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.
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.
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