Because there’s been steady progression and because we have hope, and because she’s so utterly beautiful, we were telling ourselves, subconsciously maybe, that all could turn out well; that, hey, you never know, Maggie could even make a full recovery.
We had the results of her MRI scan yesterday. It wasn’t good news. It turns out, of course, that her brain has been damaged. Damaged in localised areas that basically take care of her limbs. On both sides of her brain, affecting all of her limbs and trunk. Worst case scenario: quadriplegia. Best case scenario: some kind of moderate physical disability.
Plus she’s still having difficulty swallowing and her gag reflex isn’t very strong.
I could elaborate further and try to go through the heartbreaking discussions we had with her consultants. But I don’t need to do that because, essentially, we’re in a waiting game. How she will be in four months will tell them, and us, more. How she will be in a year will tell even more than that.
So what remains is: Come on sweetheart, you can do it! Don’t do what the Saxtons have always done – underuse their pretty impressive brains. Your sister Louie is using hers so you can use yours. You never know, working a Saxton brain may yield great results! Go on girl!
I was watching Gok Wan last night (I like a bit of Auntie Gok) and found myself getting annoyed with the gaggle of idiotic women on there whining about their self-loathing and body issues. Body issues? How about this for a body issue, you narcissistic, self-obsessed cunts: spending the rest of your life in a wheelchair? Are you too fat, too thin, tits too small, hips too wide? Get to fuck and get a fucking grip!
But then I thought about all that this morning and decided what I don’t want is for Maggie’s condition –whatever it might be – to be used as some kind of weapon. I’m bitter and angry enough without using my daughter to fan the flames. If you see what I mean. I once theorised about David Blunkett and came to the conclusion that the reason he was such an unpleasant, hard-hearted (pragmatic, he’d say) man was because of his blindness. His whole philosophy and attitude to life seemed to be based around: “I’m blind and had a terrible childhood, yet I got off my arse and did something worthwhile. So why can’t everyone else do it?” Really, that’s no way to live. So, as hard as it might be to listen to what is, in comparison, trivial shit, I’m going to try not to get too indignant. After all, it’s not their fault – those idiotic, self-obsessed women – that my daughter’s in a state.
I don’t want a disabled daughter. I want her to be normal. And I’m not going to apologise for using the word ‘normal’. I’m not yet ready to buy into ideas of ‘differently abled’ and all that crap. She’s disabled. And being disabled could well be very horrible for her.
And for us. Personally, I’m rubbish at dealing with even the most minor difficulty and inconvenience. I like an easy life. But then my daughter isn’t a difficulty or inconvenience. She’s my wonderful, beautiful, amazing daughter. She’ll be hard work, that’s for sure. But I’m up for hard work when it comes to her. And if she wants me to carry her around for the rest of her life, I will. Honest. I won’t promise, however, that I won’t moan about it and give her a bit of a hard time about it. But I will do it. As will Shannon. Not because we have to - because we want to.
I used to joke with Shannon that if we had a disabled child I’d be off. It just goes to show you what a fucking liar I am.
The day after Maggie was born, a nurse at NICU started telling me (before I stopped her) how it might be a good idea to talk to parents of disabled children because they could tell me how rewarding it is. Well, I’m afraid I’m not yet ready to buy into that either. I don’t know, it might seem cruel, but I’ve always thought there was something rather nauseatingly pious about those kind of people. But then that can be true of parents with normal kids. It’s like this badge of pride for them and being a parent is all they’re about. Sod that. Maggie’s going to be very, very special. And she’ll get the very best care, love and attention. But if you ever hear me banging on about how rewarding and fulfilling it is for us bringing up a ‘differently abled’ child, then please kick me hard.
This is easier for me than it is for Shannon. The advantage of having a shallow, magpie-like mind is that I can turn certain thoughts off and quickly focus on others. That’s not so easy for Shannon because she likes to think about stuff. I always told her that that was a mistake but there you go. The trick, I think (and thanks to Saeeda and Helen in the comments for this) is to go day by day and not project too far ahead. That’s easier for me than it is for Shannon. She likes to plan ahead and know what’s going to be happening.
So she’s got to work with that and the fact of her daughter being very, very ill. But she’s doing brilliantly at the moment and I can’t tell you how proud I am of her.
So if you haven’t already, why not send her some love? It’ll mean the world to her while costing you nothing. And it really does help.
Alice will be home, here in the house, on Saturday morning. She’s feeding, sleeping, making lovely noises, rolling around and doing everything a normal baby should. Despite her sore, and very red, bum. Hurrah for Alice!
And hurrah for Maggie and hurrah for Shannon!*
*Let me know when that ‘Hurrah’ thing gets annoying....