Drawing on her own experiences,
Katherine writes passionately about motherhood when it turns out different to
expectations. She covers topics as broad as parent carer health &
wellbeing, accessible travel, home renovations and entertainment, family life
with disability in the mix, and trying to improve the workplace for parent
carers.
Katherine lives by the sea in Cornwall
with her husband and two children, the youngest of whom has a Syndrome Without
A Name (SWAN) which leaves him unable to walk or talk.
I’ve never believed that ‘special children are given to special
people’, nor that having a disabled child makes a parent ‘amazing’ or
‘inspirational.’ It is true to say, though, that we can be stretched beyond our
limits and our eyes opened to the fragility and complexity of life. These
experiences can shift your centre of gravity fundamentally.
I am not a different person now to who I was before my son was
born, but there’s no doubt that raising a child with disabilities has
changed my outlook and I have had to learn to adapt to a life that I didn’t
expect.
When my son was tiny, I didn’t want to be on this path. So for
about eighteen months, I still hoped that he would be fine. Without any
firm diagnosis, and with plenty of developmental ‘catch up’ time in front of
us, there was still room for hope that we weren’t really on this
path at all. That one day all my fears would be let go as unfounded.
The reality was that many of the things I was afraid of back then
did indeed turn out to be on our path. In the first few years of my
son's life, we roller-coaster-ed head on into some of my biggest fears:
·
Non-walking child – tick.
·
Non-verbal child – tick.
·
Special school required – tick.
·
The big one – epilepsy, seizures that stop your child from
breathing – tick.
And I hadn’t even anticipated the things that would be most relentlessly
exhausting:
·
Negotiating the education system to get him a special school
place.
·
Navigating the Disabled Facilities Grant process so that we could
stay in our home.
·
And worst of all, trying to keep a career together so we can keep
a roof over our heads, while coping with the fact there is no suitable
childcare for my son when he is not in school. At times, this has been
seriously challenging and I have been convinced we are about to lose
everything. It still feels like a deeply uncomfortable possibility. The impact
on my mental health because of this has been significant.
Even in my darkest moments, though, I have never wanted to back
myself into a corner through fear or sadness. Once I realised our
lives would be different I always wanted to embrace it. To turn challenges into
opportunities and to find happiness and fulfilment right where sadness or
isolation could have easily set up camp.
I’m still learning, of course, but holding on to this way of
thinking has helped ease the bumps in the road. And I’ve discovered some new things about myself along the way:
·
I can survive things I might have thought impossible.
·
I can thrive, even. Although at times the pressure may feel
unyielding there are calm waters in between.
·
I am most definitely not on my own, even though it really felt
like it at the beginning.
·
Being human means being really good at adapting. It’s what we
do.
Katherine
Kowalski is the author of award-winning blog ‘On The Mother Hand’ where you can read her posts.
If you’re a parent
carer, what has helped you most to adapt to your new role as both a parent and
a carer, and have you learned anything surprising about yourself along the way?
