Additional Needs

What is in A Year?

Posted by Ger Renton on 10th May 2019 Additional Needs, Disabilities

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There’s a saying about parenthood which I have come across more than once - Yes, the days are long but the years are short -

It is true.

It is especially true when you are raising a child with a progressive illness.

The years have gone by quicker than I had ever imagined they would.

There have been days over this past year that have really felt never ending -

The days Ethan was unwell, or the days I worried all day long about Ethan's obvious new decline or the days that turned into nights of no sleep, little food and no comfort.

Yes, some days over this past year have been so very long. In fact, a lot of our days have been so very long over the years in general.

It’s funny how the ‘good’ days whizz by - Ethans huge big 16th birthday bash which all fell into place thanks to the general public and those who read my blog.

The kindness we witnessed over his birthday and the build up to his birthday will be something our little family treasures forever.

We are fast approaching Ethans 17th birthday.

Every birthday brings a mix of emotions for all parents, yet for parents like us it brings up stronger more pronounced feelings -

We often feel fearful - what is my son's future going to look like?

Or anxious - we are now facing the world of adulthood with a child who may look like an adult but isn’t - they are no longer ‘cute’ and excused.

They grow beards and that ‘cute’ shouting sounds much deeper and causes more people to stop and stare...the worries truly are endless.

I personally become filled with memories of yesterdays and am always shocked at how quickly time has gone by.

It feels like only a few years ago Ethan was causing havoc wherever he went.

He would assure me he wouldn’t do ‘X’ ‘Y’ or ‘Z’ - but as soon as he got the chance to run wild he took it with both hands and legs.

Sometimes I think deep down he may have known that he would not always be able to run - And sometimes that thought haunts me.

Ethan had an obsession with my glasses so much so that I got laser eye surgery because it was cheaper than having to replace my glasses so often.

He would grab at my glasses and break them then apologise only to do it again.

He would also hide my glasses - my mother's favourite story about Ethan is the time he gently took my glasses off me after I refused him another biscuit.

He asked if I could see him to which I replied “no” (but I could, my eyesight wasn’t that bad).

He moved my glasses out of my reach and crawled to the biscuit tin asking me the whole time if I could see him -

I continuously told him I couldn’t - then he quietly opened the tin box and scoffed as many biscuits as he could, while I pretended to search for my glasses.

He turned to my mother and motioned for her to keep quiet.

Of course she did but she tried her best to hide her laughter while I kept asking what the noise was.

Yes, the years are short.

Ethan has always had a way with people.

Sometimes when I talk about the things he used to do, people who know him now can’t comprehend that the same boy sitting in the wheelchair in front of them once told a woman who was staring at him to ‘F*uck off”!

And that the very same boy thought people who used wheelchairs were ‘Robots.

Despite our best efforts, Ethan was convinced that a woman he met at an MPS gathering was indeed a robot because she controlled her own chair.

He decided to call her a Robot and run from her - which to be fair to her she played along with and didn't seem offended.

Yes, the years are indeed short.

Ethans pending birthday is stirring up emotions in me that I hide so well.

It’s funny how having a child with a terminal condition can teach you so much but also ensure you learn to box away the sadness or the fear.

I guess, it’s the only way to raise a dying child, you do need to ‘box’ it away.

And some days, months even years that’s easier.

It was easier in the early days to ‘box’ it away because I truly believed Ethan would be given a drug that would eventually cure him or at least stop the syndrome in its tracks.

As the days turned to months and the months to years...

Slowly I realised that anything like a ‘cure’ or even a drug to ‘stop’ the syndrome would never be given to my son and that, that is something that no one wants to hear or admit to.

But Ethan is turning 17 and we have to face it. Face it in all it’s glory and fear.

We have the same fears as any other parent of a child with special needs moving into adult services but there’s the unsaid, the upsetting reality that even I am afraid to admit -

A life limiting condition comes with a life expectancy.

We were told Ethan would not see adulthood - yet here we are, on the brink of it.

We are afraid, hopeful, scared and happy.

What kind of adulthood will Ethan have?

I have no idea. I imagine it to be filled with adventures, love and family.

What I do know is that, yes, the days may be long and the years short -

I am happy about that!

let my days be long, let them drag and even when they are bad or sad I am going to find comfort in their length because I do know that the years are indeed far, far too short.

Buckle up Ethan, we are rocketing into adulthood!