This is one of Anne's self-portraits, one of the most recent (late 2023). It is in water color.
This is one of Anne's self-portraits, one of the most recent (late 2023). It is in water color.
Another project I am currently working on is a collection of essays which I had written on and off about my life with Anne, my first born who lives with an extra chromosome; her twenty-first pair comes in triplets, confusing much that goes in and out of her head, actually, all her cells. I had wanted to convey the many surprises she had in store for me, not the least of which is the fact that she is an artist. The collection of essays is called Annescapes.
Here's the first essay:
First Night
She was born in the Year of the Ox, the steadfast, hard-working and stubborn ox. Her Chinese name, I remember quite clearly, came to me at three in the morning the night she was born. She arrived eight minutes after an early December midnight, one month earlier than expected. The thirty minutes of delirious exhaustion after giving birth to her is the happiest sleep of my life, before and ever afterwards. When I opened my eyes, my husband, David, was looking down at me with the sweetest, saddest eyes I have ever known, and reminded me, I thought incongruously at the time, of the Little Prince, standing all by himself on a lonely asteroid in space; he had been alone with the news while I slept.
He held my hand in his and said, “It’s okay.”
He paused, as if something caught in his throat. “All we have to do is love her,” he whispered, almost to himself. Then, louder, “They say she has quite a few markers that lead them to believe she has Down syndrome.”
“What does that mean? What markers?” I asked, groggily combative through the postpartum haze.
“Well, apparently she has some Mongoloid features,” and before he could continue, I dismissed it with “What the hell? I have some Mongoloid features! I’m sure it’s a mistake.”
David looked tired, sighed and said, “They’ll be doing further testing and we’ll know for sure in a couple of weeks. I guess we should wait till we’re certain before we tell our parents.”
We had moved to Austin, Texas a year ago; our families were far away, our friends, new.
No one expected her to come so soon anyway. His parents were in England and mine in Toronto,
recently having moved there from Hong Kong. I agreed, there was no need to tell them before we’re certain.
“I don’t believe them though,” I said, but I didn’t have long to remain defiant. We were
told she might have to be rushed to Houston right away as they detected heart trouble. She didn’t
come to the room that night and when we finally went to see her it was at the “baby’s quarters” where she was kept in an incubator with a lamp shining on her. Apparently, though, the arrhythmia had corrected itself. Now she was merely jaundiced. She had on this tiny infant mask to protect her eyes that made her look like a superhero. We laughed; we were relieved, clinging to this minor, fixable condition for the interim. Two weeks passed, Anne was released from the hospital with her diagnosis confirmed. Yes, she has Trisomy 21, better known as Down syndrome. Unlike some others born with that extra chromosome, Anne did not have the heart or lung diseases that sometimes accompany the condition. Later on, she did not even suffer much from the more common ear infections or eye problems, but she was not entirely spared other complications. On that first night, however, we were unaware that other life-threatening issues lurked.
That winter night I woke up at three in the morning with her Chinese name. For months, I had been thumbing the Shi Jing or Book of Songs, the oldest book of Chinese poetry, for inspiration. During the thumbing period I was not yet aware of her gender, so I had all kinds of boys’ and girls’ possibilities in my head. 天 Tian (sky/heaven) 菲 Fei (sweet smell/scent) when it finally gelled, is a clever little cross-cultural pun: Heaven Scent/Sent. I was so pleased with myself that I hadn’t even noticed I had suppressed another pun that is hidden in this conjuring trick. Fei, written without the flower radical, means a mistake, a wrong. This child was God’s mistake, Mother Nature’s mistake. Somebody had made a mistake! Thus, even though I hadn’t yet accepted the reality of that extra chromosome that night, I was, in naming her Tianfei, subconsciously looking for someone to blame.
Her English name I had chosen for her long before that night. I was captivated by the aesthete, Walter Pater, and my favorite poet was W.B. Yeats at the time. As with my search for a Chinese name for my child, I was thumbing pages, this time, of Pater’s prose and Yeats’ poetry, and of the latter, I was naturally drawn to “A Prayer for My Daughter.” I had thought that if my baby turned out to be a girl, I would, like the poet, choose for her kindness above beauty. I, too, would wish for her to “be happy still” amidst the storms of life.
In the end, even though I did name my daughter Anne, I was not thinking of the poet’s daughter, Anne Butler Yeats, but of the apocryphal Mother of Mary, St. Anne, from Walter Pater’s description of Da Vinci’s Mona Lisa in his book, The Renaissance, by way of Yeats’ anthology, The Oxford Book of Modern Verse. So wrapped up in books was I that I had forgotten the flesh and blood baby who was sleeping in the cot in Yeats’ poem, and that she, too, was named Anne. It was the mythological women in Pater’s prose that held my attention.
I dreamt of telling the stories of those women to my Anne and having illuminating discussions with her, and I dreamt of reading great poetry with her. I had no idea, when I thought those thoughts, that she would be denied mythmaking, or at least that was what I was given to believe when I finally accepted her diagnosis and read the “literature” I was given about Down syndrome.