By Beth Johnsson
A couple of weeks ago, at a staff planning meeting in Manchester, Rachael mentioned Valentine’s Day approaching and ‘how about somebody writing something about romance as Rett parents?’
Foolishly, I laughed, made a flippant comment along the lines of ‘what romance?’ and found I had inadvertently nominated myself as the author…
First thoughts: my husband is unlikely to be thrilled. As it goes, despite my initial reaction, he’s a pretty romantic type, and it would be to do him an injustice to suggest that romance is dead in our house.
Second thoughts: what is ‘romance’ anyway, how do we know when it’s dead, dozing or simply re-defined?
The Oxford English Dictionary defines romance as ‘a feeling of excitement or mystery associated with love.’
When you’re changing bedding (again) at 2am, whilst your other half showers down your trembling 12-year old, before you both re-dress her and then head to separate beds (again) where you will soothe the stirring toddler, whilst he stays to calm the 12 -year old back to sleep, knowing that in 3.5 hours the alarm will ring and the hoisting, cleaning, dressing, medicating and spoon-feeding will begin again, ‘excitement’ and ‘mystery’ are hardly the primary emotions.
When conversations typically revolve around the current status of your child’s bowel movements (who knew these could be a source of such elation and/or desperation), or the latest frustrating development in the fight for her medication, or the necessary amendments to her EHCP, or which WAV will best suit her needs now that mobility is all but gone, it is hard for romance to find a gap to squeeze through.
When every outing, every activity requires careful advance planning: is the route wheelchair accessible? Will there be an appropriate changing place? Will she be able to join in? Will those around us be understanding of uncontrollable shouting?
Such pre-analysis leaves little room for any element of ‘mystery’ or ‘excitement’, and in the absence of any ‘babysitter’ who can be expected to cope with moving and changing a 65-kilo non-mobile dyspraxic child, a spontaneous ‘date night’ is nigh on impossible. Most of the time, the logistics and arrangements required to both go out simultaneously just aren’t worth it.
So where does that leave the romance?
To paraphrase one of the best romantic films I know, I think it leaves it, actually, all around.
Not in the big, wild, demonstrative gestures of days gone by, but in the spaces in-between. In the exchanged 2am ‘I’m glad you’re here’ glances; in the favourite meal shopped for and prepared; in whispered requests to the kids to ‘just let daddy sleep a bit longer’ on Saturdays; in the late night washing up so there’s one less thing for mummy to do in the morning; in the hospital appointment ‘it’ll be alright’ hand squeeze; in the ‘our song’ sneaked into the kids’ Alexa requests; and in the silent mutual agreement that you’d really rather watch Netflix together on the sofa on a Saturday night than do pretty much anything else.
It might not exactly fit the OED definition, it might not be wildly exciting or mysterious or anything close to a Charlotte Bronte novel, but it’s real. And it counts.
Because what’s more romantic than doing life, with all its extraordinary and its extra-ordinary moments, together.