Monday, October 27, 2014


She found the roll -
Andrex puppy like -
and off she went,
free and exploring,
joyful in the every moment.
Side over side,
tangled up

This was perhaps - at least as I remember it - the penultimate day of normal infant movement for Eilidh.  Now, as I write, I wish so much that I had filmed it; that I could watch it over and over, remembering those moments when anything was possible.

We moved house, the commando crawling was there one day and gone the very next; that's how quickly SMA came into - and changed - Eilidh's life.  It's terrifying to think that this could happen to any seemingly healthy infant whose parents - unbeknown to them - both carry the SMA gene.  I can't help them at the time of diagnosis and in those days afterwards when their hearts are fractured (and I must admit that if I could, I would...) but I can tell them this: 

your child will bring you joy and happiness in abundance... 

and pray that they hold on to that hope.

I found this photo yesterday as I tidied up my desktop and couldn't help but share it with you after a family day of fabulous fun, joy and happiness abundant.


Midlife Singlemum said...

Virtual hugs from Jerusalem. xxx

Michelle Daly said...

Aw, thanks for sharing. xx