We’re currently back in a good time. We’ve had a few seizure free days, and Kai has been very vocal, very awake and aware and quite content. Apart from the teeth that are coming through – we’re in a good time. I’m just going to take a moment and say woah buddy. The number of good periods we’ve had can be counted on one hand. So to be in one, it blows my mind a little.
However, the flipside with good times is that we haven’t had many of them, and I’m suspicious. See, I can manage the bad times. I know how to pull up my big girl pants and do whatever it is that we need to get Kai sorted. I’m good at the doing. I’m comfortable with managing the resources and talking to our medical team and organising our massive calendar of therapists.
This quietly waiting for the next dip, the next drama, the next thing… it’s tense. It makes it difficult to enjoy the good times, because I’m constantly watching out for something… anything. For a stretch that rolls into a seizure. For less awake time than usual. For pain grizzles instead of regular just because grizzles. I’m watching, and waiting, and I don’t trust for a moment that this good moment will be everlasting. NKH isn’t that kind to us.
In saying that, we’re really grateful for this little patch of stable and happy. Things seem more manageable and everyone is sleeping and suddenly all of the basics of life (showering! socialising! shopping! Visiting a cafe for a coffee! Taking long walks!) seem possible, even achievable. We don’t often get stable and happy, so I’m trying my best to soak it up and enjoy it.
Fingers crossed it lasts.
