For board member and long-time supporter Natalie Clydesdale, hydrocephalus has always been part of her family’s story. Her younger brother Adam, now 29, was born with the condition. His journey surgeries starting at just four months old, countless hospital stays, and the resilience he has shown through it all has shaped Natalie’s life in profound ways.
“Growing up with Adam gave me a deep understanding of the challenges and isolation families can feel,” Natalie shares. “I became involved with Hydrocephalus Canada because of him. It’s been an incredibly rewarding way to honour Adam and advocate for the community.”
Natalie recalls that her role as a sibling often blurred into that of caregiver. With eight years between them, she found herself offering protection, support, and a unique kind of love. She and her other brother Lukas were given every opportunity, but their mom’s time and energy often needed to focus on Adam’s complex medical needs. Extended family, especially grandparents and an aunt played a crucial role in ensuring Natalie and Lukas always felt surrounded by care.
Now a partner and mother herself to Darcy and their sons, identical eight-year-old twins, Matthew and Daniel, and baby Callen, Natalie reflects with admiration on her own mother’s balancing act.
“I am not sure how she managed it all, it seems impossible. But she did. Looking back, I don’t see any of it as negative. It gave me perspective, empathy, and a deep appreciation for the balance my mom tried so hard to maintain. And today, Adam is an amazing uncle to my boys!”
The lessons Adam has given Natalie are lasting ones: patience, resilience and unconditional love. There were times she felt anxious or overwhelmed by his medical needs, but those emotions became part of her own growth. “He has shown me what it means to keep going, even when life throws huge challenges your way,” she says.
Today, Natalie and Adam remain close. They spend summers at the family cottage, celebrate birthdays, and treasure everyday moments together. As Natalie grows older, those quiet, ordinary times with her brother have become the most meaningful of all.
Her advice to siblings of those with hydrocephalus or spina bifida is heartfelt:
“Give yourself permission to feel everything: the love, the fear, the frustration and the joy. It’s not always easy, and that’s okay. Find ways to connect with your siblings that are just about fun and laughter, not only medical needs. And remember that your voice and experience matter too you are an important part of the family’s story.”
