YARMOUTH, N.S. – In her 16 months of life, Millie Grace Robertson touched the lives of many.
She inspired people by defying medical odds time and time again. She made people smile with her inquisitive eyes and untamed curls. Her love of music was infectious and when she wasn’t sharing smiles and giggles she loved being on the receiving end of cuddles and kisses.
Millie, the daughter of Caroline and Derek Robertson of Yarmouth, was born with congenital heart defects. People pulled for Millie. People prayed for Millie.
She melted hearts. Her death on May 2 broke people’s hearts.
But Millie’s life is a story that continues to be remembered, including now through the publication of a children’s book called Magnificent Millie. The book was written by Stephanie Patterson of Ontario. The illustrations are by Millie’s mama, Caroline.
The two women’s lives crossed at the Hospital for Sick Children in Toronto – or SickKids, as it is known. Patterson’s son Henry was also born with a congenital heart defect.
“I was really happy to have met her,” Patterson says about Millie’s mom. “Those little glances and smiles that we exchanged with each other meant a lot because we kind of understood each other without speaking.”
Their children were cared for in a room referred to as The Cottage. It’s an overflow room of the cardiac critical care unit where beams of sunlight shine through the windows and soft music is played, aimed at creating a comforting environment for families. Robertson says it’s also a place where you become attached to other babies and where you create bonds with their parents.
Which is why after Millie’s death Patterson wanted to do something. Patterson has always used words to express her feelings – as a child she had a journal, as a teenager it was a diary, as an adult she writes a blog – and so she decided to write a children’s book about Millie.
“I had to eventually get Caroline and Derek’s permission to do this. I was really nervous to ask them. But Caroline just jumped on it and said yes, 100 per cent, let’s do this.”
Millie’s mom also asked what she could do to help. Patterson told her she was looking for an illustrator but hadn’t found the right fit.
“She said, ‘How about I draw the pictures?’” says Patterson, “Oh my gosh, I wasn’t expecting that at all.” Within three or four days Robertson had sent a sample. “I was speechless,” Patterson says. “Not only was it beautiful, but it was Millie.”
Millie lived with hypoplastic left heart syndrome and pulmonary vein stenosis. She endured 10 open heart procedures, five catheter procedures and endless bloodwork, needles and medication. Her death in May came as a result of a severe blood clot that led to prolonged cardiac arrest causing extensive and irreparable brain damage.
But while much of Millie’s life was dictated by her medical condition, it was also a life filled with joy and love. Robertson says while sad, it was comforting to draw pictures of Millie for the book.
The two mothers hope the book serves many purposes. Many parents have told Robertson about how they have struggled to explain to their children what happened to Millie.
“Stephanie just has the most beautiful words and way of describing Millie’s life and her purpose and what happened,” Roberston says. “When I read it, it made me feel better because I struggled with it.”
The story of Millie, a Heart Warrior, touches on bravery, determination and the everlasting bond with those we love.
Congenital heart defects (CHD) are more common than people realize. About one in 100 babies are born with one in Canada, although the degree of the seriousness varies.
“I’m hoping the book will have an impact where people will really start to understand what kind of impact this has on people’s lives,” says Robertson.
“Palliative care at SickKids, who we became very familiar with because Millie was on their list for a long time, just purchased a bulk order that they can hand out to parents who are in similar situations, as my family was with Millie.”
Patterson says they will be sending books to all palliative care centres with a cardiac unit in North America.
“It’s a very comforting story that I hope will help families in the future who are going through a very difficult time,” she says.
Above all, she says the book will be a keepsake for everyone who loved Millie.
The book is being made available through Amazon. Robertson hopes local stores will also carry the book. A website has been set up, as well as a Magnificent Millie Facebook page, where people can learn more about the book and where to purchase it.
“It sends such a powerful message. People are going to love the book because they loved Millie,” Patterson says. “Also, there are so many people that have lost children that don’t know how to talk about it and don’t know how to deal with it. I really hope that this opens a window for them to be comforted by the story and to know that they’re not alone.”
ANOTHER MILLIE CHAPTER
Aside from being a Heart Warrior, Millie was also nicknamed Baby Shark by her parents. Since Millie’s death her mother has found comfort in drawing sea creature pictures.
She takes the pictures to a tree in Frost Park in Yarmouth that the town planted in Millie’s memory. Some of Millie’s ashes were spread when the tree was planted. Here she shows Millie the pictures and sings songs to her – albeit through tears because she misses her daughter so much.
The photos are colourful, goofy and fun and drawing them makes her feel closer to Millie.
Not yet ready or able to return to work, Robertson says there are very few places that make her feel comfortable and safe. But one of these places is Sunrise Printing, where owner Garth Wyman welcomed her if she just wanted to hang out or help with printing projects. When he saw her sea creature drawings he printed her some as cards, and he's offered to put the images on other apparel, which Robertson may explore.
Robertson, and her husband, have decided to use the cards as a fundraiser for the SickKids Foundation, which is raising money for state-of-the-art improvements to the hospital.
Also, if she raises $3,000, a memorial plaque bearing Millie’s name will be displayed at the hospital and Millie's parents would really like to see that happen.
Robertson had a few friends say they would buy some cards and when she put a posting on Facebook seeing if anyone else was interested before they put an order in, she couldn’t believe the immediate response.
“It went crazy. I sold hundreds and hundreds of cards,” she says. She is donating 100 per cent of all profits to the hospital’s foundation and has set up an Etsy shop online where people can buy the cards. A Facebook page – Sea Creatures for Baby Shark – contains more information about the cards and how to purchase them. The cards include an insert about Millie’s story. The cards are blank inside so people can use them however they wish.
“I’ve been having a hard time being without Millie,” Robertson says. “So it's good for me to have some direction to focus on.”