On Kaleb

By 27th July 2018 No Comments

I’ve been silent this last little while because this is hard. I held myself back because I’m not sure exactly how to post about this. It feels raw and hard, and unbelievable. It feels too big, too wrong.

Kaleb, beautiful beautiful Kaleb, a 4 year old with NKH died.





I’ve spent forever looking at my cursor blink. Again, there are no words. This is too big for a Facebook blog post, where I post a picture and I’m sorry and I say something blithe about wings and NKH and encourage you to donate to research. Kaleb deserves more than that. Justine, his Mum, deserves more than that.

But the truth is, I’m grieving because I felt an affinity with Justine and Kaleb. Justine sent me funny Māori videos and would send encouraging words about Mikaere and I watched Kaleb from afar, loving on him from the other side of the world because he shares the c.395 mutation with Mikaere. I’ve never met them, I’ve never held Kaleb or hugged Justine. They live in Australia. And yet my heart is broken. I feel fragile and time has stilled and I can’t grasp the enormity of how Kaleb is not here, and how that feeds into the complexity of one day Mikaere will also not be here and I just… I don’t know how to face that.

And even worse, is that I know Justine and her family are facing that. Right now; and if it’s huge and unwieldy for me, their grief must be overwhelming. I think of Charlotte, who lives near them and how her grief must be heart-stoppingly raw too.

I think about that statue, with the grief and the insides all missing. I think about how my chest is getting pieces knocked out, how I’m feeling these deaths. There have been so many, and there will be so many more. I think about how grateful I am that I can hug Kai, that he’s here and how fearful I am for the day he’s not.

I think it’s mighty hard how grief and death are not talked about more frequently. That I live in the UK with their stiff upper lip-ness and “feelings, we don’t have feelings” kind of mentality and how do I navigate that when my life is perpetual grief and death? Would this life of death after death be easier to manage if we as a society had a healthier approach to acknowledging the hard feelings around grief? If we could talk about it with someone saying they’re sorry, or ‘let me know if I can help’ or ‘I can’t even imagine’ or ‘You’re so strong, I could never do what you do’ (shut up with your platitudes, they’re terrible). I’d like to be able to talk about grief and feel the things and be uncomfortable for a second because I’m sad because I hurt for this sweet little boy. I’d like to feel this grief without someone trying to fix it, or make it better.

I think that’s another conversation for another day because right now I don’t have the right words for this, I can’t explain the depth or the unwielding nature of grief I have for Kaleb. Of the fear I have for the day it’s Mikaere. I don’t have words. There are no words.

Grief. Anger and Rage and Disbelief. Disassociation. Tears. I just, no. Those little words aren’t enough. There is no relief or respite here.

Kaleb, you sweet sweet little boy. Fly high. You are so loved and will be fiercely missed.


If you’d like to help, you can contribute to Kaleb’s funeral costs, here: gofundme.com/kalebsfuneralcosts


NKH children I want to remember:

July 2018 – Kaleb Donaldson (4 years old)
July 2018 – Neeraj Ks (6 and a half months old)
March 2018 – Halle-Mae Arbuckle (17 months old)
Feb 2018 – Mayanak (4 years old)

(I had to stop myself at 2018. This list is already too heartbreaking).

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