3:30 a.m. May 3, 2019
I am sitting in the hospital room in the dark. My sister Roseanne is sleeping in a nearby chair and our youngest sister Lisa is lying on her bed, between us.
She is dying and I’m listening to each desperate and difficult breath she takes, hating, HATING the fact that she must go through this.
May 6, 2019
This was my baby sister, the surprise my parents weren’t expecting, the special needs child they hadn’t anticipated and ultimately, the centre of our family universe.
I was 10 when I first saw Lisa, sleeping in her crib like any other baby, even though our mum had explained that babies with Down Syndrome look a little bit different from other people.
For me, the bigger issue was that she was a girl, when all I really wanted was a brother!
Because it was the ‘70s, it had been suggested that my parents not take Lisa home, that they put her into an institution and forget they’d ever had her.
Luckily for all of us, they did none of that and it wasn’t long before Lisa had established herself as a key player in the family dynamic.
Early on, Lisa and I developed a special bond as the bookends of the family and for her first couple of years I spent my summer holidays babysitting her until I was allowed to take on a paying gig in Grade 8.
Lisa went to daycare at age two which helped provide the early stimulation that allowed her to do so much. That was augmented with ‘classes’ instructed by Roseanne, who was happy to have a willing victim for her early educational experiments.
Ultimately, Lisa learned to read and wrote countless notes, stories and love letters to the many people who orbited through her life.
She had favourite TV shows, could hold her own in any sarcastic exchange and was in no way afraid to voice her opinion.
Her birthday fell right around the time of the Jaycee Fair and I used to take her there as her present. One year, she and I took the train to Canada’s Wonderland and we had a great time – she especially as she was much more into rides than I am.
Lisa was bright enough to be aware of her ‘differentness’ and sometimes struggled to fit in with her peer group, but the one person who could do no wrong was our mother, with whom Lisa spent much of her life.
Fortunately, my mother had the wisdom to move Lisa into a Community Living group home a few years before she died, but the day our mother had passed away was the absolute darkest day in Lisa’s life.
That was almost nine years ago, and things were never the same for Lisa after that. Roseanne and I maintained the Sunday lunch outings that we’d been doing for years with her and our mother, but they were never the same for Lisa.
Five or six years ago, we began noticing some strange and frustrating behaviours from Lisa which we attributed to her lifelong stubborn streak, but it eventually became apparent there was more going on.
As it turned out, Lisa had a form of Alzheimer’s, which particularly afflicts those with Down Syndrome.
That disease eventually robbed her of her ability to walk and as anyone who has seen someone suffer through Alzheimer’s can attest, slowly robbed her of herself.
A while back, before Lisa lost the ability to communicate with us, Roseanne had asked her a simple question: “What would you like people to know about you?”
Lisa simply replied: “Be nice to me.”
And for the most part, people were nice, throughout her life; a life which I can’t imagine not having been a part of.
Everyone in our family has benefited from having known and loved Lisa and she has taught us all so much over the years.
But, Lisa could be a brat. She had our father wrapped around her little finger and could tear a strip out of you when things weren’t going her way. She got into mischief. One time she called the police to our house. Eventually, when my mum loosened her grip, Lisa was able to get on the city bus herself and head to Tim Horton’s or wherever.
All things considered, she had a pretty good life.
But, as Alzheimer’s tightened its nasty grip, Lisa’s control over that life disappeared.
A couple of weeks ago she developed pneumonia, which we at first thought was treatable. It wasn’t.
Because Lisa was relatively young and her heart was strong, we were prepared for a long process and on May 3, we believed it would be days before Lisa would succumb.
That morning, Roseanne went home from the hospital to run some errands, have a shower and do the things you need to do during these long vigils.
Once she got back, I left, but had only been gone half an hour or so when Roseanne called to tell me Lisa had quietly slipped away.
We were all shocked, but so grateful it had been so fast and painless. And, far from alone, there were several people in the room, including one of Lisa’s favourite Community Living workers. Gentle conversation was going on around her as our baby sister drew her last breath and by chance or design, our great-niece Skye, who shares Lisa’s middle name, was also in the room.
There are no words to express our gratitude to Community Living Chatham-Kent who have been so much a part of Lisa’s life, and to the staff of Chatham-Kent Health Alliance who were so kind during Lisa’s final days.
Most importantly we are grateful to the community at large for accepting and embracing Lisa for who she was.
We will miss her greatly.