Since having the MPS diagnosis I’ve noticed how the little things take on so much more significance.
Driving past our local hospital always gives me a twinge of anxiety even though we hardly go there at the moment. I over-analyze people’s reactions. I watch out for any new symptoms intently; is this something that could be a problem?
So this morning he still had a cold – should we go to Manchester? We did. And part way through the ERT his temperature went up to 38.6 degrees, so the infusion had to be stopped. Not in itself a disaster, but it has repercussions – longer until we can start having treatments at home, more trips to hospital.
But it works the other way too. Yesterday, when Pudding said ‘Me!’ to let me know that it was his turn to sit on my knee I couldn’t have been prouder. When he is watching TV and reaches out to stroke his brother’s hair my smile could fill the whole room. And when my poorly boy still says thank you (‘Dyu dyu’) before starting to drink the milk he’s been demanding, I want to hug him till the world ends.
I’m learning to appreciate the little things more. Instead of getting frustrated about what we couldn’t do as a family or worrying about Pudding’s abilities, I’m letting go. I’m loving lazier mornings at the weekend, tumbling together on the bed, enjoying my family for what they are. Little things can be treasures as well as minefields.