[ Post a Response | ECHO Dialogue ]
Posted by Pippa Duffy
on July 3, 2009, 21:57:27, in reply to "Re: Finger/Toe Clubbing"
81.145.109.75
Hi Catriona
Yes, you make perfect sense to me. I'm finding it very hard to know when to 'raise awareness' and when to take a breath and let it go and save my energy for Leo. My Mother in Law today said 'Downs babies' and I said 'you mean a Baby with Down Syndrome'. When I think about it now, I actually need to be much clearer with her that we are using the term Trisomy 21 and this is the term we wish her to use, well remind her actually, because we have told them that. She also went on to tell me how when she was younger, she and her friend used to go and do little dance recitals at a 'home for incurables' as they used to call it. Even though she was trying to show me that this isn't her attitude, the very fact that she raised the example with THAT wording still left a little stone egg in my heart. She was making dinosaur shaped sandwiches for my older girls, while I fed Leo his puree, which he wasn't loving at all (!) and I said to him, 'when you're a big boy, Leo, you'll be able to have a dinosaur sandwich made by Nana' and then my Mother in Law responded by saying 'hopefully'! I couldn't quite believe it, so I just said 'definitely' and didn't say any more. She also had brought some little gifts for the girls, but brought nothing for Leo. So while she says one thing, her actions seem to suggest to me that she's afraid to get close or doesn't quite believe in his staying power...... I tried to create lots of opportunity for her to be with him while I was 'pottering' in the kitchen, so that she was 'in charge' of him, but then when she makes these kinds of comments, I begin to feel all precious and that I don't want him to have any 'wobbly' energy around him. I just want people to SEE Leo for who he is, just a little baby who's 100% loveable! I think what's tricky for people around us (family, friends) is that our own energies can fluctuate. The love never does, of course, but I know that some days I want to talk about some of Leo's unique aspects or about the medical stuff, and other days I just want to forget about all that side of things. So we're probably difficult people to be around in that sense....
Going back to the medical professionals aspect, I think that in the same way as there are 'red flags' for allergies on patient records, there should also be a 'screen' that comes up with 'critical context' which would give parents the opportunity to state their preferred terminology and some 'do's/don'ts'. I would really like our own views to be reflected somewhere highly visible on Leo's Evelina notes, but I don't quite know how this would be done.... (Jo, if you're following this, any comment on this last suggestion?)
Lastly, Catriona, as and when you have the time and inclination (!) would you keep me posted on Amy's progress? I have done some reading up, so that I can try to understand a little more although of course, it's often the stuff between the lines that's more relevant and I'm always wary of reading the 'generalisations' about medical conditions, because my own philosophy is that every one of us is unique and so Amy will have her own interpretation of RS. But I'd love to hear about how things are going day to day (i.e. not just the RS stuff!) and also so you can have another person to show off her personal achievements to! x
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