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Illustration by Drew Shannon
“Would you like to go see Rhys and take him for ice cream?” my dad asked; I froze. I love my younger brother dearly, but seeing him at his new long-term care home was something I wasn’t fond of doing.
Rhys is 14 and severely cognitively impaired, he was diagnosed with a rare genetic mutation at birth.
I’ve never liked seeing him in a group home. Long before he moved into a permanent facility he would occasionally spend a weekend at a temporary respite home. This allowed my parents to spend one-on-one time with me, their “typical child.” While I would be spending quality time with each of my parents, Rhys would be without his family, it just never felt right.
When I was young, I accompanied my mum or dad to pick him up at the end of our usually jam-packed weekend. As I walked into the group home lobby, an all too familiar scent of stale supplemental food and drinks overwhelmed my senses. An uneasiness overtook my body and I felt a sense of dread.
We would need to take a large elevator, made to fit wheelchairs and medical equipment, up to meet Rhys. This is where that dread and discomfort would come to a boil. My parents could tell that I was uneasy but I think they tried not to say much to avoid stressing me out even further.
I remember how the doors of the elevator slowly opened and our ears were enveloped with noise. Noises from the residents – as every child or teen is different from the last. As I grew older, a part of me knew this would be Rhysie’s life full-time one day.
As time passed, we continued using the home to have a “break” from Rhysie. But I slowly stopped coming inside. Then I stopped going along with them all together, saying goodbye at our home instead.
Recently, while visiting Rhys in his permanent group home to take him out for ice cream, I reflected on my feelings about him and this stage of his life. I helped load his wheelchair into the car, noticing it was a wheelchair that I didn’t recognize. I sat in the front passenger seat and looked at him in the back, where he was sitting without needing a booster seat. I try to always talk to him as if he were typical, not hoping for a worded response but to see his facial expression and his adorable smile. ”He’s gotten so big,” I thought. Rhys returned occasional eye contact and a smile as I looked at him, and I began to tear up. I felt terrible. So when my Dad asked if I wanted to take him into the ice cream shop, I was happy to go.
We arrived at Baskin-Robbins and went in. I held on to Rhys in his chair while Dad ordered. I was beyond anxious; I hadn’t been in public with Rhys for well over a year and a half. I felt watched by those around us in the small, crowded store.
Rhys loves to grab things and I had forgotten about this habit. SLAM! Rhys grabbed a metal chair, leaned it back and then let it go. The store went silent. Now, I was hypervigilant and held his skinny arms. Even with my light restraint, he broke free and grabbed a woman walking by. I apologized profusely, full of embarrassment.
After getting ice cream, we sat outside. At this point, I was distressed and wanted to leave the parlour and go home. My dad could tell that I was upset. He silently understood and let me be.
But then I saw a father and daughter walking along the plaza toward the ice cream store. The girl stopped at almost every shop and looked at the displays. The girl’s motions seemed oddly familiar. I noticed she was stimming and excited, behaving similarly to Rhys.
Watching those two flipped a switch for me. I wasn’t the only one in this situation: out in public with a family member with special needs. I smiled as I watched the father and daughter just enjoying their day and not focusing on what others thought. They acted just like every other “typical” family. It occurred to me that I shouldn’t let what others think about Rhys ruin our time together.
There is so much uncertainty with Rhys’s rare genetic mutation. We aren’t certain what challenges he will face in the future. Each time I see him, we have gone through so many changes, whether it’s his little mustache coming in or my growing independence as I move on to university. Rhys will always be my brother. We are family. There is no shame in that.
Owen McIntyre lives in Toronto.