Page 6 - Just Better Care Possible Magazine - Issue 6

Like everyone, we have highs and lows
A mum’s perspective on her daughter’s disability.
Emma has brought a real bond to our family;
she is the glue that has made us closer and we are fiercely protective of her. Through her, our children, extended family and friends have been given the gift to see all people living with disability for the individuals they are and to treat them with respect and kindness.
I’m Carolyn. A mum of four mostly grown up children and a beautiful nine-month-old granddaughter. Child number three is our girl Emma. She was
born with atypical cerebral palsy but as the years went by we knew there was more to it; the older she got the more her physical abilities began to decline.
It wasn’t until she turned 21, following years of countless doctors’ appointments, hospital visits and tests, that we got an answer and official diagnosis: Infantile onset ascending hereditary spastic paralysis, an extremely rare degenerative faulty gene disease ALS2, which has cerebral palsy-like symptoms.
My experience as Emma’s mum and full-time carer has been hard and all consuming; there is no disconnect between the two, so your emotions are always on high and you can’t turn them off. There has been little time for hobbies, interests or even a social life.
You find out very early that you are moving at a different pace to everyone else. Sometimes you catch up to them but inevitably you fall behind and go in a very different direction which is often on your own. Like everyone,
we have highs and lows.
The highs for us are that Emma has brought a real bond to our family; she is the glue that has made us closer and we are fiercely protective of her. Through her,
our children, extended family
and friends have been given the gift to see all people living with disability for the individuals they are and to treat them with respect and kindness.
Emma has such powerfully emotional reactions to things like movies, music, and shopping -
her favourite things. And when she gets to realise some of her life goals, her pure joy and excitement becomes just as much ours as
it is hers.
Unfortunately, the lows and frustrations have been many. The endless years of therapy, hospitals, surgeries, specialists.
The depression, the anger, the weeks and weeks of grieving for every time Emma loses another of her physical abilities with no light at the end of our tunnel. The hard realisation to make the most of what we have while we have it.
There is the frustration of fighting for everything you need, the miles of red tape, endless forms to fill out, hoops to jump through and questions to answer just to get some basic equipment to help your child have some sort of normality.
The patience needed for the year or two waiting periods as you get put on another way too long list for something as basic as seeing a dentist.
Our experience has been that little information has been available to guide us along our journey. Most things we have learned have come from other
families going through similar circumstances. We didn’t even know we could get in-home care until I injured myself lifting Emma and could no longer
do everything myself.
At first it was very hard,
confronting and I hated it. I felt guilty for not being able to look after Emma. She was my daughter, my responsibility
and to say I was a controlling helicopter mum for the first three months is an understatement.
As hard as it was for me to give up this part of caring for Emma,
it was harder for her. She hated it too. She was angry at me, she was angry at the Support Staff and the intrusion to her life. Emma found it very hard getting so up close and personal with complete strangers. She was giving up control of herself and didn’t cope very well for quite some time.
Emma’s brother and sisters also struggled with having strangers in our home. It was a hard lesson for us all - accepting our future and with Emma’s degenerative condition, understanding this was the beginning of our next journey.
Having support is a big part of that journey; people you can rely on to be there during the good and bad. I’ve found that with Just Better Care Hills to Hornsby. They’ve taken the time to
get to know Emma and our family, and are now part of
our journey forward.
6 — JUST BETTER CARE
POSSIBLE