Hardwood Lake – Loosing a child is something so unimaginable most people shrink from the thought of it, but Galen and Patricia Horst walked through this very painful valley when their 14-year-old daughter died while awaiting a heart transplant, and now they are sharing their story of grief and hope in a new book.

“Even before Amanda died, I had this sixth sense someday there would be a book about Amanda,” her dad said. “Shortly after we moved back to the farm from Markham, I felt if anyone was going to write a book, I should do it, because I know how it happened.”

It is a story many remember well, for the image of Amanda on her hilltop farm in Hardwood Lake dressed in her conservative Mennonite dress and with a kerchief on her head as she prepared to go to Toronto, a city of technology, bustle and the centre so in many ways of a modern, secular lifestyle so different from her own, captured the attention of the Ottawa Valley and beyond. There was hope, there was simplicity and there was faith. There was also prayer for a donor heart, a successful surgery and a return to the farm.

However, this was not to be, for Amanda died just a few weeks after the family packed up and moved to Markham. Her last night was spent singing hymns with newly found family friends in an old barn. She collapsed at the house and although her parents performed CPR and she was rushed to the hospital, her heart had simply given out. It was June 21, 2019.

Chance and Change was released before Christmas and tells not only Amanda’s story, but the story of her family and her parents who had built a home for their seven children on a farm they named Providence Homestead and then had to leave it in hopes of obtaining a new heart for their daughter at Sick Kids in Toronto. It is remarkable in its openness. For their journey was one which brought unimaginable sorrow, fear and pain and they don’t shy away from expressing this.

The haunting recounting of when Galen and Patricia were told at the Children’s Hospital in Eastern Ontario (CHEO) their daughter would need a heart transplant and they would have to move to Toronto to await one – a wait which could be as long as two years – is honest and brutal. The fear of something happening to their other children following Amanda’s death when they disappear from sight on the family farm is at the same time understandable albeit surprising. Galen’s words at the funeral of their daughter are heartbreaking, poignant and moving. Patricia’s acknowledgement it is still important to speak about Amanda after her death with others is strikingly honest. Their unwavering faith and desire to speak to their faith amidst sorrow is inspiring and unshakable.

The book also lets Amanda speak in her own words through her gratitude journal – started in 2019 and found after her death – speaking of her joy in the simple things of “goofing off” with her sister, enjoying the quietness of a winter night and playing music. They also show Amanda was very much a young teen girl, wishing she could be like other girls, and not feeling left out when they talked about school and other things.

But Amanda, a reader and budding writer, also had a maturity beyond her years as depicted in her journal.

“I think I have more or less gotten used to the idea of moving to Toronto,” she wrote in 2019. “At first, that was what I was more worried about. But now the actual transplant is what seems BIG. How is it even possible for someone to go through it? And the fact that we always need to be on call to rush off to the hospital, no matter who’s around or what’s going on. I really need to keep asking God for patience and for Him to take my worries away. Thanks, God, for being there.”

The book is available in various locations, at Providence Homestead and through Amazon.

Amanda’s Story

In so many ways, her story was the story of a young girl facing a terminal diagnosis with grace, faith and hope.

“Something about Amanda’s story really touched people,” Galen said. “People were encouraged. I think Amanda’s life blessed them. And I wanted Amanda’s life to keep being a blessing and writing this was therapeutic in a way.”

The book is a very real glimpse into the life of this young girl and her family and in many ways a reader feels like they are delving into a different world, perhaps a little like Amanda and her sister, Vanessa and their friends did when they were dressing up as Victorian ladies or recalling the days of Laura and Mary of Little House on the Prairie fame. For the Horst family are Mennonites – not old order Mennonites who wear plain colours and drive horses and buggies – but Mennonites who dress in conservative long dresses where the women wear caps and the men dress plainly. They look different and they are different, but in many ways, Galen and Patricia are more different than most. They took on a new spiritual journey as a young couple which led them from their Cobden/Beachburg area childhood home to a new home in Hardwood Lake on a hilly farm. Galen is candid about how he was absorbed in establishing his business as a young man.

“Financial progress and worldly ambitions had taken precedence over most other concerns,” he said. “From time to time, it occurred to me in a hazy way that focusing so much on my business might be stealing from other important things that should have been more pressing, like time with God or family life, but I did little to counteract the moving face of my misplaced priorities.”

Then Galen had what most Evangelicals would call a conversion experience. 

“As the truck continued rumbling along a country road, I closed my eyes for two seconds and prayed a simple prayer of faith, ‘Lord, I believe’,” he writes in his book.

His world would never be the same as he delved deeper into the Bible, the family embarked on homeschooling and eventually moved to Hardwood Lake to be closer to a church they had come to love and call their own, Hillview, located in Bancroft.

It is this background of a family living a simpler life, homeschooling, homesteading, growing their food, taking care of their animals and with Galen operating a smaller machine shop from the farm in which Amanda first noticed her increasing chest pains. One day while helping her father with chores in the early morning hours, Amanda could barely walk to the barn. Galen contemplated calling an ambulance, but she improved, so her mom took her to the nurse practitioner the next day. Things “fell through the cracks” for about half a year, and they were taken by surprise when Amanda was diagnosed with restrictive cardiomyopathy. The only option was a heart transplant. Hardwood Lake is about four hours from Sick Kids – if the weather is cooperating – so the only option was to move close to the Toronto-based hospital and wait.

Going Public

At the time, family rallied around the Horsts as they prepared to sell their animals, pack up the farm and move. There was also media interest in the story and Galen, who writes a blog on their Providence Homestead website, was very open about sharing their story. He wanted to not only share their faith and be an encouragement to others, but also to remind others of how important organ donation is.

I met Amanda in May of that year right before the family left for Toronto and her calm demeanor and gentle smile in the face of such a frightening diagnosis moved me deeply. She was petite and slim and looked healthy, but she could not walk far, run or do stairs well because of her heart. Unlike other teens her age, she wasn’t wearing flashy clothes or makeup or spending her time online chatting with friends. Instead, she enjoyed being with the animals on her farm – her family recalls she seemed to have a special gift with animals – and she loved to play the guitar with her sister. Amanda told me she was a little big scared about her upcoming surgery and the wait, but like her parents rely on faith, Amanda also has a quiet assurance of trust in God which gives her peace.

“To know we are in higher hands,” she told me that day on the family farm. “There won’t always be people visiting when we are in Toronto, but God will always be with us, so we will not be alone.”

Amanda knew so many people were praying for her, not only friends and family, but others who had heard her story and this encouraged her. She told me she liked to read and sew, loved history and would be working on a friendship quilt in Toronto with fabric from friends, family and others.

Amanda’s family completes the quilt she had planned to do with fabric from family and friends.

Amanda never completed that quilt. But her family did. They planned to enter it into a fair competition in 2020. It has flowers and a purple border. The flowers are from the fabrics of the people who loved Amanda, and like the flower garden her family planted in her memory, it is a reminder of a girl who loved a simple life and who was deeply cherished.

This book is also in her memory and tells her story in her own words and the story of her parents in their words in the way no other teller of the tale could do.

“This is not the ending people were hoping for and praying for,” Galen admitted. “We believe the Lord can heal and we long for that, but it doesn’t always happen and that is tough.”

When the family was preparing to leave for Toronto in 2019, Galen said he wanted to share the story and the journey as a testimony of his faith.

“We know one way or another it will all work out for good because that is what the Lord promised,” he said. “We want to share our hope and faith.”

In writing the book, he wanted to continue to provide hope, although he is very cognizant of the sadness of Amanda’s death.

“As Christians we have hope, but this world is actually a very sad place,” he said. “This is the story of many people. It is not that uncommon.”

Following Amanda’s death, the family went to a candlelight service at Sick Kids in Toronto in 2019 and this was a blessing for them.

“There are so many people who have lost a child. You are not the odd one that has lost a child in that group,” he said.

Unfortunately, due to COVID, these in-person candlelight services have not continued, but they are hoping one day they can go again and be with other parents in mourning and remembering, perhaps encouraging others as well. 

“I like talking about Amanda,” Galen said. “To talk about her and remember.”

The book just might be part of that in helping other families and telling Amanda’s story again. A story of a girl from a farm, who loved Jesus, had a sweet smile and who died with the heart Jesus gave her.

“Amanda had a special heart,” her dad wrote in the book. “The doctors said she had a misspelling in her DNA, but Jesus didn’t think so. He knew her story before He created her. Amanda was ready for a transplant, but she said once that she wished could keep the heart Jesus gave her. She lived her life with that heart.”

Chance and Change is available through Providence Homestead, Amazon.ca and at some area stores, including the Eganville Country Depot, Rosie’s General Store in Denbigh and Birds’s Creek Farm Supply in Bancroft, with more local retailers to come. It is also available through Amanda’s grandparents, Osiah and Lovina Horst in Cobden and James and Alice Snyder in Beachburg.

Amanda, at far left, singing German hymns at a barn in Markham. She died in hospital a few hours later.