Today we went to a community event at Mikaere’s school – I say event, but it was a very low key walk around a local common (where we met a park ranger and his horse!) and then back to school for a BBQ, ice cream and sensory stories.
It was pretty great, in that we got to meet many people from Mikaere’s school, teachers, therapists, people on the parent governor board, but also just other families like ours. It was sweet, actually, and really helped normalise what our life is like. We’re not the only ones blending food or carrying around syringes and meds, trying to shove wheelchairs along gravel paths (gravel is the WORST). But mostly I’m grateful because it was the perfect level of entertainment for Mikaere. He was so happy to be out there, to be with people who talk to him (and don’t shy away), for the walk and being outside in the wind, for the sensory entertainment. It was pretty great, I’m glad we went.
It was also pretty great for Mikaere’s sibling, there were plenty of other siblings there who were happy to have him follow them about, but also just to expose him to others who have disabled siblings too. He’s not at an age where he cares, but it’s nice for him and us to see other families like ours 🙂
#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit
