Was this in the Plan?: I remember when...

I remember when...

I remember when you could walk

When you only had one tube

attached to a benign pump

when we dared to dream

about mainstream school

independence

sleepovers

a life of your own

when caring for you didn't need a nursing degree

or a 24 hour team

when we had hope

that you could just be a little girl

and not a patient

or a condition

or a diagnosis

now we just hope

that we can fill your time

with love and laughter

and take away the pain

3 comments:

Twinsplustwo12:57 pm
Steph this is so beautiful - and heart wrenching. You are an amazing mum - don't lose sight of your hopes and dreams for Daisy, even if they are unattainable, since hoping and reaching for them makes you the best advocate she could have. x
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Stephs Two Girls1:03 pm
Beautiful writing, so heartfelt and poignant. You have done the very best you can for Daisy, and created magical memories for you all. Your hopes have changed but are no less important to strive for, and I know that you won't stop. Glad you had chance to reflect and hopefully 'regroup' - keep on remembering you need to look after yourself too xx
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Looking for Blue Sky8:56 am
Huge hugs xx
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This is the story of my family, and how we are learning to thrive and not just survive when life didn't go quite as we planned.

I'm Steph, a suburban mother, sometime Marketing Director, now family plate spinner, journalist, carer, nurse, spokesperson, campaigner and marathon runner (actual as well as metaphorical).

I have four extraordinary children, my two boys have a diagnosis of high functioning autism yet they could not be more different, my eldest daughter is a creative social justice warrior, my youngest daughter was born with a very rare genetic condition.

In December 2015 I also became a widow, my husband, the father of my children & partner of 27 years, Andy, died of cancer, leaving us with a gaping hole in our lives. 13 months later our darling daughter Daisy died.

My life was never going to be predictable but as Andy always said, it is what it is, it's how you respond which makes the difference.

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I remember when...

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