Some days will be harder than anything you have ever experienced or imagined.
You are pushed to your absolute limit and then further still.
There is no let up, no time away, no opportunity to reflect.
You are in the midst of it all 24/7.
As a mother I feel huge guilt. Violet doesn’t experience life as Henry does.
Violet watches her brother sit, walk, run, talk and go about his life as most children do.
I watch Violet watching her brother with a broken heart and a desperate desire to somehow make it right.
They say that comparison is the thief of joy.
Yes it is. I feel I have a constant comparison slapping me round the face.
Stomping on my heart and then tearing it into pieces.
Days can feel as though they stretch out for all eternity, whether you are at home or in the Hospital.
Dystonia means that Violet is never still for more than a few seconds.
She has involuntary movements throughout her body constantly.
This is exhausting and so frustrating for her.
It has a direct effect on everything she does or wants to do.
When experiencing extremes in emotions or when Violet is unwell, her Dystonia becomes all consuming.
Her full body extensions are incredibly powerful.
It makes holding Violet a dangerous job, you will be hit repeatedly with thrashing arms and legs and head butted.
Violet needs comfort when experiencing these awful episodes and I worry how I will cope as she grows and these inevitably get worse.
Some days will be easier, you will embrace every positive experience and store the memory away to retrieve when you will so desperately need it.
Life can seem almost normal for brief moments and I savour those times of calm.
I feel pure joy watching their twin bond develop as they grow.
Their glances and beaming smiles that light up the room. Knowing that they miss each others presence and crave to be near each other.
The moments of beautiful interaction and play.
The absolute love they have for one another drowns our that sorrow I feel and replaces it with a warmth that feels like it envelopes my entire soul.