my legs.

Dan laughed, for the first time since we had entered the hospital, since I had entered labour. He reached out to hold Jessie, but I couldn’t let her go. I wanted to touch and kiss every part of her body. I pulled him to us and we grinned and laughed and put our arms around each other.

“This,” I said, “is the most incredible thing in the world. This is amazing . . .  its incredible  . . . no, I said that already. . . “ Dan was peering into Jessie’s face. “Hey, she does kind of look like you Dr. Sim,” he joked, “Do all your babies look like you?”

We laughed. Jessie had Dan’s mother’s wide cheek bones and his sister’s almond-shaped eyes, or maybe that was my mouth, or perhaps . . .  We gazed and exclaimed and hugged each other and protested when she was taken away to be weighed and then hugged some more.

The next morning, as Dan was finishing the jubulous phone calls to friends and relatives, a strange doctor walked into the room. She slowly pulled the white curtain around my bed and stood there silently, waiting for Dan to finish talking on the phone. My whole body stiffened when I saw her. I tugged on Dan’s arm, then pulled the receiver out of his hand and hung up the phone. He turned and stopped when he saw her standing there.

“There is something wrong . . . “ I said, hoping that if I said it, it wouldn’t be true.

“Yes,” she said, “we think your daughter has Down syndrome.”

She continued to tell us that there might be some problem with her heart, that she would be developmentally delayed, that we could expect her to have the I.Q. of a five year old, although it was hard to tell. She emphasized that it was not our fault. It was nothing we had done,  just a sort of genetic roulette and Jessie had drawn an extra chromosome. She said many other things that I don’t remember.

I do remember the soft folds in the white curtain that surrounded my bed, the shuffle of slippered feet, the clipboard the doctor held in front of her as the words came out of her mouth and bounced around the room in a kind of random soundscape. I tried so hard to focus on the information she was giving us, on asking an intelligent question, on not tearing the sheets off my body and wailing loudly into the echo of that hospital.

I willed my body to stay still and clenched each muscle. “Just relax,” she said, “get used to the idea.” But it’s not an idea. It’s a life. A tiny newborn, an unprepared couple, a wrenching feeling that tears at your insides that you can’t let out because there are three other women cooing over their healthy babies right there beside you.

“I want to see her.” It was a statement, not a question. I needed to hold her, to look into her eyes, to feel her heartbeat, touch the soft spot on the top of her head.

“You can go and get her now. We have a few tests we might need to do, but we’ll move you into a private room.”

I was grateful. I didn’t want to see anybody, have anybody see me. Dan was silent and shaking. “Are you sure we should go see her?” he whispered? “Yes.”

I pulled Dan to the nursery, and then stopped. It was a sea of plexiglas bassinettes filled with newborns. Having just given birth with sweat and tears and ecstasy to this new life, I was sure I would recognize her as soon as I saw her. But in that ocean of swaddled babies I had to look at the little pink and blue nametags and find the one attached to “Baby Huggett.”

She was sleeping. She was beautiful and tiny and peaceful. All six pounds of her. I expected her to somehow look different, but the only difference was that the tiny wisps of hair that had stuck to her head after birth had dried into a reddish blonde halo and she didn’t seem as scrunched up and red. Dan and I held hands tightly, a river of questions and fears flowing between us. This was our daughter Jessie.

We had decided long before the actual birth that if it was a girl we would name her Jessie after my grandmother—a strong and intelligent woman. When she found out that Jessie had Down syndrome, she called to say that she was honoured to share her name and hoped that in doing so, she would also be able to share her strength.

Others asked if we were still going to name her Jessie. As if when we found out that she had Down syndrome we would change her name to something more appropriate—like what? I mean, what is more appropriate for a child with Down syndrome? A less valued name? A name that would reflect her I.Q.?

In the days to come, the most precious people were those who saw Jessie as a baby. Our friend Polly who walked softly into the room and asked if she could hold Jessie and looked into her eyes and cried—not because Jessie had Down syndrome, but because she was a tiny beautiful baby. Kim and Aydin who sent flowers. Flowers that I nursed for a long time because we didn’t get many flowers. They must have had a huge “stop order” at the florists when people found out that Jessie had Down syndrome, thinking that flowers might not be appropriate. Let me be perfectly clear on this point. Flowers are appropriate. I hated peeking into other mother’s rooms and coveting not only their perfectly healthy babies, but their profusion of flowers and balloons.

People did make other insensitive and downright stupid comments. Comments that shocked me into silence because I was not yet used to people’s reaction to difference. “Are you going to keep her?” As if this precious life were something we could kind of drop off at the dog pound on our way home from the hospital. “Keeping” Jessie was not an issue, not even a question. I loved her from the moment she tumbled out of my womb and while there were many things I didn’t know as we stood there peering at this swaddled life in a plexiglass bassinette, I knew, with a certainty and clarity I had never felt before, that I would fight with every breath left in my body for her life.