Tuesday, July 21, 2009

maria


So moving along from the ‘incident.’
Which is getting rather spicy and more crazy. Seems she's been busted in the comments section. So.....it was her after all.

(Love referring to things as incidents. It could be anything…the ‘drunk incident’ the…. ‘I slept with an ex last night incident’, the… ‘incident of 1993 of which we shall not speak’…or ‘the issuing of a spanking into the blogosphere’ incident. The possibilities are endless.)

Anyway, so to put everything in perspective –and kudos to my mum for suggesting this - I got the office together and we headed to the cerebral palsy home.

Perspective is:
1) My leather handbag from Turkey. Have to justify for it in some way because it the extremity of all that and a bag of chips.
2) Heightened awareness of being fortunately physically and mentally able
3) I have a roof over my head. Sure, it might be running amok with raccoons? Squirrels? Cretinous winter raboids, which, it turns out, appear to be fornicating. The squeals and bumping around. Christ. This is why I don’t have Couchsurfers over anymore. Amongst other things.

Anyway. Ah. The point.

Well, doing good is evidentally, a good thing. Is also an excellent form of escapism – if you don’t cry.

Still haven’t done that, yesterday would’ve been a good opportunity.

So we went to the cerebral palsy home in Joburg South, handed out hotdogs and free hugs. It was hard, and touching, but so worth it.

It reminded me of one of the hardest things I had to do as an 18 year old.
When I lived in France, I looked after a clutch of children. Seven, to be exact. I was Fraulein Maria of the Von Trappes, except I didn’t fashion dresses out of curtains, and run around mountains wearing them.

I also didn’t have a thing with the father. Julie Andrews you naughty naughty minx.

Most of the time, the kids loved Aunty Peas. Which was very nice, yes.

I also ate a lot of brie, not so many schnitzels with noodles wrapped in brown paper packages and with snowflakes on the nose.

One child I looked after had a very rare disease.

Still to this day I couldn't find it on Google, because I only know it sort of in French, and even then the spelling is sketchy: Pachygyria Lissencephaly or some such. Thank you Secret for finding this!

Nutshell: our brains have convolutions, and therefore we have double the surface area than meets the eye. Her brain was completely flat, so she was severely handicapped.

It was a lot of responsibility for someone who was about to head to varsity, was harvesting the fruits of good wine, eating 8000 brie cheeses a month –butterball.com - and obviously loving the charms of ze Franch men. Who walked me through frog’s legs and the back of a Cannes night club. That one time.

It was a serious learning curve and often very difficult; life was equally as enriching as it was scary. Just the juice for an 18 year old, so it worked out surprisingly well.

Potty training her, helping teaching her to walk, watching that she doesn’t hurt herself while she eats. At that stage all she could communicate with me was through sign language.
She also got very frustrated and would have tantrums in the middle of Carrefour or at the hairdressers. She had seizures. Sometimes she’d just hit me repeatedly. So it wasn’t always a picnic.

But the experience I gleaned from that, and the love I had for this child, well, it’s unsurmounted.
And she was absolutely gorgeous – with huge green eyes and these tiny little spectacles on her nose. And when she smiled, or gave hugs – she was very affectionate –all would be but forgotten, for that moment.

Look at me getting all gooey. Over a little sprog. Who knew.

So I think I’m going to try and do this more often. It brings out my softer side. Check it out, I still have one.

17 comments:

Secret said...

Check it - I found this on wikipedia:

Lissencephaly, which literally means smooth brain, is a rare brain formation disorder caused by defective neuronal migration during the 12th to 24th weeks of gestation, resulting in a lack of development of brain folds (gyri) and grooves (sulci).[1] It is a form of cephalic disorder. Terms such as 'agyria' (no gyri) or 'pachygyria' (broad gyri) are used to describe the appearance of the surface of the brain. Children with lissencephaly are severely neurologically impaired[2] and often die within several months of birth.

Harsh.

Peas on Toast said...

Secret you're a genius! Now I even know how to spell it and do some more research - thank you so much for finding this!
Yip this is pretty much exactly what it is - apparently at that stage (1999), she was one of 4 kids on the planet with the disease. And it was so hard to find info on it.

It's seriously harsh, and obviously her life expectancy isn't great. I can't thank you enough for finding this - I'm going to read up some more about it.

Secret said...

Hehe, it are my pleasure!

There doesnt seem to be a moerse load of info on it now, but at least its a start :)

Peas on Toast said...

Seriously I'm welling up over here Secret, thank you for finding this. I was Googling furiously last night but found nada with my awful spelling.

This site particularly touched me - she seems just the same as the little girl I looked after:

http://homepage.ntlworld.com/foliot/lissencephaly.htm

Secret said...

Thanks for the web address.
Shame, its touching story.
Makes you thank you own lucky stars.

Peas on Toast said...

It does hey. :(

Mickey G said...

Interesting Post Peas.

I had never heard about Lissencephaly until this morning and it is now my new fact for the day, of which I will spread.

Don't you find doing you little thing for the less fortunate addictive?

Peas on Toast said...

Mickey - totally! I didn't realise the impact. We know it'll feel good and all that, but it's the best escapism and such a good way to put things in perspective and be happy with what we have.

Sounds cheesy, but it's so true!

tyrone said...

I take my hat off to the people that do it for a living. One of my aunts runs a nursing home for people with head injuries, old-age related illnesses like alzheimers, children born with things like lissencephaly, etc., and having worked there every now and again, I don't know how she does it all the time.

Her ability to handle the sadness with a laugh and good humour is legendary. I think that's her secret - she looks for the funny and human side of things. Admittedly, it's difficult to do and might seem harsh at first, but I think it's the only way of coping with a lifetime of seeing what she does and dealing with the things she does...

Look, it does help that some of the patients do the funniest things... Eat flowers? Catch trains? I've been proposed to (I was about 10) and been offered a ride on a private jet and a week at his chateau in France.

My very conservative grandfather was propositioned rather directly one Christmas...

Anyway, point is well done to you Peas. I think any time spent helping people in need is the most fulfilling you can experience. Kudos on getting the company to go along with you...

Peas on Toast said...

tyrone - you're so absolutely right. We were saying yesterday that the people who work there (and your aunt) must be the most incredibly amazing people on the planet.

And scarily, imagine if there were no people like this, to look after these people with love and care?

getaway said...

Great post peas - touching. Read about Katie. Poor angel - and still full of smiles.

We really have so much to be thankful for - and still we frump all over the place.

They are truly inspiring. I worked at a hospital with abused children - its amazing how resilient they are despite their experiences. Really brings you right back down to earth - and we get frustrated about traffic!!

- heartwarming

Peas on Toast said...

wow getaway! Kudos to you my dear - working in a hopsital of absued kids can't be easy - good lord, that takes serious resilience, not to mention a heart of gold. You are obviosuly one of 'those' people Tyrone and I were talking about :)

getaway said...

Awh :)

Guess we all try to do our bit. B'syds, it's as healing for us as it is supportive for them - as im sure you know! ;)

My Secret Diary said...

Good posting! Yes, share the sentiments. On my side also involved in charity work big time. But out of fear of having my bloggy ass kicked off this comment steam I shall not punt it here!
I do certainly know the rewards that come from "Making a Difference", even if its only "one starfish on the beach."

Peas on Toast said...

My Secret Diary - Oooh I'm cottoning on...I think I know which one you're referring to. They do awesome events right?

Good on you my dear, it feels pretty darn good eh?

My Secret Diary said...

Na miss Petti Pois, but I know the one you mean. I was merely refering to thousands of starfish washed up on the beach. You help one, by throwing it back, and get laughed at as thousands others died. But you made a difference to the one! (hot dogs an hugs!)
Im involved i rehab of street kids.

Peas on Toast said...

Seriously? Hats off to you! I used to live with a social worker who did the same, and I could see how taxing and emotional it all was. Makes our usual days of computers and meetings and paperwork CHILD'S PLAY in comparison.

Hats off to you!