Two years ago my baby died of a rare brain condition known as Miller Dieker Syndrome.
Only two babies every year in Australia are diagnosed with this condition. I had a healthy pregnancy until an ultrasound at 36 weeks revealed a problem. It was the day my life changed forever. My husband and I were told we might have two years with our child, if we were lucky.
Devastatingly, we were robbed of even that. Lily died when she was just 10 months and 15 days old. Since then, I am a different person, I have different beliefs, a different outlook on life. I am still figuring out how to survive without my child.
One of the hardest things I have faced is the expectation from society to get over it. At least, to stop talking about it in public.
I remember a friend asking when I was going back to work, only a week after Lily died. I was shocked, my baby had been dead for just days and already there…