**Note: The title and the idea for this post came from an interview I did earlier this year on the Pilgrimage Podcast with Joshua Luke Smith. To hear more of our story, you can listen and subscribe to the podcast here.**
Three years ago, our world was turned on its head – in what turned out to be the best way imaginable. After our beautiful son’s birth, we found ourselves suddenly faced with an unexpected diagnosis of Down Syndrome. In that one moment, our lives changed course completely. Being honest, I found the idea of this life – a life that was so far removed from the idea of the ‘perfect’ life that I had always dreamed of – difficult to accept at the beginning.
This image of perfection – the idea of the ‘perfect’ life, career, home and family – is so ingrained in most of us from childhood that it makes it hard to take when life inevitably doesn’t measure up. I had always planned out in my mind what my perfect life would look like, strongly influenced by media and western culture.
Then this boy came into our world, took my idea of ‘perfect’ and smashed it into pieces — remolding it into a different, better kind of perfect than I could have ever imagined.
I’m so thankful for this champion of a son and am so grateful we get to call him ours. He has made the last three years the best three years of our lives, despite all the hardships we’ve had to face and how different it has been to the life I always imagined.
As a young girl, I would lull myself to sleep by planning out my dream life. In my fantasy future I would travel the world helping people and making a difference as a photojournalist. I’d live a nomad life of going from one adventure to the next, before finally settling down into married life. We would have four kids (two of our own, two adopted – one little Vietnamese girl and a little boy from somewhere in Africa). We would live in a glamourous, exciting place (most likely Jerusalem, where I grew up) where we could soak up the sun for 9 months of the year, making music and changing the world together.
Instead, I ended up getting married halfway through my Uni degree, having a son with a surprise diagnosis of Down Syndrome three years later, and living in rural southwest England for eight years where it probably rains nine months of the year. At least. And – just to top it all off – I was then told at the age of 26 that a lump I had assumed was a clogged milk duct was actually an aggressive form of breast cancer.
Not exactly what I imagined as a young girl. Yet – and I can say this in all honesty – my life is beautiful. Although I’m still very much in the middle of my journey of conquering cancer, I’ve recently found a new appreciation for this life I’ve been given and how good it is. It’s messy, it’s hard, it’s nothing like the ‘perfect’ life and family I thought it would be. But I’ve realised that it is absolutely, 100% perfect – just a different kind of perfect to what I expected.
And, after eight years of living in the UK and finally accepting that we may never move back to my heart home of Jerusalem because of practical and financial reasons, it suddenly, unexpectedly all fell into place for us to move back! Just a few weeks ago we packed our house and our lives into six suitcases and finally came home. Seemingly impossible dreams can still happen.
Getting married and having our son were two of the best decisions I ever made, and if I could go back I would make the same decisions all over again. I honestly have loved my life until now – as different as it is from what I had imagined. I am so thankful for having the family, friends, community and homes I have had, both in the UK and in Jerusalem (along with our wider family & friends across the globe). And I am beyond thankful for our son.
He, and others like him, are so different to what the world calls perfect. From the time we’re given Barbie and Ken dolls as children, up through adolescence and our entire adult lives, we’re constantly being sold this image of perfection. An image that is – by the way – totally unattainable and unrealistic; according to this article, if a woman were to have the same body measurements as her favourite childhood Barbie doll, she would most likely be unable to menstruate and have to walk on all fours because of her wildly unrealistic body proportions. The other role models young girls have to look up to are the other extreme. Skeletal, androgynous, stick-thin models dominate every shop window, magazine and runway now. Yet, from a young age, one extreme or the other is what etches itself on our subconscious minds of what the ideal woman is – the ideal that most women strive to be and that most men feel like they need to end up with.
As we grow older, the image of perfection spreads to having to have the perfect life, the perfect career, the perfect home and the perfect family. This social pressure comes at us from every source imaginable: television, films, magazines, music, shop windows, billboards – not to mention, of course, the relentless barrage of social media. Pinterest, Facebook and Instagram have become some of the biggest propagators of this social pressure to fit in and measure up to this image of the ‘ideal’ life. Being honest, how often do we look at the impeccably designed homes and Instagram-filtered lives of others and feel, deep-down, like we could never measure up to what we’re constantly told our lives need to look like?
In our work or creative lives, how many times does the need for perfection stand in the way of creating? They say an artist’s work is never finished – that no matter how long is spent working on a project, it could always be better.
There comes a time when releasing any work, that we have to consciously take a step back, switch off the perfectionist part of our brains and say ‘this is enough.’ Why is it, then, so hard to do the same for ourselves – to take that step back and know that we are enough?
Many times we don’t even realize we’re buying into the lie. We spend our income, our time and our lives trying to fit in to this impossible image – and when we fail, which we inevitably do, it costs us. We desperately don’t want to be different, so we do everything we can to at least still present a façade of perfection. Even if our lives are falling to pieces under the surface, at least if things still look good and the same as everyone else on our Instagram feed, then maybe we can still feel some small measure of success.
But imagine for a minute a world where everyone was the same, where everyone did fit into this image. A world where there were no differences. Where everyone acted the same, spoke the same, looked the same. Where we all lived in our comfortable bubbles and there was never anyone or anything that would make us feel uncomfortable. Where there was never anyone or anything that would stretch our minds beyond ourselves. Or that would challenge us and our perceptions, our stigmas, and our stereotypes that we put on others, whether consciously or subconsciously. Or that would ever cause us to leave our comfort zones.
Imagine a world where every single person has somehow managed to shape themselves (at least on the surface) into this mold that the world has decided is the ‘perfect’ way to look, the ‘perfect’ way to act, the ‘perfect’ life to lead. Where our identity and self-worth is defined by how well we fit into this mold we’re constantly being sold. A world where anyone who is different and who doesn’t fit in this mold is sidelined and marginalised. A world where we are pressured to silence we are pressured to silence those who won’t necessarily “fit in” before they’re even given a chance to live.
It sounds intense, I know. But this is the world I believe we’re heading towards if something doesn’t change. And yet I believe the opposite is also true: we have the power to safeguard the diversity and perfect imperfection that makes our world so beautiful. To embrace and be authentic and vulnerable about our beautiful, messy, imperfect lives. To be a voice for those who are different and who may not have a voice for themselves (at least not one that the average person on the street would take the time to listen to). To give dignity and self-respect to those who are too often sidelined and marginalised. To bring to light the value of those who may be different but who have so much to contribute and teach us, if only they were given the chance.
October is Down Syndrome Awareness month, where we have been celebrating those, like our son, who rock the extra chromosome they were born with and bring a beautiful diversity and joy to our world.
This month we have been celebrating our son. He has taught us to love deeper and fiercer and freer than we ever loved before. He loves to do whatever he can to make us laugh and stop and enjoy life every single day – even the days when it all feels too much and too hard. He finds the smallest things like a cough or sneeze the funniest thing ever, and will get to the point of finding it hard to breathe because of laughing so hard and long if he so much as hears someone blowing their nose. He sings at the top of his lungs, constantly. His favorite songs range from Swing Low, Sweet Chariot and You are my Sunshine to worship songs like King of my Heart and Catch the Wind (first thing he asks for every morning now), to Happy by Pharrell Williams and So Fresh, So Clean by Outkast (old-school, I know).
He’s now decided he wants to be called Levy (from his nickname Calevi that we’ve called him at home since birth) since it’s easier for him to say (although if it were up to him it would be Levy-O – but we had to draw the line somewhere!). He has a gift of knowing exactly what to do when it feels like our world is falling apart that seems to make everything better. And he knows how to make each person he gets to know feel like the most extravagantly loved person in the world.
Before we moved back to Israel, Levy had started going to preschool (!!), a mainstream school with a forest school ethos that he absolutely loved and thrived in. We weren’t sure at first if he would cope with all the children and noise and new environment of a mainstream school. I also had a fear in the back of my mind that he wouldn’t be able to make friends like other children – that other children might look down on him, exclude him or even bully him because of his differences. Yet he has proven our fears to be needless again and again. He couldn’t wait to go to school every day. He joined in and was included in everything they did (since it’s a Forest School that means even learning to build fires and survival skills!), and had a crowd of little friends who loved him and would run to play with him as soon as he arrived.
We’re hoping to find a similar school for him here, where he is already thriving and loving being with all his cousins who live down the road (eight, to be exact – all from one sister! I know.). His cousins can’t get enough of him and fight over who gets to play with him or sit next to him. They sing songs together and love showing him off to all their friends, who equally love him and love playing with him. We have been blown away by how much our little boy is loved and how much joy he brings to everyone he meets.
Of course there have been some extra challenges that have come as part of the package. Although his speaking (and singing skills) is above average for children with Down Syndrome his age, he still wasn’t walking by three and a half years old. For over two years, our time was filled with waiting, physiotherapy, exercises and frustration.
Until one day, my husband Will came through the door from work. Levy dropped everything, yelled ‘Daddy!’ and speed crawled over to his father’s waiting arms as he did every day. This time, though, was different. A few steps away from where Will was waiting for him, he suddenly stood up on his own and walked three steps to get to him! Will looked up, shocked, to where I was standing at the kitchen counter with my hands over my open mouth, tears quickly filling my eyes. Because as hard as it is to wait for him to reach milestones that children less than half his age find easy, it makes it all the more beautiful when it does finally happen. I never felt my heart achingly filled to bursting with pride and joy more than in that moment.
When it finally happened, he did it completely by himself, with no cajoling or striving on our part. We just had to wait for him to be ready on his own terms (like with everything else it seems – he takes the term ‘strong-willed child’ to another level), and learn to enjoy each season for as long as it lasts (even when it seems like a lifetime).
Although with some things it takes him longer than with others, he consistently continues to break out of every box we subconsciously put him in. And he continues to teach us the value of living each day to the full, enjoying each season, and embracing life in all its messy, glorious imperfection.
So here’s to those people, like our son, who may not “fit in” to that perfect image but who can often teach us, if we let them, what it is to live life fearlessly and to the full. Who teach us that the best kind of life we can live is one where we celebrate the messy, the hard, the imperfect. Who teach us that it is, in fact, possible to have a perfect life. It may just be a different kind of perfect. And that is more than enough.