One thing I used to find it very hard to reconcile in my head was how parents of children with disabilities would talk, on one hand, about how their child had brought joy, happiness and newfound serenity and appreciation to their lives while also recounting tales of terrifying hardship, exhaustion and worry. To me, it just didn't add up.
Surely they are over-compensating for their grief and stress, I thought. It must be that, right, because raising a disabled child must be impossibly difficult and it can't actually be possible to wake up in the morning happy, can it? How is it possible to live with knee-buckling fear every day but also have the energy and determination to push on with life, and to find within it inspiration, fun and laughter?
Last week I came across this article by Lisa Belkin in the Huffington Post about a mum of a child not dissimilar to Orange. Not knowing how to communicate to the world just exactly what her life as carer of her disabled son involved, she took coloured pens to paper and drew a map. Tellingly, Cristin Lind says of her care map that "Sometimes you can't see your life until you step away and look". Like most mums of children with disabilities, and often even more so the undiagnosed, Cristin is spinning more plates and juggling more balls than one human being can really manage.
Poring over her map and nodding in recognition, I started to think about how I might communicate what life is like caring for Orange, using images as well as words. Words have always been my default mode but sometimes, just sometimes, I like to indulge in the odd doodle too.
So this evening I snuck into the craft cupboard and sat down at the table with a piece of A4 card and The Beep's set of Gruffalo colouring pencils (ssshhh...), and scribbled away until this happened.
Everyone's experience of raising a child with disabilities is different, of course. And ours will change as the weeks, months and years pass, just as it does for any parent. But looking at this page crammed to the edges with what currently makes up our daily experience of life is both overwhelming and immensely satisfying. It is true to the moment. I think (at least I hope) that it communicates, better than my own words perhaps ever could, that life with our child with disabilities is both difficult and delightful, to varying degrees, and why I now completely understand when parents with disabled children often talk of feeling a gentle fulfilment with life, while also managing a to-do list that would make even the most organised and efficient of folk wince around the edges.