I do it all the time: Calling my daughter a CF Warrior. Hash tagging BEATCF. Using words like fierce and fearless.
We use these words for the absolute right reasons.
We use them because we want our kids to feel powerful and strong. We want them to stand defiant in the face of the great dark danger that is Cystic Fibrosis. We want them to be superheroes, to be gods and goddesses, to be determined that nothing will knock them down. We want them to believe in themselves.
We don’t just want them to, we also need them to, because it also helps us to manage our own emotions.
Most of the time I think this is a good thing. We have to truly believe in our own power to harness the power of positivity, right?
But occasionally I question it. Because the problem with being in a fight or a war is that somebody wins, and somebody loses. If you lose the fight against this illness, or any other, does that mean that you didn’t fight hard enough? Does it mean that you weren’t brave enough? Does it mean that you were only part warrior? That you could have tried harder?
Of course not.
It means that illness was ahead of medicine.
But we don’t want to talk down our children’s efforts either. Because they are out there, every day, living lives that are much more difficult than we dreamed for them. And they are mind-blowing in their resilience, strength and acceptance.
So how do we tread the fine line between motivating them and pressurising them?
I’ve reflected on this a lot and I believe that for us, as parents, it’s about trying to unearth a motivating space, a type of ‘positive pressure’. This means offering mammoth encouragement and reassurance, teaching self-belief but also self-forgiveness. We need to make sure our children don’t feel like they’ve failed if they can’t in fact be superhuman every day of the week (I can barely be human every day of the week). We need to reassure them if they’re not achieving what they see others like them achieving.
Because being a warrior needs context. No two fights and no two warriors are the same.
One CF Warrior might break world records.
Another might prove everyone wrong by doing something they were told they never would.
Some days, it will take a warrior level of effort just to breathe.
Other days, being a true warrior will mean admitting that you need to go to hospital.
The best days are when being a warrior simply means being well enough to just do what everyone else takes for granted.
I think the word warrior means different things to different people at different times. A small feat can sometimes be the most challenging; the one that requires the most bravery.
All we can do as parents is be exactly what our children need us to be on any given day.
Some days we’ll need to be their Commanders, motivating them to rise to a challenge or recover from being wounded.
Some days we’ll need to be their personal armour, protecting them from a run of hard hits.
Some days we’ll need to be their jesters, helping them to find laughter when nothing seems remotely funny.
Some days, we just need to get out of their way and let them get on with it!
But every day, we need to be their safe place, reminding their brilliant selves just how lucky we are to have them in our lives.
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