“But Mummy it’s Monday. I always go swimming on a Monday,” she said, bursting into tears. I felt myself tearing up too. Disappointed with her that she couldn’t go. Frustrated that I couldn’t make it right. Guilty that it was my fault. Because I’d expected this. For two and a half years, while he surprised us all with his strength and resistance, while we revelled in our good fortune, I expected that one day this would come.
I expected we’d spend extended periods when Benjamin was in hospital. I expected the ambulance rides in the middle of the night. I expected he’d be cannulated, intubated, sedated, operated on, tested, tested and tested some more.
I expected his older sister to miss out on her regular and irregular activities, to be packed off to nursery for extra hours, picked up by people she didn’t know, to spend hours doing colouring in hospital waiting rooms.
I expected his younger sister to be dragged around wherever Benjy goes. To spend too much time sitting in buggies and car seats instead of playing. To be left dirty and hungry when he presents a more urgent emergency.
I expected my husband to spend his nights at the hospital and his days at work, so that we pass like ships in the night, handing over a bag of clean clothes in exchange for one of dirty laundry.
I expected our family to be fragmented, for Jackie to miss her father, for my husband to miss his daughters, for me to spend nights cuddling up to the girls but feeling the emptiness where my boy should be, and days cursing the traffic on the A1 as I try to get from one of my children to the others.
I expected to be exhausted, unwashed, and alone. Because I’d asked for all this.
What I hadn’t expected, or asked for, was the kindness and generosity of our friends and family. I didn’t expect my godmother to arrive, bearing gifts, and spend a weekend getting our laundry up to date. I didn’t expect Granny to cancel her own medical appointments in order to travel up from Yorkshire – twice – and look after the girls.
I didn’t expect friends from Dunbar to show up in Edinburgh, claiming they’d “already been meeting someone else there,” and take Caitlin off in the buggy for two hours in the rain. I didn’t expect people who just happened to have children roughly the same age to take on playdates that extended past tea-time. I didn’t expect the neighbours to offer to babysit at all hours of the day or night.
I didn’t expect people to turn up on the doorstep with homemade cakes, soup, and great cauldrons of pasta Bolognese, complete with grated cheese to sprinkle on the top. Or at the hospital armed with fruit and chocolate.
I didn’t expect our hospice to send people all the way from Kinross to help out with the girls. Or the ladies from Family Support at the Sick Kids to take time out of their day to do the same. I didn’t expect the Charge Nurse to bend the rules so that I could breastfeed Caitlin on the ward.
I didn’t expect friends, colleagues and acquaintances to message us daily to ask how Benjamin was, how we all were, and what we needed.
I didn’t expect the outpouring of support and interest from people I’ve never even met except in Facebook groups. I didn’t expect SWAN UK to send Benjamin an enormous bunch of balloons, one of his favourite things in the whole world.
Edinburgh is the ‘Festival City.’ While Benjy has been in hospital we’ve been lucky enough to have the Meadows Festival and the Canal Festival just around the corner to make the days more fun for Jackie. But really, we’ve experienced a festival of friendship. All of these people, with enough to worry about in their own lives, dropped everything to help. I am humbled and overwhelmed by their kindness, and I realise what a difference even a small gesture can make when you have a sick child. Next time I hear of someone who has a child in hospital, I’ll try not to think “I’ve got enough on my plate,” but instead to ask “What can I do to help?”