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She's the sister we will never know

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'I said Mary would be a great sister and would always be there for her'

'I said Mary would be a great sister and would always be there for her'

'I said Mary would be a great sister and would always be there for her'

I was summoned up to the elder one. She was in bed, crying. She told me she wished she didn't have a sister with special needs. She told me she loved Mary but she just wished sometimes that she didn't have special needs.

"I just wish for one day she didn't have it," she sobbed, "that I just knew what it was like. Just for one day. But I'll never know what it's like."

It was a thought I hadn't allowed myself to have for a long time. It was never a thought I hugely dwelt on. I generally don't bother wondering what if, or imagining some other life we could have had or the other person Mary could have been, because she's not. And as the elder one points out, it's never going to happen. We are never going to know what that other Mary might have been like. So I guess you focus on the Mary we have. And we love her. And she can be very challenging. And sometimes you see another kid her age and you realise the gulf that is opening up. But I just don't allow myself to go there. You can't compare. You'd be too angry and too upset. And you can't think about how much easier so many things would be if she was different. You change your life in all these incremental ways, and you try not to notice. Because there's no point. And anyway this is the only life we have now. And if there's one thing that I notice more and more as I go along in life, it's that bitterness is the most corrosive thing in people as they get older.

And you can't think about the future either. But I spoke to the elder one about the future as she cried in her bed. I told her that yes it was a pity, and that it got on top of all of us at times. But that Mary would be a great sister and would always be there for her and would always look after her. And that some sisters aren't friends any more when they grow up, but her and Mary would always be best pals. And this is all true. But in a much more complicated way than she imagines.

I told her too that things might be different if Mary hadn't special needs but that we probably wouldn't be such a close family and we wouldn't do lots of things we do. And that is all true too, but again, in more complicated ways than she thinks.

She kept pointing over to her sister next to her in her bed, saying, "I do love her. I just wish I knew." She was very keen to stress she loved her. And I told her it was OK. That just because she wished things were different, didn't mean she didn't love Mary. That was one of the first struggles six and a half years ago. To not feel you were betraying Mary by wishing this accident of birth hadn't happened.

I was dismissed and the mother summoned. Her mother explained to her that it happens to us all. We call them Down syndrome days in our house. You just get a day when it's too much, too unfair, too shit. She said to her that Mary would have Down syndrome days herself too, just not yet. I actually suspect Mary does have them, but she just doesn't know what they are yet. Like when she doesn't want to go to gymnastics because "It's too hard. I can't do it." But she's aware in her own way that the others aren't finding it too hard.

I went to the launch of 'Share the Care' last week. It's an initiative by family carers Ireland that wants to make 2017 the year of the carer. The key message is family carers should not have to care alone. They should be supported by the state more and by friends and family and all of us. Carers don't tend to like to ask for help sometimes. Sometimes they don't even call themselves carers. They just do what they do because that's what you do for people you love. And that allows us all to take them for granted and undervalue them. Because we think about how loving and heroic they are, while often their lives and their mental health and their physical health are all falling apart.

At the event a woman who had cared for her father and mother told me that she thanked the nurses when her father died for allowing her to be his daughter for the last two weeks of his life, and not his carer.

And I thought of my little girl. And I wondered if she already had some inkling of how things might end up with Mary. And if what she was yearning for as she cried was to just be Mary's sister. Sometimes it must seem like a one-way street. And I realised I had to make sure she will always be a sister first.

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