The loneliest I ever felt was in a school assembly, the day after my wife and I were told our daughter had Williams’ Syndrome.
Looking back it seems weird I even went to school. Having not slept at all the night before and nauseous with worry, I probably should have phoned in. But I was new and didn’t know anyone, and the thought of having to explain why I needed time off just seemed unimaginably difficult. So I got up, showered and drove in.
Of course I left my phone on all day, and in an assembly it rang. Everyone laughed as I scrabbled around in my pockets. I couldn’t even just turn it off because I had to look at the screen to see if it was my wife or a doctor.
It wasn’t actually. It was an 0800 number so I just hung up.
As everyone carried on laughing I twisted my face into some sort of smile and apologised, terrified all the time that I was about to break down into the sort of sobs that don’t stop whatever you do. I remember thinking “I want my wife.” “I want my mum and dad.” “I want to be with my old department.”
Although I didn’t know many of them well the teachers at the school were nice people. Nobody came to tell me off. Nobody was horrible. They were light-hearted and jovial about my assembly faux pas but somehow that made me feel even more alone. The oddity of us being in the same physical space but yet in so completely different universes struck me as being almost unbearably grotesque.
How dark those times were.
Things stayed scary for a good while after that. Every appointment seemed to bring more bad news. It felt like every time we met someone we were told more negative things and given more to worry about.
Sleepless nights and days that dragged and dragged and dragged.
I got some hope back the first time we met our paediatrician, Tom.
I don’t know whether or not Tom had any idea how low we were, how acutely we were feeling the pinch of life’s jaws, just how precarious the tight-rope felt. I don’t know whether he suspected I was hardly sleeping, or that my wife was sleeping even less. I don’t know what he knew and didn’t about us, as he sat opposite in his rumpled shirt and slightly scuffed brown shoes, sitting folded up in a way that made him look just a bit too big for his chair and desk. But I do know he’d spent hours reading about Williams Syndrome and that he was open about what he didn’t know and how he was going to find out. I do know that he was warm and that he tickled my daughter, and looked at her in a way that made me sure he didn’t see her as a problem. I do know he seemed excited by Williams’ Syndrome, which was important to me because I was going through a conscious process in which I was making myself see it the same way.
My wife and I felt comfortable calling him Tom the second he introduced himself. We got to know him well. He was the one who shared the good news with us when tests came back positively, and the one who told us we’d need to spend time in hospital when the news was bad. While we were there he phoned the ward every day to check how she was, which we found out from a nurse who made a point of telling us this was unusual.
As time has gone on and my daughter has thrived, we’ve seen less of Tom, which is why the emotional punch I felt when I heard he probably wouldn’t be our paediatrician in the future surprised me a bit. And this news did hit hard, making my want to call and beg and beg and beg for him to stay working with us forever and ever.
I didn’t. That would have been silly. We’re fine now and we know he never belonged to us. We can cope without him. But there was a time when it felt like we couldn’t, when it felt for a bit as if we were alone.
Thank you, Tom. We wish you well. You’re a professional doctor with hundreds of patients. You’ll probably roll your eyes when you read this.
That’s fine, but it won’t stop us thanking you publicly. It won’t stop us remembering you as first light at the end of the darkest of nights.
We’ll never forget you.