They tell me it would be nice to be in this place. They try to convince me that Samantha's life ~ and of course many other children's ~ are not so bad. They get to ride lots of buses, get shunted from pillar to post, their arses wiped, face washed and generally bossed about by those of us that know what we're doing. I know, it sounds like the blind leading the blind, but it's all we've got. So if you're the caretaker of someone where the lights are on but nobody's home, you've got the delightful life's responsibility of caring for another individual who'll never grow up TO BE LIKE YOU in anyway whatsoever. They might have the some coloured eyes or something. Or the same hair. But they're a chromosome short of the full set. They might be sweet to look at, but if they are, they don't know it, and it'll never be anything they ever have to worry about, because no one could give a shit what you look like when you're crazy.
Of course I take all this information and soak it up, trying to tell myself, as they do, that she's one of the lucky ones who can just sit around and do whatever the fuck she wants, because she doesn't have any capacity to think for herself. Oh joy! Wow let's have a party! Start popping those Champagne corks baby! This is a blessing in disguise ... BOLLOCKS I'M AFRAID.
Well meaning sweet things to say to someone who introduces you to their looney child and they don't know what else to spout forth but affirmations like that. What I really feel like saying to them, in my darkest hour, is something I'm not particularly proud of. In fact it's downright shameful what I'd say ...You're only saying that because it happened to ME! If it had happened to YOU you'd be crying in your beer and smashing your fists against the table and gnashing your teeth. You'd cry when you were alone. You'd wish that GOD hadn't hated you so much as to give you a child that will never talk back to you and makes crazy noises and smashes her head in all day long and shits her pants. Try coming and fucking looking after one of those for the rest of your lacklustre life and tell yourself that it's ok, she's having a fantastic life really.
I think the worst thing of all is the constancy of it. When people that you know die, it's hard at first, but then you get used to them not being around and although you miss them sometimes, life gets back on track. With a disabled child, the sadness will last as long as you do. Unless the child dies beforehand of course. Which would tear you apart as well. So either way, it's a fate worse than death, quite literally.
So if you happen to be a parent like me who when her baby daughter was born dreamed of her having sweet kisses from boys and prom nights and fancy dress parties, and who ended up with a medicine swilling autistic and constipated epileptic, you would have had your dreams snatched away from your forever, only to be replaced with a constant nightmare that you must be responsible for until you die.
So forgive me if sometimes I'm a little angry at life. Not just for me or her either, for the plight of humanity.