During Jubie’s speech, at the recent Sugarplum Dinner, she included an Ode that she had written during one of the very long and lonely nights whilst looking after her daughter Aliena.
An Ode To Type 1
An angry and cruel beast you crept into our lives
Slowly manifesting yourself as a hideous surprise
An evil curse we just can’t shake
Leaving a trail of devastation in your wake
We laugh, we cry, we constantly ask ourselves the question why?
A rollercoaster of highs and lows over the years
With more days than not ending in tears.
Sweets, chocolate and biscuits are banned,
The doing of your very own hand
The same packed lunch every day at school
Whilst everyone tucks into pudding around her,
How can you be so cruel?
Even with constant monitoring perfect results can’t be guaranteed
Counting every single carb as you seem to watch on with glee
So many other factors can turn things awry
However diligent we are and however hard we try.
Night after night you make me want to scream
Waking our precious child from her sweet deep dreams
I walk down the hallway in silence so deep
Keeping a constant watch over her as she sleeps
I hold her hand tightly fingers so small
Constantly questioning why you came to call
I watch her breathing so peaceful and warm
No evidence of the forces inside fighting the constant storm.
Will we ever be free of injections and blood testing
I sit and wonder as I watch her resting
The beep of the meter breaks the silence of the night
A small drop of blood tells me if everything’s alright.
The seconds count down to the final display
I wait with baited breath, knowing the repercussions from it will say
My heart sinks as I see the number is low
Another test done, but a lifetime more to go,
I try to wake her and force feed glucose
How long until she is out of the danger zone who knows
Time passes by, while I wait for the number to rise
And I sit in the darkness and quietly cry.
How can you do this to someone so small?
As strong and as brave she can be,
She will always be my baby most of all.
But I have to stay strong and for her I will fight,
And we will take you on with all our might.
We are teaching her to master and conquer this foe
You will not dare stop her, I have her promised her so.
So don’t for one minute think you’ve won
This battle has only just begun.
Your time is up type 1, your time is now
The curtain is falling, and you must take your final bow.
So know this, little stars, we will fight until the end
And on that you really can depend
With all the money that is going to be raised,
Thousands of childhoods will be saved
And the time is getting closer when you won’t have to be quite so brave.
Written by Jubie Wigan