#teammikaere

On the day after Mothers Day

By 11th March 2024 July 28th, 2026 No Comments

I was going to post these yesterday, on Mothers Day, for the boy who taught me so much about being a Mama (๐Ÿ’›๐Ÿ™๐Ÿ) but that other post about the medical life being all encompassing and holding on to what makes you you outside your life as a parent came out instead.

I think it holds true, still. Across all these years with Mikaere weโ€™ve known he was going to be disabled, and that the world was less likely to accommodate him as much as we wanted it to. And that means dancing and adventuring and doing the ridiculous things for the both of us, instead of just me.

I feel like for all the things Mikaere can do, we support him, and for all the things he canโ€™t, we make happen, and do twice as enthusiastically on his behalf.

So this year, as I turn 40, Iโ€™m going to enthusiastically hurl myself out of a plane (read: hold on tight with my eyes closed to the tandem skydiving instructor) for my boy. To raise money for NKH Research (and because Sam did it, so I donโ€™t see why I canโ€™t too).

Sponsor me? Wish me a happy birthday with a donation? https://www.justgiving.com/page/elly-is-skydiving #linkInBio

#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit#cure4nkh#fundraising#chairtySkyDive#teamMikaere#theMikaereFoundation#kiwisCanFly#nkhResearch

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