Can you combine two lives? Could I mould my old life as an embryologist with being a boat-based mum? It would be so tempting to try it. And then I remember the other thing. Where you do one thing properly at a time. Ha! At the mention of it, Lulu would be falling asleep right now. Delph making a low and strangled moan and Jack would be singing his favourite ‘boring and stupid’ ditty. Why do I always have to be the straight one? Still, I got it. Doing things this way is a luxury I’ve been afforded. And I’m not going to look a gift horse in the mouth. This means that while Lulu does her school work with increasing independence, I have more time to teach Delphine. Ahh, Delphine. All sea roads leading back to Rome. If you don’t mind, swim with me for a moment.
During our time on Quest, Delphine’s education is a collective task. We are all involved. It’s another aspect of disability that I couldn’t anticipate in advance. How the whole family lives it. Example one: Lulu putting up with endless repetitive questions as Delphine really tries to understand something. Lulu does it with ninety percent grace and ten percent angry bulldog. Not bad. Example two: times tables practice. The five-times table being one of the easiest to master, right? We have discovered this is not necessarily true.. Example three: Delph won’t flush Quest’s toilet. It’s a sea toilet but not a manual one. The toilet just requires the prolonged use of electronic button pressing. Instead for Delphine, it’s, ‘Dad!’ every time. Dad being the resident nice person/sucker on board.
Then there is the matter of Delphine’s reading. My holy grail. Questions around this matter include; will Delphine ever do it willingly? Will it ever not be accompanied by an, ‘I don’t want to,’ or ‘Do we have to?’ or ‘How long do we have to do it for?’ Or should I just send this kid to school and put my feet up? But if I send this child to school, what will happen to her? The schools in our area don’t exactly specialise for kids who are brilliant in their own way. Of course, they do their best but it’s a big ask, especially with nationwide, decade-long, credit-crunch cuts. And although this is a real question, it’s one for when we go home. Right now, in beautiful Barbados, Quest is our school setting. This means we have a big pile of books and we get on with it.
Sometimes things can work themselves out. Through writing this, I’ve realised that ever since the whole experience of disability has entered our lives, everything is also a little more exciting. Like literally. Getting on and off Quest in a roll, watching Delphine climb boat ladders and kayaking into shore are current examples. But it can also light a fire that smoulders preciousness. For us, Delphine’s diagnosis set off a chain of events which led to us being here on Quest almost a decade later. Disability can be unpredictable and terrifying. You wonder what on Earth is going to happen to this potentially vulnerable child when you’re not here anymore. Even though I shouldn’t, I end up wondering this a lot. Late at night being the perfect time to suck on this brand of darkness. But it also makes me wonder. How much you create your own luck in life? Do we carve it out like some kind of honorary statue? Or is luck a gift, given through the things we can’t change? The problems that can’t be solved? These are our twinkling stars.