When Michelle was born, my older daughter was nearly four.  We had "prepared" her, so we thought, for the arrival of her baby brother or sister, but nothing could have prepared her for having a baby sister with Special Needs.  We were all in shock and it was so hard dealing with our own grief as well as trying to help her with the fact that our whole world had been turned upside down.  I had planned a home birth so we could all be together and I had to go to hospital with Michelle to establish breastfeeding.  Also, being born with a major heart defect she required oxygen.

When we returned home after three weeks, I was still expressing milk with an electric pump and feeding it to Michelle in a bottle as well as encouraging her to nurse and that was a 24 hour job.  It was hard to give my other child the attention she needed.  I took her to Kindergarten but she was upset and as I was told by the Head Teacher that she was playing power games on me, I took her away and returned to Playcentre with her..a parents' co-operative preschool unique to New Zealand.  It was a lot of hard work, and facing people and their reactions was difficult for me too, but I did it and she went off to school very happily at the age of five, despite people telling me that as she hadn't been apart from me, it would be impossible to leave her at school.

All the therapists that poured into the house from the early intervention team made it quite difficult for her.  They were all coming because of Michelle and gave Michelle all the attention.  If only they had come in and said "Hi" to her and involved her in what they were doing, I think it would have been a lot easier.  Instead she got ignored so she resorted to throwing their toys around the room and pulling their hair, or anything to get negative attention, as let's face it...it didn't matter whether it was positive attention or negative attention as long as it was attention!  I was too vulnerable in the early days to explain to them...it took all my energy just to have different people with different ideas all coming into my home.   My life had taken a detour and there were new things to learn and people to meet and skills to learn and it wasn't going to happen overnight.

These poems have been written at various stages and when I read them to my daughter, I saw a look of relief on her face as if someone understood.  I hope in sharing them that they help some other siblings.

I want to send a message
To all of you out there
About the trials of a child
Who needs a lot of care

But her needs are undermined
By a sister, that's the trouble
Who came with special needs
Put a sharp spike in her bubble

Now she feels so insecure
Feels unloved and craves attention
And she acts just like a baby
Although that's not her intention

Oh I wish that I could give
Just the same amount to each
I wish the source was limitless
That this child, I could reach.

Copyright © Sharon K 1993






It hurts to have a sister
Whom everyone admires
They make a fuss of her first
Seems all the world conspires

To make me feel a "no one"
To make me feel left out
To gain ME some attention
I hit and scream and shout

It's nice to have a sister
Who cannot tell on me
When no one else is looking
A monster, I can be

I push her and I squash her
To let my anger out
I feel so hurt and lonely -
Then mum comes in to shout:

"Just leave that girl alone!
Stop hurting her, I say!"
Then off she storms and leaves me -
I NEVER get my way.

Copyright ©Sharon K 1994


I had a baby sister 
I loved her, yes I did 
And I felt really jealous too 
I'm just a "normal" kid 

But Shelley-Bell had Special Needs 
And took a lot of time 
I did some things to get ME some 
Mum, up the walls, did climb 

I really was just needing her 
I had MY needs as well 
And over time, this little sis' 
Got worse, did Shelley-Bell 

So more attention went to her 
I felt sad to the core 
I didn't know, they gave to me 
Just what they could...and more

And gradually, my little sis' 
Turned back into a baby 
Batten Disease did take a hold 
My family went crazy 

Giving her, all of our love 
As much time as we could 
I hurt inside just watching her 
As anybody would 

My little sister went from us 
At 5 years, 8 months old 
I can't express the hurt I felt 
I did well, I am told.... 

I don't know why........ 
She had to die. 

Copyright © Sharon K 1998

Andrea and Michelle 1991


Here is a poem written when there is no longer a child with Special Needs in the family, showing  "normal sibling behaviour" - whatever "normal" means...I always question that word since Michelle came into our lives.


Don't come in my room, little sister
'Cause then your life  won't be worth living
There's lots of special stuff in there
That to you, I will NOT be giving

Don't come in my room, little sister
Don't you dare put a foot through my door
If you do it is at your own peril
If you do it's the start of a war

Don't come in my room, little sister
Though I love you to pieces, I do
But in there it is so very private
It is way out of bounds for you

You can play with my toys if I choose it
You can play with whatever I like
When you come to cross over my threshold
It is time to go get on your bike

Some days I am happy to see you
Some days I just want to be free
Of a pesky preschooler and her mischief
Who just won't stop annoying me

I do love you Rachael, I will say
I'm so glad to have you in my life
You are cute and irresistibly awesome
And these different thoughts put me in strife

If I can just balance these feelings
And "let them be" at the same time
I can love you and still guide you out of here
And together, through life we can climb.

Copyright © Sharon K. 1998

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