During My Talk About Raising a Child With Cerebral Palsy, an Audience Member's Question Struck Me

Late last year I gave a talk about my son, Sam, who has cerebral palsy, and myself to about 80 pediatricians taking part in a training day at the Royal Society of Medicine. I had 20 minutes to give “A Parent’s Perspective.”

They were a receptive audience and gasped (“Sam had 157 appointments last year”) and laughed (niche jokes about junior surgeons’ lack of interpersonal skills) at the appropriate points. I was asked a number of perceptive questions at the end. But one really struck me.

“What do you wish you had known, or had been told, when Sam was born – and what would you advise someone just starting out on a similar kind of life to yours?”

I didn’t immediately know how to answer this, but after a momentary panic in front of a large audience, I thought of something and, here, I will expand on it.

When Sam was in hospital just after he his birth, I was expressing breastmilk for him, something I was finding relentless and dispiriting. A breastfeeding support worker put me in touch with a woman who I’ll call E, who’d expressed for over six months because her child had difficulty feeding.

Once Sam came home from hospital, I couldn’t keep up with a brutal regime of pumping, bottle-feeding, tube feeding and sleep deprivation, so I stopped expressing milk. But by that time I was in touch with E anyway, and she came around for a cup of tea. She told me she thought I was doing brilliantly, which was incredibly encouraging.

Meeting her in the first few months of Sam’s life was hugely important. Her son was different from mine, with a totally different condition, but there were similarities between our lives. For example, the shock of realizing things are not (and probably won’t ever be) as you expected.

Most important, she was heavily pregnant with her second child. The idea that she’d been able to accommodate all the difficulties of her first child sufficiently to decide to have another one gave me hope — that it might be possible to have another child and that our lives might one day be as optimistic.

I stayed in touch with E and we met periodically. It was comforting and fun.

This kind of camaraderie is not unique to parenting a child with a disability – new parents need solidarity and someone who understands the challenges and joys of a brand new baby.But finding yourself talking to a parent of a child with a disability is a bit more niche. There’s huge solidarity and comfort in talking to people who have experienced similar difficulties, who you don’t have to explain everything to. It’s most uplifting if those people are thriving, but actually any contacts will do.

I’ve since met many other mothers of children with disabilities. I tend to find these conversations are accelerated – there’s no need to do as much explaining. We’ll quickly be discussing private feelings and traumatic experiences. We recognize the similarity of our lives, and our subject matter touches on all of the most intimate and important aspects of being human: what your priorities are, who you were and who you have become, how and who you love.

Or sometimes I just have a chat about purely practical matters. No deep connection. Sometimes having a child with a disability in common is not enough, and someone is just not my kind of person, but that’s fine. Sometimes things are not going well, and I just need to hunker down and get through it and not talk to anyone.

Over the years, these acquaintances have come in many guises – friends of friends, women from the supermarket, bloggers, parents accompanying their children to sessions at Small Steps or fellow students on a course. I’ve valued these connections hugely.

So if I met myself five years ago, I would say, find some friends who have been in a similar position. Either online or in your city. There are people who have survived a life like yours and many who have thrived. You are not alone.

(You could always send me an email)

This post first appeared on Stories With Sam.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.