It’s not a secret . . . .

concert

It’s not a secret that you can’t walk
Although we truly believed you would
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

walkerIt’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

IMG_3625It’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.

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Published by

tetraspecial

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' PA, therapist, clinician, secretary, taxi, nurse, and in my spare time I am trying to be a good mummy. I work in an audit role 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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