OUR UNTOLD STORIES – The Things They Don’t Tell You

23 May 2016

That you’re responsible for this thing. Forever
That for the first night they throw up all night and it’s not like anything you’ve seen or heard but it is all night and normal
That afterwards, everything hurts: my jaw, from biting down on the gas and air, the back of neck, bruised on the lip of the birthing pool, my joints swelling up from fluid retention
That afterwards, you sweat so much at night so much it soaks your bed and your hair
That afterwards, the oxytocin rush is fab! Two weeks of feeling fantastic; for me, what baby blues?
That afterwards, you’re never the same person. Now I get motion sickness, I don’t like red wine. You just change

They don’t tell you how much you’ll really love them
And how much relentless, mundane and boring stuff you’ll do
And you’ll love it
You’ll watch Bing or I Can Cook with Katy for hours.

They don’t tell you that Sudocrem® is Vasoline® mixed with flour
It’s the devil’s work.
It’s like the grease you cover channel swimmers in
And they will somehow cover themselves in it

They don’t tell you to make the most of the time you have just the two of you
Or that you’ll be okay going to the toilet with an audience from now on. I close two doors and they still find you
Or that a shower is a treat
Or how early they start doing things. They change so quickly. They get very clever, very quickly.
Where has all that time gone? How have you become this independent, walking-to-school, texting-your-mates-to-meet-up person?

They don’t tell you how competitive other parents are
Over things no one has any control over

My baby has 3 teeth
I only had 3 hours’ sleep
I only had gas and air

You think ‘I must make my own puree’
There are things my mum killed herself to do, to get right, and I can’t even remember the specifics of those things now. Those things just made you feel more secure and loved
So it doesn’t really matter
They don’t tell you how other people will influence you
How you’ll be doing things because other people on Facebook® are
That’s why we’re not on it now
Trust your own instincts

You don’t think it will happen
We knew at 12 weeks old that there was something wrong – we still aren’t sure exactly what.
We’ve had so much intervention that’s just happened
We haven’t had to fight
Appeal
Go to the GP with ‘there’s something wrong with my baby’
But lots have had tremendous battles for what they deserve and need
Lots are having those battles still

They don’t tell you how hard you’re going to have to fight, at point of diagnosis
Unless you fortunately see the right person

You’re banging on doors
You’re chasing people up
You’re sleeping on the floor when they’re in hospital

You’ll be seen all over: Basingstoke, Southampton, Great Ormond Street
And none of your notes are digital

They don’t tell you how positive these children are
That through Amy being born, Sian has built all this up at Swings & Smiles. We wouldn’t be sat here without Amy.
That everyone’s got something really important to give to the world and you just need to find it.
Don’t lose sight of that.

Parents who didn’t know they’d need these skills
Becoming amazing, articulate advocates
Using skills you didn’t think you had
So strong and resilient and powerful, without realising it
We would all fight for our children but this is something else
Financially
Emotionally
Practically
You just do it

Written as part of Our Untold Stories by the parents of Swings & Smiles, support for families with special needs children.  For more information you may like to visit swingsandsmiles.co.uk or call 01635 285 170