The one about the shit train I’ve been riding…

Don’t expect a lot of positivity in this post.  It’s hard keeping your shit together at times, and sometimes even the most zen want to just say ‘Fuck it.’

For almost three years I’ve been keeping my head together about this whole situation with the monsters.  From diagnosis to delivery and now to development.  One hurdle after another, and to be honest, yes, I have glossed over a lot of the more serious nature of our situation and covered it with a lot of humour.   Why should I bore people with multiple stories of the same checks in hospitals, or frighten people with the horrible reality of having children born prematurely with relatively unknown conditions?

I’ve been keeping it together for a long  time, and took every new hurdle with some grace, some anger and a lot of learning.  I wanted to be a beacon of hope for others who, like us, were faced with some harsh realities, and some difficult decisions with a terrifying diagnosis.  I wanted to show people that you can face a devastating diagnosis use it to change the world.  I still hope to do that.

But this week, we were dealt with yet another slap in the face of the ongoing saga.  It wasn’t unexpected. But seeing the words on paper just really tore open old wounds.  Is this going to be the story of our lives? Defined by this condition that noone can give us expectations for? Are we going to live with this constant nagging feeling that we’ll never really shake the bonds of it?

Is this all the future holds - one envelope after another, bringing yet another slap in the face from TAPS/TTTS?

TAPS/TTTS has no celeb appeal. No royal or celebrity has glamorised it, so few people know what impact it has on the lives of those whom it affects.  It’s not ok to tell me that it’ll get better.  You don’t know that, because not even those researching it can tell us that.  They might look normal to you, but don’t dismiss the hours I’ve spent waiting in hospitals for specialists and doctors, the hours spent on therapies and research of our own.   Just because you can only see the positive effects of the time we have spent making our kids’ lives better, doesn’t mean that we don’t spend time at home crying over the areas where we feel like we’ve failed.

 I don’t understand why we were dealt this card.  I don’t understand why we get 2 steps forward, and then have to take a step or 2 backwards.  I would give everything to have things be normal.   I really, honestly want to scream sometimes when it feels like someone dismisses what we’ve been through with the statement – “But they look so normal/healthy!”.  They are healthy. By definition, they are normal.  But we still get handed cards from this shitty hand that send us backwards and into emotional wrecks.  The stark reality is that we have no idea what our long term prognosis is, and that scares the ever-loving shit out of us.  Yes, we focus on the positive, but this is a double edged sword that hangs over our necks constantly. And guess what? It sucks balls.  I once thought I’d experienced every emotion possible until we had the TAPS/TTTS diagnosis.  Then I realised that it was a very small spectrum that I really had had.

I don’t want this to come across as a “I need sympathy” post. It’s not. It’s venting a lot of anger and frustration about the shit train we’re on.  I don’t need virtual hugs, I don’t need a lot of “It’s going to be OK!”.  So far, it isn’t ok.  Three years of complete frustration and uncertainty cannot be undone with a virtual *hugz*. Don’t dismiss how I’m feeling by an idle comment.  I know others are riding the shit train too, but seriously, I rarely complain about this fucked up hand and it feels like I’m being dismissed when I talk about it – “Because they look normal”. Don’t tell me things are going to be fine because they look normal. That’s frustrating enough, because not even doctors can tell us that.  We don’t know why we were dealt this hand in life, we deal with a lot of shit that comes with our unexpected journey – telling us things are going to be fine doesn’t help.  Each envelope is a sting in the tail and sometimes a setback on our road.

 Thanks for reading – I know it’s not all sunshine and rainbows and humour like normal.  There’s a dark side to all this as well, and for now getting it out on paper is cathartic.  I don’t have a big point to this post either.  But please, just remember when you’re talking with someone who has had or has an ongoing issue that throws their life into turmoil, don’t dismiss their frustrations because it looks like everything is normal.  Sometimes it isn’t, so if they have chosen you to have a vent to, about it, listen, offer support and encourage them to talk openly.  You don’t know what they’re feeling on the inside, and telling them things are going to be fine sometimes feels like you’re dismissing them and their emotions. It’s hard enough for some people to open up and talk about things, and sometimes a good venting can help them heal.

2 Replies to “The one about the shit train I’ve been riding…”

  1. All I can say is, I know. I really know. and it sucks balls. and damn you for doing such a good job of making everything look normal, for doing such damn good job as a super parent with kids of an invisible illness. that’s what the world does, unintentionally. Mindlessly. Without thinking of what it means. They damn us with their good intentions, trying to make us feel better with “but they look so great!” and “it will get better”.
    so all I have left to say is, let it out. you have every right. it sucks balls.

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