KNOWING NOT KNOWING

SWAN :The very name of this project is all about the lack of a diagnosis and the advantages and disadvantages of having no easy answers or way to explain M’s difficulties. The text below was written as we were waiting for the results of genetic testing that we had reason to believe may have shown chromosomal damage of some kind or evidence of some kind of genetic reasons for Ms difficulties. KNOWING NOT KNOWING Writing this on eve of going to genetics appointment, we have waited 16 months for these results, wondering if we will have to change the name of the project, the SWAN may be about to have it’s neck wrung after all. Out in the hallway now, thudding heart, trickles of sweat, rising panic that will make an idiot of myself and forget every word of Spanish I know because I’m nervous. Weirdly transported back to the days of M as a toddler failing to meet all the benchmarks and starting the weary process of investigations, always wondering if my own inadequacies in some way impacted her difficulties, the logical part of me knows this is utter nonsense this displacement activity of blame and justification, I can’t catch a ball, I fell off a stationary exercise bike for gods sake, of course my kid has difficulties with coordinaton.. but it’s the secret fear its my fault, and that the genetics will reveal the magic bullet of information at last, if not mine then why why why,a voice I haven’t heard in such a long time and thought had buried but here I am wondering once more about my oppositional footwork as I wait to enter that office . So last time we were here almost a year ago when they took the tests, the geneticist was straight out of central casting for some tv hospital drama, tall lean, messy grey hair, sharp, attractive face and utterly condescending manner. Tableau completed by the nervous young female interns perched nervously by his side. The younger looking of the two looked on the verge of tears when he slammed the desk with his hand and had a full on hissy fit when I failed to produce a full set of Ms medical records –eh? I was told to bring her for a blood test never occurred to me (naively) that I needed to bring a ten year case history, of course in the esprit d ‘escalier I had a rousing speech in perfect Catalan to deliver asking why he had to turn what is clearly a stressful appointment for any parent into an intimidating confrontation, he was so theatrically tortured by my inept attempts to explain why I was there that thankfully rather than reducing me to tears like his intern I instead let out a huge guffaw of somewhat inappropriate laughter instead which had the fortunate effect of stopping him in mid tantrum so he then abruptly switched gears and gave me the full charm offensive instead. Truly surreal encounter first time around and had him mentally filed under condescending professionals best avoided until today when I find myself once again in his waiting room waiting to find out if there are any secrets to be unlocked from that year old vial of blood that has been all the way to California and back. Whether it’s good bad or no news at all I hope he at least keeps his temper this time. Just in case I have my little how dare you speak to me like that speech written in Catalan in my pocket, been practising it in my head all morning, its like going to the Oscars with your thank-you speech pre-written just hope I don’t have to practice my happy loser face too.