December 20, 2016
To be honest, I didn’t really think that my life was any different to anyone else’s for most of my younger years, as all the families we hung around had kids with disabilities too.
I guess for the most part, my parents suffered, as their peer group radically changed when my brother was born. A lot of the old family friends they talked about disappeared and new friendships were formed with other families who could relate to my parent’s situation I guess. I feel like this is a little sad, as sometimes I think you can get grouped together with people who may not necessarily be your people… you just happen to have one major thing in common.
When I got to school I began to take note though. Other families would go on weekends away. They played sports and went outdoors… You see we were always restricted by Ryan’s access to places (these days it is a lot better), however 30 years ago wheelchair access to most places was pretty poor. Add to this, Ryan’s constant trips to specialists, surgeries and his on/off fragile health, we couldn’t really leave the house easily, and it became easier for the world to come to us.
So my mum & dad created a world that revolved around our home. Long before it was common, they ran a couple of businesses from our home, we always entertained our church community at our home, and because we had a pool, mum was often asked to mind other people’s kids. I think because my mum and dad strived to “cope” and make it look like they were doing really well, some people on the outside (and at times myself included) undervalued just how hard it was on a daily basis to raise a child with such severe disability and health issues as Ryan has, and in many cases it was easy to advantage of the fact they were always home. People often left their kids at our house or hung around longer than was really fair, given our family situation. Mum & dad are so sweet natured, they would never speak up, but even as a child I could see the cracks.
Every morning, either mum, dad or myself would wake up to the ding dong of the doorbell, and a sometimes strange or sometimes familiar carer would come in to our home to aid with Ryan’s showering/changing/dressing routine. Often times we would just send them away, to delay having to start the day on someone else’s clock.
Ryan like most able bodied children attended school, however due to his poor health, he often missed days/weeks at a time, this then of course affecting my parent’s ability to work, often seeing them both pull really late nights in order to keep up with the work load. I don’t really think this is much different to most parents, only that they had no power to control what time the carers would come in the mornings or the evenings, so our lives were always structured around when the ding dong would ring.
I think that what we all have always felt is a sense of lack of privacy or security within our own home. I know I felt like that as a teenager, when there could be a strange man showering my brother when I woke up of a morning. I know this became a big issue for my mum particularly too. After having strangers come through your home for 37 years, you tend to crave a bit of peace, quiet and security. Not that it is all bad, alot of the carers we have had in our lives over the years have become good friends and companions, and we are truly grateful for the wonderful people who greeted Ryan with with warmth & a pleasant smile. However others could bring their bad moods and home dramas into our home, and it would feel very awkward and strange.
I did not really know any different and so it is only in later life as I reflect, I can see how upside down our lives could be turned at the drop of a hat. Trips to and stays in hospital were kind of the norm, and me as the other kid, I just kind of tried to be as good as possible, so not to give my parents too much else to worry about. Of course, as is quite natural, that all changed when I became a teenager. And I think that “my good girl striving for perfection” took a wrong turn, and found me fighting an eating disorder. When I think now how hard that would have been for my folks, to have struggled to keep their very sick child well, only to have their very healthy child make them self sick? Of course, eating disorders are way more complex than that, but now as a parent I can look back and see just how hard that would have been for them. On a positive note though, what happened to me, made my parents open up a bit, it made them stop pretending that they were great all the time, and I think for me they became more real. They talked a lot more openly about how tough having a child with severe cerebral palsy is. And they started looking for solutions to the question that haunts all parents of children with disability, “What happens if they outlive me?”
Today day to day life with Ryan varies. His health is deteriorating, and so trips to doctors & specialists, and last minute changing of plans is becoming even more normal than before. Organising respite and respite hours has always been a juggling act, but now my mum knows she can make better choices for Ryan. This has meant reducing his day programme hours to only 2 short days per week, reducing the respite times mum receive, but improving the quality of the experience for Ryan.
This is who my mother is, selfless & caring beyond any person I have ever known.
It can be tough having a family member with a disability, but if you met my brother, you would know that his quality of life is worth every bit of it. My dad always said, that Ryan has the best life. He does not suffer a lot of the same pain as we do. His needs are simple, and when met, he is the happiest person I have ever known. And that happiness is so infectious, it is worth all the sacrifices made over his lifetime.
I just want to shed a light on the many hundreds of thousands of carers, who day to day just get on with it. They often do not have the luxury of time to make a loud noise about their stories. And me making a loud noise about my family story is not going to change it in any way. But I do think it would be nice to just let others know they are appreciated for what they do in this world 🙂
In 2015 I partnered with Equity Works – a local not-for-profit disability services to create Celebrating Women Who Care (CWWC) – designed to create connections and events that nurture Sunshine Coast Carers. We are holding a pamper day on International Women’s Day Wednesday March 9, 2017.
The event will nurture and enhance the wellbeing of 40 Sunshine Coast
women who are primary carers for a family member with disability.
If you would like to learn more or support us CLICK HERE.
We'll contact you soon!