Today we were lucky enough to spend some time with another NKH Family. This is Doms, his mama @eloiselovesherboys and his brother. Genuinely, I could have sat and chatted for ages – it’s SO nice to spend time with families who just get it, no drama, no apologies needed. When Mikaere had a few seizures or Doms coughed – there was no raised eyebrows or side looks, because their family is like our family. We understood, and were comfortable.
We were somewhere that was accessible for our boys, and Mikaere’s brother took a shine to Dom’s brother Hugo (who was very very sweet with our toddler) and it was just a really wonderful afternoon in the garden.
It was also nice to hang out with a family who is ahead of us, to be able to glimpse what our future might look like, maybe, if we’re lucky. To spend a joyous afternoon together, and to have hope like that. Often the NKH community is filled with grief and hardship, and this afternoon was a proper balm. I’m grateful, anyway, and glad we were able to make this afternoon happen 🙂
These two boys, hey? 💛🐝
#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit#nkhCommunity
PS – was not expecting this post to be a pregnancy announcement, so surprise! Mikaere’s getting a sibling later in the year 🙂
