Additional Needs

Life is indeed, too short

Posted by Ger Renton on 13th January 2020 Additional Needs, Advice & Support, Disabilities

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Ethan turns 18 on the 18th of May this year.

In any young person's life this is a major milestone; in Ethans life this is just as major but it will be celebrated very differently than the majority of 18 year olds.

I have a few ideas on how we will celebrate this with Ethan but for now, I am counting my blessings.

I wanted to pause before I begin booking, researching, inviting and planning.

18.

I could say something funny like I’m too young to have an 18 year old but I don’t feel that way. I can remember the reality of having a baby at the tender age of 20 and thinking how cool it would be when he was this very age, 18. I remember also noting how ‘young’ I would be! Not even 40.

I imagined a whole life, I imagined a whole different life. I also imagined a whole different son and a whole different mother; honestly, I don’t believe I am the only parent to admit that.

The son that was placed in my arms almost 18 years ago is not the same son that sits on my lap almost 18 years later. In fact,my son has never stayed the same - he was always changing, always bringing us into a new ‘normal’, not by choice but through genetics.

He wasn’t growing up or learning new things; he was fighting hard to retain what he already knew and his syndrome only allowed him to learn new skills from birth up until roughly 4 years old.

We were to be considered lucky if he made it to his teenage years.

18.

Despite Hunter Syndrome stealing my son throughout his life, my son is the best teacher I have ever had- and I have had some great teachers.

Despite the syndrome affecting everything from his mobility to his brain, my son continues to teach.

Now, I know you may read this and think, ‘aww bless her, isn’t she great for seeing such positivity in such a shitty situation’ or something along those lines but I assure you, my son has taught me well.

18 Reality Checks, I know to be true thanks to my son and all he goes through.

Life can change in an instant without warning and without your consent- in fact your consent is never required. Accept that.

Lean on those that are in your life, don’t waste time chasing those that left when the shit hit the fan; they are obviously only paper thin anyway.

Accepting things as they are and facing your reality is not defeat. Hiding from reality is far more painful than sitting with it and acknowledging your situation.

Be blunt when you have to be. People tend to do what you ask when you are blunt with them. (Ethan used to say ‘not you’ when he saw a particular nurse come at him, or if a person he didn't particularly liked called in...and it worked, the person stopped calling and that nurse handed him over to a different nurse!)

Let yourself feel it all; the happy, the sad, the lost, the lonely, the fear, the despair, the love, the laughter…..choosing which feelings to feel will make you ill.

There is always, always someone who surprises you by just showing up and being there.

People don’t always say the right things or do the right thing according to your own actions and reactions - remember that's on you, not them.

Poop is just poop, we all have it, we all make it and yes it is sometimes smelly. It’s not shameful! Poop is important, it can tell us a lot.

Specialists and Doctors are human, they are not machines or superhuman - speak to them the same way you would a friend; if you disagree with them, you tell ‘em!

Life isn’t fair. It just isn’t.

Accepting some harsh truths can save you a world of pain in the long run but crumbling to your knees when you are first met with those truths is perfectly normal - just get back up, always get back up and if you can’t; ask for a handrail, a push or even a kick up the bottom - there are plenty of people that can provide that for you.

Laughter is absolutely priceless. There isn’t a nicer sound.

It is lovely to have the recordings and the pictures - but don’t forget to be present too - if it’s a big event, pay for a photographer.

Say yes to things you’re not sure about. If I thought long and hard before decisions I made since Ethans diagnosis I would never have been on Don’t Tell The Bride, nor would I have taken part in a documentary all about Ethan(and kiddies like Ethan) called ‘Ireland’s Miracle Children’ and I most definitely would not be writing publicly - and that’s just a few obvious ones!

Take actions to ease your worries - get a camera in your child’s room if you’ll sleep better, pop in unexpectedly into the center or school your child attends, chop the food extra small or don’t - do whatever eases your worries - no one judges you harder than you, sadly.

Every day make note of a happy moment -write it down. You’ll find that there are quite a few - the simplest of things can become treasured moments.

Hospital stays are fecking lonely. Hospitals stays outside of your own county are beyond lonely - make the visit. Don’t ring and ask, don’t presume they are sick of visitors - just show up. It’s those kinds of action acts that can give a heartbroken parent that little lift in the bleakest of times - and don’t worry, the won’t remember what you said, they’ll remember that you came.

A messy house is a sign of a happy home - there is a difference between messy and dirty though. Let the mess build and hire a cleaner two mornings a week for the rest!

Life is indeed too short.