I’m a huge advocate of self-care and even I am getting sick of those hyphenated words in a year where they are offered as the solution to so many ills. I have had people comment on how seriously I take it. For most of my adult life I have been navigating the highs and lows of the world of ‘wellness’ and in the three years since becoming a parent, it has been an important focus. I simply need my body and mind to perform for me every single day to fulfil all my roles and no more so than that of parent carer to Leo. I need to be strong enough to lift him, have the stamina to meet all his needs, be tenacious enough to advocate for him and be mentally fit enough not just to overcome the trauma we have endured together, but be resilient enough for whatever comes next.
It’s not all on me. I have help. I am aware that many who really need to look after themselves are not getting what they need. I have good family support. A brilliant local authority nursery. A personal trainer who cares about the whole picture. Understanding and supportive employers. I have drawn on practical and emotional support from charities. My boys provide the joy and the why, my home and my motivations. I invest in my health because my loved ones depend on it, but it’s more challenging that buying bath bombs, lighting candles and eating chocolate (but I do those things too.)
I believe that true self-care makes us uncomfortable. It is the harder daily route. I go out and run when I want to curl up and watch Netflix. I plan meals when I want to call for takeaway. I journal and work on my thoughts and fears when I want to bury my feelings. I meditate when I would like to scroll mindlessly. I prioritise the must do from the should do. I write emails of complaint when I would rather avoid conflict. These choices do not always make me feel kind to myself or relaxed, and they challenge me rather than soothe. But I know it’s what I need, and what I need to be for Leo. It’s about being accountable and responsible. Self-care can be fun, life-enriching and transformational; but it can also be very hard work. It is what you can control in an ever-changing landscape; but it doesn’t solve everything. It can also be an enormous privilege in the face of poverty, illness, discrimination and isolation.
What self-care is definitely not about, is fobbing people off when they should be properly served by authorities. I feel alarmed with the increasing reliance on teaching ‘self-care’ to carers who should be supported with respite. I am appalled that ‘wellness tips’ are offered instead of proper mental healthcare services to people who are suffering. Employers should not be offering ‘wellbeing’ leaflets when they cannot offer flexible-working, acceptable terms and conditions and defined roles and responsibilities.
For me, self-care is what we can do personally, so we can fulfil our responsibilities and potential to ourselves and others. But it does not replace essential public services that are legally and morally bound to provide for us.
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.
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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.
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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.
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