By swan uk member and blogger, Alex Davey - thelongchain.wordpress.com
Last week we said goodbye to someone we will all – Benjamin especially – miss like crazy. But it didn’t start out that way.
I’m a proud person – I don’t like asking for help (my husband will tell you that’s an understatement).
I’m a private person – I don’t like having other people in my house. Especially not when I’m in my oldest pyjamas, haven’t cleaned my teeth, and last night’s empty wine bottles are still sitting on the counter.
I’m a helicopter mum – I don’t trust anyone else near my kids.
And I’m a perfectionist – I like everything done ‘just so’ (the aforementioned husband has long since given up loading the dishwasher).
So the thought of having strangers coming into our house first thing in the morning and last thing in the evening wasn’t comfortable. At all. But these people aren’t strangers any more.
I’m not talking about our professionals, wonderful though they are – the physios, the OTs, the community nurses, the visiting teachers, who pop in for an hour once a fortnight, into the pre-tidied sitting room, do their particular specialist task with Benjamin, write up their notes and get back to the office.
I’m talking about the agency and the private carers, who get up at stupid o’clock to cycle through the pouring rain while I’m still sleeping; who change dirty pads and sometimes dirty bedlinen, and wash bottoms, and brush hair, and dress Benjamin’s stiff little arms and legs; who take the trouble and the time to learn tube-feeding, and chest physio even though we are their only client that needs it; who bring birthday presents that cost more than they get paid to be here; who wash things up when I’m not looking and help the girls on with their coats when we’re getting late for school; who text me when Benji’s in hospital because they really care how he is; who raise money for us in their spare time; who become friends that I care about, and helpers that I could not be without.
There’s Cameron, just eighteen years old and the best-dressed young man I have ever met, who arrives on the dot at 7:15am to make sure Benjamin is turned out equally perfectly each morning, turns a blind eye to the girls hurling cereal around the kitchen, and keeps me up to date with the East Lothian gossip.
There’s Amanda, who whispers sweet nothings to Benji as she takes off her own shoes and socks and rolls up her trousers to shower him. He literally purrs as she washes his hair; you can see his whole body relax in her presence. She’s the kindest and most selfless person I know, and I can’t believe we are lucky enough to have her in our lives.
There are others too, Christine, who always made Benji’s bed up neater than in a hotel before she could leave, and Julie, who cycled through rain, wind and snow to get to us and still always asked how I was each morning, and Susan, who would do the ironing if she had any of her hour left over.
And then there’s Tracy, who we sadly said goodbye to after being with us from day one; who was way more competent than me at every aspect of Benji’s care from washing and dressing to feeding and medications. She drove all the way from the Borders to put Benji to bed while we bickered over our spaghetti bolognaise. Every time the doorbell rings, Caitlin jumps up hopefully shouting ‘It’s TRACY!’ She will be sadly missed and I hope we keep in touch.
I have no idea why these people do what they do. They work unsociable hours, deal with all manner of bodily fluids (at least in this house), are generally ignored while the rest of us rush around getting our own selves ready for the day or eating our dinner, and are paid peanuts (if they are paid at all: if we cancel with even a few moments notice, even if they are already on their way to our house, for instance if Benjamin goes into hospital suddenly, the agency carers are paid nothing).
Swallowing my pride and baring our struggles to a social worker to get our eight hours care a week was one of the best things I ever did for our family.
We have all got completely used to having people in the house (perhaps too used to it; I gave Amanda a bit of a shock by stripping down to my underwear to put my clothes in the washing machine the other day), that without them the evenings seem quiet, and the mornings, well the mornings are just chaos.
Having people help with Benjamin at the critically busy times of day allows all our children to get the care and attention they deserve. It means we sometimes even get to school on time. It’s brought us new friends and a new perspective on our local community. And it’s a good incentive to buy some new pyjamas.