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.

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.

Given that yesterday was his 7th birthday, I find it hard not to revisit these memories at least a little. Every year it gets less. I no longer care to deep dive into the events of that night or torture myself with what might have been if I had been rushed to hospital for the c-section I needed. But it’s natural to reflect on the then and now at this time of year.

Birthday painting courtesy of little sister – we have decided to stop getting foil balloons because I’m fairly sure they are too planet-wrecking to justify

We’ve all come a long way. We have become the people who I read or heard a lot about in the beginning. The kind of people who have a child who can’t walk or talk or eat properly. Who drools and shouts and needs hulking great chairs to help him sit up wherever he is. Whose head wobbles around and sometimes stays up but often flops forward. Who will always need chairs and bath seats and hoists and incontinence equipment. Who might talk with a device instead of a mouth. These were the people – and the children – who terrified me at first.

What kind of a life is it, caring for such a person? A child who turns into a man yet remains a newborn. Whatever it is, it can’t be good.

Or so I thought.

These people I used to read about said they were happy. Said their child was happy. They had a full life, everything was OK. I was sceptical.

Now we are those people. Life has ups and downs but we are happy. T is happy. He leads a full life with activities, school, friends, likes, dislikes. He watches films, enjoys theme parks, walks, shopping, bouncing on trampolines. He finds burps and farts and wees in the bath hilarious. Put on a funny accent and you’ll have him in stitches. He can laugh until he goes silent with tears, and it’s the best thing you can ever imagine.

We have had to work hard for this happiness. It’s taken tears, anger, grief, processing, shouting, questioning, ranting, and a lot of practice to live in the moment to get here. Sometimes you think everything is fine but the grief comes out of nowhere and floors you.

Equilibrium occurs on a knife-edge. The tiniest thing (the children full of colds and a run of sleepless nights for example) can tip you off into a freefall but everything is a phase and you just get through it. You have no choice. It’s just more to process and accept and in the end it makes you stronger and more resilient than you’ll ever know.

I understand now how those people could say that everything was OK.

It’s not the OK you dreamed of and hoped for in the beginning.

The only OK I could imagine was a miracle recovery and no lasting brain damage. I only wanted to take home a perfectly healthy child. Not because anything other than that is ‘less than’ but I wanted an easy life. I feared how I would cope. I was the kind of person whose pets went feral from neglect, who didn’t have a great track-record with houseplants. How was I going to look after such a dependent child for so long?

That fear has been replaced with love and confidence and instinct. Obviously the bond with a child is nothing like a pet or a plant. Love drives you forward. You learn to cope by putting one foot in front of the other and tackling each bump in the road as it comes. Our road isn’t as bumpy as some and we have help and a level of privilege that eases a lot of the burdens. But mindset is important too.

I live in the moment. I accept and love Ted for who he is, not who he might have been. I work hard to keep him as healthy as I can. I try to work on my own mental health and happiness. I am trying to design a life I don’t want to run away from (there have been times that I would have happily booked a one-way ticket somewhere).

Everything is OK, it’s just in a totally different way.


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