Evelyn

Some days I wake up and I’m sure everything is going to be terrible. Plagues of locusts; hordes of zombies; houses imploding – that kind of terrible. Those mornings are the easiest in a way, because when everything fails to go wrong then I can be pleasantly surprised. I’ll look around and realise that I’ve drunk an entire cup of tea before it went cold and my toast is still warm; that the garden is still intact and everyone under my watch is still alive and realise that maybe it’s all going to be okay.

Other days, I’m wrapped in the warm cotton wool of certainty. Everything is going to be fine. Of course it is. Nothing worse than spilled milk and cereal on the floor is going to happen and we’ll all make it to bedtime happy and healthy.

And then there are the days that crack like eggshells, going from everything is going to be fine to holy fuck, nothing is ever going to be the same again.

I’m talking about Evelyn of course. I’m always talking about Evelyn lately. All I ever fucking talk about is this baby and whether her issues will resolve and what those issues are and how we can help.

I get smacked in the face sometimes by her issues, because it’s easy to forget, wrapped in this warm cotton wool, that everything is not okay and that our future is not certain. It’s easy to forget that she is six months old [oh god oh god, she’s six months old and look at her, will someone just fucking LOOK AT HER and tell me with their magic crystal ball what our fucking future is like please] and that she is not progressing as normally as we’d all like.

Sure, she’s not missing everything yet, but she’s not rolling over anymore and so that milestone doesn’t count because it’s not something she added to her repertoire. She’s not babbling. She’s not using both her hands effectively. She’s barely using her right hand at all. She only manages to put things in her mouth 30% of the time. Her right leg kicks repeatedly. She has very little control over her body.

And yes, I know that the optimists in the audience will point out that at least she is doing some things, some of the time. Trust me, I know how to count my blessings here. I also watch her and worry and it’s a hard worry to push down, because I mention small things she’s doing to her Paediatrician [her tongue trembles sometimes, and not in a feeding flutter, but a tremor] and he looks worried, but also pleased that it doesn’t happen all of the time, but still, he was worried and her tongue still trembles and I think it’s getting worse, but who knows? I spend so much time just WATCHING this baby that I don’t even know what is important anymore. Her desire to be a starfish [jerk all limbs outwards, arch back and screech because that is NOT what you wanted your body to do] or her twitching while she’s asleep [non-epileptic paroxysmal episodes, that look like complex partial seizures] or her jerky movements or or or or….

It’s just, enough already. I need a crystal ball and to stop being smacked in the face by the possibility that none of this will be okay.

I mean sure, it might all be perfect in six months, but you’ve got to give my brain props for showing me that it might just get a whole lot worse.

Thanks brain. I couldn’t do this without you.

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