It’s taken me four months to post this. I don’t know how to talk about grief. I don’t know what to feel, or what’s appropriate. Is there an appropriate way to grieve? A beautiful baby boy has gained his angel wings. He didn’t have NKH, the underlying cause of his disability wasn’t diagnosed. But he was part of our special needs playgroup. He was in our Monday morning gang.
I feel so all over the place. In the beginning, I cried endlessly for this small sweet boy. But I felt out of sorts, grieving, because I also feel like I’m so far removed from their family, because it’s just a playgroup, but honestly I’m devastated. For him and his family. Is it inappropriate that I feel an inordinate amount of grief for him? Is it even inordinate?
I cry for us, too. Because I feel like, despite my best efforts, I’m now constantly looking out for signs that Mikaere is on the precipice of an acute deterioration. For the longest time, I felt that genuinely he wouldn’t pass, that all the doctors were wrong and he’d have years ahead of him. That the ‘terminal’ part of his disorder was just a label, but not really one that applied to Mikaere. But now the sweetest little boy who should be here and fine is not. And the word ‘terminal’ as it applies to Mikaere has taken on a new, scarily finite meaning.
I was unprepared for the grief I feel. The shock of it. It feels messy and all over the place and the big overarching and devastating truth is one day it will be us. It colours my grief, which perhaps is why even the merest thought causes a moment of tears.
I’m so overwhelmingly filled with compassion for this little family. But I don’t have words and I refuse to say the platitudes. I don’t want to add to their grief, so I grieve privately. And then I feel like my grief must be minuscule compared to theirs (which just seems unimaginable and huge and so unfair) and should I even be feeling this way considering how tenuous our link? A link which I’m absolutely gutted will be no more, our after group catch-ups will be done now.
Grief is messy and I feel like I’m continuously finding new depths in what I feel about death and terminal disorders. I’m all over the place. Everything feels huge and bitsy at the same time. Like I’m trying to fit the uncertainty ahead for us and the unfair and too early deaths and all of the it-wasn’t-meant-to-be-this-ways together but the puzzle pieces don’t fit, so it’s all jagged and confusing and what do I do with all these feelings I have?
I spend hours thinking about the nature of grief. Of disbelief and how when you think you’re okay it smacks you in the face. Of how our therapist talks about snakes and ladders and shock. How you can’t know, hour to hour day to day how you feel (will you go up a ladder? Down a snake?). How I read somewhere that your grief doesn’t diminish with time. It’s that your life grows as time passes and it becomes easier to manage. I wonder how we’re meant to grow as people when our live distils down to our special needs baby and his needs. Our world revolves around Kai? How do we outgrow that? How are people meant to grieve and grow?
I sometimes think about that Frank Turner Song, Long Live the Queen. The line goes “We live to dance another day, it’s just now we have to dance for one more of us.” and I think how I’d want to live extra for everything that Kai couldn’t. And then I think back to what our therapist said, about living in the moment, enjoying the moment. Acknowledging where we are but also not denying ourselves fun and happiness right now. Choose joy, she said. I think about how hard it is to enjoy the moment when your future is so uncertain.
A friend told me once that something more than momentary happiness is intertwined quite heavily with three things, are you safe? Are you connected? Are you heading towards a purpose?
It’s hard to apply that to the special needs life, because my family isn’t safe (with a terminal disorder, not really), we’re constantly trying to manage the giant span between those with neurotypical children (the life we expected to live) and the highly medicalised special needs life, and we’re heavily isolated in the world of medical everything, and my purpose for anything other than Mikaere switched off the moment he was born, and as a special needs Mum my purpose only lasts as long as Mikaere is with us.
So, enjoying the moment feels like we’re trying to cling to the good the best we can while we wrangle with the idea that the larger building blocks of more substantial, satisfying happiness is generally denied to us.
My thoughts are all over the place, I keep jumping from one metaphor to the next, as I try make sense of it all.
Really the special needs life is utter shit for all involved. I feel like enjoying the moment is to accept the shit, to accept that we’re headed for heartache, and I can’t do that. We’re essentially struggling with a life of grief and uncertainty and hardship and I don’t know how to feel about that. I just don’t. Instead I’m desperately trying to make time for the small moments, the moments with Mikaere where he’s feeling joy. I feel like I’m trying desperately to enjoy every moment with him, but it’s hard to relax when I’m so worried.
I feel like I’ve been thrown into this whirlpool of grief and terminal disorders and it’s overwhelming. But when I distill it down, mostly it’s been a time where I think it’s beyond horrid this sweet little boy gained his wings. And I’m so sad for his family, so upset at the loss for everyone who knew him. I hope he’s at peace. I wish his family peace and relief in the face of profound grief.
Fly high Rauirí. You were well loved and you’ll be fiercely missed by so many. You had a huge impact on our world.
(Even saying that doesn’t feel enough to convey the emotions I have for this whole situation. There are no words to convey the complexity of this kind of grief).
Fourth months on I still feel as strongly as I did when I wrote this. But the upside is that I still see his Mum and I still remember Rauirí on a regular basis. I think of him most days. Grief is a multi-faceted crazy thing, and we live within it. The special needs life is such a bizarre life to live. If you’d like to donate, Rauirí’s Dad was raising funds for Small Steps with an epic bike ride with his work here or the family asked for donations to Shooting Star Chase, Rauirí’s hospice.