This is our normal

Most of the time our family life ticks along quite normally and then every so often, we hit a little bump which brings a realisation that what’s normal for us may not be that normal after all.  Yesterday morning was one of those times.  A phone call from school to say that Jessica was unwell and could I go and pick her up.  Unwell in this case translated as being blue and jittery.  When I got to school, Jessica was lying down on the floor in her classroom, wrapped in her coat to warm her up with the teaching assistant holding her hand and telling her a story, while watching her closely.  Jessica’s lips and cheeks were purple although thankfully she no longer appeared jittery.


It was one of those moments when I am truly thankful for living close to both the school and the doctors’ surgery.  Within a few minutes of me picking Jessica up from school, we were at the doctors’ surgery waiting to be seen.  Jessica’s colour had picked up by the time we saw the doctor, who listened to her chest, looked in her ears and throat and checked her sats. Jessica seemed well apart from having a cold.  It seemed that the likely cause of her going blue and jittery was due to her desaturating briefly as a result of running around while full of cold.  A reminder of how a cold can hit her hard at times.


Those few minutes in the GP surgery made me realise again how different our “normal” can be.  It was the slightly stunned reaction to Jessica’s normal oxygen saturation levels (sats) being around 80% that triggered the realisation this time.  I’ve become desensitised to how abnormal Jessica’s sats are. It’s only moments like this that make me aware of this and a whole host of other little things that are part of our normal.

Jessica wearing her heart jumper with the caption "This is our normal"

For us, normal is:

  • Using words like “cyanosed”, “oxygenated”, “sats”, “echo” (short for echocardiogram) and “cardiologist” as part of our normal vocabulary.
  • Making up meds several times a day as part of our standard routine.
  • Going on holiday and making a mental note of where the nearest A&E department is and where the nearest children’s cardiac unit is. I’ve also been known to programme them into the sat nav if Jessica shows any sign of being unwell whilst away.
  • Explaining to Jessica when she was a toddler that the doctors’ surgery is “like the hospital but smaller and you don’t have sleepovers there.”
  • Referring to hospital stays as “sleepovers at the hospital.”
  • Worrying that a minor illness like a cold might result in another hospital stay.
  • Looking at the medical information box on a form and knowing we’re going to need another sheet of paper…
  • Not having to explain what anything in the toy doctor’s kit is for, and having extra items in it from previous hospital visits.
  • Having to think about what to do when Sophie was ill outside of surgery hours because unlike Jessica, she doesn’t have open access to the children’s ward.
  • Accepting that Jessica will often look quite blue in the winter and constantly assessing how blue she is and how quickly she pinks up if she warms up.
  • Being on first-name terms with all the staff in our local pharmacy.
  • Living in the moment and not looking too far ahead.


One of the hardest things for me with Jessica starting preschool, and then school, was having to trust someone else to keep a close eye.  I’ve had five years of this normal – I have a good idea of what is normal for Jessica, what is concerning and what I need to do about it.  It takes a lot of trust to hand that over to school and I’m thankful that so far, they seem to have reacted quickly to any concerns. What’s also important though is that, although the teachers might be keeping a closer eye on her, as far as Jessica’s day-to-day life at school is concerned, everything is completely normal.


Two Tiny Hands


29 thoughts on “This is our normal

  1. Oh my goodness how frightening for you all. It must be a relief that the school staff seem to be vigilant and know how to deal with it. I hope she’s soon feeling much better.

    1. Thank you Nat, she’s back to her usual self today. So relieved that the school handled it all so well and the doctor saw us so quickly x

  2. I have to admit the bit about her lying down with the teaching assistant made me tear up a bit! Such a lot of trust you have to place in other people, I’m not sure I’d be able to let go at all.
    The point about Sophie is so interesting though, it must be weird having spent so much of your parenting experience having access to the children’s ward at any time and yet with Sophie having such a different experience!

    1. It was lovely to see the teaching assistant doing such a fab job at keeping Jessica calm and settled while clearly keeping a close eye. The little extra moments of caring make it easier for me to have to let go and trust someone else – to see them looking after her so well was reassuring. It was a bit of a shock when we realised that we were so used to Jessica’s normal that we didn’t know quite what to do with Sophie’s normal!

  3. Oh I’m glad she was ok yesterday…sounds like the school are on it. So important like you say for your ability to trust them. Your normal can’t be easy but I think you rock your normal and Jessica and Sophie are very lucky in their mother xxx

    1. Thank you so much Lucy – seeing how well the school coped has definitely helped reassure me x

  4. Oh Louise I’m glad Jessica was ok. I really admire how brilliant you and your family are at coping with all of this. My nephews have haemophilia so although it’s not the same my sister also has a different ‘normal’ to most families – the boys need injections every few days and if they get hurt they may need extra injections or hospital visits, and if they have any difficulties moving their joints they have to go up the hospital to check for joint bleeds. But, as I’m sure is the same for you, they all just get on with it and it’s all a standard part of their life. I hope the winter is as healthy and stress-free as possible for you all! #FamilyFun

    1. Thank you so much Ellen. I can imagine that your sister’s normal can be quite challenging as well but it’s true that you just get on with it and adjust to it being everyday life x

  5. Oh, that must have been a terrifying call to get. It sounds like the school handled it really well though – the teaching assistant sounds lovely, and that must be really reassuring for you. I’m glad to hear she picked up once you got home, and I hope she’s feeling much better today. #FamilyFun

    1. Thank you Katy. It was worrying but so reassuring to see how well the school handled it. Much better today though and was back to school as normal 🙂

  6. Aww! Bless her! I’m glad Jessica is OK and that the school handled it so well. It must be reassuring that they are so good…
    Sending love and hugs x

    1. Thanks Sarah – it’s only moments like that when I realise how much we think about without being aware of it! So reassuring that the school handled it so well x

  7. I’m so glad she’s okay! I can’t imagine how stressful it must be to have to worry about these sort of things – but as you said, it’s become normal for you. It’s wonderful that the school handled it well and you were able to get her to the doctor straight away. #FamilyFun

    1. Thank you – I was very impressed by how quickly the doctor saw us! Very reassuring 🙂

  8. It must be very scary and stressful for you so much of the time. But people can adjust to a surprising amount and it sounds like you and the school are doing a wonderful job looking after your gorgeous little girl. x #familyfun

    1. Thank you – most of the time we just do it all automatically – it’s moments like this that bring it all home really. So reassuring to see how well the school coped with it though.

  9. Louise,

    This is one of those situations where the info sheet you prepared comes into its own — it should ensure that everyone does the right thing at the right time.

  10. Oh, little poppet. It sounds like her teaching assistant is great, wrapping her in her coat and telling her a story as she was waiting. Your normal is definitely not an average kind of normal, but you always make it sound like it’s all fine. You are a strong mama, and your little lady is a heart warrior! She’s so pretty and grown up! I can’t wait to meet the girls next week. x

    1. Thank you so much Mel. Love how caring the teaching assistant was. Really looking forward to seeing you next week! 🙂

  11. Wow what an eye opener into your life. I understand when you say you have become desensitisated, because as you say for you it is normal. Nonetheless it must certainly be tough at times. I’m glad it all turned out ok that day for you and Jessica. Thank you for sharing with us st #familyfun xx

    1. Thank you – it is tough at times, but most of the time it’s just our normal life. It was such a relief that everything was okay with Jessica though and so reassuring that the school responded well to it. Lovely to link up to #familyfun, thank you for hosting 🙂

  12. I loved this post. So many situations that we look at and think “I could never do that” or “I would never be able to handle that,” but when it comes right down to it, if you happen to be in that situation at some point down the road, you WILL do it and you WILL adjust because you have to. People are strong like that. YOU (and your daughter, of course) are strong! Thanks for this post and for your blog.

  13. Wow. That is quite a normal. I just love how Jessica sees it as normal to her. You are right though it is your normal. I can’t quite imagine having all your normals in my life. You are a super family, xXx Thanks for linking up to #familyfun

  14. Doing these things day in day out I imagine becomes routine and its easy to forget I’m sure that it’s new to the school’s staff. I’m hoping your little girl quickly recovered. Great that you aren’t too far from school and the doctors. #FamilyFun

  15. How horrible it must have been to be called to school. This is cush an emotional post, I got a lump in my throat reading your bullet points, especially the last one. I hope she is feeling better now. Xx

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