This guy. So, I think we’re (touch wood) out of the last seizure war and into a place of relative calm (I say relative calm because he’s not seizure free, but it’s not the 20+ episodes with weird new presentations we were seeing before). We did lots to bring him out (mainly med adjustments for weight, and opened a new bottle of possibly oxidised oil), but as always its slow and takes time to kick in, and the recovery back to baseline is heartbreakingly slow. But there have been more smiles, and more awareness and more vocalisations (this kid has opinions!)
But. We’re still in this place. 25 weeks of isolation. Today is day 175. We’re still sleep deprived (getting up at 3am is not any easier 5 months later) and I still have all the anxiety about what’s safe for us.
Here’s what we know: the risk of Mikaere getting covid19 is worst case scenario (aaand we live the palliative care life, so worst case has a different, very real meaning for us). We know that covid is still rife outside our flat. Over 1k of people in the UK tested positive YESTERDAY. Last week over 9000 people died (400+ more than the week before).
Just, not fully knowing what needs to happen for us to be able to be safe outside is really doing my head in, because the honest truth is that it may never be safe. And if it’s never safe, then it becomes a balancing act between quality of life and the possible quality of death.
And the never leaving the apartment isn’t the kind of quality of life we want for Mikaere… but, the thought of taking the risk and going out, with the very real risk he might suffer unnecessarily/die is paralysing, you know?
I don’t know how to align those two things, and I’m all over the place about it. How do we provide the best possible life for Mikaere, considering the dangers? I’m struggling so hard, and I don’t have an answer.
I suspect this is even more difficult because in our little bubble we’re sleep deprived and without a wider perspective and without all our usual support (from our teams, therapists, groups, friends). It feels like we’re trying to make safety life/death decisions in the dark.
So. What would you do? Would you go out if the risk was death?