Ordinary Hopes

I hate it when people say that to me.

I know they mean well but it feels as though they are saying there is nothing unusual or difficult about my son’s life. When there clearly is.

Sometimes I am sad about the things he struggles with.
Sometimes I am sad that we can’t just go out like other people do.
Sometimes I am fed up with living “Groundhog Day”.
Some days I crave the “normality” of other people’s lives.
Some days I voice it.

And then they say it.

“There’s no such thing as normal”, (usually said with a smile) swiftly followed by “what is ‘normal’ anyway?”

Well, let me begin!

My son is almost 11 years old.

‘Normal’ would be getting himself up in the morning.
‘Normal’ would be getting himself breakfast.
‘Normal’ would be going to the toilet by himself.
‘Normal’ would be feeding himself.
‘Normal’ would be dressing himself.
‘Normal’ would be going to the local school.
‘Normal’ would be joining in with local clubs.
‘Normal’ would be playing alone for a while.
‘Normal’ would be going to play at a friend’s house.
‘Normal’ would be not eating non-edible things.
‘Normal’ would be to able to go outside alone.
‘Normal’ would be playing on the swings in the park.
‘Normal’ would be going upstairs with his friends.
‘Normal’ would be buying a bike at the local bike shop.
‘Normal’ would be wearing regular shoes.
‘Normal’ would be not needing constant supervision.
‘Normal’ would be living without planning ahead.

Normal is not a dirty word.

We all have an idea of what we consider to be ordinary, everyday things.

And some days I want a little of that ease for my son.

Today my son wanted to sit in the driver’s seat in the car and pretend to drive.
But he couldn’t. He can’t get in the driver’s seat and I can no longer lift him.

He wanted to go on the trampoline by himself.
But that would not be safe in his wheelchair.

And just a short while ago he wanted to be able to stand up.

We are allowed to want your normal.

I love my son. He is amazing. But I wish his life could be easier.
For him.

And he wishes for that too.

Not every day. Not Always. But some days.

 

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I would change the world for my son if I could.

But I can’t do it alone.

The ability to go out for the day is one of the things we miss most.

I am sure that most people consider a day out shopping, a trip to the beach or an evening at the theatre to be a normal part of life, not an exceptional moment.

Please take a moment to sign this PETITION so that we can all get out more and enjoy everyday activities.

Help us make Changing Places Toilets become normal.