I don’t often watch TV. This isn’t cultural snobbery on my part. It’s more laziness, in that I can’t be bothered to find out what’s on, and denial, in that I most definitely now need my glasses to be able to see and operate the thing. It’s far easier to pretend there’s nothing on that I want to watch.
But tonight there was. Tonight, a programme that I’ve been meaning to tune into for a while but have kept at arms length because it’s often just a little uncomfortably close to home, was airing an episode I couldn’t not watch. This episode of DIY SOS was brought to my attention by one of the lovely SWAN mums who has become a good friend and I decided it was high time I put my own fears to one side and give the programme the attention it so deserves.
For those who don’t know, DIY SOS ‘The Big Build’ on BBC1 is Nick Knowles and his team, recruiting teams of volunteers to transform the homes of families across the UK. Often, they choose families who have a disabled child for whom essential home adaptations need to be made in order for normal family life to continue. They work tirelessly to provide accessible, homely, stylish living accommodation for families in need.
Before Orange, I had no concept at all of how inaccessible most homes can be for a disabled person and the strain this puts on the entire family to manage, to cope when, actually, their home offers them anything but comfort. Stairs, baths, toilets, beds, uneven flooring, sloping gardens, previously un-noticed, quickly become a major barrier to family life. (As Orange gets bigger, and heavier, and no more aware of danger, I am beginning to understand the complexity of this challenge. Much of our home is easily adaptable, at a cost. Much of it, less so, or at vast expense. Having no idea what Orange’s future holds makes it somewhat easier to stay in denial. Or hope, if it’s a good day.)
The team at DIY SOS completely get it in that they totally transform family homes to meet the complex needs of a disabled family member, while also remembering that this is a family home. A home to be loved, enjoyed, laughed in, relaxed in. Not just a functional space to be peppered with plastic equipment and plastered with vinyl, like so many local authorities would have you believe. The DIY SOS team achieves something wonderful and life enhancing. They do so, all the while maintaining the dignity of the entire family and allowing them to be normal in their own home, perhaps for the first time in years. To do regular family things, like sit around the table together at a mealtime, or enjoy each others company in the garden on a sunny day. To take a bath, without breaking the back of another, or to safely get in and out of bed, or to the loo. Simple things that most of us do without a second thought. All without ripping the heart out of a family home and rendering it a makeshift hospital, or leaving it resembling a 1980s council run day centre.
I watched tonight with my heart in my mouth because we are just starting the process of applying for council grants to adapt our own home to suit Orange’s needs. This is often the first step, for most families who need a home adapted due to disability and is known as a Disabled Facilities Grant (a bureaucratic nightmare of course, and sometimes this works out, other times councils find lots of spurious reasons not to help.) Due to cost, we are having to do this in stages. The garden adaptations to fit a lift and ramping will likely exceed £30,000 alone. This is before we even start on the inside of the house, with its uneven slate flooring and narrow cottage staircases. It’s going to be a long road but I am hugely thankful to Orange’s occupational therapist who is supporting us all the way. She is worth her weight in gold and we are extremely lucky to have her. At the moment I am cautiously optimistic things will go our way.
But more than that, more than anything, I am thankful that we have our lovely boy with us. The family in tonight’s episode of DIY SOS will forever hold a little piece of my heart. They lost their gorgeous young boy just months after their home was adapted for their needs. The practical challenges of making their house a safe and manageable family home were, ultimately, surmountable. With human kindness, money, hard work and community spirit those needs were met. But nothing can fix the loss of their beloved boy.
Tonight, I snuck up into Orange’s room and gave him a long, warm cuddle. Snugged up in his bed with Bert, Ernie and a number of other cheery little characters, he slept peacefully and comfortably as I wrapped myself around his warm little body. And I felt thankful. So thankful. He is here. Everything else, we can conquer.