“If she wasn’t disabled…..”

“Sometimes I wonder what Louisa would be like if she wasn’t disabled.”

I looked at him, my seven year old son, as the words left his mouth. He was sitting at our small kitchen table doing his homework whilst I was unstacking the dishwasher. His words hung in the air and drowned out the din of the radio music in the background and the clinking of cutlery and dishes being put away. I absorbed what he had said.

I looked at him, innocently using his fingers to work out the next maths equation. He wasn’t looking up at me, as though he was too worried to see my reaction to his words. As though he hadn’t meant to say this out loud and if he kept his head down we could both ignore it.

I paused. I took a breath. I digested the enormity of this statement whilst also digesting the innocence of it too.

“I sometimes wonder that too,” I admitted. “What do you think would be different if Louisa wasn’t disabled?”

“Well…..” he looked up, his eyes locked with mine as though he had been eager to have this conversation with me for a while, relieved at my response. I wondered how long this had been on his mind, “Well, I think she’d have long hair because she wouldn’t pull it out when she is sad,” he said.

“I think you’re probably right, she might have longer hair. Maybe if she was able to tell us what was upsetting her she wouldn’t pull it out.”

“I don’t think she’d watch so much Peppa Pig,” he pondered. “I really don’t like Peppa Pig.”

I smiled, “Ha! Yes she might like other TV shows. I agree, I think Peppa is a really rude pig!”

He smiled back. Peppa Pig is just white noise to us all now, but some days it still drives us all a bit mad.

“But we wouldn’t know Ashleigh. We wouldn’t know Mia would we?” he kind of stated and asked this question all at the same time.

“Yeah I think you’re right, we probably wouldn’t have met them.” I agreed. Mia and Ashleigh are Louisa’s Personal Assistants, who are both very much part of our family now.

He smiled, looked back down at his homework book and carried on.

I stood there. Did I need to say more? Did I need to talk about how Louisa is perfect and that she wouldn’t be Louisa if we changed any part of her. That’s it’s ok to be disabled, disability is not the issue, it’s society that needs to change. That everything is fine and we shouldn’t wonder because it just is what it is. That we should be grateful that Louisa is in our family, just like everyone else. That we are lucky.

I didn’t say anything else. I left it there. He’d moved on and that brief conversation was over.

Recently disability has been at the forefront of everything in our family’s lives. Louisa’s needs are profound. The gap between her ability and that of a typical five year old is wide. Her ten month old baby brother currently says more and understands more. Disability cannot be ignored in our family as it is at the heart of most things we do. It cannot be the elephant in the room as it is part of every action, every decision that we make. It often dictates what we can and cannot do. That’s the reality. And where does Louisa’s seven year old brother fit into this?

When he was younger Louisa was just Louisa to him. His little sister. And she still is of course. But now he notices. He notices that she doesn’t speak with words, that she needs help with most things she does. That she is allowed to watch her iPad when he isn’t. That she doesn’t go to the same school and that she has lots of appointments. He knows the names of her medications and the professionals that work with her. He knows she is different from his friends’ sisters. He knows the humming that she makes often leads to a crisis. He knows that sometimes we can’t go to certain places with Louisa as she’ll get distressed, or if we do that we need to take another adult with us to help ensure Louisa is looked after and safe. He has learnt this through being in our family.

All of these things impact his life. Positively, negatively and everything else inbetween. That’s the reality. That’s the truth.

He is allowed to wonder. He is allowed to think how things could be different. Our lives are different with Louisa. Not better, not worse, just different. I cannot deny that simple yet complicated fact. Our lives and our family dynamic isn’t depicted in what he sees elsewhere, we haven’t seen TV programs with families like ours. Our lives are not ‘the norm’. Our lives are hard and easy and magical and unexciting and simple and wonderful and happy and sad all at the same time. These emotions are huge for me to understand, I can’t imagine how his little brain comprehends it all.

I want Fred to always feel comfortable with talking to me about all the good and difficult things. I want him to know it’s ok to sometimes wonder ‘what if’. A seven year old is allowed to have questions. But I’m desperate for him to be confident enough from our family love and understanding that he knows that all the disability noise around Louisa is only a tiny part of her. A small part of us. That she is so much more than any of her apparent ‘limitations’. This is just her. This is just us.

If she wasn’t disabled….. if I’m honest, I’ve thought about this lots of times. And I think that’s ok. I just haven’t said it out loud because what if someone thinks I don’t love Louisa? What if someone calls me out for being ableist and wrong? But, I’m glad he was able to say it to me, because there is nothing but innocence behind what he has wondered.

I couldn’t be more proud of my son. The boy who is asking questions and learning but also so accepting and loving. The little boy who really sees the only ‘problem’ being that of how annoying Peppa Pig is.