Things I feel I ought to know but don't

[Alison Fisher]

Glad to hear you disagree Gareth. The logical part of me disagrees with myself as well, but the mum in me has been in panic mode. I know I'm being silly and over-reacting but there's a part of me that that I can't quite get to truly believe it. I am in dire need of a swift boot up the behind. Any volunteers?

[Anne B]

Hi Alison

I understand those mum feelings. I worry about the same things.
I worry that my children miss out now. I can't take them to all the places other kids go. Teaching them to read and spell is a nightmare. Just not being able to see them when they shout out "look at me" (normally doing something they shouldn't!)
Then i worry about them growing up and having KC and that does really scare me.Whoops i need to go to bed getting wingey again.


Anne

[Lynn White]

Alison and Anne..

When I started out on my career as an optom, I made the aquaintance of an extended family who had congenital cataracts. There was a 50-50 chance of conceiving an affected child but they all went ahead anyway, having a strong religious faith. One member of the family had 5 children , only one of whom was affected. Others did suffer the strict 50-50 lottery.

I followed these children through surgery at 6 weeks old to remove cataracts and the subsequent contact lenses only to discover despite heroic efforts the resulting vision was poor. I followed their progress through life and also those normal children whose parents were affected.

The whole experience humbled me because they all had such a sense of humour about their situation. The sighted children of affected parents took it all in their stride (though they were not above taking advantage of parental ignorance of what they were doing due to lack of clear vision!) and the affected children of sighted parents developed strong characters - partly due to the fact they knew they were wanted however their vision turned out.

You are always going to worry - thats what parents do irrespective of what there is to worry about - and its no use saying don't - but I would like to say that generally children adapt brilliantly to having a parent with impaired vision - they often take charge and feel proud they are helping you out. If they do develop the same problem, then they have one advantage - you! There is no-one better placed to guide them how to cope - and by then you will be very savvy about getting early detection and treatment.. things that didn't happen with yourselves.

Sometimes its the not knowing that feeds the worry and one way of dealing with that is to make sure your children are regularly checked visually by someone who knows what KC is about. My "cataract" family did that and felt much more in control of their destiny as a result.

Lynn

[Carol Vines]

hi alison

i don't attend lri i'm registered under northampton as my parents didn't drive and my dad felt the buses that way were easier than leicester, we moved down this way in 1981. i'm in the process of trying to get moved to kettering as its nearer and far easier but thats another story. i don't drive either at the moment but i can catch buses or get oh to give me a lift so anytime you want that coffee we can sort something out.

as for signing consent forms without truly understanding them that is down to the doctors failing to explain the procedure to you correctly, sometimes we tend to trust that they know what is best for us. i myself ask far more questions now than i did before 2002, first time i discovered this wonderful help group, as i learnt that there was so much i didn't understand about KC and i'm still learning everyday.

as for your children i'm sure they'll cope fine if they do ever get diagnosed as having KC, for one they've got you to help and they have us (though if they wander into chit chat they'll probably think we're all slightly mad ). being that bit older than gareth i went through school in the 70's and because i was classed as a well behaved pupil i was always sat at the back of the class. i never could see the blackboard, was far too shy (honest i was shy once) to tell the teacher so i used to copy what they were writing out of friends books. on exam days i used to always turn up really early so i could get a seat at the front but in the end i've come out of it all ok, got a decent job in accounts.

[GarethB]

Alison,

I live in Rugby and work near Loughborough so regularly skirt round Leicester.

Tell me where to be and I will do the honours with boot up backside

Oh and I will wear normal shoes, not my safety boots

[Andrew MacLean]

Lynne is right

The thing we need is to know that we are not the victims of circumstances but that we have a measure of control over what happens.

we need to refuse to be defined by our condition. I am not a "keratoconic", neither do I really 'suffer' from keratoconus. I live with keratoconus. It presents me with challenges, but it is the way I respond to the challenges that will define me.

Thanks, Lynne, for that beautiful and inspiring story.

Andrew

[Per]

Hehe, funny expression that one, "keratoconic". Very true that one. Still, I think when we are "down in a glaswegian pub toilet", say just post op, in the middle of a rejection episode or hydrops, I would say that expression covers what we feel like. A little bit keratoconic, please hand over some litres of care and support, thank you!

[Alison Fisher]

A huge thank you to everyone who's replied. You've really helped me get things in perspective. Choccie, wine or a pint of your favourite all round.

Carol - I hadn't noticed your location under your name - a real duh moment. I don't know the south of the county that well. If we're ever down there, or you're up here, we'll have to meet up for a natter.

Gareth - we're on the Loughborough side of Leicester so I bet you pass quite close by us, but until you promise to wear fluffy slippers to administer the swift kick I'm not telling you exactly where.

[GarethB]

Alison

Are you coming to the Midlands KC group meeting in Birmingham?

[Alison Fisher]

Only if you're wearing slippers.

Being serious for a mo I haven't got a clue. I'll look up when and where and let you know.

edit - I've looked it up and as Leicester City's game has been moved to Friday night my 'chauffeur' is free so I could - now all I need to do is persuade my girls that they would like a day out in Birmingham.