A Hellish 24 Hours

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.

15 Comments
  1. Your little girls condition sounds very scary and there is nothing wrong at all with being self indulgent- I know I would be a lot worse. I get so worried everytime my little girl gets a temperature, I don’t have the added worries of knowing that she has existing concerns that could make her even poorlier. I think you sound like a very brave lady given the circumstances and sometimes it’s good to write all these things down.
    I hope she starts to feel better soon. Xx

  2. I don’t blame you for feeling like that: I’m the same when my Girls get ill and they don’t have any kind of condition!! Besides, parenting is one long terrifying roller-coaster ride.Hope you are both better today x

  3. Oh Alice, you are not being self indulgent and yes some people are going through a very tough time themselves, but it doesn’t mean you are not allowed to feel your own emotions. You and Will are amazing parents, Elfie couldn’t have more love, support and care.
    I hope she gets better quick and that you get to take sometime to have a sleep and a rest yourself. Maybe you can tell clients that you have to move the deadline a bit?
    Take care xxx

  4. Hi Alice,

    I just discovered your fantastic blog as I’m 12 weeks pregnant with my first baby, it’s now on my daily reading list!

    I just wanted to say what an inspiration you are. My husband and I have just decided not to have our downs screening test – what would be the point if whatever the outcome we kept our baby? Seeing a young hip mum such as you cope with an ill child has made me realise that I could do it and has given me the confidence in my decision.

    Thank you and keep up the fantastic blogging!

    Kelly x

  5. This made me cry. My friend and I were having a conversation the other day around when they are ill you can’t see past it knowing in a few days it will pass as you are living it 24 hours a day with no let up. I can’t imagine coping the way you do with an actual condition. I get stupidly panicky if Lily has a temperature, especially in the night, and always seems to happen when OH is away. Lay there worrying, imagining all sorts so to have to deal with something so very real I think you are more than entitled to a self indulgent day or few. Hope Elfie is on the mend xx

    1. Thank you – I’m sorry I made you cry! She’s much better, it’s amazing the perspective a full night’s sleep can give you x

  6. Lack of sleep and the worry combined are a killer and the fastest way I find to lose perspective – you are both doing brilliantly

    It’s normal to lose days when small people are poorly, even when they don’t have the angst inducing condition she does

    Take care and get well soon

  7. Hugs. Just read back on the whole thing. She’s lucky to have such wonderful parents. (And it goes without saying how lucky you are to have such a cutie pie as her!) Fingers crossed for a smooth road ahead. (And you write very well for someone who’s had the dreaded no-sleep.) x

  8. There’s absolutely nothing self indulgent about you writing this post, it’s absolutely normal for you to be worried about your little bubba and especially when you’ve got the added worry of how speedy she can deteriorate given her condition. I do hope that she is on the mend, sorry you’ve had such a worrying and hellish few days, but well done for getting through it together. Sending lots of love and get well soon kisses xx

  9. Hey Alice, so glad your little snowflake is getting better. You’re doing an amazing job AND making it look gorgeous! Cant imagine the worry – my 2 are full of sniffles and calpol but thats as bad as it gets also i truly hope the winter chills leave u guys in snuggly peace Cx x

  10. Having spent one, non-emergency episode with Roman in hospital, i dont know how you do it, ESPECIALLY while you’re preggers! We were woken up every two hours throughout the night while my partner was in Japan so I was totally alone and I just kept thinking of you! hope E is ok now. Winter is tough on their lttle bodies!

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