Cerebral Palsy – The otherhood

January 17, 2020July 22, 2020

To the me who could only see darkness and grief…

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To my sad, grieving, just-past diagnosis self,

Life feels like a big black hole right now. You have fallen into the dark abyss you have been fearing for three months, ever since your sweet boy was born not breathing and the doctors hinted he might emerge with cerebral palsy.

You hoped for a miracle, but as more and more people shared their ‘miraculous recovery’ stories, the reality set in. There are disabled children in the world. Not everyone bounces back against all odds. Not everyone gets that happy ending.

You won’t get the happy ending you imagine. But that doesn’t mean you won’t be happy.

Grief is natural. By crying over the direction your life has gone and all the ways it’s going to be different from your dreams, you are not betraying your child. It’s true: he won’t be the person you imagined and he won’t have the life you dreamed of for him. It’s OK to feel sad for this. The park is where you go to walk around and escape the crying but it’s also where you grieve deeply. As you sit watching the other children play, it’s OK to feel sad for the things he will never do like chase the pigeons, splash in the paddling pool, beg for one more turn on the slide, scoot away too fast down the slope, join the junior football clubs. Just remember that it’s you you’re actually are feeling sad for. He will never know about the joys of these things, but neither will he ever realise what he’s missed. You need to mourn what you thought he would do, so that you can make space to accept the things he can.

Continue reading “To the me who could only see darkness and grief…”

October 23, 2019

Mums: It’s OK not to do all the things. We all need an ‘I don’t’ list

I read this post this morning and resonated deeply.

This bit really got me:

‘How could you possibly be [doing enough]? You’re a woman, living in an age of extreme expectation. Superwoman Syndrome has shaken off its shoulder pads, pulled on its activewear leggings and buddied up with Hustle Culture to provide you a continual feed of All The Ways You Could Be Better. If you’re a woman with a child, then throw in a dose of Peak Parenting, and the bar for a successful life is now so high the Hubble telescope would squint.’

That’s me, right there. Constantly worrying if I am doing enough and constantly finding myself lacking. I need to give myself a break. So, note to self…. Continue reading “Mums: It’s OK not to do all the things. We all need an ‘I don’t’ list”

October 9, 2019

‘It gets easier, I promise’

These words make me cringe. I used to say this phrase all the time, thinking I was helping. But time has taught me it’s not true.

At the time, I didn’t know it was a lie. I made the mistake of thinking that my experience was the norm and that everyone would follow my path. That’s usually the mistake of the privileged, to assume that their experience is the only experience. In this case it wasn’t so much privilege as luck that was responsible for my naivety. Continue reading “‘It gets easier, I promise’”

October 8, 2019

Grief encounters

This bears no relation to this post. I just thought a calming pic might be nice

In the interests of fairly representing this rollercoaster called parenthood, I feel compelled to write a follow up post to yesterday’s.

Yes, overall, we are happy. For the most part, everything is OK. We go to work and school and nursery. We drink coffee and eat scrambled eggs on Saturdays. We go to the park and for country walks. We sometimes see friends for beers or barbecues or trips to Peppa Pig world. We go to IKEA and eat meatballs, get lost in the showroom and have a hissed row in the car park. We are tired. In other words, we have good times and bad times and are like any other 2.4 children family. And yet…

That grief I mentioned? Today it floored me. If you’re on a similar journey to me, navigating the extremes of everything that parenting a disabled child throws at you, perhaps you need a reminder that it’s OK to not be OK.

Continue reading “Grief encounters”

October 8, 2019

Seven.

This time seven years ago, I woke up in a London hospital after a couple of hours of fitful sleep, feeling like I had been hit by a bus. In some ways I had.

Sure, the bus was metaphorical, but nonetheless I was sore, bruised and covered in last night’s blood. There was no charge on my phone and I was all alone, feeling dazed and anxious.

p1010645 — A few hours old, being cooled to stop further brain damage

I’d had a baby. My first. But he was at a different hospital. For those early hours of Monday 8th October, I couldn’t even be sure he was still alive. The hatred I felt towards the Bounty woman who burst through my cubicle curtains with her shitty newborn pack, calling out her congratulations, was visceral. But I didn’t have it in me to do more than nod and then burst into tears when she left. At that point I had no idea it was the midwives I should be angry at.

Happily, that baby was still alive. We had to take it day by day, minute by minute at times, but he was hanging on. Thanks to several poor decisions by the midwives who were supposed to be keeping him safe, he had suffered a catastrophic brain injury that altered the course of all our lives. Continue reading “Seven.”

October 27, 2018September 28, 2019

Just what is ‘The Otherhood’?

One of the recurring themes of my journey through motherhood is of being different.

Parenting a child with a disability (cerebral palsy) and a neurotypical child, I am caught between two worlds. Thanks to these two tiny teachers, I have a complete experience of motherhood from the difficult to the sublime. But treading this path means I don’t always feel like I belong.

I very much feel ‘other’. Continue reading “Just what is ‘The Otherhood’?”