This World Down syndrome day, WCAT chairman Jamie McCallum reflects on life with daughter Rosie and how his views have changed over the past 10 years.
Ten years ago this month, I sat on the train to Aberdeen, unable to get an internet connection to send emails, and started typing. I poured my heart out into an empty word document creating something that was to later be published in a national newspaper and become the habit of a decade of awareness-raising activity. It led to “viral” internet success, telly appearances and the honour of being a small part of the origin story of the now multi award winning charity – Wouldn’t Change a Thing.
Ironically, I find myself on that same train journey today, reflecting on the sometimes bleak, but mostly hopeful thoughts I wrote then, and whether my opinions or our reality has changed a decade on.
Back then I recall joining my wife’s parents on holiday in Spain. On the first day Rosie’s Grandpa was pushing her in her buggy and was approached by a stranger, smiling from ear-to-ear, uttering a phrase in Spanish that her Grandpa didn’t quite understand.
Google translate was to later inform us that he had said: “You are a very lucky man!”
Rosie has Down’s syndrome. At that time, I believed that our future as a family would be bleak. That we’d never have a “normal” life or do all the things that “normal” families can do. Never be “truly happy”.
Fast forward to our most recent family break last year – I found myself considering the many experiences that a decade ago I feared would never be possible. Utterly mundane things such as enjoying a few beers by the pool while the kids disappeared to go on the water slides. Or a coffee alone while the kids fended for themselves – albeit whilst they rapidly developed an addiction to arcade machines!
I watched as Rosie and her siblings independently swam, climbed and cycled together. Because, unlike my ignorant preconceptions of a decade ago, she was able to learn to swim, to climb and to cycle (well….kind of cycle – we’re still working on that!).
I was so crippled with worry ten years ago that our lives wouldn’t be normal. Our lives are not the same – that much is true – but I was wrong to think that “different” meant “worse”. Why, I wonder, were the connections between happiness and normalcy so strong in my mind? As if the only root to joy and fulfilment in life could be discovered by fitting the “peak-of-the-bell-curve-2.4-kids-white-picket-fence” existence that we become indoctrinated into our whole lives. I can state with absolute clarity and honesty as I write this today that Rosie’s arrival has been the root-cause of the most colourful and enriching experiences of our lives so far. Some of the best friends we’ve made and virtually all of the most important lessons and values that our family hold dear are all because of the very thing that sets us apart from “the norm”.
Our eldest daughter found herself in science class recently covering the topic of “chromosomal abnormalities” like Down’s syndrome. “I knew very little about it!” she laughed when she told us about the experience. Having never known anything else, Rosie’s siblings only see a sister – not a condition. As sibling relationships tend to be – Abigail’s attitude towards her sister swings daily from profound love to extreme irritation. Even so, I could see only despair in her eyes when I have explained days gone by – where her sister would’ve been taken away and institutionalised. Unloved. Uneducated. She pondered how different Rosie might be. Indeed, how different might she be without having known her.
That topic in science was a stark reminder that Rosie may have been present in that class where her condition, ergo the validity of her existence, was being spotlighted as a matter for discussion and debate. Whilst things have felt “more alike than different” through the primary school years, as her mathematical needs tend more towards money management than Pythagoras, and her literacy requirements pertain more to help her navigate the world around her than to critically evaluate classic literature, we feel a renewed sense of trepidation as we contemplate what secondary school might hold for her. One does begin to wonder where she fits in our traditional education system or whether she’d be better off somewhere else.
However, she firmly sees herself like everyone else and demands the same opportunities and experiences. So much so that a couple of years ago when we unexpectedly found ourselves having to have a frank conversation with her about “ableist discrimination” after she flippantly branded some of her peers with special education needs as “weirdos”. In a bizarre twist of fate – it appeared that Rosie, herself, had turned out to be the least inclusive member of our family!
People with Down’s syndrome have been around as long as humans have existed. We have learned from her. Her perspective is valid and refreshing and needed in this world. Unlike most of us, Rosie prioritises her emotional response to situations over worries about societal norms. She values human connection over material gain. These are just two of the reasons that interacting with her, and others like her, can be so refreshing and life affirming. I challenge anyone to state a case that society’s typical perspective is right, and hers is wrong.
As a family, it feels like we’ve come a long way since I wrote that first article ten years ago. Whilst what I wrote then was full of hope for the future, no crystal ball could have predicted the incredible experiences we’ve had. Even so, people often assume that, given the chance, we’d still jump at any opportunity to take Rosie’s Down’s syndrome away. How wrong they are.
We are all guilty of simplifying life’s problems and solutions into black and white choices. Seldom do we just accept that some things are too nuanced to be seen through such a simple lens. We foolishly wish away life’s challenges, postponing our happiness in pursuit of some fictional moment in the future where only “the best bits” remain. As inconvenient as the truth is – our challenges define our lives. Without the sour, the sugar wouldn’t taste so sweet. It all comes as one colourful package: take it all – or leave it.
Were I to take Rosie’s condition away tomorrow then I’d be taking away a humongous chunk of joy from our lives. It’s true, we’d also get rid of some challenges. But so too would we get rid of the absolute sense of triumph that we feel when those challenges are overcome.
Even if we could wave a proverbial magic wand and make Rosie’s Down’s syndrome vanish then the reality is that so, too, would the warm, loving, extravert and crazy personality that we’ve grown to love so very deeply. Gone would be those belly laughs we get from her take on the world. We’d have instant withdrawal symptoms from the loss of her diva-like “sass” and sense-of-humour. Because, the truth is, with her Down’s syndrome gone, she’d be gone forever too.
A decade on we see that this is the wisdom that our Spanish friend already foresaw for our future all those years ago. Who could argue with him now? He was right after all – Rosie’s arrival has made us a very lucky family indeed.
Read Jamie’s original article ‘Getting to Know Rosie’ from 2014 here