Our World

”You are now in a secret world. You’ll see things you never imagined; ignorance, rudeness and discrimination, but you’ll also witness so many everyday miracles and you’ll know it. You won’t think a milestone is just a milestone, you’ll know it’s a miracle. You’ll treasure things most wouldn’t think twice about. You’ll become an advocate, an educator, a specialist and a therapist but most of all, above all this, you’ll be a parent to the most wonderful child”

That is a quote written by me.

That is a quote which has been shared countless of times.

It is a quote which has been sent to me from strangers, strangers who have no idea that they are using my words to tell me how ‘wonderful’ I am.

I am always thankful that that quote has brought some people comfort or that they relate to it. And yeah, it does make me smile when I see it sitting in my inbox with the words “made me think of you” attached.

I am in a secret world and I do believe in this world that I am in, that we speak in code, we have our language and our own jokes. (I have written a piece about our ‘code’ before so I won’t go into that now)

We don’t want to be in this secret world but we don’t have a choice.

It’s a different world to what most parents know.

It’s a world that invites worry, ignites fury and encourages little to no sleep.

That’s the harshness of this secret world. There isn’t an end; we are on a loop, our child ages but their needs often increase. We enter different parts of this secret world which are often murky and difficult to navigate.

It’s a lonely old place where time is a struggle; a thing to be watched or a thing used to keep everything in this world rigid and scheduled.

It’s a funny place, this secret world.

It’s a place where poop, vomit, stomach acid is openly discussed in detail over the phone with a stranger all while eating the snack you stole from the cupboard, hoping that your peg feed child hasn’t see you, if they have, Mr Guilt pays a visit (again)

It’s a world where guilt likes to lurk in every corner of your mind. Ah yes, the average parent guilt plus the special kind – that special kind ain’t special at all, it’s cruel, heartless and a persistent bugger.

It’s a world full of ‘what if’s’ mashed with ‘I can’t do this’ with a dollop of ‘Oh they crossed the wrong mammy today’ …it’s exhausting, never ending but…

Ah here’s the but —-

It is fun. There are things you will laugh about that other people would get offended about on your behalf; it’s kind of hard to explain (but those in my world are now nodding away, smiling.)

It’s eye opening. I don’t think I have ever been witness to such human kindness and I dare say, if I wasn’t in this secret world, I would never witness such compassion given freely by strangers.

If there’s an injustice, in our world, we all pull together and we know who’s who of the people that do; or in most cases the people that don’t! We know a lot of legal sh!t.

We, in our world, believe everyone bitches over silly stuff, we’d love to drag you into our world for a day, just for you to see what we see – but we would never wish for you to have to be in our world with us, we’d just like you to understand, a little.

It’s colourful. It’s so friggin bright. Our kiddies light up a room and when they do something as simple as smiling; For some of us in this world, it makes us feel like we are walking on sunshine.

We meet amazing people. Amazing amazing people who only want to help us in this secret world. They are either parents, siblings, therapists or doctors but they are pretty cool and do something wonderful; they listen.

In this world we value ability. We really value it. We see it in everyone.

We sometimes can spot each other through a crowded supermarket while a meltdown is in full swing; we share that code and we smile. We give each other the nod. We get it.

In this secret world we know what it is to be in the moment. We know what it is to see a first step, to hear a first word or be witness to a first attempt; We have probably waited years for our firsts or we continue to wait.

We believe in hope; even if we struggle to find it sometimes.

We are strong in this world and we have anything you could possible need in any situation in our bags, in our pockets or on the back of the wheelchair; just trust me on that one.

We are humurous; we know how to really laugh with you.

We are also dab hands at removing stains using only a wet wipe and a bit of elbow grease; we can also tell you if that’s the good brown stain or the bad brown stain by having a quick look and if we can’t, we are not shy about having a smell.

I’m sure after reading a little about our secret world there is a lot many of you can relate to; as we are all parents, trying to do our best for our children.

If you have a relative, friend or neighbour who lives in this secret world, do me a favour — knock on the door, take a step in, be the shoulder, the listening ear, the tea maker ….

This was originally published on Special Yoga



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