Seeing her in a new way

I went to see my younger daughter’s end-of-term drama performance today. It was one of the cutest things I’ve ever seen! The oldest kid there couldn’t have been more than nine or ten, and they had all learned their lines so well and performed wonderfully. Of course there were the expected number of slip-ups and forgotten lines, but every parent there could be legitimately proud of the work their kids had done. No false ‘oh my kid is the wonderfullest thing ever!’, they really all did well.

My daughter is seven, and there were two girls her age, and a few others that may have been younger than her. But she was the youngest brain there. It hit me, more than it ever has before, that she is different.

She has a (finally confirmed) condition called Valproate Syndrome, which is a result of the sodium valproate (Epilim) I was on during my pregnancy to control epilepsy. I’ve suspected it for a long time, but I’m not that keen on letting Dr Google diagnose something that important, so we have been waiting on results from genetic testing and paediatrics. Just before Christmas, her paediatrician confirmed that it was valproate syndrome that they had been considering, and that the testing that we had been through had eliminated other genetic disorders, leaving valproate syndrome as the last one standing. It was good to finally have a name for everything that has been going on.

To be honest, I don’t know a hell of a lot about the syndrome. I have spoken to an organisation about getting more information, and I might consult Dr Google now that I have a diagnosis. What I do know is that it causes a very specific facial phenotype, which she fits very well (this particular phenotype makes kids with the syndrome very cute. It’s a bonus). Other key features are hearing difficulties (yup) and mental retardation, as one friendly website described it. There will be more, but those are the ones that have affected us so far.

Until today, I had accepted that she was different from other kids, but I’ve seen her in isolation. I don’t really see her hanging out with other kids or interacting with them. Today was eye-opening.

She’s seven, but she would have fitted right in with some of the kindy kids in the audience. Her mind is just very young. I’ve known it academically for a long time, but it’s only now that I’ve known it viscerally.

I know that she is always making progress against her own standard (we threw away National Standards as something to measure her by a long time ago), but I don’t even know if she’s progressing at the same rate as everyone else, just with a lower starting point, or whether she is falling further behind. I don’t know what her limitations will end up being, whether she’ll be able to move out of home but on a later schedule, or whether as some point she will stop developing and remain dependent to some degree. I just don’t know. She’s only seven, so I guess it’s all just about watching and waiting.

I went to a morning tea with a group of women with disabled children, and at the time I felt out of place. They all had children that had so many more issues! But today I realised, she is in a similar boat to children with Down Syndrome – except that her disabilities are less known and understood. I’ve walked a road not dissimilar to the one many of these women have, with the endless hospital appointments and dealing with the difficulties of raising a ‘different’ child.

The road ahead of us is murky. Paediatrics couldn’t tell us a lot – I suspect that we might be one of a very small group of kids with valproate syndrome that they deal with – maybe even a group of one. There’s not a hell of a lot of easily accessed information on the internet – much of it will require some decoding. I haven’t found anything talking about the features of growing up with valproate syndrome and life histories of people that have it – despite the first cases being identified in the 1980s. There must be people my age with it – but I know nothing about them. I will have to dig deeper, I think.

My dream has been to kick the kids out of home by the time I’m about forty and go live the life I didn’t have as a young adult. I don’t know how to modify my dream, because I have no idea what shape her life will take, and I’m struggling with that. I’m not wedded to the dream, but I’m not good with uncertainty, at all.

Meanwhile, she’s happy, healthy, friendly, cute, popular, and has all the features of a good, happy child’s life. She does not suffer for her disabilities, and for that I will be eternally grateful.

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