Tuesday, 20 March 2018

Down Syndrome

D is for Down Syndrome

Last year I wrote a reflective piece about my daughter Jessica, for Down Syndrome Australia. As tomorrow is World Down Syndrome Day, I thought I would share it again in this blog.


“I think your baby has Down syndrome. Why haven’t you been told already?” said the frank geneticist when we took our one-month-old daughter for diagnosis. Shock, like a cattle prod slammed to my forehead, shot through me. The vision of her slanted eyes I had noticed when she was born, zoomed around my brain. I felt numb. I had known there was something not quite right with Jessica – she slept way too much and had feeding problems – but no one we had seen for help had mentioned Down syndrome.

The paediatrician at her birth had directed us to the geneticist who we were seeing due to another family genetic syndrome. The wait to hear what the blood test revealed was excruciating. My reaction to the ‘positive to Trisomy 21’ news was horrific. I didn’t want to look at my baby or touch my baby. I spiralled down into post-natal depression and I was filled with fear. I couldn’t see a bright future for my daughter, and the “I’m sorry” from well-meaning friends didn’t help the situation.

My strong feelings made no sense to me. I knew absolutely no one with Down syndrome. Somehow, somewhere during my life, I had picked up that Down syndrome was a really terrible thing for my child to be born with, and for my family to have to deal with.

Now, nine years on, I wish I could go back in time and talk to the terrified mummy I was. I would softly tell myself – it is going to be okay. There is nothing to be scared of. Your daughter will develop her milestones, she will talk and sing, she will have friends, she will love swimming, she will go to mainstream school and be involved in extra-curricular activities, she will have her own personality and talents, she will have a vivid imagination, she will learn independent life skills, and she will bring much joy to your family and others around you. You will love her, cry over her achievements, advocate for her fiercely and she will be a light in the world. It will not always be easy, but that is a typical life. Your beautiful daughter will show the world that having Down syndrome is just one part of her, it does not define her.

(Jessica is now ten).


Today I saw in my Facebook memories, a youtube video I had made when Jessica was 5 years old. I thought I'd share that too. 

A final thought... There is still a long way to go before people with Down syndrome are fully accepted as valued human beings. There is prejudice in a lot of people's hearts and many neotypical children see their peers with Down syndrome as weird or different. As adults we must show children that they need to be kind to others who are not like themselves, reach out to these other children and extend a hand of friendship. From my personal perspective, all Jessica wants is to be accepted, to have friends and for people to be nice to her.

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