Wednesday, March 05, 2014

In Conversation With...Cindie Smith

First published in The Oxford Journal on Wednesday, February 26, 2014 by Sara Jewell Mattinson.

The wind blows around Maggie’s Place Resource Centre for Families on Elmwood Drive in Amherst but inside on a Saturday, it’s warm and quiet. In the kitchen, a kettle boils while Cindie Smith of Truro hands out homemade goodies.
“So you’re responsible for this place, then?” I ask her as we sit down with mugs of tea.
“Oh, goodness, no,” Cindie says. “I’m a cog in the wheel. That was my role.”
And yet, every time she walks in the door of Maggie’s Place in Amherst or in Truro, she is connected to her life-changing experience. 

Cindie Smith, left, with Maggie's Place executive director, Carolyn d'Entremont. On the wall behind them is a photo of Maggie. 
Before she was a cog, her role was mother to two daughters, one of whom was diagnosed with a rare disorder shortly after she was born.
“Maggie was born in 1989,” Cindie explains. “I’d had three miscarriages so this was a risky pregnancy. I had to spend a lot of time being still, which drove me crazy, especially when you have an eight-year-old. Maggie was a couple of weeks late, cute as a button when she arrived. She spent a few days in an incubator, she was having respiratory issues, and a few days later, she was fine and we went home.”
Cindie says her first daughter, Emily, had been a great eater but Maggie wasn’t. Although her mother kept telling her the sisters were not going to be alike, Cindie felt there was more to it. 
“By about six weeks, as I was still struggling to feed her (she refused to breastfeed), she wasn’t looking at me. I knew something was up. I went to our GP and when she looked in Maggie’s eyes and saw cataracts, she sent me to the pediatrician.”
Within twenty minutes, the pediatrician had diagnosed Maggie with Cerebro Oculo Facio Skeletal Dysplasia, such a rare disorder that in 1989 there were only five other children in the world diagnosed with it. 
Cindie was lucky this pediatrician knew what Maggie’s symptoms meant. 
 “He very kindly said, ‘I’m going to take you to the end of what I know about healing and then I’m going to pass you over to someone who knows more.’ There was just a little bit in a diagnostics manual,” she says “We didn’t know what we were dealing with. He and many other health care providers very kindly doled out information as we asked for it instead of pushing stuff on us. There wasn’t a lot to know. The five people in the world who had had COFS at that point, you could line them up and swear they didn’t have the same disorder. It manifested very differently. We had to make it up as we went along.” 
She grew up at the age of 28, Cindie says.
“I think I remember the exact minute. I was feeling like I was drowning because there was so much to do and so many things that needed my attention. Up until that point, I wasn’t a very organized person. I remember that my spine straightened and I thought, ‘I’m going to do this,’ and I got organized, I got determined and I got focused.”
Maggie, who never weighed more than 10 pounds, and whose cognitive growth matched her physical growth (“She remained a baby,” Cindie says), passed away in April 1994 at the age of five.
Her older sister, Emily, was 13. 
After Maggie’s death, Cindie and her then-husband drifted apart. 
“In caring for Maggie and Emily, there was nothing left over. It was interesting; when we would go into IWK, we’d see this neurologist, a very funny Irishman, and he would always ask me, ‘So how are you guys doing?’ And I would always try to bring his focus back to Maggie. He said, ‘A lot of families don’t survive this’ but I was so focused on the task, I didn’t have time to think about that and on I went.”
So shortly after her younger daughter died, Cindie became a single parent and a working mom. She started working for a non-profit organization assisting persons with disabilities to find work. She also attended Dalhousie University part-time to study health services management. Currently, she is the Caregiver  Support Coordinator, Northern and Eastern Mainlaind, for Nova Scotia Caregivers Association.
She’s been married to Michael for 17 years and is now is a grandmother of two.
“When Lily and Sam were born, I had to be there when they were born. I had to be sure there were no cataracts, I had to be sure they would eat well. I had to be sure,” she says. “Even though the gene for Maggie’s disorder comes from both parents. If Emily and Ian both had that gene, that would be like lightning hitting 10,000 times in that very spot. It would be that rare. I knew that but there was the voice! I had to be there, I had to be sure.”
Maggie would have turned 25 this year, the same year that Maggie’s Place celebrates 20 years.   How did one become the legacy of the other?
In 1993, a committee formed in  Truro to create a proposal for funding from the federal government. Cindie was a member of the committee, sitting at meetings with Maggie on her knee. 
“In January 1994, we were given the wonderful news that our proposal had been accepted,” she says. But, “At that point, Maggie was giving some pretty clear indications that her death was imminent. Her system was starting to shut down. She died on April 24. Probably the next week, my dear friend, Nora Jessome, showed up at our house. She had been asked by members of the steering committee if she would come to us and ask us if they could name both centres in Maggie’s memory. We had a good old cry over that.”
(Even though she has been telling her story for 25 years, that part still chokes her up.)
Cindie calls Maggie’s Place a “wonderful, breathing, growing memorial.” She volunteers at Maggie’s Place in Truro doing committee work and fundraising. 
“Maggie was in full command of our house when she was alive and she’s sometimes in command of it now. Every now and then she’ll give me a little snap on the ear and help me realize that, um, I’m not really finished learning from this yet. That’s good,” Cindie says, eyes bright with tears. 
Of joy.

The logo for Maggie’s Place Family Resource Centre is a ladybug. To read why -- it has to do with Emily and Maggie -- please check out this link: 

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