By Eduardo Reyes @edreyesjourno
Nothing changes in our routine. The countdown to our daughter’s operation can involve no break in the step of our lives. She cannot walk or talk, so we walk up the line – go over the top – at the same steady pace.
She wakes, we greet her – put on music or children’s TV – and put together her meds, in quantities of (descending): 60ml; 7ml; 5ml; 5ml; 4ml; 4ml; 2.5ml. Crushed or liquid.
Mornings of 87.5ml (and a water flush – she takes this through her gastrostomy – a ‘tummy tube’) all, currently, on the road to:
We change her, brush her teeth, dress her. New pad (she is 11 years old, but incontinent); long socks with leg splints over the top (her toes curl; her ankles are not straight); trousers and high-top shoes. She sometimes starts to cry at this point – or later. A vest, her back-brace; T-shirt; into her chair – brush her hair, she cries again – or not.
Each morning, we go in to her room not knowing if she’ll do it happy or not – but that is also the routine.
What happens now, whatever our feelings, or hers, at the point?
She starts her breakfast. Normally a still-point of reliability. 150ml of energy, cereal and fruit – missing out the mouth. We wait for her to digest. Then she can be moved.
When it was first called an ‘S-Curve’ this felt vaguely descriptive – we could see the hint of it. But in the last year, its typography has come to resemble the actual letter – its curve has ‘accelerated’. You can see it on an X-Ray. And with her back brace removed, her rib cage extends to one side – because of the bend in her spine it looks, feels, like her back-brace is sticking out, even though the brace is no longer there.
We think she is more ‘difficult’; then we think she is more in pain.
How does someone who cannot speak express pain? They scream, cry, of course. This is what she does. Increasingly.
What do other people do around her? Smile sympathetically, step away; step away without smiling sympathetically; or say and do the right thing.
It could be any of above.
We do not have a mental app that translates what she means, what she wants. She is the ultra-Enigma Machine – with the letters intending a different character every time they show. But there is no Bletchley Park team on standby to crack the code.
She might be upset about her operation.
We don’t know.
We meet her surgeon to sign the consent forms. ‘What do you need to know?’ he asks. We thought you knew, we think.
The conversation goes as if she is not there. ‘There’s a risk of neuro-damage, but that’s less important here,’ he says, gesturing at her splinted, clamped legs.
She will be anaesthetised, placed face down, and if ‘they’ are ‘happy’ after a bit, ‘they’ proceed. We are asked, in front of Amy, to consent to ‘death’ as a possible outcome.
Sure. Okay, let’s go. Towards the sound of gunfire, as we (too often, it seems) say.
Or it may not happen, and we may be stood down.
How is she right now?
We think – uncomfortable.
There are songs she likes; there are songs she quite likes; there are TV programmes she likes; and ones she quite likes; piano pieces she likes; and ones she quite likes. She is now less accepting – on car journeys, in her room, at the piano – of the things she only ‘quite’ likes.
We press ahead for these reasons. The suspicion that she will become progressively less happy – and then unhappy – around the things she can engage with and enjoy.
What if the ‘good’ things stop being ‘good enough’ for her?
We – she – can’t reach that stage. It is unconscionable. When Amy looks at us, distressed, we think she means, ‘what now?’ and ‘what will you do?’
The answer, on this occasion, is spinal fusion surgery. I hope that is the right answer.
Amy had spinal fusion surgery on 29 August. From all we can know so far, it went well, and she is now back home continuing her recovery.