I went out for a meal on Monday with a lovely friend. So nice to get out and have a good chat. She mentioned something about the difficulty of diagnosis and how you need to get to that stage where it isn’t the first thing you think about when you wake up and the last thing at night. Very true and insightful.
It made me realise how far we have come since those earliest dark days. Yes, I do obsess over it all more than I possibly should. And some days anxiety settles in my stomach for no discernible reason. But often life just continues.
The calendar is marked out with the usual routine of preschool, gym club and weekly ERT (enzyme infusions). Next week we will be back in Manchester for the next dose of trial medicine. Even that feels like it will be fairly routine now; we know the ward well, and what to expect from the day there.
We regularly have support from some wonderful people – our Healthcare at Home nurses, staff at preschool, our portage worker to name but a few – and we should be accessing some respite hours soon. Hopefully that will mean that time to concentrate on Twiglet’s needs will become part of our routine too.
We’re in that strange in-between-land; Pudding has a serious genetic condition but he is not a sick child. Spring is coming and I have so much to be grateful for.