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.