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.
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.
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.
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.