What makes a home?
Four walls and a roof over your head? A place that you love, where you feel safe and happy? Somewhere that you can make your own?
Filled with trinkets, dust and clutter or Kon Mari’d to the hilt, a garden with pinstripe lawns and bursting with flowers, or over flowing with children’s toys, are our homes not are an expression and extension of ourselves, who we are, and the people, experiences and things that are important to us?
If you’re a Five Year Planner, a Zombie Apocalypse Prepper, or a fan of lists and spreadsheets (like I am) you will understand how moving into a very old house desperately in need of a top to toe refurb (as we did) and not being able to do it, or even plan properly for how you might do it, (as we haven’t) is enough to make you want to run away, drink gin and live in a tent.
Four years since we moved in, really, I just want to put the whole house in Room 101 and hide under canvas on a cliff top. Right now our home unabashedly tells the story of us floating about in limbo, of hopes as yet unrealised and of best intentions to help from the council that failed.
Because as much as I’d like to start re-landscaping gardens, ripping out kitchens and replacing windows, we have had to hold fire on everything but refitting the makeshift loft extension because we have to adapt our house for Orange. So he can do simple everyday things like get in and out of the house, move around the house in his wheelchair, sleep, eat, bathe and dress.
Our first attempt at adaptations didn’t go so well. You might say.
Expensive. Tearful. And full of F words and C words I don’t wish to repeat.
For the last two and a half years, our garden has been impersonating an industrial wasteland (we are sorry, beautiful Downderry), with lifts that don’t work how they should, concrete paths that shouldn’t have been laid and a striking 1,000 litre plastic oil tank as a stand out feature piece, sitting taped and cracked, proud and high like a mocking memorial to the whole sorry, and expensive, process.
“Beautiful sea view you got but, you know, I just adore that tank!”
We didn’t want lifts in the garden just for kicks. For the Waitrose man to bring the shopping up in or for snails to find comfy homes. After falling down the steps carrying Orange, we needed adaptations and we needed help from the disability adaptations experts at the council to get them right and help us fund them via the national Disabled Facilities Grants scheme.
A system supposedly set up to help people just like us.
And yet the system failed us when we were at our most confused and afraid, with a little boy who couldn’t walk but no-one could tell us why or whether any of the gruelling physio and therapies we were instructed to do every day would actually ever help.
An ill-conceived job, put into the hands of people who were quite happy to take the council’s Disabled Facilities Grant money and disappear off on holiday to Goa, leaving ancient and decrepit workmen who should have long retired to complete a job they were unfit and unskilled to do.
I am relieved and happy to say that the adaptations team at Cornwall Council have made a lot of changes to how they do things since our experience. There are some dedicated, kind and thoughtful people in their team who have listened and who really do want to make things better.
But that doesn’t change the fact that the cost to fix this mess and to build a safe and functional way in and out of the house for Orange is eye watering.
And like a string bean, the boy just keeps growing. It’s not just the outside that needs adaptations, but the inside of our house now too.
I have walked miles around my own home over the last couple of years, trying to visualise where a through-floor lift might go, how we might fit in an adapted bathroom for Orange, where ceiling track hoists might go…
Do we need to widen doors? Move the stairs?
Change bathrooms into bedrooms and bedrooms into bathrooms?
What is that pipe? Where does it go?
Do we need to lift the flagstone floors?
How much will it cost? Can we afford it?
And so four years in, we are campers in a home we haven’t yet really made our own. With the exception of the living room which has been adorned with the permanent marker of a small girl who thought the ambiance would be much improved by a giant black lighthouse on the wall, we can’t do anything much at all until all the adaptations are designed, built and paid for.
All tent jokes aside, we have considered moving. We really, really have.
But it doesn’t solve the problem that whatever house we live in, we will have to adapt for Orange. And there really are no step-free bungalows on a flat piece of land, with wide doorways, hoists, adapted baths and enough space for a growing family anywhere within a sensible commuting distance of the children’s schools and work.
There just aren’t.
In truth, at £30,000, the DFG is a dinky pebble in the ocean when the cost of a lift alone can be £20,000. Even with a DFG for the outside, and a DFG for the inside, we will need to find money in the tens of thousands to get the jobs done and have a house that is functional, habitable and doesn’t look like a hospital. Or an industrial wasteland.
It’s just the way it is.
And so with blind faith we are leaping into the chasm of asking the bank for large amounts of money and hoping that eventually we can one day pay it back.
Because what is the choice? Really there is none.
When people are surprised that I have fought to maintain my career, that I work a full time job while being a parent carer, this is why.
It is one of the reasons why I don’t take kindly to criticism of me being a full time working mother, from those who think I should be a ‘rock’ at home for my children, or that I have ‘made a lifestyle choice to work’ (yes, there are still people who think this way).
It is why I will continue to campaign for the rights of working parent carers to hold on to their jobs when people and systems around us tell us that we shouldn’t or that we can’t.
Because disability is expensive. And the more disabled you are, the more expensive it is.
And so until I can galvanise to campaign for Disabled Facilities Grants to cover the actual cost of adaptations (because right now, they don’t touch the sides), we, and many other families alongside us up and down the country, step, headlong, into the Money Pit.
Wish us luck.