At Emily's house, Bruno and Marlene Geremia and twins, Alexander and Daniel, surround Matthew with love.
Matthew Geremia was a Sinatra fan. And though his parents and younger brothers kept him happy and smiling, it was Ol’ Blue Eyes that could always put Matthew at ease.
Born at 27 weeks, and diagnosed with cerebral palsy, a life of ease was not in the cards for Matthew. But he was lucky enough to be raised by loving and attentive parents, Marlene and Bruno, who filled the Geremia house with more than just music.
“We always understood the value of home,” says Marlene Geremia.
“We both grew up in caring, happy environments in which the whole family enjoyed being together. When we decided to have children, we wanted to lay that same foundation.”
And while Matthew’s diagnosis demanded considerably more attention than in other homes, it also underscored the importance and impact of unconditional support.
“We tried our best to keep the mood light and positive,” says Bruno.
“But it was the sense of trust and teamwork in the house that made for a lot of happy memories for Matthew and our twins, Alexander and Daniel. I believe that the love and care that we all shared helped Matthew to live much longer than expected.”
Matthew was well into his teenage years when his health began to worsen significantly. And though he was always non-verbal, there was no question in the mind of the Geremias that Matthew would want to spend his final days in the comfort of home.
After a prolonged stay at Sick Kids Hospital, accommodations were made to bring Matthew home, to live out his life according to plan. But with the tumult of nursing staff and medical equipment that were needed to keep Matthew comfortable, the Geremia house no longer felt like home.
It was suggested to Bruno and Marlene that they take a tour through Emily’s House Centre, a Toronto-based facility that exclusively welcomes children with life-limiting illnesses.
Founded in 2013 as an operating division of the Philip Aziz Centre For Hospice Care, Emily’s House filled the need for a facility that could offer parents a break, while their children received 24/7 respite or palliative care, in a non-clinical environment.
But Emily’s House is so much more than that.
Dr. Adam Rapoport, Medical Director of the Paediatric Advanced Care Team at Sick Kids Hospital and the Medical Director of Emily's House explains, "Anyone who has spent time in a hospital knows about the beeping and overhead bells, the constant disruptions and the lack of privacy. When it comes to care focussed on maximizing comfort at the end of a child's life, different factors become a priority when considering the ideal setting.
"At Emily's House, patient and family rooms were designed to promote feelings of warmth and comfort, while ensuring that the highest quality palliative care can still be provided."
For residents and their families, Emily's House truly is a home away from home. Founding member and CEO Rauni Salminen had exactly that in mind when she envisioned the design for the facility.
“We knew that we wanted to build a child-friendly environment,” says Salminen.
“And the house we saw on Jack Layton Way had great potential. It was on a big lot, in a lovely part of Riverdale … but we were determined to design the inside like a home.”
That feeling of home hits you almost immediately upon entering Emily’s House. Big windows flood the space with light, and a turn to the right leads you into a huge, collective kitchen space. The kitchen is the social hub of the House and the scene of boisterous meals, family gab sessions and epic parties.
“The minute we walked into Emily’s House, I felt a sense of ease,” says Marlene. “It just felt like home. I was still nervous to see how Matthew would respond upon his arrival. But when we saw what the staff had done to decorate Matthew’s room, I felt like I was going to melt …”
One of the nurses had hung a musical mobile above Matthew’s bed, and the incredible staff and volunteers had decorated the walls with posters of Frank Sinatra. So Matthew was at ease from the very first moment.
With its Sinatra posters and Blue Jays memorabilia, twin brothers, Alexander and Daniel, loved to hang out in Matthew Geremia's big, bright room at Emily's House.
For over seven months, Emily’s House provided care for Matthew and a quality of life that he wouldn’t have found elsewhere.
The facility is large enough to accommodate 10 patients at a time comfortably, and Matthew had an ample-sized room with his parents occupying the adjoining room. The family was able to have private moments together, playing board games and watching movies.
But they always knew that the dedicated care team was just outside their door.
And with the rooftop garden and barbecue, sibling playroom, and outdoor patio space, there were plenty of places for the family to socialize with the staff and other residents.
“Our twin boys loved being down at Emily’s House with Matthew," says Bruno.
"And we were able to do things as a family that we would never have been able to do elsewhere. From epic Halloween and New Year’s Eve parties, when we kept Matthew up past midnight, to a ‘Fedora’ party, where everyone wore fedoras in honour of Frank Sinatra.
"We felt like a family … when we most needed to feel like a family.”
With Matthew dressed as Sinatra and the rest of the gang in costume, Emily's House allowed the Geremia family a chance to party and make lasting memories.
Once it was clear that Matthew was nearing the end of his journey, the nursing staff helped to guide Bruno and Marlene through the process. In those final moments, Matthew was wrapped up in a hug blanket, upon which they had all written messages of love. A light rain was falling outside, and music played quietly on the radio as they all held hands and took deep breaths.
“Matthew opened his eyes in the last minute,” recalls Marlene. “It was as if he was saying thank you. And I love you.”
And the song that played as he passed peacefully was a Sinatra tune … called, "That’s Life."
The team at Emily’s House still feels like family to Bruno, Marlene and the twins.
For the Geremias, the experience that was afforded to them over those last months of Matthew’s life was invaluable. It allowed them the luxury of a home away from home.
Both Bruno and Marlene remain active advocates for Emily’s House, sharing their story and their gratitude, and encouraging continued public funding of this life-affirming facility. Please visit Emily’s House should you wish to support their efforts with a donation.
