Have I ever said? I loathe MPS with a passion. I loathe it with every millimetre of my body, every breath, every beat of my heart. I loathe it and yet am powerless to do anything about it. If it was a person I could tell them how much I hate them (though I probably wouldn’t). As it is, I just have to put up with anything it throws at us.
I have to watch from a distance as people I have become friends with struggle through similar problems. Others face much worse as their children lose skills, get more difficult to manage and then, heartbreakingly, become more compliant as they decline further. I hate it. I hate it. I hate it.
I know this happens to me every so often; just as I think things are going along just fine something hits me again. After Pudding’s third dose of trial meds this week, he woke up from his nap and started crying. He couldn’t be comforted with tv or food, both of which are normally sure-fire winners, so of course we started thinking it could be a reaction to the enzyme.
He fought like mad as we tried to get some paracetamol and antihistamine in him. He turned to me and cried, ‘Mummy!’ as if I could do something to stop this happening. And I should be able to, shouldn’t I? I’m his mother and that’s what we’re there for, to protect them from harm and stop the nasty things happening. But I can’t, and in that moment I felt so helpless and overwhelmed.
Soon after that he vomited and he was sick another few times during the night – not much fun when you’re alone in a hotel room with a screaming child. Given the reactions he has had previously after his weekly infusions it wasn’t really a great surprise. So next time we’ll rethink the pre-meds he gets to try and avoid it happening again.
It wasn’t really a big issue – reactions like this do happen, they can be managed and trying to second guess whether they will worsen is pointless. But I think it highlighted something for me. I am no longer in the emotional turmoil following diagnosis, but the anxiety still never completely disappears, even if it is hidden under a veneer of ‘normal’. So when something does come up I probably react more than the situation warrants. That can be MPS-related or another matter entirely, hence shouting at Twiglet if he’s pushed the wrong button for me.
I guess the only thing I can do is try to recognise this, and accept that it will keep on happening. I am not a superhero, and I am allowed to cry.
(Looking on the bright side, I managed to avoid getting any vomit on my nice fluffy cardigan. Maybe I do have some superpowers after all!)