Eamon was more than his disabilities
In Eamon’s twenty years, despite being non-verbal, he touched countless people by living a life beyond words. His cruisy nature and love for simple joys speaks volumes about living an enriched life, even when facing vast challenges.
“He was a real chilled-out sort of guy,” says his dad, Glenn. “He knew exactly what he liked and didn’t like, and even though he was non-verbal, he could absolutely communicate.”
Eamon’s world was never going to be easy. “He was diagnosed with disabilities at about six months old. We always knew that he was going to have a massively shortened lifespan,” Glenn explains. But that didn’t stop Eamon from teaching everyone around him the value of simplicity, patience, and aroha (a word with layers of meaning including concern, compassion, connection, and love). “It’s almost like he knew—he was thinking, ‘I’m only going to be here for a short time, I’m just going to take it easy and chill out.’”
Bravery every day
Eamon’s brave journey was filled with immense health struggles. From birth, he needed full-time support and he endured multiple hospital visits each year. His epilepsy caused daily seizures, and he had visual and other impairments. He was reliant on others for his every need.
“He was the highest grade five for cerebral palsy,” Glenn shares. “One of his disabilities alone would’ve been life-defining for most, but he had multiple disabilities at the highest end. It was such a challenge navigating the medical system when he couldn’t be ‘fixed’ and didn’t fit the system.” His last five days on palliative sedation therapy were the hardest, “That’s the hardest thing in my life because obviously we had been trying to protect him for twenty years and then the final bit we couldn’t protect him.”
Eamon moved into necessary full-time care at eighteen months old. “That was hard because society can be judgmental. It was never an issue that he had a disability—it was the profoundness of his disability. Having him at home meant neither of us parents could work. He had to be turned multiple times during the night. It wasn’t sustainable,” says Glenn. “But we visited him most days, he was always a big part of our lives.”
Despite incredible hardships, the family’s love and dedication has never wavered. The journey with Eamon wasn’t just his—it was theirs too. “As a parent, it breaks your heart because it’s a life sentence for Eamon, but it’s actually a life sentence for his brother and parents as well.”
The gift of simplicity
In the middle of the difficulties, there were moments of pure joy. Eamon’s love for the outdoors in spring and autumn brought him happiness. “He loved the sense of touch, the sun on his skin, and the feeling of motion when we walked with him around the neighbourhood,” Glenn fondly recalls. “He just lived in the moment.”
Eamon’s greatest joy was his beloved cup. “He was paralysed on one side and could hardly use the other, but he could hold that cup. It was his thing, it’s like it was just his Nirvana” Glenn says.
The family’s fondest memories of Eamon are connected to simple pleasures. His ability to drink from his own cup, his love of hot chocolate and Whittaker’s milk chocolate, and the taste of pureed red meat brought him joy. “He had a nose on him like a bloodhound for food. Red meat was his favourite,” Glenn says. “In his last six months, that’s all he wanted, and it made him so happy. The greatest gift Eamon gave me by a country mile is simplicity, just to live a simple life. He was the most awesome person I’ve ever met. I just miss him every day.”
More than the sum of his parts
Though Eamon never spoke, his life is a loud voice for change. Through his lived experience, his family and others learned different perspectives and now advocate for greater disability support awareness. “People like Eamon often go unnoticed in society,” Glenn explains. “But he taught us all about kindness and that time is the most precious thing we’ve got. We all only have a limited amount of time on this planet.”
Eamon’s impact reaches far beyond his immediate family. His story has moved people in the disability sector, even reaching senior officials. “They came to Eamon’s send-off. They flew up to pay their respects. It’s incredible how much of an impact he had without saying a word.”
Eamon’s legacy lives on through the love he shared, the lessons he still teaches, and the continued efforts to improve the lives of disabled people. His family remain passionate advocates for a more inclusive society. “Unless you’ve had a close family member who’s disabled, people don’t understand. People pity them or feel sorry for them, but their disability doesn’t define them. They’re all greater than the sum of their parts. They all have strengths. Eamon’s strength was to teach us all to be more compassionate.”
Eamon’s life shows us the power of treating each other with kindness and highlights the chilled but mighty strength of those facing enormous challenges. It’s a call for our country to be more accepting and for us to each do our part to support others.
You can make a big difference today
Notice and include everyone. It’s essential for disabled people to engage with the community because it enriches not only their lives but the lives of everyone that meets them too. Eamon lived at Enliven Disability’s Rowan House for the eighteen months before he died. You can give a brick and help build the new accessible Rowan Apartments. “Whatever you give, you’ll get back at least double,” says Glenn, “It doesn’t take much. The little changes that you can make a reality make a big difference to their life.” Every brick means so much to younger people in our region with complex physical disabilities, and even more to their families who love them. Give your brick now at www.giveabrick.org.nz
