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#teammikaere

On grief and hearts

By 15th January 2020 January 16th, 2020 No Comments

I think it’s pretty clear that I took a break from posting over the last few months or so, Mondays post being the first one in a while. Part of it was there is so much shallow influencer content flooding my social feeds. Highlight reels, objectifying consumerism or cute photos of kids in exchange for more more likes and more followers and free gifts with hastag-ad. It was the season, right? Matching pjs all round?

Truthfully – I really struggle with that kind of privilege. It’s difficult to watch when kids we know are dying (literally, in intensive care and funerals). I needed the social media break, because when you’re faced with literal death, when there is child after child who gains their angel wings I can’t care about someone else’s need for vanity metrics.

Side note: if a grid with a beautiful aesthetic and #sparkJoy hashtags are your jam, that’s cool and I’m happy for you. Different courses for horses and what not. There is no justifications or apologies to anyone required, you do you.

But for me? When faced with frequent death and grief, I want to see authenticity, and real, genuine moments that connect. Things that are meaningful, and matter and bring *real* joy (and not someone exploiting their kids for free kit with shallow, carefree #blessed captions. There’s a difference between reading about a child reach a milestone they’ve been working towards for months and months and months, and a posed kid atop someones shoulders with a #love hashtag).

I recognise that I’m in my own unique little place though. The grief has been relentless and never ending. It could be that we live exposed to the world of paediatric palliative care. That the people who bring us the most comfort are the people in our tribe. The people who live our lives, who understand exactly the kind of emotional hardship we’re in.

They’re also the people with children who are destined to gain their wings early. And as much as all our professionals keep suggesting we ‘step back’, I don’t think they understand. We can’t stop going to therapy, to playgroups, to hospital waiting rooms or to hospice. There is no ‘stepping back’ from our life. Hey ho. We take the love and the support and the connection from people who get it, and the price is that we love their kids, and we’re there, in shared grief when they pass. And they’ll be there for us too, one day. When it’s our turn.

There’s this thing I do now. I ask how people’s hearts are. It’s an invitation to share their emotional state, and it’s an offbeat enough question that you don’t get ‘fine/okay’ platitudes as a response. And despite what our professionals suggest, I do genuinely want to know how people are. I want to know if they’re happy, I want to know if they’re struggling, I want to know how they are. Their day to day truths, if they’re open to sharing.

Partly it’s because I love them, but a lot of is because people have stopped talking to me about the hard things in their lives. Or the positive things. Their kids first day at nursery, or a milestone they’ve hit People don’t feel like they can share because their joys might be insensitive, or complain because they compare their hardship to mine and as a perspective it sometimes trivialises their hardships. But just because my life is hard doesn’t change their hardships, or their difficulty or their joy.

And when people stop sharing their life with me, suddenly everyone I know has lovely picture perfect, shallow lives that are just fine. Everyone is living their most perfect highlight reels. Which is great, but without that camaraderie that happens when people share their reality with you, I’m isolated and alone without any real genuine interaction and connection.

At Mikaere’s playgroup, after we sing the hello song, they encourage him to hit a switch that plays a recorded message. The message that comes out is always “I’m fine” – bright and cheery and so awfully inauthentic. And I hear that, when I ask someone how they are. They always say ‘I’m fine’ with that awful and fake tone. If someone is diverting conversation, that’s okay, I would never challenge it (because respecting boundaries is important!) but I like conversation that forms connection. It doesn’t have to be deep and meaningful, but I’d like it to at least be real.

Part of it also is that if I’m asking about someone else, I’m not talking about my life, or Mikaere’s health difficulties (if we get into that, no matter how matter-of-fact I say it, our day to day is horrific and out of the ordinary. Social etiquette requires the only polite response is to acknowledge it and express sadness, which usually comes with pity and discomfort. At that point I’m comforting them. That’s not a nice social connection, but it’s one I’m playing out over and over and over again).

Talking about their heart, their joys and fears and the small things that they care about, it makes me feel less… alone, less banished to the special needs world.

So. How’s your heart?

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