For a few months Aoife suffered fits of misery. There I’d be, whizzing around the kitchen or tip-tapping away on my computer, and I’d turn around to find tears and a drooping lip. Something was wrong.
Aoife has always had noisy spells. She used to specialise in a loud hum which often infuriated her family, though it did not distress her. But Aoife hardly ever cried—neither bumps, injections nor cross siblings affected her equilibrium. So we chased up other suspects—chestiness, constipation, change. Sometimes they seemed to fit; other times they clearly had alibis. The tears continued. Not continually, not inconsolably, but too often for comfort. With a lot of effort on my part and input from Buddy Holly, Leonard Cohen, Donovan et al. she would eventually produce a weak smile.
I realise how little I know about Aoife, really—how little it is possible to know someone who communicates only through body language. I hear my own false-cheerful voice rabbiting on about what we’re doing, what we’re going to do. A nice shower, some nice yogurt, your bus coming… what a phony jolly world! Should I shut up? But Aoife does connect words to some things, and the only way that skill can survive is through the spoken rather repetitious word. Normally she catches my eye when I talk to her. Once, when she was 8, she said, ‘No’, when I asked if she wanted a drink. I nearly dropped the cup. But that was a one-off. Sometimes I try to get her to say ‘mama’; occasionally she makes ‘mm’ sounds, but they don’t seem terribly meaningful. As a baby she had a few words, as a small child she recognised people’s names… but it’s not clear what she understands nowadays. It’s hard to keep talking to someone who doesn’t answer, doesn’t smile or meet your eye.
A sad child, of course, is a mother’s guilt-trip. Nowadays everything is psychological, isn’t it? And/or one’s mother’s fault? Could it be her change of unit, me working outside the home? Am I paying her enough attention? (Is there such a thing as enough attention?) But it’s not just me; Aoife applies her sadness without distinction. The people in her Unit and on her bus worry too. We try out things, exchange theories. Then others’ distress at her sadness wears off. Family members get irritated when it interferes with their television and wheel her out of range; I get reluctant to ask anyone to babysit. And I’m very tired of Buddy Holly and Leonard Cohen. (Memo: introduce Aoife to wider range of music when she’s in good form.)
Though not particularly good on the comic relief, I try to keep Aoife amused. We play the piano (any volunteers for The Entertainer?), she goes in the hammock, we go on walks, we visit understanding friends (those that won’t take tears personally). We revert to child-centred places, eating our chicken nuggets through tears—but lots of others are crying louder, and McDonald’s does provide a quality service for wheelchair-users. We carry a walkman everywhere—but Leonard and Buddy sometimes pall, through overuse. I cast my mind back to past favourites. ‘We’re going to the zoo, zoo, zoo’, I sing, avoiding the eye of passing teenagers. Monkeys scritch-scratching, seals auk- auk- auking… Are four verses sufficient for a mood change? And am I rewarding bad—sorry, negative—behaviour? Should I continue singing when Aoife seems happy? (Maybe I could tape myself…)
Aoife likes Jewel, so we go to her concert in the Olympia. (By the by, wheelchair places in theatres are like gold-dust—you have to book as soon as a singer is advertised, and even then you may not get a companion seat.) During the support act, Aoife seems fascinated by the arc lights and the music…but half an hour after Jewel comes on, she’s crying again. I take her on my lap and stroke her hands and cheek, but to no avail. On the acoustic numbers her wails are audible. So we struggle out and get the security man to release us.
Maybe she’s sick, in pain. We go to the doctor. Aoife has blood tests. Nothing emerges, though there’s a limit to what they can find without a patient’s cooperation. The doctor suggests pain-killers, anti-depressants, maybe a psychiatrist. I’m reluctant to go the anti-depressant route—I don’t want Aoife to get drowsier. And how would a psychiatrist deal with someone who doesn’t talk? We try aspirin or paracetamol when she seems most upset—along with lots of attention (or what I think is lots of attention. Does Aoife agree?). I reread the literature. Yes, girls with Rett Syndrome are subject to periods of ‘unexplained sadness’.
Gradually the sad spells diminish. This summer Aoife’s been fairly chirpy, and I realise how lucky we’ve been overall. Sad people have less fun and there’s nothing more infectious than misery; it makes the carer wilt and doubt, frightens away helpers. After all, Jesus only had to raise Lazarus from the dead the once; but would he have found ways of raising someone from misery day after day?
The mystery of Aoife’s unexplained sadness remains, but hopefully she will still be smiling when you read this; however, if you meet a wheelchair-pusher croaking her way through ‘Going to the zoo’, don’t assume she’s for the birds—there may be method to her madness.