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My heart twists painfully. I’ve been trying not to feel angry with Matt for the way he’s disengaged, and I haven’t succeeded. It’s revealed itself in a snippy tone, a frosty look, which has made things worse between us, but right now I feel only empathy – and sadness. So much sadness.
‘I want us to stick together on this, Matt. That’s all.’
‘I know. I do, too.’ He looks up again, despairing. ‘You’re so much stronger than me.’
‘I’m not, Matt.’ I put my hand on his shoulder. ‘I’m really not.’
We stay like that for a few minutes, neither of us speaking. It almost feels peaceful, as if this heavy weight that has been bearing down on me has eased, just a little.
‘Do you think I was too harsh with Anna?’ Matt asks eventually. ‘She wants to help.’
‘Then let her help. God knows we need it.’
‘And Alice?’
The question hangs in the air, as if I can almost see the words spelt out. And Alice. Always Alice between us, but for the first time I wonder if it doesn’t have to be that way any longer.
But then Matt shakes his head. ‘It’s too complicated. I can’t think about it, not on top of everything else.’
Which was my excuse for hiding upstairs. Whether she means to be or not, Anna is a complication in our lives that we don’t have the emotional energy to indulge, and I know that she is the one who will pay the price.
Any worry or guilt I feel over that, however, diminishes in light of everything else – dealing with Alice’s constantly changing and growing needs, her medication, her moods. Our sunny girl has periods of darkness, just as we do – days when she doesn’t want to get out of bed, nights when she can’t sleep. Sudden rages when she realises there is something else she can’t do; yesterday it was brushing her teeth. She threw the toothbrush at the mirror, and then started hitting it with her fists, causing it to crack. We ended up in A&E, getting three stitches put in her right hand where the shattered glass had cut her.
Every day brings itself a new challenge, and yet also surprising graces.
One afternoon in early March, I am standing by the school gate, avoiding everyone as usual, which seems to be the easiest option for both me and them, when another mum approaches me.
‘You’re Alice’s mum?’ she says with a smile, and I nod, because everyone knows that now.
‘I’m Jane, and my daughter Violet is in year one. I was wondering if Alice could come over for a play date? Although they’re not in the same class, they play together so well.’
I stare at her dumbly; it is the very last thing I expect. In fact, lately I’ve been wondering if it’s worth keeping Alice in school at all, with all the challenges, and the way some of her classmates have started to look at her. They’re too young to understand, or to filter their words.
Why is she walking funny? Why can’t she talk normally? Why is Alice so weird?
‘A play date…’ I say slowly, because I’m not sure that’s possible.
‘I know there are additional needs,’ Jane says gently. ‘And if you want to come along too, that’s absolutely fine.’
Just then Miss Hamilton opens the door, and after the first rush of children, I see Alice walk unsteadily out, hand in hand with a little girl with brown hair and a gap-toothed smile I don’t recognise.
‘That’s Violet,’ Jane says proudly, and as the two girls come closer, I realise Violet has Down’s syndrome. Jane confirms it with her next words. ‘They got to know each other, because they both have support workers,’ she explains. ‘And they ended up doing things together.’
I nod, fighting a lump in my throat. So the special need kids get lumped together. It’s to be expected, and yet I resist the notion. I don’t want that for Alice, and yet that seems wrong.
‘I know it’s hard,’ Jane says gently. ‘It’s not what you wanted.’
Which makes it sound as if I placed an order for a child the way I would for a meal in a restaurant, and picky customer that I am, I’m going to send it back. ‘It’s what is,’ I tell Jane, making my voice firm. ‘And I’m sure Alice would love to have a play date with Violet.’
The play date is, of course, a big deal. Alice has had only a few play dates in her entire life, back in preschool, and I always went along. This time, however, she is insistent she wants to go by herself, even though I am terrified that something will happen and it will all go wrong.
‘Violet’s mummy is going to take us from school,’ she tells me. ‘And we’ll have chips for tea!’
Her words have become more slurred in the last month, and sometimes it’s hard to understand what she says. I wonder if Jane will be able to understand her, and I try to quell that persistent tremor of fear. ‘It sounds amazing, Alice.’
But I am still in a ferment of anxiety for the whole day of the play date; I have to resist walking to the school gate, just to check that the pick up goes off all right, at the end of the school day. I tell myself this is luxury, having time to tidy up, pay some bills, look into the conference for Batten families that is in Florida in July. The hours tick by, terribly slow, and finally, finally, it is time to pick her up.
I hear the squeals of laughter before I’ve even turned into Jane’s drive. I hesitate, stunned and more than a little apprehensive, as I see them both jumping up and down on a trampoline in the front garden. Should they really be doing that…? Alice falls on her side, and I hasten forward.
