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.
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.