NOAH HARPER
Nine months. For nine months I was planning that my brother was going to be like most babies. In fact he was going to be better than most babies! I was going to teach him how to play soccer as soon as he could walk. He was going to be in the first eleven-soccer team or even become head boy at boys high! I had it all planned perfectly!
None
of my other brothers were sporty or head boy, but this brother, this brother was
going to be different, and indeed he was!
On June 30th 1999 my mother decided to go to hospital for a check up, as the baby had not been kicking for a while.
The
scan she took revealed that the placenta protecting the baby had in fact stopped
working and that therefore my mother needed to undergo an emergency caesarean
section.
All this was happening while I was at home, enjoying being on holiday.
Then I received the phone call.
My father spoke quickly and with a worried tone. It was a voice I didn’t recognise. He spoke so quickly, that it was only when he hung up the phone that I actually started taking in what he had just said!
Was
I dreaming? Was my father joking? NO, this was true, it was really happening!
So
this is where my perfect plans had changed. I had been planning for months on
how my brother would be clever and sporty, only to find out that this was most
likely never to happen.
So
now you’re going, ‘Ok, we get it, your brother is not how you planned him to
be. But why?
Well,
my brother was born with a disability called Down syndrome. This means that his
brain doesn’t function properly and he is slower than most babies at learning
new things. For example he is fourteen months old and he has not yet learnt how
to sit up, without support.
However,
we should not compare ourselves to others. We can only do the best that ‘we’
can do, and my little brother is definitely doing that.
I have another sibling with Down syndrome. My twelve-year-old sister Lily, who must be the most sweet, cheerful little girl I’ve ever met.
Lily
helped me a lot through Noah’s birth, because every time I looked at her I
realised that it wasn’t a bad thing that Noah had Down syndrome.
However, Noah did not only have Down syndrome. He had breathing problems. – He wasn’t breathing at birth and had to be flown up to Auckland hospital on the day he was born.
He
also had Bowel problems and a disease called Hirsprungs disease, which made him
require a four-hour operation down in Wellington to have the whole of his colon
removed.
Then
around Christmas time, when we thought Noah was finally improving, he developed
a rare form of epilepsy called infantile spasms. This meant that he would hunch
over as if he had the hiccups, but then start crying. He quickly lost the
ability to reach for his toys and even the ability to smile.
Noah
has changed my life in the past year. He has made me happy, sad, distraught,
angry, and worried. He has worried me so much that I would sometimes cry myself
to sleep at night, praying that he would recover.
Then finally, my prayers were answered.
I
went to pick my baby brother up and he looked at me and laughed. That is
something I have longed for, for ages.
He
is improving quite well now, and a little while ago he learnt how to roll. I
would lay him on the floor and he would roll around the room, laughing at
himself, because he knew how to roll.
This little baby has definitely changed my life.
I
can still look back and remember the phone call from my father, telling me that
Noah had Down syndrome.
Every thought of Noah being a first eleven-soccer player had gone from my head.
I
hadn’t wanted my brother to have Down syndrome. I didn’t want a brother with
Down syndrome!
However, a whole year has passed since his birth and now there is no way in heaven or on earth that I could look at my brother and say: ‘I don’t want you, I don’t want you because you have Down syndrome.’
Because if there is something I really want, it is my little brother Noah, who has Down syndrome.