The Voice

All bound for Lou Lou Land by All bound for Lou Lou Land Additional Needs

All bound for Lou Lou Land

All bound for Lou Lou Land

It’s my daughter’s. And no, not my eldest daughter’s singing voice; although she does have a lovely tone to it.

It’s Lou Lou’s… And she wouldn’t even have to sing.

Just a word - a single word, any word at all.

Of course, the word “Mummy” would have me leaping from my chair Will-I-am style.

But my little Lou Lou, any word will do.

In the dark of night when she wriggles and squirms during her nocturnal wakings; it would be useful if she could tell me if she was hungry, if she was in pain or maybe just wanting cuddles or a play.

In the middle of a mealtime when she is still opening her mouth, as if for more, yet looking increasingly uncomfortable and throwing her arms around; it would be helpful to know if she wants more, has indigestion or if we need to speed up or slow down.

On the rare occasions that she cries; is she in pain or tired or bored?

When she chews her hands for the umpteenth time that day; is she frustrated or anxious or teething?

When she smiles or giggles, it would be amazing if she could share the joke with us. Instead we all gather round and laugh with her.

We don’t really need to know what has amused her. We just love to hear it. I’ve accepted that she will probably never walk. For some reason that comes easier than this.

I still can’t accept that I may never hear her say Mummy or Daddy or call her sister’s name.

She may never stamp her foot and shout “no!”, may never ask me “why?” or issue that familiar toddler refrain of “it’s not fair!”

But that is why when the emotion subsides and the whys? and why nots? and its not fairs (yes, I sometimes stamp my foot too!) remain unanswered, we have to be her voice.

I need to stand up and be counted, to nag and argue and many other things that don’t come naturally to me, all in order to get the best treatment for her.

If only she could whisper her message to the world to me, I would shout it from the rooftops.


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