State of the World's Children 2013 - Unicef

epilepsy. The ketogenic diet is
an incredibly strict high-fat, lowcarbohydrate
diet. In a bizarre,
unexpected stroke of grace, it
worked. My poor suffering son
went from having up to 200
seizures a day to almost none
in the first three months. He has
been virtually seizure-free since.
My partner and I have since had
another son, a healthy toddler
whom we love as dearly as we
do Owen. He has brought us
another perspective on life. Our
family life has come to define
us. The connection we have
makes us stronger – to us, our
lifestyle is normal; we carry on.
It’s normal to drive all over town
to do physical therapy many
times a week; it’s normal to haul
heavy equipment like standing
frames and bath chairs from
room to room every day. We
know the children’s hospital like
the backs of our hands and are
familiar with many of the top
specialists in various fields of
paediatric medicine.
I call myself my son’s
‘personal assistant’ because
he has a never-ending
stream of paperwork,
funding applications, doctor’s
appointments, therapy sessions,
check-ups and blood tests. I
do most of his personal care,
such as feeding and bathing.
My partner helps when he can,
but he works very long hours to
keep us all afloat financially – so
that I can care for Owen and
we can have a comfortable
life. We try to keep busy on the
weekends, doing family things
like visiting the farmer’s market,
going out for Vietnamese food
or checking out a kids’ show.
Owen has a pretty fun and
busy life for a 5-year-old. Yet
no matter how good things can
be, he has a long and difficult
journey ahead of him.
We are hoping to place Owen
in a mainstream primary school
with the support of the Cerebral
Palsy Education Centre, an early
intervention programme. Owen
has shown vast improvement
in communication and movement
since he started going
there. He also attends activities
at the Riding for the Disabled
Association, which we both
love. Over the years we have
spent so much money and time
on therapies and services –
some of them good, others not
that helpful. We’re learning as
we go, and we’re getting better
at making practical rather than
emotional decisions. It’s still
hard for us, though; I’m always
fighting or waiting for something
he desperately needs,
sometimes for years.
The hardest battles have to do
with people’s perceptions of
Owen. I just want him to be
treated and spoken to like a
regular kid – but I also want him
to receive special attention, and
for people to be more patient.
I want my friends and family to
help him and engage with him
more. Many of them tend to
focus on how I am doing or on
something else that’s less challenging
than Owen’s very real
problems. It’s hard for them,
too – with everything he has
going on, I sometimes think
he should come with an
instruction manual.
I’ve often feared that the
things that defined me before
I became a caregiver – work,
creative interests and a social
life – have been lost down a
well of grief and exhaustion.
More often than not, however,
I feel like my life before Owen
was born was comparatively
superficial. Becoming a caregiver
for my own child has been
an overwhelmingly profound
and joyful experience. We celebrate
small accomplishments
feverishly, and my expectations
of what success entails have
been smashed and rebuilt into
something beautifully simple:
Owen sitting unaided for five
seconds, or, as he watches the
Paralympics on television, hearing
the words ‘cerebral palsy’
and ‘champion’ in the same
sentence. I have grown through
caring for Owen – above all,
perhaps, in my ability to
empathize.
I have learned that no matter
what a child can’t do, she or he
will still always have an identity
and a character that will leave
a distinctive brushstroke on
this world. If we want to be an
enlightened society, our job is
to believe and encourage. Only
then can children who have
such difficult limitations grow.
And then we can all come to
see that things that ‘go wrong’
are sometimes just different –
and often amazing.
A STRONG FOUNDATION
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