Nobody likes an information vacuum. And Small, with his un-diagnosis, is exactly that – a vacuum people feel the need to fill.
Over a period of ten days last month here are some scenese from our life:
We are on the school run – Big scooting on ahead with the boy from down the road, me pushing Small in his pram walking with the boy’s mum. I know her well enough to say hello to, pass the time of day with. We are not close. She is asking about Small and the results of tests we had done a while ago which had, once again, left us no further forward with answers. She asks these questions more than most people do, more than I encourage her to do, but, as we all do, I try to answer them.
‘Have they gone through his birth notes?’
‘Have they looked back to see if this was something that had happened at birth?’
‘No, they’ve… no, it’s… we’re looking at genetic syndromes’.
‘It’s just, to me, this looks like something that happened at birth. Although, what do I know?’
And then she leaves me to tie her dog up outside the school gates and walk her son to class.
I am at the local playground with a new friend, her two children and Small. Small is in his pram, happily watching the other children and this woman is asking sensible, thought-out questions about Small after I’ve introduced the subject. She has even helped me get him into a swing. He loves a swing, but he’s a two-person job these days due to his dangly legs. We meet someone she has met at playgroup once, maybe twice. This woman clocks Alex in his pram, not out playing with the other children and comes over to him, takes his hand, makes baby noises to him. She does not say hello to me or ask Small’s name.
‘What’s the matter with him, is it Cerebral Palsy?’
I am dumbstruck. I take a short breath as if drowning, snatching for air. I do not want to offend her, or my new friend, but… ‘I’m sorry, have we met…?’
An e-mail arrives from a relative. It is 10.30 at night. At the end of it he asks, ‘Have you thought of William’s Syndrome?’
It is all I can do not to Google it. Which in the end I do the next day. It does not sound like Small. This relative has promised never, ever to do this again.
Each time someone does this, it ever-so-slightly rocks my foundations. Nudges the world I have built for me and Small and his symptoms with no name. I have to go right back to the start, convince myself that we have looked everywhere for answers, asked the right questions, made the right people delve into his very make-up for clues. We have done all we can.
These remarks are never taken lightly as on some small level we’d all like a diagnosis, a path, for our children… and I would just ask that people take a moment and ask themselves who they are trying to help when these verbal hand grenades are thrown, so very casually, out into the air.