What we’re up to… November 06, 2024 at 10:00AM

On this day 06.11.2016. Oh my days. Eight years ago I was still trying really hard to pretend like this was all one massive mistake and our baby was fine (let’s just forget about the previous 20 days like they hadn’t happened). I hoped that any damage that had been done was minimal, and that any further NKH symptoms might not show themselves, and if they did maybe they’d be mild and our boy would be fine? Like his incredibly rare fucked up glycine issue would just disappear, maybe?��Except that then we had a conversation with Nurse Lynn, the palliative care nurse. Because NKH is life limiting diagnosis and as part of our go-home plan we had to have a real plan and not just one that was us pretending all was fine.

Because we didn’t know how long he would live (and no one gave us hope that we might have years). We didn’t know how long before we’d see symptoms (only weeks, so they were right to have a plan in place). ��We talked about Hospice and cold rooms and resuscitation and choice. We talked about notifying A&E’s and who to call when symptoms flared.��Eight years on and I feel like sure, this is standard and no big deal. But at the time it was horrific to think my beautiful baby might die.

It’s still horrific to think that. To know that. To have it actually happen. My heart hurts. We had eight years, thank all the powers that be. I wish we’d had more. I wish he hadn’t ever had NKH. I wish NKH wasn’t even a thing.

(I look at these photos and I can’t help but think he was beautiful. I just really want to scoop him up and hug him. He was so loved. Memories aren’t enough. My heart hurts my heart hurts my heart hurts my heart hurts my heart hurts).

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