Canuck Place parents, Petra and Rolf spoke to over 300 guests at the 3rd annual Gift of Love Gala in Abbotsford about their four year-old son, Nicolas, and the impact Canuck Place has on their entire family.
“Nicolas was diagnosed with Spinal Muscular Atrophy Type 1 in June 2013. He was only 8 months old. SMA is a neuromuscular disease that affects his ability to walk, crawl, eat, speak and breathe – he is 100% dependent on us for his daily needs.”
The couple looked back to the day of that diagnosis.
“Thinking back to the day we received the diagnosis at the hospital – it feels like it was so long ago and yet I will never forget that day. It felt like our worst nightmare had come true – we were devastated. We felt like we had fallen off a cliff. We felt alone, helpless and hopeless. We were angry. It just wasn’t fair. Our neurologist didn’t take away our hope. But we knew the statistics for survival were not in Nicolas’ favour. We were left wondering how short his life would be.
“There was no way to predict that this dark time in our life would lead us on a journey filled with challenges but, more importantly, so many incredible moments with our beautiful boy.
“Our day-to-day life is spent very close to home. Nicolas needs to stay as healthy as possible as the common cold can quickly escalate with his disease so we practice lots of hand washing and home sanitizing – particularly during cold and flu season. His older sister Isabel is currently in Grade One and upon coming home, washes her hands and changes her clothes prior to playing with Nicolas.
“We sometimes have to pass on activities for fear that Nicolas will get sick. Life in the winter can be very lonely. I guess you could say we don’t get out much.”
As Nicolas grew up, his personality shone through. Rolf shared a common saying by his son – ‘Today is the best day ever!’
“Talk about being in the moment, being present and grateful – this is how our son approaches each and every day. It seems like, for Nicolas, there are no bad days!
“This is the essence of Nicolas – a caring, bright, articulate, funny, curious and outgoing 4-year-old boy who loves cars, trucks, or anything that makes noise.”
Although Nicolas is unable to walk, crawl, or sit independently, he loves getting involved in activities whenever possible.
“My son’s spirit fills a room, continued Rolf. “Through his actions he displays bravery and inspiration. He doesn’t know it but, in everything he does, he reminds us that we need to embrace every moment and be grateful for all that we have.”
Petra and Rolf learned about Canuck Place shortly after Nicolas was diagnosed. At the time, they weren’t sure what Canuck Place was. They soon learned that it specialized in palliative care for children.
Rolf remembers the moment clearly. “Petra turned to me and said, ‘Rolf, they think Nicolas is going to die.’ Suddenly the possibility that we might lose Nicolas sank in.”
The family soon booked their first respite stay, but it didn’t go as they hoped.
“We came face-to-face with reality, someone else’s reality: a little boy who was the same age as Nicolas was there for end-of-life care. With all that we were going through and to imagine what that family was going through felt overwhelming – it was too much. We were anxious to get back home.
We weren’t ready to deal with these emotions, this new reality, and didn’t know how to allow the Canuck Place team to provide us with what we really needed: their support and guidance.”
It took over a year for the family to attempt another respire stay.
“We felt ready for Canuck Place and trusted they were ready for us,” explained Rolf. “They were and we were embraced by an amazing, caring, supportive group who were simply waiting for us to go through the process in our own way.”
“We’re so grateful for the caring community we found,” continued Petra. “Outside Canuck Place it’s difficult to participate in activities with other families that do not have children with mobility issues – I often feel like we just don’t fit in. Many activities are not designed to accommodate Nicolas’ abilities. This is where Canuck Place has such a huge impact on Nicolas and our family.
“Canuck place provides us with a safe environment to ensure Nicolas can fully participate in adventures we never thought would be possible.”
Support from Canuck Place also allows the family to simply take a break and just be together.
“Nicolas’ medical care can be labour intensive so being able to come to Canuck Place and have the nurses, doctors and volunteers step in is a huge weight off our shoulders and gives us a break. This means we can simply focus on savouring the time we spend together whether as a family or when it’s just Rolf and I. This time is a gift.
“If you could see the sparkle in Nicolas’ eyes and his endless smile he has on each and every visit,” said Rolf. “You would know that you are making an immediate difference in the life of some very incredible, loving children.
“If I could challenge all of you here to do one thing, it would be to try and find that one special moment shared with loved ones, no matter how small, no matter what day-to-day challenges you may encounter, so that you too can say,
“Today … is the best day ever.”
The 2017 Gift of Love Gala raised over $275,000 in support of Canuck Place children and families. Learn more at canuckplacegiftoflove.com