Someone sent me a link to a blog by a man with leukaemia the other day, it was so honest and open that it was impossible not to be moved by it: http://baldyblog.freshblogs.co.uk/
It made me think that in order for my blog to be more constructive perhaps I should be more honest and open about the issues I face especially the issue of having a child with the same disability as me.
But it's SO hard being honest with myself about the whole thing sometimes.
One of the issues I'm currently thinking about after a recent visit to the consultant is how far would I go to prevent Archie getting the same curved spine [lordosis] I have, a symptom of having Kniest. My problem is that perhaps the one thing I've always hated about having Kniest is the curved spine aspect of it - it made me semi-suicidal when I was a teenager.
But even if intervention is possible [and I currently don't know if it is because the consultant we actually went to see was "on a course", great] it will involve spinal surgery which is obviously not without great risk.
Would I be wrong to persue this option or wrong not to?
Monday, May 26, 2008
Tuesday, May 6, 2008
Is there a perfect non disabled/disabled sibling combination?
I've been trying to work out if there is a perfect combination of siblings when one of them has a disability?
My son Archie has Kniest Syndrome which, put simply, means he will be short statured and will have mobility problems. My younger son Ben doesn't have Kniest.
Now Archie is 3 and Ben is 16 months they are already the same size. Ben is already more agile than Archie and probably physically stronger too.
Archie is starting to notice all this I'm sure and it must be hard for him to watch his younger brother being able to do certain things more easily than he can.
Would it be easier if Archie was younger? I think perhaps yes. I was the youngest of 3 sisters and I don't ever remember comparing myself in the same way as they were obviously going to be more able/better than me at most things - the excuse being they were older.
Does increasing the number of siblings distract further from the direct "competition" of having 1 disabled and 1 non-disabled child? I very much doubt I'll be able to answer that one from personal experience but I'd be interested to know from other people's experience.
My son Archie has Kniest Syndrome which, put simply, means he will be short statured and will have mobility problems. My younger son Ben doesn't have Kniest.
Now Archie is 3 and Ben is 16 months they are already the same size. Ben is already more agile than Archie and probably physically stronger too.
Archie is starting to notice all this I'm sure and it must be hard for him to watch his younger brother being able to do certain things more easily than he can.
Would it be easier if Archie was younger? I think perhaps yes. I was the youngest of 3 sisters and I don't ever remember comparing myself in the same way as they were obviously going to be more able/better than me at most things - the excuse being they were older.
Does increasing the number of siblings distract further from the direct "competition" of having 1 disabled and 1 non-disabled child? I very much doubt I'll be able to answer that one from personal experience but I'd be interested to know from other people's experience.
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