I am a carer. Not just a parent, a carer. I know this. I know that all I do for Small – get him up (because he can’t get up himself), change his nappy (because he is still in them and won’t be coming out any time soon), get him dressed (because he can’t do this himself), take him down for breakfast (because he cannot walk), strap him in his highchair (because he doesn’t have enough sense of danger not to know that leaning out of it at a ninety degree angle might hurt him), feed him breakfast (because he can’t dig into his weetabix with his spoon)… you get the idea… is way above and beyond what I should be doing for a boy who is 4 next month. (4? I know..) And yet I do it, because it is what he needs to get through the every day and most times, I don’t think about it, it’s just what we do. But I recognise the extra strain it places on our life. The physical strain it puts on my body and the strain it puts on our day in terms of time it takes to get places, and the places and events that we can and cannot access. Picnic in the park? Thank you very much. Lunch in a cafe down a steep cobbled street? Thanks, but we’ll pass.
This is why I am so grateful to the other carers in our life who help to take that strain.
To the nursery workers who sit with him to make sure he interacts with activities as much as he can, who get him outside to enjoy the fresh air and the sunshine and who slowly, slowly makes sure he eats. Small loves loves his food, it just can take a mind-numbing while to get it in.
I am grateful to our initial respite worker who recognised that I was on my knees, could not see a way through my life and just took Small overnight, let me sleep, uninterrupted, and find a way to get all our lives back on track. Every other week she took him into her home, made him a part of her family. It was clear how much they enjoyed having him and clear how much he enjoyed being there. Society sees our children with disabilities as a bit of an irritating burden sometimes I think, but Small gives so much back in his laughs, and his cuddles and his enjoyment of just being In The Room (as someone so bluntly, but accurately, put it: ‘he’s a lot more ‘here’ isn’t he?’ Yes, yes he is…).
I am grateful to our current respite worker, who has taken him on, got to know him, worked with us to get to know who he is… so I can sleep easy knowing that he is safe, and cared for. And when he is away my head has time to empty out. I can hear quiet. So there is room to fill it up once more when he returns.
I understand that all these wonderful people do this as a job, they are paid. But I cannot believe anyone would put themselves into a caring role if they did not care. I see them go the extra mile and I know that they do. They care.
There is a man walks down out street… he’s about 40, I think. Every day he is ‘walked’ – no better word – twice a day by people who I assume must be his carers. He walks with an awkward gait, makes guttural noises as he walks and wears the helmet of someone who fits, or faints, for no reason. Every day, come rain or shine, off they go, round the park. This could be my son in 40 years time.
When I am dead and gone I hope, I so hope, that there are still people around who want to be Small’s carers, who will take him out, walk him, bring him out into the open to be part of the world. His sister will not be able – and should not have to – deal with it all by herself. This is what our ‘big’ society is for. This is what makes us human – the connections we make with, and the support we give to – other people. Otherwise, why are we here?
Some just need it more than most.
Next week is #CarersWeek. Shout it out, support it. These people, these incredibly people who do it through necessity or through vocation, they’re worth it.
You can find more information on Carers Week here: http://www.carersweek.org/