This story was written by Charles Burfitt for World Down Syndrome Day:
Six months ago, my wife Amelia and I welcomed a beautiful baby boy. Raphael was our second baby, and with his porcelain white skin and piercing blue eyes, he was a real heart-breaker from day one.
We were surprised when we realised he had a faint tinge of ginger in his fair hair, and we were surprised when we were told he had Down Syndrome.
Growing up, I was surrounded by people with Down Syndrome; one of my classmates had Down Syndrome and so did several other boys at my school.
After graduating, I got a job with a disability care provider, and from then on I spoke, played and laughed (especially laughed) with people with Down Syndrome on a weekly basis.
So when Raph was born with an extra chromosome – and a host of other health issues – you might think all this would have made the post-natal diagnosis a lot easier. Maybe it did, but the reality is that hearing that your child has a lifelong disability is hard.
Nothing can prepare you for it and nothing should ever make you feel guilty for wishing that conversation with the doctor had never happened.
One of the worst things people said to us when we had Raphael was “I’m so sorry”. My wife had just had a baby and whilst we were worried about his health – nothing could overshadow our elation at this beautiful boy who was all ours!
We deserved congratulations like any other new parents, but we often didn’t get it. We want people to realise why we deserve congratulations, that’s why we’ve started to blog our journey and that’s why I’m sharing our story on World Down Syndrome Day.
Raphael has special needs, there’s no doubt about it. The feeding tube taped to his face gives it away pretty quickly. But what we don’t always talk about when we talk about kids like Raph is that he is a kid just like any other. He laughs, cries, plays with his toys and steals countless hours of sleep from his mother and I (although not as many as his older sister).
We toasted Raph’s first day home from the hospital with a wine and a cuddle, and we can’t wait to toast his other milestones as he grows up. He may hit those milestones later than other boys and girls his age, but he will hit them.
He’ll enjoy going to the footy with his mates, celebrate his 21st with a party, watch movies with his mum, and go to the pub with his dad, just like anybody else.
Our life isn’t a whole lot different either. My wife and I still laugh at each other. We still share a wine, tell stories about our day and connect just like we used to. We still find delight in our eldest daughters’ quirky traits and are silly with her in the evenings after work. We still cuddle our little newborn and feel our hearts fill with pride when his face lights up with his big smile or when he achieves something new.
I’ve heard people argue that children like Raph have no quality of life and no expectations. Well, tell that to the mailman with Down Syndrome where I work who has held down a job for 31 years. This guy shares laughs and jokes with the boss like nobody else at the company would dream of doing.
In my experience, happiness and joy springs from those with Down Syndrome like it does from no others, because they understand something that most don’t – that life and the beauty in it is actually quite simple.
To look down on these people and to label their lives as worthless is unfathomably ignorant and arrogant. A life full of smiles is a life worth living, and a life worth living is a life worth having.
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