When he’s feeling well/had a good day for seizures/isn’t exhausted/isn’t overwhelmed.
And as I said it, my mind shot back in time to days when my boy would laugh and laugh and laugh at Mummy and Daddy being silly, or the fabulous moment (at around 3 am one morning when he was around 18 months old) when he discovered that farting was really, really funny.
Of all the things my boy has lost to the relentless seizures, his laugh and smile are the two that break me the most.
He DOES laugh and smile, recently as his VNS settings have been tweaked and the seizures are less frequent/severe he’s been smiling so much more and it makes my very soul sing to see it.
But my God, how much do I miss that mischievous giggle. I would happily cut off my own limbs if it would help my little boy to regain the skills that were so brutally ripped away from him.
I don’t think people actually realise how cruel epilepsy really is. He’s just a little boy, and he has already gone through so much.
Most days I am simply thankful that my little boy is alive, healthy (it’s all relative on this one) and still here with us, making our lives as full as they are.
But on occasion when something makes me stop and think for a moment it can get quite overwhelming.
Apologies to Ikea but I’m borrowing their phrase – not enough people take time to revel in the wonderful everyday; the smiles and giggles, hearing the children talking about their day at school, their friends... mostly taken as background noise, inevitable when you have children. And so much taken for granted.
My boys smile, when it does happen, lights up a room more brightly than the sun itself… and at that point the everyday truly is wonderful.
The improvements we’ve seen with the VNS has given us greater hope that those rare or lost skills can start to return and that we’ll hear our little boys gorgeous little laugh again some time soon.