I am what you might call a ‘summer person’. I love light nights and going out without a coat. I used to feel dragged into autumn kicking and screaming. Wishing for one more day dashing about in flip-flops. But not this year. While autumn always felt like the end, this year it feels like a new start. Like a new term, but for family life. While I used to crave excitement, now I like order, routine and knowing my plan from one week to the next.
Our transition from spring to summer was sheer relief. Leo spent eight weeks of spring in hospital and he was discharged in May. He had been gravely ill – more so than I would allow myself to reconcile with at the time – and were just so grateful that he was well enough to go home. I looked up and noticed that the trees were full and green, the sun was higher in the sky and the grass was regularly overgrown.
I felt very tense at that time. We were living in a ‘see how things go’ phase where we, nor the doctors, would know when Leo would need to go back to the hospital. It could happen very suddenly, or it could take months or years. It was a high level of anxiety to be operating under and we had to be extremely vigilant. After a couple of false alarms, we slowly returned to some kind of normality. I returned to work, Leo returned to his nursery and we started our familiar routines.
Throughout summer we added in some treats. We had to cancel our holiday to Menorca, but we had some time off together. We booked a pony visit for Leo, went to the aquarium and the safari park, spent a weekend in Edinburgh with friends and enjoyed lots of parks and cafes. We celebrated Leo’s second birthday. Leo got back to the same developmental progress that he had made prior to admission. We enjoyed a short break away in the Highlands and we had time off work as a family without the imminent threat of further illness or hospital stays. Nothing medically has changed, but we are learning to live in this new stage.
We must always remain alert to the signs that Leo needs medical attention. It means that my stress levels are constantly raised. I am predisposed to anxiety and have been pretty much all my adult life, then enter the trauma of Leo’s early months, throw in a diagnosis of a disability and then add on a life-threatening infection for good measure. I have spent summer putting in place measures to build my resilience. I have wobbles, but I know what I need to do to feel better. Accepting the bad days rather than fighting them has been a revelation.
As the nights get longer, the temperature cools and we reach for the table lamp earlier and earlier, I feel ready for the months ahead. The sunshine we enjoyed this summer has restored me, seeing Leo full of joy and enjoying his full and happy days has fulfilled me and the breaks we have had as a family has allowed lighter moments that have faded the bad memories of earlier in the year. We have a family trip to look forward to. I am starting a new job soon. Then hopefully the year will taper out in peace, in comfort and with people I love.