What we’re up to… May 01, 2024 at 02:16PM

By 1st May 2024 No Comments

Hi. First, thank you for all the love and messages. Mikaere has turned a corner and is doing okay, compared to how things were. I want to apologise: I posted a somewhat emotional and wildly vulnerable post yesterday, and I shouldn’t have (sorry). Not to you guys, but to our boy. He deserves more dignity than a terrified, sleep deprived mama sharing his private medical moments on Instagram (whoops).

Mikaere had a very, very hard day yesterday, and I had a social schedule that I was trying to stick to (because #NKHAwarenessDay) and so let my feelings in the moment loose on Instagram. I scared a lot of people, so apologies (we were very scared, too). Thank you for all the love, and messages though.

Palliative life with NKH is coming up against that barrier that is the unimaginable loss, anticipating it, knowing it’s in your future and doing everything in your path to avoid the horror that is saying goodbye to your child. It’s having painful conversations with your medical team, it’s talking about quality of death as much as quality of life. It’s just… it’s hard. This level of grief and love, held concurrently is HARD.

Mikaere’s been transferred to hospice on a symptom stay and we’re hopeful Mikaere will continue on in his current trajectory and will be okay. Cross your fingers for us! Or even better, donate to NKH Awareness Day:

#medicallyfragile #nkhawareness #nkhcansuckit #disabilityLife #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #seizures #teammikaere #nkhAwarnessDay2024 #someoneFundACure #nkh #ifhnkh #metabolicdisorder #glycineencephalopathy #cureNeeded #disabledKid #disabled #disability #complexmedicalneeds from Instagram: https://instagr.am/p/C6bV1F-oiL9/

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