This is an issue that is an ongoing challenge for me. Even
before Michelle was born, I used to worry about what people thought and
I remember clearly an osteopath saying to me once:
I can see the truth in that now.
When Michelle was born, I was really challenged by people's reactions. I was in shock and grief and other people didn't know what to say. Whatever they said was never the right thing and I wasn't in the space to understand that they meant well, and it was hard for them too. I wanted them to understand what I was going through and I know now that was an unrealistic expectation.
Supermarkets were the worst. You know how whenever you take a new baby out in public, the baby becomes public property? Well...with a child with Down Syndrome, I found that people came out with clichés all the time to cover up their awkwardness. Things like:
|"They're so lovable"
"They're so affectionate"
"They're very musical"
"They're so easy-going"
"They only come to special people you know"
"God only gives us what we are capable of dealing with"
They were trying to make it better for me, but it didn't help. Children with Down Syndrome are just like any other children, with their own temperaments, personalities, thoughts and feelings, they are just slower to develop. Those patronising comments brought only hurt to me.
Once in a supermarket, I turned around and an old lady was peering at Michelle. Then she turned to my other daughter, aged 5, and said "Well, you're all right, there's nothing wrong with YOU!" When I got to the checkout, the operator looked at Michelle, then at me with a compassionate look and said "They only come to special people you know!" To this, I blurted out "Well I wouldn't choose it (meaning this situation), and I certainly wouldn't choose the major heart defect that came with it!"
I got to the point where I would hyperventilate as I arrived at the
supermarket so I ended up doing the shopping in the evening when Chris
was home to look after the children.
I learned to turn it back on them asking:
"Do you have first hand experience?"
Over time, as I grew to know Michelle I became more confident and
didn't notice other people's reactions. One day, when she was about
2½, I went to get her passport photo done. It struck me that
I couldn't remain anonymous...we would travel and when we went through
immigration, her passport photo would show her as having a disability.
I immediately felt vulnerable as attention had just been drawn to us and
after that, going through the shopping mall, again I noticed people's reactions.
I wrote this poem as a result of that day:
It hurts the way they look at us
Some stare at you, then turn away
It hurts to see that you stand out
To me you are a unique child
Copyright © Sharon K. 1993
The next year, I had come more to a place where I was learning to
live with other people's reactions and recognise the valuable learning
that was coming to me through having Michelle in my life:
No matter where you go
Your gentle manner
The cares and worries
What does it matter
Of finding how
Copyright © Sharon K. 1994
Later on in the same year, when I became pregnant with my third child,
I felt hurt by people's shocked reactions. It was not a decision
I made lightly, and I wouldn't have made such a decision if I didn't think
that I could handle it. At the time of course I had no idea
that there was a one in four chance of this baby having Batten disease.
Had I known, no way would I have taken that risk. I wrote this poem
in response to people's reactions:
People doubt the strength in me
They cannot freeze my life in time
As I perceive, we all have choice
So all those fears and doubts they have
Copyright © Sharon K. 1994
I think learning to deal with others' reactions is a personal journey that comes with time. In my case it was learning to trust in myself, and gain the confidence to know and speak my truth. It is a lifelong learning, and looking back now, I am so pleased to see how far I have come.
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