I’ll get to the significance of the ‘HEY’ shortly. Let’s start with the ‘W’ word. That word is wheelchair. I have never though of the word wheelchair as being a particularly happy word. It is usually associated with a negative condition. As in “My grandmother was confined to a wheelchair towards the end of her life.” That’s a typical wheelchair statement. When the word wheelchair was associated with my daughter it took on a whole new meaning. It became a symbol of my grief. I could barely bring myself to say the word. When my girls were 3 I attended a workshop entitled “How to Buy Your Child’s First Wheelchair”. Honestly, I would rather attend a session called “How to Poke Your Eyeballs Out With a Fondue Fork” – it would be less painful. I actually gave some feedback to the social workers who ran the workshop. I told them that it was a very informative session – I learned a lot! – but could the title be a little more positive? Something like “Your Child’s Mobility”?? They humoured me…
My first encounter with grief came when I was 22 and my father was almost 47. Most little girls have their dads up on a pedestal. Mine was on top of the CN Tower. And still is. Funniest, smartest man I know. I grew up and realized that – yes, I’m lucky – he’s a good father and also a good man. He had a heart attack when he was just 46 years old. He was recovering nicely in the hospital when 9 days later he suffered a stroke. It affected his brain in a couple of ways – he lost his speech and ended up in speech therapy for 2 years, he lost his short-term memory and his mental processing was impacted and he was unable to continue to work in his career. He had to be on long-term disability from then on. I had gone away on a vacation – he was doing well when I left. He had been in the hospital for about a week. When I returned my family told me about his stroke. It was late at night so I called his hospital room to speak to him and he tried to talk but I couldn’t understand what he was saying. The next day I went to the hospital to visit him. I don’t know how he knew I was walking down the hall towards his room but as I approached, he suddenly leapt out into the hall, arms widespread, big smile on his face and yelled “HEY!”. It was pretty much the only word he could speak.
That HEY was meant for me – he was saying “it’s ok – I’m going to be ok”. It was also meant for him – looking back it has become the symbol (for me) of his attitude in the face of tremendous grief. Essentially, his life as he knew it was over. But he decided to carry on and live his life with positivity – intentionally. He got up every day, shaved, showered, dressed, slapped his after-shave on and really made the best out of life that he could.
So there I was 17 years ago – identical twin daughters – and one is born severely disabled. She’ll never walk, talk, feed herself, she has a g-tube in her stomach through which she “eats”, she wears diapers and is completely reliant on others for her care. She also has a pretty great attitude – happy, great sense of humour, laughs a lot.
I had to find my HEY.
I remember when the girls were young – they were both still confined to a stroller. I would take a walk down Queen Street. Every second person is pushing a stroller down that street it seems. When a double stroller approached me, I would automatically look to see what type of children were in that stroller. A lot of the time it’s a one-year-old and a three-year-old. Sometimes it’s twins. If I saw a set of twins I would position an imaginary knife pointed at my heart. If it was a set of girl twins, I would push that knife in. If it happened to be an identical pair, the knife was plunged right in. I once spent 20 minutes wandering around Toys-R-Us – crying – after spotting a perfectly adorable, healthy pair of identical twin girls. I sought it out. I “had” to look. We do this to ourselves. It’s like when you have a sore tooth and you poke it with your tongue, or you keep thinking about that prospective client that chose to go with a different service provider. Or you madly search Facebook and Instagram for a glimpse of your ex-boyfriend’s new girlfriend. OK – maybe we don’t all do that….
One day, I spotted a double stroller approaching. This time, a voice inside my head said “just don’t look”. It was my voice – just a wiser version. So I didn’t look. And there was no knife, no pain. I remember smiling and laughing out loud. From that moment on I decided to look away from a painful thought when it comes into my head. It’s not denial. I started to recognize that I have the power to choose how I feel.
I talked to my dad recently about that. The summer he turned 69 he shot two hole-in-one’s 6 weeks apart. I said to him “it makes sense, though, doesn’t it? You were in this state of thinking that anything is possible, you shot a hole-in-one. Of course it could happen again!” He agreed. He went on to say that when he putts, he believes every single time that the ball will go into the hole. And it usually does.
I learned to embrace the ‘W’ word. There is a time of about 6-8 weeks between purchasing the wheelchair, and having it delivered in it’s final customized form. I kept a picture of the model that we had chosen on my fridge for those 6-8 weeks and looked at it every day. I came to accept this symbol of grief into my life, intentionally re-framing how I thought about the wheelchair. It became an extension of Quinn. Emma – her twin sister – came up with a stylized version of the accessibility symbol (the outline of a person in a wheelchair) with a crown on top. It symbolizes Quinn. She carved it into our pumpkin last Hallowe’en. We decided a few years ago that when they turn 18, she and I will get it tattooed somewhere on our bodies – for me I have to find the least wrinkly spot. We would have Quinn tattooed as well but I’m afraid that someone would call Children’s Aid. The tattoo will be a badge of honour for me. I’ve achieved a state of embracing this part of my life.
And so I bring this living with intention position into my business. I believe that I am successful and things will work out for me. And I know that whatever happens, HEY – I can choose my view.