My friend has always loved affirmations.
Mantras, messages, reminders - those positive notes you write on post-its and read out loud to yourself on a regular basis.
Stuck to the edges of her bathroom mirror would be ‘I am everything I am supposed to be right now’, or ‘I am at my best today’.
On her fridge door would be ‘I have the willpower to make my goals a reality’, or ‘I am beautiful, inside and out’.
You know the ones.
I couldn’t imagine looking myself in the eye, mouth full of toothpaste, and telling myself I’m wonderful with a straight face.
My friend swore that they made her feel empowered and were a great way to remind herself that positivity is a choice.
Fast-forward twenty-five years or so, and I find myself mumbling my own affirmation under my breath: It’s Just One Bad Day.
This might not sound particularly positive, but let me explain why it is.
We know that her scoliosis is likely to get worse.
We know that her ‘illness’ started with a period of regression, where she lost all of her hard-won skills, and the trauma of those early days have left their mark on me.
If I see Charlie slumping to one side in the swing, my heart starts racing.
If I notice that she’s having trouble sitting in her pool float, I can feel the panic starting up.
When she seems to have forgotten how to suck from a straw or roll over onto her stomach, or on nights when I notice she hasn’t moved around the bed at all in her sleep, my breath catches and I start to go to a very badscarybleakhorrible place.
Here’s the thing: I have to be vigilant.
It’s my job to notice, note, and report changes in Charlie’s wellbeing, her behaviour or abilities.
I try to apply common sense to these situations, but objectivity is hard to come by when your own children are involved.
I do try to remember, though, that Charlie has tough days like all of us.
She’s a little person with her own thoughts and feelings that she struggles to share, so I have to interpret where I can.
Sometimes, she’s just tired, feeling a bit ill, or just not in the mood.
And that’s where my oh-so-positive mantra comes into play.
I take a deep breath, kiss her little cheeks, and say:
Have you had to leave a venue early due to lack of suitable changing facilities?