Last night Nik started two lists; in one she wrote down all the words that Tom is still using despite not having heard anything for over two months while the other consisted of those he hasn’t used for some time. We have been asked about the extent of Tom’s language development prior to the meningitis and had come up with various estimates of the size of his vocabulary in an attempt to benchmark his ‘pre-deaf’ state. We were way off - a count revealed that Tom is still using over 100 words and, while many of them are distinctive only to close family (hardly unusual for a toddler), he can still make his feelings and desires known in a forceful, exacting fashion.
The list of words he seems to have forgotten is reassuringly short hinting to our highly suggestible minds that, after implant ‘switch on’ next week, these three silent months will be reduced to a minor developmental blip during Tom’s journey towards being an eloquent raconteur with a vocabulary to shame Stephen Fry (and I’ve allowed for a three-four year monosyllabic retreat into his fusty teenage bedroom). Such medical-advice-defying optimism is dangerous territory of course but is all part and parcel of our experience of parenting through a life threatening illness.
The ‘resting state’ emotion is slightly more pessimistic than this and, while the curve for us is generally upward, days are still peppered with the occasional lost moment where tears rapidly surface or a more debilitating descent into fear-filled anxiety. There are all sorts of triggers that set us off; we hear fragments of nursery rhymes as he sings himself to sleep, we don’t call his name any more when he starts to wander off and there have started to be occasions where he signs without speaking. There is a sense of grief (for want of a better word); telling yourself it’s only temporary doesn’t always do the trick and the bottom line is that, without the bionic ear, he is now profoundly deaf. Luckily for us, we haven’t hit such periods simultaneously for a good few weeks and there has been a ‘strong one’ to describe Tom’s rapid recovery and the life-affirming happiness he so evidently feels. He is so irrepressibly cheerful and won’t countenance his parents trying to be miserable.
It’s now over 10 weeks since Tom was diagnosed with meningitis and this is the first extended period of what can best be described as our new ‘normality’. I’m back at work where they thoughtfully ‘saved’ me lots of things to do, Nik is on extended leave from work and Tom, insistent on communicating, is acquiring sign language. As might be expected he has focussed on things that are important to him so cars, trains and various items of fruit are vigorously described. No gender imprinting there then. How far the signing goes, though, is debatable. Our rose-tinted view of his future involves mainstream schooling and the ability to communicate directly with whomever he chooses. The pathway to achieving that end is unclear and the subject of more than one expert (and not so expert) opinion - as if there wasn’t enough to deal with already.
At the moment we’re keen to explore most anything and have heard nothing but praise for AVUK – sole purveyors of Auditory Verbal therapy in the country. We’ve also had the John Tracy Clinic in Los Angeles recommended to us. It’ll keep us busy whatever happens…
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