October is Rett syndrome awareness month and I need for more people to know and understand and fight with me against this devastating condition. I need people to remember my beautiful girl, my wonderful joy giving daughter who my heart aches for. I need to celebrate her life and the wonderful nine and a half years I had with her, whilst also praying desperately for a cure for those suffering with this condition right now.
I need people to realise you cannot walk away even when your heart is broken. You have to, no you need to fight, fight for every child, fight for the hearts of every parent.
My arms are empty due to Rett Syndrome, in Livvy’s memory I won’t give up until there are #nomoreemptyarms.
I woke last night screaming, somehow my sleep had become a time machine and I was there again in the hospital begging my child to wake. Desperate to see her chest rise again, begging the Lord to save her.
How can 12 years just disappear in a moment?
Yet I know in grief, time is only my enemy.
I miss my girlie so much, how I wish I could just hold her in my arms once more, to just breathe in the sweet smell of her hair.
Grief is a complex devil, playing games with your heart moment by moment, memory by memory.
Does it ever end?
Only with eternity I guess.
Oh I never knew the heart could survive such pain. The crushing weight becoming bearable against my wishes.
I don’t want to sleep again, I had to leave her once I’m not sure I could do it again.
Why does your memory invade your dreams?
Is there nowhere free from grief?
I couldn’t pretend for a while, I could not create the facade of being ok in those darkness hours. So I let the tears fall and as my whole soul hiccuped through my body I allowed myself to miss her.
I let the memories swarm my mind like a tapestry of bees as they create their honey, I created my moments again. I held her in my arms, I heard her sweet giggle of mischief on the symphony of the night and I breathed her in deep and I sobbed.
I still don’t understand why I had to lose her, why Rett Syndrome had to win the battle for her life. Yet I know it wasn’t for the lack of love. My Livvy, their Livvy, your Livvy was loved with the depths of so many hearts.
If love could have saved her life she would be here.
No the question still stands unanswered, our hearts still forever broken.
I couldn’t breathe anymore the tears had tore my soul and I did fall into an exhausted sleep.
I wake still desperate to hold my daughter once again.
The new day begins,
I trust, I breathe and I hope.
Until we meet again my beautiful girl, until.
Joining in again with five minute Friday, set your timer for five minutes and write.