SEVENTEEN.

I can remember turning 17 and I can remember imagining my son growing up and hitting the teenage years. I presumed he would be like me, we all do that, don’t we? I think it’s a natural thought to have; would my child be like me, would he do the same daft sh!t I did, would he like the same subjects I liked ...

My son is not like me.

My son will not do the things I did at 17,18, 19...nor will my son experience the ‘usual’ milestones and you know, sometimes that catches me off guard.

Sometimes it’s like a huge tidal wave; I can see it coming but I cannot move, it knocks me over, I allow it to.

I used to fight, push, shove, furiously swim hard and fast against it, which would leave me beaten, broken and exhausted.

The years have taught me to just let it knock me and to feel it, though. To feel the weight of it and acknowledge that it is there because some things need to be felt - my son is terminally ill and there is nothing I can do to change that.

It’s an odd life, my life - I have had to learn to not only accept Ethan's syndrome but also to embrace it, somewhat. That’s a whole lot of therapy, right there.

It was easier to embrace Ethan's syndrome when he was younger.

We embraced it so much that Ethan had the mouth of a sailor and the diplomacy of a Jack Hammer mixed with the grace of a bull. He was a whirlwind of pure love and adventure.

As the syndrome progressed inline with Ethan ageing, it became harder to embrace and accept.

But we tried and we still try - no amount of therapy can make you come to terms with this particular reality of ours. It’s an ongoing process, as is life for most of us.

Birthdays are when I feel it most.

The nostalgia and the melancholy appear most vividly through this yearly event but then I have to remember that isn’t about me.

Our life with Ethan is about Ethan and us as a family. (Thanks to therapy for that little nugget of wisdom!)

For Ethan, birthdays used to be all about him.

He never bothered with the little details like who’s birthday it was.

If we were at a birthday party, Ethan expected cake, balloons and presents ...for him.

One of the best memories I have is Ethan having a sh!t fit (not a meltdown, it was a sh!t fit) because he didn't get offered cake at a strangers birthday party! It wasn’t funny then but I assure you,it’s funny now.

Ethan's own birthdays were a huge celebration of all things Ethan with a side of ‘F@uck you Hunter Syndrome our boy is still here’.

We made sure he knew it was all about him. Ethan loved being the centre of attention and was known to shake a card or two just to ensure he hadn’t forgotten any ‘dollars’ which may or may not have been trapped.

These past birthdays haven’t been quite the same. While we throw the big parties (last year we had strangers from all over come and offer their services, skills and expertise in order to help us give Ethan a huge unforgettable 16th party - people are kind).

Ethan seems to know something special is going on but he’s no longer aware of it being his birthday. That’s the shittiest part of this life and the part no amount of therapy can make you feel ‘OK’ with.

He may not talk anymore but he says so much with his smile, laughter and the odd clout he throws my way when he’s pissed off or overly happy; believe it or not, there are many more ways to communicate other than verbally.

Ethan in all his almost 17 years has taught me some things that I really would have never known or experienced without him being my son. I have a lot to be thankful for, even though Hunter Syndrome is a relentless condition, it has shown me what it is to live.

I have a son that is defying the odds as each birthday passes. My almost 17 year old allows me to hug and kiss him too, which I know for a fact not a lot of parents with teenagers can say - my 14 year old allows me one hug per day.

Ethan turns 17, that in itself is amazing.

It will be celebrated and recorded and there will be cake, candles, presents and lots and lots of balloons.

We know more than most that 17 in anyone’s life is indeed a milestone. And even if there is a little sadness which comes with this birthday, we will acknowledge it and get over it. (I’d like to take a moment to acknowledge how much therapy can do for one!)

Thank you to my wonderful, loving, carefree son Ethan for teaching me all about perspective and keeping me sane despite all Hunter syndrome throws at us.

Happy 17th birthday, son.

**THIS MAY 15TH IS MPS AWARENESS DAY - SHOW YOU CARE BY WEARING BLUE OR PURPLE IN HONOUR OF ETHAN AND THOSE LIKE HIM LIVING THEIR LIVES TO THE FULLEST AND TEACHING OLD FARTS LIKE US WHAT TRULY MATTERS IN THIS LIFE.** For more information on MPS Awareness Day please go to www.mpssociety.org.uk

Thank you.