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.
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.
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.
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.
I am 16 weeks pregnant, and despite the subsidence of morning sickness, I am feeling increasingly sick. I thought pregnancy would mellow me. I thought the hormones would make me all warm and gooey and peaceful. I thought I would learn to choose my battles wisely and create a relaxing environment to cocoon the little one. But no, I’m even more angry and agitated that normal. My husband calls me the ‘little agitator’ which is a moniker first thought up for Lisa Simpson. She happens to be a role model of mine so I don’t mind. Lisa always stands up for what she believes in. She isn’t afraid to rock the boat. She certainly doesn’t mind disagreeing with the adults around her.
The topics that are getting me particularly animated at the moment are the number of people who are increasingly using the differences between us for political or economical capital.