Now firstly, I love my Abbey. My angel and little girl. I hold no resentment or ill feelings towards her for what I am about to share. Its just part of my life. My life with James and my life with my family.
You see Abbey is in a wheelchair and incontinent. Most people don’t quite realise what this means for Abbey or me, her carer. I will always be her mum, always. But as her carer, it requires another thought process, another way of thinking.
A wheelchair means she is transported everywhere in it, around the house, to the doctors and via the car. So we have this huge van, we call the bread van to transport her to all the places we need to go. It means we don’t have much boot space as she takes up all the room.
The bread van has a back ramp that is hydraulic and extends out to get Abbey in the car in her wheelchair. This device has actually been our life saver to access our community.
When we go out in public (not to a friends home) and Abbey is in her wheelchair, she is stuck in her chair. She cannot get out to walk around or stretch, unless we are near a park. But then getting to a place where she can do that can be hard if there are no paths to the grass. That’s another story!
So we try really hard not to go out for too long, so she is not stuck sitting down all day.
The other difficult aspect is the incontinence. Abbey still wears incontinence aids. She is 9 years old, 27 kgs and about 1m tall. She does not fit onto those baby change tables at shopping centres. So I will ask you, where would you change her nappy?
There are no facilities in the disabled toilets. There is only a toilet with railings. It does not suit our needs. In many instances we have to put Abbey on the floor of a public toilet to change her. We lay out a big sheet to try and protect her from that grotty floor. Its heartbreaking.
Imagine going to a park? There is no where to change her there, and it is one of your favourite places. It does not seem fair.
How do we manage this side? Well we go for short trips, about 2 hours. We visit other peoples homes to get out, as we can always duck into a bedroom to change Abbey. If we can find a secluded parking spot, we will change Abbey in the back of the car around that huge hoist.
So really, its pretty crappy. Literally, it sucks.
I have wanted to share something that most people don’t see, as we as carers hide it. We hide it for the dignity of our children, our parents and our wards.
So I ask, next time you see a carer with a child in a wheelchair and they seem to be struggling at all. Offer to help them. Even if its holding their keys.
Thanks for letting me share.