Below are a few of those things….

I never thought;

I’d still be checking my son’s breathing; remember when you’ve a new baby and you check to see if they are breathing? I still do that with my first born son, Ethan.

I never thought;

I’d still be cleaning bums and using sudocrem; especially when my son is fifteen.

I never thought;

The nappy rashes wouldn’t end until they told me he had Hunter Syndrome.

I never thought;

I would have a terminally ill child, does anyone?

I would place a camera in my teenager’s bedroom, to ensure he is sleeping and safely in his bed.

I never thought;

I would sit with doctors and teach them all about the syndrome which my son lives with.

I never thought;

I’d swap a buggy for a wheelchair.

I never thought;

I would be signing consent forms about what can happen with a ‘simple’, ‘routine’ procedure due to his narrow airway.

I never thought;

My son would have meltdowns, let alone violent ones.

I never thought;

I would be able to cope with such meltdowns.

I never thought;

I would be buying adapted this and adapted that...

I’d be blending foods, making special shakes, adding thickener to what my son eats and drinks.

I never thought;

I would know what a feeding tube was, let alone how to clean it, use it and even turn it.

I never thought;

I would know what all these goddamn letters stand for ADHD, OT, SL&T, ABA, GDD, AFO’s, ADD...

I never thought;

I’d know what it’s like to have strangers stare at my son and pass comments about him.

I never thought;

I would get to the stage where I would stare back or loudly ask them what they have said!

I never thought;

I would be ‘that’ mammy, the one that knows all the medical jargon; which medications do what and be able to understand a medical chart.

I never thought;

I would spend years trying to understand the 'system’ and how to apply for supports my son needs.

I never thought;

I would spend years fighting that very same 'system’ in order to get what my son needs.

I never thought;

That I could live with all this and more; but still laugh and smile.

I would think watching ‘The Simpsons ‘with my 15 year old son could bring so much joy.

I never thought;

I would bear witness to ignorance, injustice, discrimination towards my own child but still manage to see all the love, encouragement, respect that surrounds us.

I never thought;

That this life would make me realise that being bitter, sad, depressed are all valid feelings, that they are just as valid as feeling happiness, hope, love…

I never thought;

I would need counselling in order to raise my child.

I would ever laugh again after my sons diagnosis, but I do...I laugh so hard that sometimes I can’t breathe.

I never thought;

That my son would be the one teaching me ...teaching me just how to ’be’ in the moment.

I never thought;

That my son would be 15 years old and still needing me as much as he did when he was a baby.

I never thought;

My life would be like this and…

I never thought;

I would know what ‘hope’ can mean to people.

I never thought;

I would have a son who has changed me completely; he’s changed my point of view, my beliefs, my understanding of the world, my compassion, my empathy …

I never thought;

My son could show me without uttering a word how much love he has for us.

That I would be thankful for not knowing when he was born, what I know now - 15 years later.

I never thought;

I would be here living this life ...I don't think anyone’s life is exactly how they imagined it to be…