When Woody was about 9 weeks old, he was admitted to hospital under the vague term “failure to thrive”. Quickly this became a cardiac issue as he started to have cyanotic spells (heart spasms with very low oxygen saturations) and his case became an emergency. I felt like I was living in a nightmare and, as I tend to do when deep in trauma, I felt sheer dissociation from my life – like it wasn’t really my life, it was all a bad dream.

I remember it being a Friday evening and walking back to the old children’s hospital through the resident Marchmont area of Edinburgh. I looked at the soft lighting in people’s living room windows and longed to be like them – at home watching a movie, waiting for a take away, heading out for a drink at the pub. I longed for normality and for this nightmare to be someone else’s.

Even now, after three years and more hospital admissions than I can count, after jaundice, spells, heart surgery, wound infections, croup, sepsis and now this encephalopathy – I still don’t really recognise this life as my own and spend my time fantasising about what it might be like to have a “normal life”.

I see the doctors and nurses finish their shifts and head off home. I imagine what that might look like – a happy, secure place. Somewhere to relax and to have fun, make plans for the weekend, settle down to watch a movie.

I’m ashamed to say, I resent everyone who gets to go home at the end of the day and not leave their loved ones in hospital. It’s irrational I know but I do feel bitterness, like they are somehow duplicitous for helping my child during the day and going home to their real life at night. It’s such an unfair thing to feel and comes from longing so desperately for a normal family life.

But there will be people who look at my life and feel the same – wishing their life was more like mine. I work for a terminal illness charity. How many supporters who have just lost someone dear to them have watched me walk away from their houses, wishing to have my life – not in the shadow of loss and sadness?

After all, my son is recovering and these professionals are all doing their jobs and doing them very well. It’s not really about them, it’s about me and what I yearn for.