On feeding into the world of pretend

By 22nd October 2018 No Comments

I talk a lot about the ‘what if’ daydream in my head.  The ‘what if Mikaere never had NKH’ daydream.  I think goes hand in hand with grief, with loss. When you grieve something has happened that you didn’t want to, the flip side is that there was another option, another path, another something that you expected/hoped for/wanted. For us, obviously, it’s that Mikaere didn’t have NKH. That he was neurotypical. That he didn’t have two little missense mutations in one tiny gene.

Daydreaming about what it would be like if Mikaere was neurotypical is a dangerous, dangerous past time. It’s like a sink hole, so I shy away from it. At the same time, I also want to confront what Mikaere is not – I want to rip that band aid off so that it doesn’t hurt so much the next time I’m faced with the gap. So that the developmental gap that’s widening by the day isn’t so unexpectedly large that it’s crippling.

So I straddle the line between hanging out with kids that are Mikaere’s age (thanks to our wonderful NCT friends and their gorgeous babes), the grief that he’s not developmentally where they are and imagining what it would be like.

I’ve noticed recently that when I’m having a hard day, when we have back to back appointments or Mikaere is projectile vomiting everything or the seizures are uncontrollable – I have a bad habit of leaning towards the daydream. If I’m writing posts, I’ll post the photo where Mikaere looks more neurotypical. That if you weren’t here behind the camera you wouldn’t even know. I like the photos where Mikaere looks neurotypical best.

There’s one photo I love. Friends of ours have a son that was born on the same day as Mikaere and we went to visit. I lay Mikaere down on the floor where he’s most comfortable and T roamed, as a toddler who has independent mobility is want to do. But there was a moment where T lay down next to Mikaere and they both laughed.

I love that photo. I love that T lay down and was the sweetest little guy. That he wanted to do what Mikaere was doing, with zero knowledge of disability or difference or anything. I’ll forever love T for that tiny tiny moment.

But I realised I love that photo because it looks like, just for a minute, what a neurotypical life could be like with Mikaere. It feeds into the world of pretend, if you weren’t there – it looks like two boys playing together. The reality is they’re not. T had a wonderful, kind moment with Mikaere before he toddled off and Mikaere had a moment of awareness that T was there, but the truth is they didn’t play together.

It’s insane how to the very depth of all I am I wish they had been. How much I wish Mikaere was neurotypical. He’s not, I know. But I struggle with the cognitive dissonance of knowing he’s not, and the emotional intensity with which I wish it was otherwise.

It’s been almost two years of this cyclic grief. Over and over and over again I battle with this. Over and over again I’m faced with such grief that Mikaere suffers. And when he’s not suffering, when he’s happy and content and smiling at us and making small gains – that his life will never be as full or as varied as a neurotypical life.

That he will never love romantically, to know those butterfly feelings when you meet someone. He’ll never know what it’s like to travel independently, to delight in discovering a new place with new people living differently to you. He’ll never know what it’s like to work hard and be considered an expert at something, he’ll never know the satisfaction of when your peers recognise something you’ve achieved. He’ll never know what it’s like to snowboard, to pick a line, to make fresh tracks down a powder black run on a bluebird day (Its been a long time since I’ve been to the snow, but it remains one of the greatest joys I’ve ever had). He’ll never know what it’s like to kite surf, or boogie board or cook an amazing meal for the glory of it. He’ll never sit in a side restaurant in Japan eating the best oyster of his life, or jump off the back of boat into crystal clear waters in Croatia. He’ll never be able to introduce someone he loves to the things he loves. He’ll never adventure with a group of friends, getting up to mischief. He’ll never feel the satisfaction of creating something others can’t.

These are my life highlights. I’m devastated the highlights of his life will be smaller than mine. And I know that these are all just the highlights, and he’ll also never experience the downsides of a broken heart or the culture shock of being somewhere out of your depth or break a wrist taking a jump with a bad landing. But fuck, aren’t the highlights worth it?

And the hard thing, the thing I really struggle with – this grief is cyclic. It’s never ending. For as long as Mikaere lives – and past that, I suspect for as long as I live this is something I’m going to carry. This big dark grief that my child will never have the opportunities I did, that he’ll not live a live as full as others and he’ll forever be disabled.

I know for certain it’s this grief that pushes me to fundraise. That pushes me to figure out the next thing I can do to raise more money for NKH Research. That this big, dark stupid grief fires that ‘do something about it’ tick I have. And so I push and I design and I build websites and read research papers and oh god, the whole time I’m furiously wishing my son wasn’t disabled.

He is though. So onwards we go.

PS – if you want to donate, as always, we’re fundraising at justgiving.com/team-mikaere. All funds go to Prof. Nick Greene, who is researching a cure for NKH.

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