Some days I long to see you run off as if in flight, with the crowds of other children.
Some days I long to see you slurp up a drink noisily and blow bubbles through straws.
Some days I long to just go out for lunch with you and order something off the menu for you to eat: with pleasure. No syringes.
Some days I long to hear your voice join the little words you are learning.
Most days I feel at peace with how things are and focused on your abilities.
All days I feel so heartbreakingly proud of you (except maybe, when you are badgering me for Maisy Mouse DVD again).
And some days I feel bone-crushing guilt and sadness that I couldn't "fix" things for you.
That I can't wave a magic wand.
I feel angry we have to rely on so many people and are only adding to that team, to help you achieve what comes so naturally to other people.
When you cry during physio stretches, I am crying with you. I've just learnt to have invisible tears.
If I had a magic answer, I promise you I would have used it.
You are so good; so happy really. So full of beans, so scornful of fear.
So why do I feel so sad and guilty that I have somewhere failed you?
How is it possible to feel so grateful, thankful and elated and simultaneously so muddled, confused and aching for this life you never envisaged to go back to being hidden?