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.
Spending some time in the city centre last year, I was jolted back twenty years as I overheard a conversation.
“You want that? For school? Hmm. You know what. Fine…”
As a teenager gleefully carried the zip up tunic dress to the cash desk I had a sneaky smile at the mother and daughter doing battle over school uniform. There were similar discussions going on all over Dundee city centre last week as debates were had over sweatshirt or cardigan, shirts or polo-shirts and of course trainers or shoes!
I remember a love-hate feeling about the Back to School shop. I hated that it was advertised from the minute the school bell rang on the last day of term when all I wanted to think about was sunshine, watching ‘Saved by the Bell’ and eating Pop Tarts for breakfast. I did not like the queue in Clarks Shoes when I was at primary school, or the over-heated schoolwear department of Marks and Spencer. As I got older I took more of an interest because it became much more important to get it just right – grey or black skirt (never trousers!), fitted shirts (my mum hated those) and of course backpack or tote bag?! I think I usually got it right – but for the year before and everyone else had moved on. Never mind, it wasn’t a fashion show as I was always reminded. The real place I could show flair was in Woolworths.
Ten months in… A while since I wrote my last blog. What does prematurity look like ten months on?
When we first brought Leo home. He was like any newborn – just smaller. He fed, he cried, he slept, he pooped, he thrived on cuddles. In a matter of weeks that would change as he underwent neurosurgery but soon we were back on the ‘normal’ newborn train. Eat, sleep, poop, cuddle and repeat.
In the last ten months Leo has grown, he sleeps all night, he makes adorable sounds, he kicks and wriggles, he enjoys porridge and purees and he puts things in his mouth. He is alert, aware and one of the cheeriest souls you will meet.
At ten months I see the distance with Leo and other babies widening. I know, I know. Don’t compare. All babies are different. They all do what they want and when they want. Leo doesn’t sit or roll… yet! But boy are we working hard. We’re filling 3-6 months vests now so we are on our way.
#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.