Categories: uncategorized
Date: 21 July 2006 21:36:39
Today at toddlers I moved on from remonstrating gently with the bigger boys to being Very Stern Indeed. It felt good, I must say.
I wanted to say a bit more about the stuff people sometimes say to me about baby b. I moaned a bit earlier about some of the "well, he'll be fine won't he?" comments. Lanark said that it can be like a prayer - people don't know the future, and they say what they hope will happen. I think that is right in some ways; after all no-one is going to say "well, I dunno. Maybe he'll never walk."! The thing I find so difficult (and I probably didn't make this clear in my minor disgruntlement post) is the implication that by being a bit more cautious about it I am unacceptably pessimistic, or even risking 'jinxing' his progress in some way.
Generally, these conversations are with people who don't know the whole picture. Although we're fairly open, we don't actually tell all and sundry about every aspect of his progress, or some of his care. In particular, we're very aware that we're dispensing with his privacy, not our own, and in a few years' time he might really mind about that. Also, Hydrocephalus is a very unpredictable condition. We're kind of unsure if he's even got it, in a way. There was excess fluid on his brain when I was pregnant - that's what was spotted on the scan - but it remained stable throughout the pregnancy, and his head circumference has followed a sensible line on the development graphs since he was born. It might be that because this occured early in his development the brain 'worked around' it and all is well. There could be things which we don't know about yet and will learn more as he develops.
For me, it's really important to acknowledge this, in balance with the fantasticness of the progress he has made, and the level of mobility he does have. In part, I think I'm saying "yes, he's doing brilliantly, but please don't stop praying". But it's just the was I deal with things. I don't think I'm pessimistic, but I am also not cut out for life in Cloud Cuckoo Land, where everything is and will be fine and you're not allowed to admit any other possibility.
On a similar note, I occasionally have conversations with people who imply that given how well baby b is doing now, we somehow shouldn't have been worried about him at all. Kind of "well what was all the fuss about then?". I can only assume these people are idiots. 'The fuss' was an entirely appropriate reaction to the news that our child had a condition which could have left him severely brain damaged and paraplegic. The fact that he has gone on (so far) to prove all those worst case scenarios wrong in no way means that our reaction to that initial news was somehow not legitimate. Honestly! People!
A question: am I expecting too much from people in terms of their reactions and so forth? Is it a little bit like bereavement, in that nobody knows what to say, and sometimes people try to say stuff and it all comes out wrong? Or do I just know a higher than average number of stupid people?
Either way I think I'm almost certainly lacking in tolerance towards them!