Friday, 17 September 2010

Everyday bravery


Sometimes the smallest things are the most courageous. Telling your friends that you are ill is a small thing but it is something people find hard to do; what with all the social ramifications that one, surrounds illness and two, impinges on our social belief system that different is bad.
It’s scary that those two ideas are already manifest in a seven year old. I understand The Boy doesn’t want to be different from anyone else, nor seem to be weaker than his peers in any way. He just wants to fit in and get on with life.
But life has dealt him an odd hand. He has epilepsy. Not the Grand Mal where you collapse but Petit Mal or Absence Seizures. I am not sure whether having Absence Seizures is a blessing or a curse. It could be considered a blessing in that it is easily hidden but it could also be counted a curse because it is so disguised no one actually believes that he has a problem.
The Boy’s life is a record that is always jumping, and I really mean that. For a short period of time at any point in the day and mostly several times in an hour he “blanks” for a few seconds. During this time he sort of goes away, I am not sure where, and then he comes back and carries on exactly where he left off. You wouldn’t think a few seconds would matter but I have found that there is a whole lifetime missing in those seconds. Think about it a second is a long time, it could mean life or death or why else would we talk of split seconds?
The funny thing is, with Absence Seizures is that he can carry on doing things even though he is not ‘there’, for instance, he can carry on walking, even though he doesn’t know it. Can you imagine one moment you are just leaving your classroom and the next you are six foot away from the door down the corridor? It’s not much I grant you but it would be pretty disconcerting. Or say you are telling a joke and you are about to hit the punch line and then everyone is looking at you frustratedly and you know you’ve lost your audience in that split second, or at least what you thought was a split second. Then you could be walking to your table in the school dining room with your tray and suddenly all your food is on the floor and you don’t know why.
What amazes me is that The Boy is able to cover these lapses and no one seems to think any the worse of him. It’s just the Boy. His jokes are lame, he’s clumsy, and he’s in a world of his own.
But there are times he cannot cover, these are the times when he blanks and he wets himself. Just because one part of him is not there doesn’t mean the rest of him will wait. So he stands there and does nothing while he empties his bladder.
He stands there while people shout at him and get cross or laugh at him. One moment normal; the next different and marked.
Today The Boy is going to tell his classmates why he is as he is, he’s going to open himself up to everything he fears because if he doesn’t then worse could happen. He has worked out that he has to tell people even though he will from then on be different because that is the only way he can be accepted. He has to make the moves, he has to anticipate the mood of the community he is in and he has to get them on side, and quickly. Of course he knows there will be some who will make an issue of it but hopefully his friends will show their true colours and he will not be alone.
I am not sure I could be that brave…

If you'd like to know more about Epilepsy and in particular Absence Seizures  check out these links:


23 comments:

PantsWithNames said...

He is a brave boy, you must be so proud of him. I hope it all goes well for him. x

Tattie Weasle said...

Pants with Names - so do I! It's murder having to be at home and not knowing 'til the end of the day!

Posie said...

What a very brave little soldier, so young and yet so grown up...hoping it all goes well for him today. Posie

Michelloui said...

You are both brave and you both have my best wishes. A friend of mine in high school who was intelligent, nice, fun, a little ditzy sometimes but part of my generally happy and fun social group told us she found out why she 'suddenly spaces out and other things' a lot. She also was diagnosed with Absence Seizures.

To be honest, I hadn't noticed the other things and I had just thought she was a variant of normal. I recently caught up with her again on Facebook and it looks like she's had a loveley, happy life these past 21 years.

'Everyone has something' I was once told, and they were right. If it's not a diagnosis its a crazy family or a new disability that one isn't born with, or a divorce, or something. I hope his friends cope well with this--mostly for your son's sake, and partly because they too will have their own need of support from friends one day in one form or another. x

SmitoniusAndSonata said...

A huge step for him , but however difficult , well worth it . He deserves to be as proud of himself as you are !

Tattie Weasle said...

Posie - Oh thank you! I haven't been brilliant and getting round to visiting myself and suddenly there is all this wonderfukl support form you and everyone else. I wish The Boy could see it too but there again perhaps it;s just me that need shte support while I wait!
Michelloui - I like your turn of phrase a "variant of normal". I forget that normal is quite often "not quite"...Thnak you so much for your support!
SmitoniusAndSonata - I am really proud of him but loathe to say so too much as he hates it when I make a fuss!!!! Perhaps an extra treat tonight...just for him.

Lou said...

What a brilliant move by Boy... ..Feeling very choked by that post. Good luck Boy I'm rooting for you, best way to find some really GOOD friends.

He may even inspire someone else.

Wow.

Kerryonliving said...

So poignantly written about your brave little boy. I hope it goes well with his friends, and hope that with kids of that age they will either think it is really cool or else just shrug their shoulders and get on with things? Wishing him all good luck and great friendships x

Trish @ Mum's Gone to... said...

I think he's doing the right thing and hopefully by telling everyone he will be very relieved (and you too).

My son had a very bad stammer throughout a lot of his primary school years and his friends were always brilliant. It cropped up again at secondary school but again had excellent support from new friends. It's near enough disappeared for now but I'm forever grateful to people who didn't tease him.

Diney said...

What a gorgeous little boy he sounds - and so brave and grown up about it. Hopefully he will have fantastic friends who will just be there for him, as you all are. A variant of the normal is a great way of putting it.

Mud in the City said...

How brave. For The Boy to be willing and able to stand up and explain something like that it has to mean that you as parents have done a fantastic job of giving him confidence, assurance and motivation. Well done.
x

Tattie Weasle said...

Lou - It was totally his idea so I am crossing fingers like mad that it works...
Kerryonliving - you just never know with kids; hoping that they'll err on the "cool" side!
Trish - it's the teasing bit that gets me I know and always will but hopefully he'll be the stronger for the support from his friends...
Diney - he's the best I just have to tell him so he'll never forget.
Mud - you are too kind, I am just so proud of him - that is until he wipes his snotty nose on my jumper...ho hum!

Jude said...

It's a brave thing to do, but probably the right thing. My own sister has epilepsy, only she has the kind with the full seizures, I don't think it's had an adverse affect on her life in any way, and she is on medication to control it. The 'absence seizures' is interesting. My own son can be in the middle of reading to me, and will then just go off somewhere for a minute or two, and then come back again - it could just be him, but you're making me wonder now if I should look into it more.

Expat mum said...

Awww. That brought a tear! Definitely doing the right thing and he'll find that most of his friends will accept it almost with comment or question. Little kids are usually very accommodating once they know what's going on. Bless.

Spencer Park said...

I read this post yesterday on my phone but couldn't leave a comment. I hope that everything went well for the little lad.

He is indeed an inspiration.

elizabethm said...

I hope it went well. What a brave boy and what good parents you must be to have raised him to be so thoughtful and determined.xx

Mother Hen said...

I hope Friday went okay for your Boy. So young and to be so brave. Why do such things happen to the good ones?

Crystal Jigsaw said...

Sweet Tattie. You have described seizures so very well. You know I am epileptic and have had a very tough year this year, having to surrender my driving licence after suffering several tonic clonic seizures which used to be called Grand mal. My medication has been changed now but I take each day as it comes. It isn't easy. But I'm still here to tell the tale. Which is exactly what we should do and which is why I totally, utterly and completely admire your beautiful boy. There should be more children, not to mention adults in the world like him because if all us epileptics were able to tell our tale, and forget about hiding the facts from those too ignorant to understand, then we wouldn't need to feel different.

Life is a wonderful gift for us all; should we have special needs we treasure our days even more.

Please feel free to email me anytime if you ever need to talk to someone who totally understands where your boy is coming from.

My love, Kathryn xx (CJ)

Ladybird World Mother said...

Oh Tattie. I am reading this a week or so later... I do hope that the Boy came home bright eyed. He is indeed an inspiration. As a teacher I have come across a lot like him... and it is ALWAYS better when everyone knows. And children are so damned nice when they 'get it'. Hugs as ever. xxxxx

Iota said...

Gosh, that is brave, but it will help his classmates understand. I hope no-one is unkind.

Apple Island Wife said...

Hey Tats, you know the biggest thing your little boy has got going for him is you - a very modern, present, emotionally intelligent parent giving him the loving and support that he needs. We're lucky to live in the age we do when confronted by such a situation. I have Tourette's Syndrome myself, a neurological condition which results in twitching and ticcing. I have it only mildly, I'm lucky. But my parents and I have never even spoken about it! And it resulted in some tricky times at school. It's another condition where some people don't know you've got it, because one feature of it is that you can defer your ticking - if you're meeting the Queen or something. You can put off having a bit of a twitch until later. So when I have spoken to friends about it, sometimes they've found it hard to believe in.
Anyway, there are ways of living with these things, and one of the ways is all that loving and presence of mind that you so obviously have. Your boy still has just as much chance as the next person to live a full, wonderful life and be a happy and successful person in his own terms... xxx

Tattie Weasle said...

Sorry to everyone for not replying to your wonderfully supportive comments but the internet round here has been somewhat suspect for the last few weeks...
Jude - Take a closer look there's no harm in it at least! I didn't realise that Epilepsy can sometimes be heriditary.
Expat Mum - you are so right! The support from fuirned has been great!
Spncer Park - Thank you! He is an inspiration except when he's being a pain in the neck but heck he's first and foremost a little boy! And I love him!
elizabethm - I am ever surprised at his thoughtfulness...
Mother Hen - there's a saying that you are never given more than you can handle sometimes I do question that but there has to be a reason for without it life would be far too depressing! And yes it did go well!
CJ - having read this it really does make me see how special he is, you are so brave to remind me that it must be hell for him in his disjointed world and yet he is essentially a happy go lucky child.
Standing up is a brave thing to do - I'll remind him tomorrow with a big hug!
Ladybird World Mother - they are! Nice that is...
Iota - his class have been stars!
Apple Island Wife - thank you mostly I feel I am an awful hag bag of the mother but it obviously works for him! And it is difficult when people don't see an illness so yes he is kinda brave to admit it!

Nicola said...

Oh wow. How brave you all are. How brave your Boy is. I think kids are really understanding at a young age. More curious than judgemental. Hopefully that will be his experience.

Thinking of you all. x

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