We have recently been printing photos – mainly for a wall in our house where we have an ever expanding, slightly chaotic collection of family photos. There is currently not a single photo of Stella on the wall. She is almost two years old. We need to rectify this quickly, before she’s tall enough to see the photos and old enough to mind.
As I go through the photos on our computer, I get distracted by loads that will never make the cut for the wall. I like to think I am a decent photographer, but almost all our recent pictures are badly composed phone photos of non-compliant kids. So I force myself to focus more on the memory and emotion of when the photo was taken, than on the quality of the composition. Kids don’t care if the background is full of mugs and syringes, they just love a photo of them with their dad.
But this photo, I love:
It is technically flawed, badly composed. But look how happy Sam is! And look at all the tourists wandering around behind him, oblivious!
This was taken during the summer holidays, just off Trafalgar Square. James, Sam, Eli and I had just been to the theatre to see Horrible Histories at the Garrick Theatre. We had brilliant seats. Sam’s space was just off the foyer, at the back of the circle, so quite a long way from the stage but with a brilliant view. This is everything we look for in a theatre seat for Sam: wheelchair spaces in theatres are often right by the stage which he finds a bit much. There have been numerous times when we have had to leave a theatre early because Sam isn’t enjoying the performance. (His other pet hate is unexpected, roaming musicians in theatrical performances. He likes people to stay on the stage, not appear behind him playing a trumpet.)
The rest of us had seats either side of Sam, and we all enjoyed the brilliant performance. The boys have watched almost every episode of the TV programme so we knew what to expect. It was genuinely amusing for all of us, with poo jokes interspersed with historical facts, and loads of songs. Who doesn’t like a rap about Henry VIII?
After the performance we went to a café just off Trafalgar Square for lunch. We sat outside, with the pigeons, and put Sam’s ipod on while we were eating. Understandably, Sam gets bored if he’s just sitting around while being fed, and it’s not possible to talk to him or read him a book while eating a sandwich, so we always have a bluetooth speaker attached to his wheelchair (the pink circle by his head) which is connected to an ipod full of audiobooks. I think he’s listening to a David Walliams story in this picture.
I love the photo because how could you not love a kid laughing this much? But also in this photo I see all of the other ways in which I have changed over the seven years I have been his mother. At the beginning going on a trip like this to central London could be a bit daunting – how would we get there? Could we get Sam’s wheelchair in? Had we packed everything? Would Sam enjoy it? When Sam was very small I sometimes felt self-conscious about feeding him in public. I was really aware of how much noise we were making, and would have felt a bit anxious about playing an audiobook in a public place. I might have noticed whether people were looking at Sam, not because I was ashamed of him but because I was worried about him noticing them looking. Sometimes it felt like the logistics involved in getting us somewhere weren’t worth the risk that Sam wouldn’t enjoy it.
This trip was lovely. We packed what we needed (takes time, but we’ve done it hundreds of times) and drove in to the West End. We were a bit early so we had a coffee in Leicester Square. Went to the theatre, had lunch at Pret. Admittedly we had left Stella at home, as she would have added an unnecessary level of unpredictability to the whole outing.
Not only do we now not care if people see Sam being fed through his gastrostomy tube, we don’t even notice if people are looking. If he laughs hysterically, loudly, we are chuckling with him rather than being self-conscious about other people noticing. If Sam needs to listen to an audiobook in order to not get bored, that’s more important than whether someone doesn’t want to listen to David Walliams in their lunchbreak.
And what this photo shows is that Sam has a brilliant time on these kinds of trips. We all do. He hugely enjoyed Horrible Histories, and now knows more about the naming of Saxon villages than he did previously. He is able to take advantage of us living in London.
And the general public in Trafalgar Square are largely too busy going about their business, admiring Nelson’s Column or grabbing a turmeric latte, to notice whether our son is disabled, or tube-fed, or listening to The World’s Worst Children.
This is the kind of photo I wish I’d had in a crystal ball when Sam was little and not enjoying life. I might laminate it and show it to anyone who gives us the pity-look and talks about how sorry they feel for him. Don’t feel sorry for him or us, he’s having the time of his life!