In memory of Fiona
Five years ago today my cousin Fiona died. She was 24 years old.
When Fiona was born she was just like any other baby and she grew and developed just like any other little girl. Until around 12 months old. It was then that her parents began to notice that some things just weren’t quite right. Fiona started to do unusual things, like throwing herself back in her high chair, clapping her hands constantly (which later turned into wringing them), and she never spoke. What followed were months of testing that stretched into years.
Finally, after a lot of effort and travel, she was diagnosed with Rett Syndrome, an extremely rare condition involving a problem with gene switches, with no known genetic links, that almost exclusively affects girls. (It’s complicated, and I could write tomes if I go into that, but you can read about it here.)
When my Aunt and Uncle got this diagnosis they were told “you might as well put her in a home here in Sydney and go back to Orange and get on with your life”. In response, my Aunt picked up Fiona, said to the doctor “I will never abandon one of my girls”, and took her home. She then devoted the next 20 odd years to caring for her.
There are women who are stay-at-home Mums, which means they have chosen not to go back to work. And there are other women who are stay-at-home Mums, because being a Mum makes leaving the house very difficult. I called in on my Aunt in Orange during the Easter before Fiona died, on my way back from a wedding in Dubbo (and I am so pleased that I did because that is the last time I saw Fiona alive, and I had a strange notion that it would be). When she opened the door I said “I wasn’t sure if you’d be home” to which she replied “Of course I’m home. I’m always home. I don't even pop out for milk”.
Prior to having kids my Aunt was an A-grade basketballer, who wasn’t the person you would have picked to give a disabled child. But her dedication and devotion was extraordinary. Then there was her friend Mac. If you had passed Mac in the street, you probably wouldn’t have known what gender she was. She wore her hair all cropped short, I never remember seeing her in anything but side-striped tracksuits, she smoked like a dragon and she talked rough. The story goes that she had once been engaged to a lovely fellow, but he died in an accident, and she’d been that way ever since. But every evening Mac came round, walked in the back door, and what she was there for was to help feed and bath Fiona. And she was a different person as she crooned to her.
Rett Sydrome is regressive, which means that sufferers lose even the skills they once had. So eventually Fiona could no longer walk, and the task it was to care for her only increased. Nobody really knew what her life expectancy might be. Then in 2004 she had a stroke and died.
I won’t write about the things that Fiona’s life taught those around her. I am sure she taught us all many things, including what it meant to give with no return, the blessings of being “normal”, the value of a life. But I don’t think we need to justify the life of a disabled person. When “normal” people die others often ask why they died, but it seems that when profoundly disabled people are born or die, people want to ask, or give some reason for, why they lived. But if we truly believe that their life is equal in value to any other life, then that shouldn’t be the case. And so Fiona lived for the same reasons that you and I live.
Sadly though, my Aunt (who is my Dad's sister) and her family aren't Christians, and Fiona's funeral, and the rest of that day, was probably the most tragic experience of my adult life to date, but this post is too long already for that. I keep praying.