I am watching the world around me confront a new reality brought by the COVID-19 pandemic. Every life lost to this virus is a tragedy and the scale of loss is devastating to the entire global community. I realise the worldwide severity of this illness and I, in no way, would or could ever rationalise or minimise that devastation. Today, on the 22nd of May, the number of lives lost is 333,000 with over 5.1 million people found to be infected. One-third of a million families grieving a loss due to COVID-19.
I am watching this unfold in Scotland as a parent of one of the one billion people in the world with a disability (and as a big sister to another). I have seen my life change dramatically as a result of steps our Governments have taken to limit the loss of lives and prevent overwhelming our NHS. For one billion people who were already coping with the challenges disability created in their everyday lives and their families, things have become even harder. Until this point, I have been fortunate enough not to have anyone in my immediate family become ill or lose their life to coronavirus. That is the one thing I focus on when people ask how my family is. Commenting anything other than “well” can feel indulgent. Despite the fact we are without nursery, therapies and clinics, not to mention the circle of supportive family and friends we usually have around us, it does not occur to me to complain. It’s no one’s ‘fault’ and we work around it.
I have observed how the people around me, and the wider public have behaved through the emergence of the virus and the lockdown. I have seen my own thoughts and behaviours metamorphise as we move through the weeks. I have been shocked, saddened, angry, moved, thrilled, delighted, bored, frightened, grateful and exhausted. Like many carers, feeling all of these things in a week is not that unusual.
Seeing your child ill in hospital is one of the most difficult things you will encounter. Whether a premature baby or a teenager approaching adulthood, seeing your child dependent on the expertise of a hospital team to save their lives is the most vulnerable you may ever feel. Your priority is their recovery and wellbeing. Your waking thoughts are focused on charts, stats and test results. You measure time in doctors’ rounds and nurses’ handovers. You may be going home to sleep, creeping into parent accommodation or camping out on a folding hospital bed. You get through it, because you have to, and your child needs the constant in their life to be well, constant.
If you are lucky, like I am, then you will have people around you in life who want to help. People who want to support you and make sure you are fit and well for your child. They will check in on your child’s progress, but they will also be concerned for you. Unless they are medical specialists, there is often little they can do to actually help the child.
If someone you care about is currently spending time with their child in hospital, you may not know how best to help, even if you really want to. You might be worried about causing offence, appearing nosey or interfering. Imagining yourself in the situation might provide clarity. There are things that have undoubtedly helped me. I am fortunate enough to be able to share a list of kind things my friends and family have thought of. I want to share them – as a resource for those facing spending time with their children in hospital, for their loved ones and as a reminder to me, should any of my friends ever need the same in return.
It was Sunday afternoon and I was stressed out. I was overwhelmed, and Leo was crying. He was looking at me like I had utterly betrayed him. I cuddled him and told him I was sorry, I was just trying to help him, but I had got it wrong. How had this dramatic scene come about? I had taken him to a baby swimming class.
Leo had not been swimming this year until we went to the hotel pool last month. He had been ill, and we had been busy at weekends. He hadn’t enjoyed the hotel pool – it was cold and noisy. I knew swimming was very good for him – the water would support him, and he would enjoy greater physical freedom than he is used to. I was determined that we would get back into swimming with him.
A visit to our local leisure pool went better and I was looking forward to the swimming class. It takes place in a hydrotherapy pool which is great for his muscle tone and there would be no older kids jumping around and shrieking. I had a vision of a lovely mother and son bonding moment in a cosy pool while Leo grew confident in the water.
The reality was 30 minutes of fast-paced activities, feeling like I didn’t have enough hands and a very upset Leo. I felt quite stressed trying to keep up and I felt very guilty that Leo was having such a rotten time. At the end of the class, the stress subsided, and I felt very upset. First of all, I felt very bad that I had put Leo through such a miserable time. Then I felt disappointed that I had failed to find the right class for him. Finally, I felt demoralised. I had acted with the best of intentions and I had upset my son.
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.
Mice, rats, spiders, enclosed spaces and clowns are all things that people fear LESS than public speaking. I’d take my chances with a 60-second pitch at a networking meeting over being locked in a cupboard with a clown and I’ve been to some strange meetings… Public speaking is a common fear encountered in the workplace – people can feel very vulnerable and uncomfortable. Thankfully, organisations are increasingly supportive and provide training and support for their teams. As a well-understood fear, colleagues are generally sympathetic to glossophobia.
What I have begun to observe amongst my peers is a growing incidence of scriptophobia, the fear of writing in public. As a social anxiety, this fear is rooted in worries about being wrong, looking silly or being negatively evaluated. While most people may not describe themselves as having a writing phobia, many will admit not enjoying it. Presenting information coherently in writing is a skill that often we do not need to practice once we have left school. Especially now that communication is often in text messages, email or social media. Long-form content, such as letters or reports, are rarer. Nevertheless, there are times when public writing is necessary, and it can cause stress and worry.
If you run a business, you will need to put your thoughts into writing. Tenders, case studies, award nominations, website copy, blogs, marketing materials and press releases are all forms of content that can help you grow your audience and increase sales. If you are running a small business you are likely to be trading services or products based on your skills, and these probably don’t involve writing.
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.
Saturday was World Prematurity Day and the hashtag was trending. Seeing my social media timelines filled with images that reflected our experience of having a baby, as opposed to what is the more mainstream experience, made me feel part of a very special group of families when I often feel isolated.
It was a year since I wrote my first blog on Leo’s early arrival and I reflected how so much has changed since then. Last year, I didn’t share the whole story. We were still relieved to be at home and seeing our baby thrive. We were enjoying normal baby things. We had our First Christmas coming up. I hadn’t fully allowed myself to feel the anger and grief that was circling around my head and I was still very much in the ‘taking it a day at a time’ headspace thinking that eventually, our life would plateau out.
Earlier this year I shared the information I had left out in this initial blog; our baby had suffered a brain haemorrhage and his development may be affected. On World Prematurity Day last year, I was putting my fingers in my ears saying ‘la, la, la’ and still hoping for the unlikely outcome that Leo would not be impacted by the damage caused. In fact, ‘hope’ was the theme of the blog.
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.