We loved beyond all measure,
Though the first milestones weren’t there...
Something we did not treasure.
People were quietly worried,
A warning flag was raised,
So the day after his christening,
We were told it’s just developmental delay.
We joined physio groups we made great friends,
But still his legs would not stay up.
The screams from using gaters on him,
Made tears that could fill a cup.
He did not walk, he did not talk,
Though finally he happily did sit.
And Mr Tumble and Makaton
Should never under estimate their bit
In easing his frustration
When we did not have a clue,
Would he, could he? We did not know.
Are hearts were being chewed.
Test after test, room after room,
But there was an elusive causey
As christmas week in 2010,
“It’s a type of cerebal pausy!”
And then we cried, oh how we cried,
Thinking we were done,
But genetics turned up after an MRI
And here began the fun...
They threw the diagnosis out,
Introduced a type of muscular dystrophy...
GOSH would help us understand
But as parents how could this be?
It turns out all were wrong,
Because hidden in the old MRI,
Was a shape no one had looked at
But could easily identify,
That he had a hidden genetic disease,
Rare and at the time hard to test.
And from then on at 4 years old,
We lived with the gift tag JS.
It effects fine and gross motor skills,
So balance and obviously walking.
It made heating yourself really tricky,
And of course hindered you when talking.
But this despite heavy broken hearts,
And tears that could fill an Olympic pool,
Truly after his ‘can do’ mindset,
Has really meant fuck all.
Because today my friends at 12 years old,
He did something we never thought we’d say...
This wobbly, rare amazing human...
Ran his first 5k!!!!
And all the tissues and physio,
wheelchairs, walkers and splints,
Mean nothing after seeing his eyes,
Holding a medal with awe and sparkly glint.
He achieved the near impossible,
And to run it by his side.
Fills my heart with hope and love,
And I am bursting with sheer motherly pride.
