I don’t know if you are familiar with the unwritten rule that there is Always One. There is always one child who is looking out of the window when they should be paying attention. There is always someone talking when there should be quiet. And there is always, always a vest, and you can guarantee that it will be a new one, left over from the first PE lesson of the year, and it will stay, in lonely state, unclaimed at the front of the class, even after parents’ evening has come and gone, until July when you finally consign it to Lost Property.
I have noticed that this rule operates amongst the adult population too. For instance, there is always one midwife who tells you, right at the wrong moment, to Buck Up (or words to that effect). And, and I don’t know if this is a Down’s syndrome thing or not, but there is always someone, in the early days it seemed to constantly be a speech therapist, now, it seems more likely to be someone on the internet, who seems to feel the need to disabuse you of your self-deception. Things are nowhere near as rosy as you keep on insisting on painting it, Nancy.
I do wonder if it has something to do with the ‘not getting your hopes up’ mentality. You know the one I mean; that if you don’t expect too much you won’t ever be disappointed. I get it, I really do. Most people mean to be kind, and they don’t want to see you struggling with the aftermath of a proper crushing in the hopes and dreams department (why they think it’s better for them to do the crushing, I have no idea, now I come to think about it). You can see it, every time someone justifies the termination of a pregnancy discovered to be carrying a little extra in the chromosome department. Cruel to be kind. Yeah, right.
You see, what these people, these prickers of the parental bubble, don’t understand is the very fine balancing act that happens, when you have a child like mine. What they don’t understand is that the grief you feel is not so much for the mythical child you didn’t have, but for the future expectations you thought you had.
Suddenly, instead of being on a journey of discovery, you are presented with a fait accompli, and more, one described in medical terms of risk and disaster. Terrifying, rather than exciting. A journey of fear and loss, not one of joy and discovery. It’s one of the things I resented most; the idea that my child’s future was written in stone, that because of his genetics, I was somehow not allowed to dream of his future. My child’s book was closed, not open.
Well, I don’t know about you, but I’m not very good at paying attention to such people. Tell me I can’t? I instantly want to prove you wrong. So, the odds may be stacked against an offer for an undergraduate place at Oxford? I don’t care. He may never speak? We’ll see about that.
That’s what it is, you know, to be a mother like me. It’s a wilful act of ignoring the things that don’t help, but instead trap, shut down and dispel hope. Like I used to say when debating nature or nurture and boys and girls, the truth of the matter doesn’t matter in the end, because the most important thing you need to hold on to is the faith, not in what is but what might be, if only we can catch, and hold, that unreasonable lack of unbelief.