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I Don’t Want to be a Carer, I want to be a Mum

I Don’t Want to be a Carer, I want to be a Mum

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.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Emma Murphy

Meet Our Blogger

I’m Emma, a special needs teacher and Mum to two boys and a slightly crazy springer spaniel. My youngest son has a rare genetic disorder called FOXG1 syndrome and severe epilepsy. I share our stories in the hope of raising awareness and acceptance of people with profound and multiple disabilities.

View Emma’s Profile

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