Ordinary Hopes

Life changes when you become a parent. Even though you are expecting it and think you are ready, somehow it is an experience way beyond what you thought you were expecting!

Second time round, I thought I was totally prepared.

After all, I had done it all before. I was, as Daddy Pig would say, “a bit of an expert”.

And then Adam came along.

A beautiful bundle of joy.

Life had already got a bit complicated as our first son had broken his arm in two places just days before.

The planned and hoped for home birth became a hospital birth with a three day stay. We came home in the evening and had to head back the following day for a Pavlik harness to be fitted to try to help fix his dislocated hips.

At one week old, the Pavlik harness was joined by two full leg plaster casts. These casts were to try to correct complex talipes and had to be changed weekly.

We were about to learn a whole lot about plaster casts!

Yet, throughout everything, this boy found joy in every day.

Just before Adam’s third birthday we counted up the weeks he had spent in a cast and discovered that he had spent one third of his life with a body part (or several) in plaster.

As he has grown, it has been more difficult to keep him cheerful as he has underdone various surgeries to keep him healthy and maintain a good quality of life.

He has struggled and he has been deeply sad at times. Waking up to find your body sore and encased in plaster must be terrifying. I know that I am still tormented by the look in his eyes after his hip surgery in April 2012 so I am sure that none of those feelings have left him either. It left him very unhappy and fragile.

Eight weeks in a cast from chest to ankles and with all your independence gone would probably change your view of the world too. Imagine the awful confusion when you are just 5 years old.

Life has been a constant struggle for Adam and we have done all we can to support him, keep him smiling and to get him back to health every time he has had a setback.

The setbacks keep coming.

Life keeps changing.

It gets harder and harder to keep him smiling.

Now he is about to become 10 years old.

The coming year is going to be a challenge. His feet are in a bad way and surgery is the only option if he is ever to wear shoes (very important thing to Adam – wouldn’t it matter to you too?), let alone have a chance to stand. They are uncomfortable. All day, every day. One knee and one of his hips keep dislocating painfully every day, several times each day. There are no easy decisions and no simple options.

We want him to lead the best life he can, to have the most fun possible and to experience as many fabulous things as he can. Whatever it takes, we have done it but now we are ten years older too and our bodies might just have aged twenty! Adam’s body is also more fragile now and needs more care.

This is why I am trying to make Cornwall more accessible. Life has to be worth living and I have to make that happen.

I know that I “bang on a bit” about accessible toilets. I have a teenager – he tells me straight!

He also said the most lovely thing to me a few months back. He told me that he was proud of me and those words meant so much.

So I will keep “banging on” about accessible toilets and I hope that you will help me. A bench and a hoist in a large toilet is all he needs to make the world accessible, to make life worth living.

What Adam wants most in the world is to be able to go out and enjoy life, doing the things his friends do.

He wants to go to the zoo, his local theme park, the theatre and cinema. He wants to enjoy going out for lunch. He wants to stay as long as everyone else does. He wants to know that he can use a toilet as easily as his buddies can.

Is that too much to ask when you are 10?

 

 

I wish I could gift wrap an accessible world.

 

 

 

I am hoping that you feel the same, that equality does matter, that Adam does matter.

If you do too, please sign this petition to try to make these facilities a legal requirement.

If you own or manage a place in Cornwall that is enjoyed by children, please make a change so that Adam can enjoy it too.

The year ahead is going to be truly tough for Adam. You can help – be the light at the end of the tunnel. Make your part of the world more accessible.

When he blows out the candles, we will all be wishing.