I want to nag you to find your school tie and put your shoes on.

I don’t want to connect your little tummy to a feeding tube for your breakfast and a cocktail of medicines before 8 o’clock.  I want to heat up a bowl of porridge and sit with you while you eat it, talking about the day ahead.

I don’t want to wash your face and brush your teeth, carefully wiping the foam away, lest you choke.  I want to peer over my glasses at you sternly with a look that says; “two minutes? There’s no way you’ve brushed your teeth for two minutes!”

I don’t want to wave you goodbye as you sit on a bus each morning with adults and children I barely know.  I want to hold your hand as we walk to school, I want to kiss you goodbye on the playground.

I don’t want to spend the time while you’re at school filling in forms for things you need, chasing appointments with consultants and picking up medication.  I want to be buying you the latest computer game or cleaning mud off your football boots.

I don’t want to panic each time the phone rings, worrying that it’s the school to tell me they’ve had to call an ambulance for you.  I want to worry about nothing more than bumped head letters and cut knees.

I don’t want to spend endless hours doing physio with you each evening, trying to force your floppy limbs to do things they really don’t want to do.  I want to listen to you read and practise your times tables and test you on your spellings.

I don’t want to put dinner into a food processor and blend it until it’s smooth enough for you to taste; three teaspoonfuls carefully spooned into your mouth, slowly, slowly, slowly.  I want to dish up a hot home-cooked meal and nag you to use your knife and fork properly and finish your vegetables.

I don’t want to wedge you into a sleep system each night and attach a probe to your toe. I want to tuck you in and cuddle you and wish you goodnight.

I want to put you to bed without checking your heart rate and oxygen levels.

I want to kiss your forehead without wondering about your temperature.

I want to watch you sleep without worrying about seizures.

I want to wish you goodnight and hear you reply.

Some days I don’t want to be your carer, I just want to be your mum.