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It’s Not A Secret

It’s Not A Secret

Last summer

And this summer

But we are still waiting

 

It's not a secret that you can't talk

But the few words that you can say are like the sweetest music

And when I say ‘I love you’, you say 'bike' or 'cat' and may never say ‘I love you too mummy’

 

It's not a secret that you have difficulty learning

Learning to read, write, paint a picture for mummy’s fridge

Learning to push the train along the track

Rather than destroy the track

Learning that it’s not ok to hug strangers

Or throw your iPad across Starbucks

 

It's not a secret that you wear a spinal brace

Although I used to buy extra-large jumpers to conceal it

And I want to punch people when they ask how long you will have to wear it for

Because it may be forever

 

It's not a secret that you wear specialised boots

And will never wear Converse or Nike

 

It's not a secret that you own a walking aid, a wheelchair, a school activity chair, an orthopaedic chair, a bath board, a toilet seat and a standing frame

And we have a cupboard full of free nappies

 

It's not a secret that your best friends are Iggle Piggle, Noddy and Thomas the Tank

And your favourite playground is the consultant's waiting room

 

It's not a secret that I have cried seven times this week

And it's seven days since I had a bath

It's not a secret that I feel constant anguish over your future

Or the lack of it

Or the uncertainty of it

 

It's not a secret that my fridge is full of wine

My cupboard is full of chocolate

And my calendar is full of appointments

 

It's not a secret that I want to spend precious weekends with you

Not drinking wine with my mates

Like the old days

But reserve the right to want to drink wine with my mates at a moment’s notice

When I really need to talk about my woes

And expect them to understand

 

It's not a secret that I used your disabled badge in Sainsbury's car park the other day when you weren't with me

 

It's not a secret that the last four years have felt like forty

But forty of the best years of my life

 

It's not a secret that I swear under my breath about 27 times a day

Some of them at you

Some of them at your baby brother

And some of them at your daddy

Not under my breath

 

It's not a secret that I wake in the middle of the night to listen to you breathing

And sometimes creep in and stroke your face

Because you don't really like me doing that when you're awake

 

It's not a secret that we wound the bobbin up

And back again

About twelve times yesterday

And I pointed to the ceiling, the door, the window and the floor

And you looked at me

And clapped

And signed 'again'

 

It's not a secret that I sometimes lie when friends ask if I'm ok

Because to explain why I'm not ok

Would be too painful

 

It's not a secret that I sometimes have to hurt you

To keep you safe

To keep you out of harm’s way

To keep your quivering body still

Under the X-ray machine

Or to administer your medicine

 

It's not a secret that the tears I shed for you

Are mostly tears of happiness

When you say a new word

Use a new sign

Get another award from school

Or give your baby brother a cuddle

 

It's not a secret that I wipe your nose

Your bottom

Your tears

And will continue to do so for much longer than most mums will do for their children

 

It's not a secret that everyone who meets you is intoxicated by your enchanting spirit

And that it's because of you we have become better people

 

It's not a secret that I only share a small proportion of my life with the world…

…because the rest is a secret.

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!

View Emily’s Profile

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