When Elfie is growing up I never, ever want her to consider herself different. Despite the medication and the doctor’s appointments she will always be normal. One hugely comforting thing I took from my last post about her is that it’s not just us in a difficult situation; every family has their quirks, their intricacies, their differences. People have problems and issues but they just don’t get discussed, and that’s why it’s easy to feel isolated and alone. So thank you a million times over to everyone who commented, it really reassured me.
Saying that, when you’ve had what feels like 24 hours from hell it can be difficult to remember what the eff your version of normality is.
Sunday was wonderful; a lie-in and morning of cooking and playing before we welcomed some friends from our old Shoreditch life into the countryside. I made a retro prawn cocktail, beef shin stew and apple pie, and we had such a great afternoon of storytelling and reminiscing. But that evening after her bath all Elfie wanted to do was cuddle, which she usually hates, and is a sign she doesn’t feel good. We cuddled through In The Night Garden and she went off to bed, but when I checked on her at 10pm she was fiercely hot.
I stripped her bedclothes off and checked her temperature – 38.5, 2 degrees hotter than normal. No diarrhoea or vomiting, but she was obviously weak and in discomfort. This is the point I always start to panic a little bit, start wondering if we should pack a bag for the hospital, call the doctors, check her blood sugar. I think ahead and wonder who we will speak to on the phone, whether it will be a nurse or a doctor and how I will put into words what is happening. Having to explain to a medical professional what is wrong with my little girl and the treatment she needs feels wrong, unnatural and leaves me feeling nervous when we know more than them about it as is often the case. I worry about having to spend two days on a noisy overly warm hospital ward, with neither of us getting any sleep (Elfie because of the lights and crying, me because I have never met anyone who can sleep in a plastic chair).
Luckily the last time we saw her specialist in Nottingham I’d asked them to draw up a new copy of her ‘sick day rules’: a two-paged document spelling out her condition, her current medication, the names and emergency numbers of her consultants and exactly what to do in case of varying degrees of illness. At this stage he was the least worrying, with a temperature over 38 but no sickness or diarrhoea, which are immediate ‘go to hospital now’ signs. She’d eaten very well that day so I knew her blood sugar would be decent, so we administered her medication alongside ibuprofen and paracetamol to ease her discomfort and bring her temperature down.
She fell asleep in between us in our bed – something that hasn’t happened for over a year, since she was a tiny baby. Of course this meant I got no sleep as I kept checking her little sweaty back for a temperature (it peaked at 39.4) or stroking her head as she moaned. She was so hot and shivery and sad.
At 4am her temperature had stabilised enough that we could put a babygro back on and put her back in her own bed. It’s all a bit of a blur but I remember getting up to her three times, stubbing my toe each time, and Will doing the same (minus the stubbing).
Today was a haze of making sure we all ate vaguely on time, working, catching half an hours sleep when we could and CBeebies. Lots of CBeebies.
Writing all this down is making me feel slightly self indulgent, but I wanted to put into words how utterly drained I now am. The long night watching over my poorly shivering baby, watching for signs that would mean a speedy drive into hospital. The tears today at the unfairness of how difficult life can be, and the thought that this is what she’ll have to struggle with every time she’s ill. The work deadlines I still had to meet even though all I wanted to do was hug her all day.
Every time she is ill like this I feel like it mentally sets me back 6 months. Reminding myself how swiftly she can become so poorly is terrifying and means I will be loathed to leave her alone for the next few weeks, and definitely not overnight. I want to wrap her up in cotton wool and never let go. I was not built nor prepared for this level of worry.
But I need to take a step back and look at the bigger picture; motherhood is tough for me but it’s bloody hard for everyone else too. Other mothers experience much worse and survive, and we all get by on miniscule amounts of sleep. There are weird baby illnesses, teething, development issues… so many trials that other families go through. I need to remember that Will and I have a bright, beautiful child who is completely healthy 95% of the time and a pleasure to look after 100% of the time. I’ve had my day of feeling sorry for myself, now it’s time to move on.