
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 was an expectation to get on with life.
This question was just the beginning. Two years on I feel a definite sense that I should be ‘over it’.
‘Why does she keep going on about it? Do you think there is something wrong with her?’ I hear a lady I vaguely know, whisper loudly across the café. Her friend looks away awkwardly as I make eye contact.
I ignore it, because although it hurts, it is not a surprise anymore. There is an unspoken expectation within society that exists. That we, the grieving, should stop talking about our deceased. That there is something wrong with us if we don’t.
We see the little looks, the hushed voices. The judgement.
I know I am not alone in this feeling. I’ve had thousands of other baby loss mothers agree that they feel it.
Pressure to stop talking about their babies. But why? Who does it serve to keep silent? The truth is, talking about our children allows us to ‘heal’. It allows us to process and accept that our babies are no longer here.
It lets us keep them close and alive in our memories. Stifling that conversation only makes things worse.
We talk about them to remember them. To keep their faces, their names, their spirits alive. We talk about them because we love them and time cannot lessen that or silence us.
We talk about them because in the year 2020 we recognise that it is healthy to do so. We recognise that grief is not a mental illness. There is nothing ‘wrong with us’. In fact, I have learnt that being able to speak freely about my baby is paramount to my mental health.
Why do I do it so publicly? Because there are hundreds and thousands of us, feeling so damn isolated. So lonely in our loss. Yet we are not alone.