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



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


  1. 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

  2. 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

  3. Looking for Blue Sky8:56 am

    Huge hugs xx