Susan’s Story
JULY 12, 2022
My husband, Pierre and I have been married for almost 10 years. We have one child, a dog, and a cat – which makes for a chaotic house when everyone is inside! Pierre and I tried to start a family for almost four years before we were able to get pregnant with our son, Ewan. Like many, we have a busy life. We try to spend as much time outside as possible and I’m loving that I can introduce Ewan to activities such as cross-country skiing and paddleboarding. We also work hard at our family business, Humble Beginnings Brewing Co., where you’ll often find Ewan helping to sweep the floors or clean the windows.
Ewan was born November 9, 2017. We were so excited to finally meet our little boy who we had waited a long time for. One week after his birth, at our family doctor’s office, we were told that Ewan had cystic fibrosis (CF) – he had been diagnosed through the newborn screening. Our initial reaction was complete shock; we didn’t know much about cystic fibrosis, so we didn’t know what it meant for Ewan. My husband and I were both focused on what we needed to do for Ewan to keep him healthy and what we could do to help support the fight against cystic fibrosis.
Our CF journey is just starting and while it can be challenging, we are mostly grateful. We are grateful to have our little boy that is learning to be a strong, sensitive, and caring individual. We also have an amazing team to turn to for support. During the first week of Ewan’s diagnosis our family came to stay with us and provided positivity and strength that we needed to get through those first days. We were ‘Team Ewan’, and we were going to be an incredible force to be going up against cystic fibrosis! We knew that cystic fibrosis would impact our lives, but we also knew that we would try very hard to not let it define our lives. We look to find a balance between being careful and just being – this balance is something we struggle with now, and probably will forever.
We have mainly been involved with CF Canada through the Walk to Make Cystic Fibrosis History (participated since 2018) and through fundraising at our family brewery. We produce a special beer (65 Roses Red IPA) and donate a portion of the proceeds to CF Canada each year. Our brewery guests often ask about our connection to CF and we have begun to share our story with them, often seeing more generosity from them after sharing!
We have an awesome little guy that shows us the best way we can face cystic fibrosis is with strength and positivity. We love any adventure we have with him, from the very small to the very big. I can still remember a comment that I received from one of my friends when I first told them of Ewan’s diagnosis while we were still processing what it meant. She said something along the lines of, “everyone has something, at least you know what his is”. I still carry this message with me four years later – everyone has their own battles to face and knowing what those battles are helps us plan for how to deal with them. It also put our situation into perspective – this wasn’t something to dwell on unrealistically. It was just something we would deal with. We are lucky that we can take actions that help keep Ewan healthy and we can be advocates and fundraisers to continue to improve things for all individuals with cystic fibrosis.