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 was feeling a bit frazzled this morning. I don’t know how getting two humans out the house feels like such an ordeal, but most parents would agree it’s a challenge. Leo was up too early, and he had to entertain himself just a little bit too long when I did unreasonable things like having a shower, drying my hair, tidying up, putting the washing on, getting all his stuff together for nursery and packing the car. His little toy giraffe was shouted at and the poor wee wooden animals were decanted from their ark. I do a lot of singing in the morning to keep the entertainment going while I try and sort things out. Leo’s little applause at the end of each song keeps me going.
Despite being up for more than two hours, I left without time for breakfast. That wee emoji with the steam coming out, that was me. As usual, once we are in the car, we both calm down. We chat about our day, sing songs and practice animal noises and arrive at the nursery. We are always greeted with a cheery welcome and Leo brightens further when he realises a fun morning awaits.
It’s a truth universally acknowledged that when your family gets a week off to spend together, at least one of you will get ill. That’s what happened to our family this week. Ross and I both took the week off work and Leo came down with a cold. I put on my out of office last Thursday evening and by Friday morning I had Leo at the GP surgery to get checked over. He is fine, and it really is just a cold, but the poor wee guy is out of sorts. On Monday, I woke up with a blocked nose and scratchy throat, and so it continued.
Just like the physical strains begin to show when you get some downtime, so do the psychological effects of needing a break. I found myself a bit tetchy this week. Not feeling 100% and looking after Leo who is less contented than usual was taking its toll and something else had upset me. Something that might not usually make me react emotionally, but I was more vulnerable than usual.
I took a course of action when I realised this. I cancelled a non-essential event I had planned – it needed me to be in a positive frame of mind and I wasn’t. I invited a friend around. We had a takeaway for dinner and a great conversation with plenty of laughs. I continued with my plans for Leo. I made sure I got to the gym. The what, now?
I have had this post in draft for a couple of months. I was waiting for the right time for our family to share it. Lately, Leo has been doing so well and we are feeling positive. We don’t shout about Leo’s disability but we don’t hide it either. It’s just something about him. I have encountered ignorance about disability (and confronted it) for almost my whole life and I think the only way to counter it is to be open about the realities. If you understand someone’s journey then you will have more empathy. This morning I learned it was World Cerebral Palsy Day and I felt that it was the time to share this post. I am a lot less angry now than I was when I wrote it.
I know that people reading this will be from all walks of life, will do lots of different types of jobs and will have their own challenges to deal with. I hope that reading this will make them mindful that they don’t know what people are dealing with in life and that kindness should always be the default response when faced with someone different from you.
This summer, exactly a year to the day we were given the devastating news that our son’s brain scan was showing evidence of a brain haemorrhage, it was confirmed that he has Hemiplegic Cerebral Palsy. That means the right side of his body is impaired by the damage done to his brain. We knew this was a possible outcome but had remained optimistic. The signs over the last few months had been hard to ignore and my fears of these two words were realised.
Leo, the boy who had overcome all the odds to be born at 25 weeks and 5 days and not only survive, but thrive, breathing independently and requiring only dietary supplements on discharge from hospital three weeks before his due date. Leo, our baby who one week before his due date was undergoing surgery so a neurosurgeon could fit a shunt that would drain excess fluid that wasn’t been absorbed in the ventricles – another side effect brought about the bleeding on his brain. Leo, the amazing child who got through his first winter without a single bug. Fate was not yet done with Leo.
I’m now four weeks into my new regime with Better:Gen. The shiny optimistic stage has passed and we are now into the icky part. The part where good habits are made, we are tested to our limits of willpower and resilience is key.
The long-term goal is to be healthier – fitter and with loads more energy. I am seeing signs that I’m making progress. A bit less lethargic in the evenings, fewer naps at the weekends and a few more chores being done are all good indicators that I’m on the up.
At the weekend I shared how the time had come to address my flagging energy levels and boost my wellbeing after a tough year and embedding survival strategies. This revelation and my thinking behind it seemed to resonate with many of my friends, family and colleagues. It’s great to open up and be met with positivity. I want to share how I have done the hardest part – getting started and all those immediate lessons learned from my Better: Gen programme.
Time is my greatest luxury, my greatest resource and my greatest challenge. Time is something I have blogged about before. Time works in two spheres for me – the weekly plan we get through and the long term. I’ve been living in the here and now and neglecting the bigger picture this last year – and that’s ok – it had to be that way. I have a baby who was very premature, has needed operations and is facing developmental challenges. Survival meant taking a day at a time.
Survive we did. In fact, Leo is thriving. We navigated his first day at home, first night in his own room, and his first birthday. We managed mummy’s first day back at work and are now in a great routine. Leo is thriving. But I am not.
#PrematurityIs being told your baby is on his way into the world, foot first, at 25 weeks in the wrong city.
Friday 17 November is World Prematurity Day and the charity, Bliss, is doing a great job of raising awareness of prematurity. Prematurity is the leading cause of death in children under five around the world. One in ten babies is born prematurely.
I have had some experience of prematurity in my life so far. I was born five weeks premature. My youngest sister, Taylor, was born ten weeks premature. There were no signs during the pregnancy that my son, Leo, would be born at 25 weeks and 6 days. It had been plain sailing before that.
I don’t remember enjoying the period between Christmas and New Year so much for a long time. I was working parts of it for the last two years but even before that, I didn’t seem to count it as a proper holiday. I’ve really gotten into it this year. We haven’t made plans – no travelling, no nights out, no shopping sprees, no madcap schemes for self-improvement. We have embarked on absolutely guilt-free resting, listening and reading. I’m not entirely sure we should feel guilty about those activities anyway. Rest, listening and reading being essential ingredients for curing the modern mania of 24/7 living and connectivity.
It occurred to me while watching the ‘wrong’ Scrooge. That is the one from 1970 with Albert Finney. The 1951 film with Alistair Sim is the ‘right’ one. Obviously, The Muppets’ Christmas Carol is the best of the genre. Some things about Christmas can be disappointing. Maybe the Dickens book that pertains most to Christmas is actually Great Expectations.
For the week before Christmas I get excited. Child-like excited. I get butterflies in my stomach. I enjoy the ‘to do’ list of festive things. I want to make it all perfect. Then I start to think about the supermarket ad version of Christmas. The big, bustling family. Games. Champagne in a big ice bucket. A perfectly fitting velvet dress. A handsome husband – OK I get that one, but no chance he’s wearing a suit. Snow falling. A puppy with a red bow around its neck. It’s absolutely ridiculous. It’s a work of fiction. It’s a nonsense spreading to make us feel like somehow we are failing so we buy stuff and feel like we are winning.