Funny, extolling the virtues of Alex is ok, but talking about Emma feels different. She can talk for herself after all. I’m not boasting here, not saying she’s best daughter ever – we’re well aware of the foibles – but simply: here’s why we love her.
Emma. We – I – never talk about Emma.
She rocks our world.
When our lives were unravelling as we saw that Alex was not the baby we’d expected she kept us going.
She was my reason to get up in the morning when all I wanted to do was ignore this other part of my life, stay in denial, not go to yet another meeting with yet another medical professional who would say, yet again, ‘We don’t know. We can’t say. Now off you go…’
She made us stay connected to the real world. Just by existing. We had to get her to school, we had to get her to clubs, she needed feeding. If it had just been the two of us with Alex… I don’t know…
It was harder no doubt having Emma too because we had to keep her in mind… But because she needed normality, as much as we could give it, we stayed in it too. It gave us another focus.
No question, she must have changed because of Alex. All children change when they go from being ‘only’ to having siblings and so it’s hard to tell where the blurry line from ‘sibling’ to ‘sibling with disability’ lies. But whilst the focus is naturally always on the new baby, it would normally change as they grow up and, though Alex has grown up, that focus hasn’t shifted so much.
Emma was asked recently if she thought Alex had had a negative impact on her life, if she’d been prevented from doing anything… It was all I could do not to cry when she emphatically shook her head: no.
Our primary concern when we do anything is: how will this fit with Alex? As he gets bigger and doesn’t yet walk, as he gets bigger and doesn’t understand safety… it becomes more and more difficult to go away, to experience newness. So I am phenomenally grateful to our family and friends who work with us to make that happen for Emma. We can’t all of us get away, but at least – with their help – she can.
And Emma… Emma has dealt with this in very typical Emma style. She had a wobble, as we all did, but her school were amazing at helping us to help her… and she has grown into a thoughtful, funny, interesting little girl. She loves facts. Loves to *learn*. Loves space. Minecraft (*sigh*). Reading is a passion. She goes out to play with her friends. Her confidence is growing.
There is this added, disabled, side to her life but we like to think there are positives. She loves to go on the SWAN days out (she calls them ‘disabled days’), she’s recently started going to Young Carers where she can hang out with other children in similar situations, children who just ‘get it’ …when she came back from her first visit it was clear she’d enjoyed the evening (as well as the free pizza. ‘I don’t need tea before I go next time Mummy, there’s So Much Food!’).
We worried that picking Alex up from his new school would be difficult for her, we explained the other children had a variety of different disabilities – some like Alex, some not so much – ‘that’s ok Daddy, I know and I won’t stare’.
All parents are – rightly – proud of their children but we are so proud of Emma and the way she has taken this situation on and just rolls with it. I panic, occasionally, that one day she will resent her little brother but right now, the love they have for each other is a wonderful thing to witness.
Emma brings laughter and normal with a capital ‘N’ into our house. And we are grateful for it.