What we’re up to… August 09, 2024 at 08:58AM

Mikaere is sick and it’s heartbreaking. I’m not going to share details because I think he deserves his privacy and dignity, but as a parent, being plunged into a new level of worry and wtf do I DO is awful. I feel like I’m constantly second guessing myself, do I give another dose of this? Or that? What will the consequences be, will it help, or will it not? Do I take him into A&E? He’s already been reviewed and we’ve spoken to all the teams… What would they do in A&E we can’t do at home? What information could they provide that would change the current course of treatment? What are the risks of going in? Would going help? Or would it hinder? Is my response, my decision making being affected by the trauma of past visits, and how do I make sure that any trauma is not effecting my decision making process?

Because this is hard, and gets harder as time goes on. At the heart of it, my boy is in pain and he’s suffering and I hate it, with every single ounce of my being. Worse is that having two other children who just shrug off the same thing, I can see the gap. I can see what NKH has stolen from us and I grieve for my boy. Still. Years and years and years on, it’s still so wildly devastating.

When he’s well and happy living with NKH in our family feels tolerable. It’s not ideal, it’s not what I’d choose, but it feels like we’re making the best of a very bad deal. On days like today when he’s suffering, it feels horrific. I feel helpless, and trying to make clear, rational decisions when he’s so poorly, when it’s all so unclear… it’s hard.

So, I’m here with him, watching him, trying to run through all the things we could do and wait for his presentation to guide me. I do what I always do when I’m struggling: raise money for research. I published another charity book (Where is the Purple Racing Car: French edition) and I’m reviewing the fundraising pack we’re building for the charity and I’ve applied for a handful of grants, and I’m halfway through a grant proposal for a partnership that might help and just… please. Can he please be well and happy? (He’s not well and happy and it makes me sick to my stomach).

NKH is awful. It’s awful it’s awful it’s awful. from Instagram: https://instagr.am/p/C-cQ48BI96n/