We had a significant birthday in our house this week. Our son with Down Syndrome turned 12. And what a 12 years it has been. 

I cried in the lift heading up to the labour ward – I knew something big was about to happen. A couple heading out with their newborn, thinking I was a scared first-timer, reassured me everything would be OK. 

My labour was fast and furious and all over in under an hour. As soon as I saw my boy I knew he had Down Syndrome. I was so relieved – I thought it was going to be something much worse. I was so naive; I had no clue the health complications that can come with Down Syndrome. But we were lucky. He was tiny but healthy. 

Our lives have been a whirlwind ever since. Whilst we have been lucky with his health, we straddle an odd fence. He’s not disabled enough for us to get the supports he needs to reach his full potential. While outwardly his Down Syndrome doesn’t seem all that bad, behind the scenes, its takes a huge amount of work from us to help him navigate a world that just isn’t built for people like him. 

We have learned so much. We have become amateur speech and language therapists, occupational therapists, physiotherapists. We’ve learned how to operate within a broken health system and an inadequate education system.  

We’ve also learned the joy of simple things. First steps we didn’t think he’d take. First words that are still in the making. Tonight we’re heading out to his first disco. A disco! 

That couple in the lift all those year ago were right – its all going to be OK.