The Two of Us -Reactions
My Little Teacher
Others' Doubts
Michelle aged 4

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:

"Other people's thoughts are their business." 

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
They do not understand
They do not know you as I do
Reactions are not planned

Some stare at you, then turn away
As soon as our eyes meet
Some smile at you, then smile at me
A lovely way to greet

It hurts to see that you stand out
As different from the rest
I strive to be anonymous
I strive to do my very best

To me you are a unique child
You're who you are, not what they see
It's only lack of their knowledge
That makes them look that way at me.

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
No matter what you do
You bring the world a special gift
That only comes from you

Your gentle manner
Shows with love
A humour that's
A cut above

The cares and worries
That we brew
Those insurmountable
Troubles too

What does it matter
What they think
Now you and I
Are on the brink

Of finding how
To live, and be
No matter what
Now comes to me

Copyright © Sharon K. 1994

I learned to trust myself and speak my truth 

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've seen me cry before
They do not know from tears come strength
What else would they be for?

They cannot freeze my life in time
And say "That's how you are"
And disregard the challenges
That helped me come this far

As I perceive, we all have choice
To face and find a way
Or turn our backs and tumble down
And sometimes go astray

So all those fears and doubts they have
Just don't belong with me
So let them stay right in their place
'Cause I have set me free.

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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