Editor’s Note- This weekend, more than 100 Beer Stores in the Ottawa area will be participating in the Returns for Roger Neilson House Bottle Drive. This annual initiative helps to raise important funds for Roger Neilson House, a pediatric residential hospice that welcomes families with children/youth who are living with a life-limiting illness. The Sens Foundation reached out with this touching story that highlights the importance of Roger Neilson House and the valuable role they play for families in our community. If you have empties, make sure to return them this weekend. Or if you want to make a donation to the Sens Foundation directly, follow this link.
WRITTEN BY- Rick
The happiest moment of my life came on June 22, 2018, at the Roger Neilson House – a place that, I must admit, I didn’t know too much about, but a place that I knew I never wanted my children to ever have to go to.
As an employee of the Beer Store, in the Ottawa District, I’d done my part to help raise money for the RNH for about 8 years, every August and September. I’d ask customers if they’d like to donate their empties for sick children, or if they’d like to leave a dollar for kids in palliative care. But, most of what I knew about RNH was what the poster that hung in our lobbies said – that it helps hundreds of children and their families in the Ottawa area, who are facing life-limiting health issues.
I honestly thought that there were hundreds of dying children in this place, at any given time. It sounded like the saddest place on earth. It definitely sounded like a place I hoped I’d never have to be in.
On June 2, 2018, my wife, Shelby, and I welcomed our daughter, Olivia, into the world. Unfortunately, she was born with an extremely rare and severely life-limiting metabolic disorder called Zellweger Syndrome. After about two weeks spent at the Children’s Hospital of Eastern Ontario, Shelby and I were given this diagnosis, and we were told to prepare to lose our daughter very shortly.
Staff from the RNH met with us. They invited us to stay at RNH for as long as Olivia lived, as an option. At the time, Olivia was so reliant on her breathing apparatus, which could not be used at RNH, that we thought she might only live for 20 minutes once we left her hospital bed. Because of this, we weren’t sure if it was worth moving all our things from CHEO to RNH, but we agreed to go on a tour first, to help us decide.
I was astonished to find out that RNH only has room for 7 patients at a time. Most of the patients, though they weren’t expected to live into their adult years, weren’t necessarily on their deathbeds. Most of them would stay for days or weeks at a time, often when they needed special treatment, or just to give their parents some support. Most of them were laughing and smiling and playing and living.
The staff showed us the room that they had for us. It looked like a king suit at a five star hotel. They welcomed us to bring Olivia for her remaining time. As soon as we saw it, we knew that it would make our family so much more comfortable.
We took Olivia to RNH and, somehow, she lived for three entire days without her breathing machines – machines that had made it almost impossible for us to hold her, or cuddle her, or bathe her without it being a major ordeal.
They were three precious, beautiful days. We got to hold our baby. We got to cuddle with her – we were even able to have her nap in the bed with us. We got to give her a bath in a huge tub.
We didn’t want to leave the room, because we wanted to soak in every single second with our girl. At the RNH, they cooked us meals and brought them up to our room. There was always coffee and drinks. Anything we needed. We were able to have our friends and family in the suit. We never had to leave our baby’s side. It was so comfortable that we often forgot why we needed to be there. It really did feel like home.
Social workers and doctors and nurses came to check on us all, every few hours. They made beautiful little keepsakes for us, they sent a professional photographer to the room, and they made sure that our three-year-old son, Dezmond, was playing, having fun, and coping with the situation as best he could.
Dezmond was proud to be a big brother from the second he saw Olivia, but at CHEO, he couldn’t really bond much with her. On June 22, we were watching television in the family room of our RNH home. I was holding Olivia and I was lying down on the couch, hoping to have her fall asleep on my chest. Dezmond stopped me and said, “I want her to lay on my chest!” Our son always gets what he wants, so we obliged.
The happiest moment of my life was watching Dezmond lay on the couch, with his three-week-old sister lying on top of him. He had the biggest smile that I’ve ever seen. He was so happy; he was so proud. Just when I thought the moment couldn’t get any better, the two of them fell asleep together, and had an hour-long nap, embracing each other.
I now fully understand what the RNH is. It is whatever families like ours need it to be, when they need it most. It is a place where memories are made, as joy and love overpower fear and sorrow. It is a place that my family and I will forever cherish our time spent at. It is a place that we needed. It is a place that supported us, and continues to support us with it’s many bereavement programs. It is a place that helps so many families in our community far more than we needed it to help us, in our short time there.
It is a place that would not exist, if it weren’t for people like you, doing your part, big or small, to help raise funds and awareness.
On behalf of my family, from the bottom of our hearts, thank you for everything that you do to support the Roger Neilson House. It’s because of your efforts that I got to experience the happiest moment of my life.
