How it feels to... come to terms with losing a child

But this is not about Teddy’s medical journey. This is about what happens afterwards. After our existence and his had shrunk to the four walls of a tiny hospital room. After the hope slowly drained away, along with the life of my beautiful boy. After I looked out of the window on that last sunny morning of the day he would die, and noticed the wind gently blowing the leaves in the trees. He would never see them, never feel the breeze, the warmth of the sun on his skin. Instead, I would walk out of that hospital without him, and the revolving door would spit me into a too-harsh light that threatened to sear my soul.

Losing a child is against the laws of nature. It is not meant to happen. And it’s a sorrow almost too acute to articulate.

Moment of joy: Kerry (right) and Antony look on as their son, Teddy, is entertained by clowns in Sydney Children’s Hospital, Australia, 2012

“I can’t imagine what you are going through,” was the stock response of people offering condolences. I hated that phrase. It made me feel alienated, as if I were experiencing something otherworldly, alone.

So here it is: this is what it’s like to lose a child. And this is what it’s like to carry on living.

Any bereaved parent will tell you they would have sacrificed everything for just one more day with their child. If saving their life meant torching your house, your possessions, your job, you’d do it in an instant. Never will you have so much clarity about the meaning of life than as when you are at your child’s deathbed. Nothing, absolutely nothing, is worth more than the love of your family.

And if, in that black vortex of pain immediately after his passing, there had been a big red button presented to me saying “Press for death”, I would have done, so that, like the actress Debbie Reynolds — who died last year the day after losing her daughter, Carrie Fisher — I could hold my child again in heaven.

There are vials to help you fall down the rabbit hole, of course; a choice of medication to dull the pain. But I didn’t want to drown out Teddy’s memory in a sea of shiraz. And I couldn’t give up. Because after fighting so hard to give him one more day of life, it seemed wrong to throw mine away. So, instead, I started again.

Teddy’s legacy was to make me a better person. He changed my life by showing me what unequivocal love is.

My partner, Antony, and I were living and working in Australia after moving there from Britain for the second time in 2004. We first met there in the 1990s, when we had both stayed in Sydney after travelling.

Before Teddy, I cared about such fripperies as having the right car, clothes and shoes. After he died, we returned to our house in Sydney’s eastern suburbs, with our brand new car, designer clothes and bloody Bugaboo, but not him. It was like a veil had been lifted and for the first time I could see life clearly. I was surrounded by soulless, meaningless “stuff” that we’d mistakenly thought provided the structure of our life. None of it would make a life raft through that tidal wave of grief.

Connie Yates and Chris Gard with their son, Charlie, in April

PA

And so the lessons I learnt were how to find happiness in the everyday, not to stress over unimportant things, and how to find a level in life where you can just “be”. I became a harder yet kinder person. I went on to have two daughters, even though, as an older mum, I’d thought that Teddy would be my only child. I resigned from my senior job as lifestyle editor on an Australian newspaper and we moved our little family back to the UK, into a cottage in the countryside, in search of a simpler life. I work from home, so I can spend this transient time with my daughters before they grow up. Every day we go for a walk and look at the leaves on the trees.

One of the first things I did after Teddy died was start a charity in his honour. Having never been in any way philanthropic, I felt driven to do something to help families like us, suspended in a twilight zone between life and death.

Team Teddy supports critically ill children and their families in hospital in Australia, by showing them someone is thinking of them. We’ve bought sleeper chairs for parents on wards, renovated a room in a Ronald McDonald House (sponsored accommodation for families near hospitals), provided iPads for children having operations. But one of the simplest and most profound ways we help is to send cardiac babies beautiful bunny soft toys to cuddle, of the type Teddy loved so dearly.

Although the charity is for Australian hospitals at the moment, I hope to extend it to the UK this year.

As for my stupid designer shoes, I threw them all away. I don’t need those for the path I walk now.

To donate, visit the Team Teddy page at youcaring.com