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Dear Carer, Dear Friend

Dear Carer, Dear Friend

They told me I qualified for help from social care.  ‘Respite’, they called it.  They put some money in an account for me, and told me to find ‘staff’.

I didn’t want staff.  I didn’t want strangers in my home.  I wanted to fix my child, but no one was helping me with that.  I was lost, I was desperate.

You came into our house, and into our lives that day, and you’ve never left.

You didn’t notice when the house was a mess.  You didn’t care when I was still in pyjamas.  You talked and you listened, you watched and you learned.  You took instructions sometimes before they even left my mouth.  You absorbed like a sponge. 

Nothing is weird or unusual to you, you don’t flinch when dinner lands on your lap, toys are thrown at you, and your hair is pulled out.  When he’s at his worst you still seem to find his best.  You are so patient and gentle yet so firm and focussed.  You are calm, organised, and proactive; everything I want to be.

You bring experience but also open-mindedness.  You take direction but also direct me.

You ask about ME.  You care and you listen. You make me tea and you make me sit down and drink it.  You are sensitive and sympathetic but not patronising or judgemental.

We have good days and we have bad days.  We learn together.  We reflect on days gone by and feel collectively proud of what’s been accomplished.  You have seen me at my worst, and at my slightly-better-than-worst. You bring out my best.  You show me it’s ok to be me, and reassure me I am doing an ok job. 

Over time you’ve shared your own stories, and over time we have become friends.  You’ve confided in me, you’ve celebrated and cried with me.  I’ve watched your career and your home life change and evolve.  When life has been cruel and you’ve been at your lowest, you somehow find strength in him and it diverts your pain.

When he’s been through lows and times of real difficulty, you’ve pulled us all together. 

I’ve been a shattered mess and you’ve been the tower of strength.  I have watched you enjoy him and in doing so I have remembered how to enjoy him too. 

You’ve made him so funny! He tells me the jokes he has learned and repeats the naughty words and silly actions.  You’ve got your own private jokes and phrases and he loves that you have secrets.

You’ve been brave! When I was so scared to leave the house, you showed me resilience. 

You didn’t falter at the looks and glares, you didn’t fret over the possible obstacles.  Your primary aim has always been to give him every ounce of what he wants and what he needs, with a brilliant ‘screw-the-rest-of-the-world’ attitude.  You’ve taught me how to grow a thicker skin.

They said, don’t employ friends.  They said, you’re their manager, not their mate. 

They told me to give clear instructions and maintain boundaries. Draw up contracts.  I still forget you’re here to be paid; you make me feel you’re here out of choice and not for an income. 

Your name is hollered on repeat when you’re due to arrive, and he watches and waits with excitement. 

The house feels lonely when you leave and you often leave late because you’re so engrossed in each other.

You’ve been his therapist, his taxi, his teacher, and his advocate.  And you’ve been his best friend.

My child is a better person for knowing you. 

Firefly Blog

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

Emily Sutton

Meet Our Blogger

I was launched into the world of special needs on New Year's Eve 2012, on the birth of my son, Jenson. He is fabulous, sprightly and loving, and has redefined our lives. I am now a 'qualified by experience' therapist, clinician, secretary, taxi, PA, nurse, and in my spare time I am trying to be a good mummy. I am an auditor for the NHS and along with my husband run an accountancy business from home. It's a busy household but Jenson's extra genetic material seems to have given us all extra special powers!

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