It’s never fun when your little one is poorly. Sissyboo was never a sick child. She got a bunch of the childhood usuals – chickenpox, tonsillitis – but not that badly. OK, she usually managed to get seriously ill out of hours – why do kids always do this? – forcing us to rely on overstretched A and E services or an out-of-hours GP it takes ages to see before he or she sends you to A and E, but mostly she and we got off lightly.
I’m repressing the time she got croup and nearly stopped breathing. That was terrifying. But even then one emergency steroid shot and she was running round A and E in a vest and nappy and singing nursery rhymes to random strangers. Mostly, Sissyboo’s illness involved lack of sleep, emergency work/childcare arrangements, cuddles on the sofa and books and films. It was never convenient, but ultimately bearable and the sofa time with her even felt like a bit of a luxury sometimes.
Of course, that didn’t stop me worrying about her. But my sense of what constitutes worry now has been totally recalibrated. Who knew there was a whole other level of panic to experience? Not me. Not until prematurity and disability entered our lives.
I’d never diminish the worries of parents who don’t have medically vulnerable children. Up until two years ago I was one of those parents and I got anxious and stressed by all manner of things. The same things wouldn’t worry me in the same way now, but my worries then were no less valid than those I harbour now. But everything’s different when your child has been through so much. When every setback has so much potential significance.
You see, when premmies get poorly you don’t just have to treat the illness. You have to deal with all that came before it. A cold isn’t a cold if you’ve been on a ventilator for a while. Old scars wake up, newly agitated. As I write this at 2 in the morning, I am cuddling a wheezing Boo who has a probably mild virus but one that has agitated the damaged lining of his lungs just enough to sound like he has had an 60 a day smoking habit for 50 years. A mild virus means steroids and two inhalers and a medicine schedule so full and complex I’ve had to draw up a chart.
And it’s not just the real scars that come back to life when premmies get poorly. It’s those pesky metaphorical ones too. The hurt you feel as you helplessly watch your baby fight to survive, thrive and get home. The pain that accompanies the fear that these things might not happen. The memories of hospitals, treatments, their side effects and unhappy conversations. The anxiety that hard won progress will be lost. I had planned to write a blog post about Boo’s latest developmental spurt this week. Instead, I am sat on a cold floor trying to get him to sleep and wondering if we will get away without a hospital trip this illness and counting down the minutes until I can give him the next ten puffs from an inhaler. I hope I can still write that post next week, but I don’t know how far this will have set him back.
In short, when premmies get poorly you are reminded of how vulnerable your children and you are. You are reminded of how far you’ve come and how far you have to go.