The day we got lost

Sandra considers how her son might reflect on the early stages of their journey together when they got lost.

 

I wish my son could write this story for himself. So I will write it for both of us.

Edward

I was born in London, so it is no surprise: I have seen the world for the first time on rainy "summer" day in July 2004. Both me and my mum needed a medical intervention and it wasn't straight forward, oh no…

I am a bit embarrassed to tell you that I was a right looker right from the birth. I had black hair and striking blue eyes. I can't help it and people have been telling me and mum about my gushing looks since…

The world around me wasn't stable either and soon after my first birthday, it crumbled. Since then it was just us two: me and mum. And my mum was doing everything to care and nurture me, on top of trying to find answers to the issues with my development. She spotted first that things were not right, then the nursery I went to spotted it as well, but doctors and other medical professionals fobbed us off and there were no answers.

However, whatever else happened, my mum called me 'her Little Miracle' and every morning she made me look in the mirror and told me how beautiful and clever I am. I choose to believe my mother. She knew then and she knows now the real me!

After many visits to people called 'specialists', I was getting really upset by people in offices who smiled at my mum but did not give her any answers. I was unwell after an injection and again doctors said nothing, even though my development deteriorated further.

Finally, one day, the specialists had an answer for us. They brought me and mum in, sat us down. Then they started to call me all these names and I was given something called diagnosis. I couldn't see that diagnosis thing, but it didn't sound like a nice thing. I was told lots about different things they said I wouldn't be able to do. My mum was advised to 'give up false hope' of anything getting better.

That day we were lost on the way home. I suspect we were lost in the hopelessness and cruelty of that cold doctor.

Did I tell you that our home was right opposite the doctor's office, but we couldn't find it for hours?

Home. At that time, mine and mum's home was on the 4th floor with no lift and I couldn't walk up the stairs without help. So that day, after that diagnosis and after being lost for hours, she just had to carry me up three flights of stairs.  But I always carry her too, with me, in my heart. Like in the poem by E.E. Cummings 'I carry your heart'.

i carry your heart with me (i carry it in
my heart) i am never without it (anywhere
i go you go, my dear; and whatever is done
by only me is your doing, my darling)
i fear
no fate (for you are my fate, my sweet) i want
no world (for beautiful you are my world, my true)
and it's you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than the soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart (i carry it in my heart)

 

Have you had a similar experience to Sandra and her family? If you need expert advice, Contact a Family have produced guides for Getting a Diagnosis, Living without a diagnosis and getting Support when you don't have a diagnosis. You can also ring our Freephone expert helpline at 08088 083 555, Monday to Friday, 09:30-17:00.

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Written by diagnosis at 14:14

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