MEADOWVILLE, N.S.
She is just Izzy – a curious, bright-eyed baby girl with a ready smile.
Elizabeth Amelie, more commonly known as Izzy, is the subject of a much-travelled blog posted by her mother, photographer Christine Whelan of Harrier Hill in Meadowville. It is titled Our Homey with an Extra Chromey because Izzy has Down syndrome.
Parents Whelan and David Hachey, a former Green Party candidate in Central Nova, were blindsided by the diagnosis after Izzy’s birth last December.
“We’d gone through all the testing during the pregnancy and our odds were 1 in 400 so it was not something we were expecting. At the same time, something had niggled in a deep corner of my mind. It was a worry I didn’t have when I was carrying my son, Simon.”
Whelan tells the story while Izzy nurses and then sits up, poking her fingers through the eyelets on her white cotton dress, reaching for multi-coloured plastic rings and casting smiles around a room filled with her two-year-old brother’s toys.
In the moments after her birth, Whelan instinctively pressed for confirmation that her baby was fine. Reassurances were offered but she persisted and a nurse began looking for the physical markers of Down syndrome, a chromosomal abnormality known as Trisomy 21. She remembers the nurse saying she was neither convinced, nor unconvinced and would have a pediatrician come by.
“Later, in the recovery room, I asked if we should tell our parents our baby has Down syndrome and we were told we should.”
For Whelan, already wearied by her C-section delivery, the next 24 hours were filled with anguish.
“I stared down at the baby in my arms in total shock and disbelief. I couldn’t see my baby, all I could see was Trisomy 21,” she wrote in her blog.
Her dreams for her daughter had not taken Down syndrome into account. She was filled with doubts about how to mother this new baby and besieged by fear of the unknown. Frantically, her mind raced through all the stages of childhood, the teenage years and challenges of an adult world. Each of Izzy’s contented breaths triggered a new question, a new fear.
“The space where a clear, vibrant picture of my daughter had grown in my heart was wiped clean, leaving behind an empty, scary void of unknowns,” she posted.
Through the wee hours of morning Whelan held her daughter in her arms, her tears falling steadily on the newborn’s head.
“Somewhere the tears turned to tears of joy. I began to see Izzy where previously I’d only seen the signs of Down syndrome. I saw a little person, a little miracle, and that was our beginning. I’m so grateful it came quickly.”
According to Whelan, Hachey, a former Wall Street trader who took up sheep farming before returning to finance, was less plagued by fear and worry in those first hours.
“He was much calmer than I was. Of course, it might be worth noting he hadn’t gone through a C-section nor had any of the drugs I was given,” she pointed out.
The Harrier Hill blog, which is interspersed with lines from a poem by Nancy Tillman, came when Izzy was a few weeks old.
“A stranger in a grocery store admired her and I felt compelled to point out she has Down syndrome. Then I wondered why I did that. Then I wondered if I didn’t, would I have been trying to hide it? I didn’t want to do that.”
Whelan and Hachey decided they also did not want Down syndrome and the variety of well-intended responses it evoked, to be at the core of every conversation for months to come.
"I wrote the blog to let people know about Izzy but I’m glad I wrote it for other reasons. If I hadn’t written it, I wouldn’t remember half of it. It would be lost in all that has happened since then. Reading it today, I want to give the woman who wrote it a hug, to tell her it is going to be far better than she can imagine.”
It was the kind of heartfelt blog quickly shared by friends and carried far and wide on social media.
“I was sitting with Izzy at the airport and had a conversation with a stranger. I was shocked when she brought up the blog and asked if I had written it.”
Izzy’s arrival has prompted Whelan to reflect on science and fate and faith.
“I think about all those things more than I used to but I don’t have any answers. I just know Izzy has brought us such growth and happiness. Her Trisomy 21 is neither good nor bad, it just is. In the beginning it was everything and now we go days without remembering she has Down syndrome. ”
Izzy is a healthy baby, so healthy that Whelan has been told her track of care is the same as any other baby’s. She does not have the heart defect many Down syndrome babies are born with, nor does she have difficulty in nursing, which is also common. As eager students of Down syndrome, Whelan and Hachey have sought services and resources that may help Izzy on her journey.
“We’re involved with an early intervention program and we’re already in line for speech therapy. There is an online group of Nova Scotia parents with Down syndrome children that I’ve found extremely helpful and we’ve had some get-togethers with families in this part of the province.”
The worries and fears of that first 24 hours have not left Whelan but she has put them on the shelf, to be dealt with if and when necessary.
“Children teach us so many lessons but for me the biggest one has been to enjoy today with Dave and Simon and Izzy. I don’t want to miss its joy by worrying about what might happen down the road.”
