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Friends With Albinism

  • 3. Here We Are Again!  2008 Glenelg Adelaide
    Through two online groups (Albinism International and AFA Online) I have met many people with albinism. I didn't know anyone with albinism as I was growing up, it wasn't until I was 20 that I met Shari and Fiona who are in some of these photos. I met Kim (one of my bestest buddy's) back in 1986 but we didn't keep in touch. We met again through an American online community for people with albinism (NOAH) sometime around 1998. If I didn't have albinism, I wouldn't have met all these amazing people, I feel so lucky. Some I haven't met in person yet, but am determined to one day, what better excuse to travel the world!

July 17, 2008

The Pack Rat

Last night, I cleaned out my 10 year old daughter's bedroom.  Amongst the toys, teddy bears and general girly stuff, this is what I found....

  1. Two Roses and one Guylian chocolate boxes, each with all the empty chocolate wrappers still in them.
  2. 3 pairs of little brother's undies and several other items of his clothing
  3. Wrapping paper from last birthday and birthday before that
  4. $2.75 in loose coins
  5. 11 green shopping bags filled with various collections of 'stuff'
  6. 7 odd socks
  7. Several heads, thankfully plastic ones so no coroner's report needed.
  8. A little pink box full of rocks.
  9. lots of lovely little hand written notes to various people
  10. 8 handbags
  11. half a million McDonald's toys, I'm sure these things breed in dark cupboards
  12. Lots of school work books from last year and the year before, all beautifully kept with lovely handwriting.

Ashley's room is now spotless, uncluttered and revamped with a new quilt cover, new wall hangings and new rug - fit for a princess!! 

A.

July 02, 2008

Extra Extra Read All About It

We made all three of our local newspapers this week.  Click on the image to see a bigger version.
Photonews Article July 08
Orana Shopper Article July 08
Orana Shopper Article July 08
A.

July 01, 2008

To Some Great Friends....

Nic, this is not something I try to dwell on, everyone has their stresses, this is just mine.  And yes, I dig a big hole for myself by looking like I'm just normal most of the time, but really, I am just normal!!! lol  It's never been any other way and never will be so I just get on with it.  Thanks for your comments, I know I need to train people and using a cane is part of that because it takes away the need for some explanation.  It causes other problems though, people tend to assume you are completely blind (and sometimes completely incompetent and even stupid) if you use a cane and I'm far from blind (or incompetent or stupid!)  It's a good way of sorting the sheep from the goats - some people don't want to be trained, they like things the way the are and that's their choice.  But as I get older, I am realising how much more I enjoy the company of people who accept me warts, cane and all.  (like YOU!!)

Heather, so nice to hear from you! Heather has the HPS form of Albinism (causes bleeding problems and other serious health issues) and is very involved with the HPS network in the US.  Another beeno buddy from one of my internet groups. You can read her blog at http://heatherkirkwood.blogspot.com/.  

Kimmy poo, I'm mentioning you too! (like you asked, actually you blackmailed me into it lol)  Yet another beeno buddy - I can't imagine how things would be now if I hadn't met Kim, she's the owner of Albinism International - the most fabulous of all the internet groups for people with albinism.  She started it 5 years ago and it has been the source of many friendships, much learning and much support (and even a few heated disagreements) for all it's members.  It's like a second family for many of us, a place where we can go and just KNOW that others understand our trials and triumphs.  Albinism is a very socially isolating condition, really the vision impairment is secondary to the social effects, there are always other ways to do the things that our vision might not allow us to do the way everyone else does, but to not be able to see facial expressions, recognise friends in the street and drive a car are some of the biggest complaints we have. Connection through the internet is ideal, we can enlarge the font and see the photos (many of us would agree we love taking photos because we can see them better than real life!)  So thanks Kimmy, you've done a great job starting and maintaining that group.   I think it has changed many lives for the better, including mine.

I babysat my grandchildren today, for Ashley.  They were so well behaved.

Ashley's-teddy's-June-08A.

June 30, 2008

My Little Tiger

Noah wanted to be a tiger yesterday, so drew some stripes on himself.  ALL OVER!  I wonder what the headmaster of his new school will think when he meets him this week. 
Nosh-tiger-stripes-June-08 Yes, he is wearing two hats.

A.

June 29, 2008

Sunday In The Sun

It's Sunday morning. We have a bit of a social morning planned, no swimming this week as the swimming club has a charity bowling day instead.
We leave our cosy warm house at around a quarter to nine and catch a taxi to the church. The sun is lovely and warm, but not too high in the sky yet, so very uncomfortable for someone who has no pigment in their eyes to filter out the light. In summer, although the light is brighter, it's at a different angle to winter. The light is coming into your eyes at a much more direct angle in winter, it's blinding, the contrast is extreme - I can see either bright blinding light, or black shadows, maybe a shape or two, and some movement, but not much else. As I get out of the taxi, and although it's very uncomfortable to look around in the sun, I can see that the footpath/kerb is only a couple of steps away by where the cars are parked at the side of the road. The footpath is in the shade and the cars are in the sun with sunlight reflecting off them. I know the people with albinism reading this are quietly saying 'ouch' to themselves. I'm thinking at this point that I should be using my cane, but I know it's only a short way to the door and relatively flat. I can't see where the path from the footpath to the door begins and a cane won't help with that. Thankfully Ash is helpful and lets me know it's just a few steps in 'this'I direction. The path is shaded, so is mostly black to me against the building and grass which are in the sun, and also barely visible because the sun is so brightly reflecting off them. I am aware of other people around, but have no idea who they would be, I wonder if I know any of them? It seems unfair that they can see me and I can't see them. I can see where they are going in the door, so follow with Noah holding my hand so I don't loose him in the crowd. I know Ash will follow and find her own way. We pass through the foyer which has sun streaming in through the windows and go into the main area of the church, which in contrast is all black at first, apart from the stained glass windows. In a few seconds I can just make out where the seats are and whether they are taken or empty. The floor is dark, I think it is dark green, and I'm hoping there are no obstacles like bags on the floor, because if there were I wouldn't see them because it's so dark down there! The lighting, although not too bright, is still uncomfortable. There is light coming in through the windows and just darkness inside, so again just light and dark, not much in between. I can see that there are people moving around and taking their seats, but again I have no idea who they are, are they looking at me, is there anyone I know here? are people trying to make eye contact with me and thinking that I'm on another planet because I don't acknowledge them, or do people just come here and mind their own business? I have no idea. By the sounds I can hear, the room is quite full, lots of quiet rustling near and far, a baby squawking some distance away. We are on our own in our row though, no one is really close. Suddenly a voice starts talking through a microphone. I assume the priest (?) is up the front of the church, all I can see is four lights, I assume candles, I have no idea where he is, I can't tell by the sound because it's coming through speakers that fill the whole room. Prayers are said, we all stand, sit, stand, sit. I don't really participate, I don't know all the responses, I'm clueless really, but it's nice to listen to, it feels good The singing is nice, I wish I could join in but I can't read the words that are projected onto the screen up the front. I can see the screen, but haven't a hope of reading what it says. Singing while holding a monocular is just not as enjoyable, I'd rather just listen than have to hold my arm there all that time and suffer a sore neck afterwards. The voice on the mike calls the kids up the front to go do their thing. I'm so glad I have well behaved trustworthy kids - they disappear out of sight, bit of a panic there, I hope they are ok, but I just can't keep them in my sight all the time, I have to trust (in something?) that they will be ok so they can get some independence. I can't watch them from a distance like other parents, so it's always been a bit like jumping out of an aeroplane and hoping your parachute will open for me. I have to hope that someone will let me know if they are not ok. They eventually return safe and sound. Noah wriggles his way through the rest of the service and we get up to leave at the end. Walking from the dark church into the bright foyer is blinding, I can see a big black blob of people making their way out the door, slowly. I can't see any colours, just a black lump of people shapes. I hear someone say hello, I hope they are not talking to me, because I can't see who might have said it, but I think they are talking to someone they know now, as I hear someone respond, that's a relief, and a disappointment. I wish I knew someone here, but I'm glad I don't because I probably wouldn't recognise them and that could be embarrassing. I wonder if people think I'm a snob because I'm not making eye contact, or are they just not looking anyway so it doesn't matter? I get my cane out, what a relief. I know in my head that it's a wheelchair accessible church, but it's nice to have the backup of being able to feel the flat ground, and to know where the gentle slopes are, these can be hard on the knees and hips when unexpected. There was a nice feeling during that service. It sounded nice, the singing was enjoyable, the choir was great, I love choirs. Nice to be somewhere where everyone is together, with a common intention, even though I had no real contact with anyone except my kids and no real understanding of the Catholic rituals. I'm not there for the rituals so much, it's the gathering of people with the intention of connecting to something bigger than us that I am attracted to. I've never said prayers before, but they are nice to listen to. It's good to reflect on those who are being prayed for, and to think about someone other than myself and how I'm always wondering what I can't see lol.

I knew the bowling green was very sunny, I've been there before. It is way too quiet and way too sunny. I couldn't hear voices well enough to recognise where the people I was looking for were. They were too far away. We walked around for a while. I asked the kids if they could see anyone familiar and they couldn't. I could see where the bowling greens were, and the people bowling, but I couldn't recognise anyone. I can't see fine detail, which is necessary to pick one person from another. Even if I could see fine detail, the sun just made opening my eyes too uncomfortable, yes, even with sunglasses. Then I heard my name, finally someone I know! I had a short chat to her, but it seemed everyone (whoever they were) was fairly engrossed in their bowling. I have no idea if I knew any of the people bowling. I wonder if they saw me, did they wave or smile? I don't know. Did I look like a goose for not waving or smiling back? I know the lighting inside the bowling club was bad for me, big bright sunny windows with dark shadows. I've been there before so I didn't bother to go inside, I don't think I can take the kids in there anyway. I wonder if there were people I knew inside looking out wondering why I didn't go inside? or not. I just don't know, but left feeling very disappointed that I hadn't had the social day I had expected.
I'm giving myself half an hour to feel miserable about being on my own and not being able to find people; to feel the frustration of being lonely in a crowd; to feel like screaming WHERE THE HELL ARE ALL THE PEOPLE!!!! WHY CAN'T THEY JUST TALK TO ME!!!; to be angry that I'm on my own when I should have a partner to help me, to wish that I could give my kids more freedom and not restrict them because of my vision; to feel envious of all the married people who have their groups of married friends with whom the 'single' people don't fit in; to wish the brightness of the sun would just GO AWAY, but keep the warmth; to wish that it wasn't such an effort to go out and find people; to be angry that I get 'vision impairment' and 'single in my 40's' that seems like a double punishment. Then I will get over it and bounce back, again.

A.

June 26, 2008

The Accidental Day Off

It was such a nice day today, the sun was so warm and the air so fresh. I got the ratty kids off to school, then walked to the gym (1/2 hour and all down hill). After a workout and a massage (yes, all part of the membership, you can have as many 1/2 hour sessions in the massage chair as you want) I came home, checked emails and decided there was nothing too urgent so off I went and had a snooze in the sun. ohhh, the warm winter sun and the big comfy bed beside the window was just tooooooo yummy!!!  Just so you don't think I'm a complete slacko, I have been working way too late for about the last 9 days. I haven't made it to bed before midnight for that long and it's starting to take it's toll on this early-to-bed-early-to-rise-country-bumpkin. I really didn't intend to have a day off, it just worked out that way, and anyway, I deserve it!!

Nic, I think Noah would absolutely love boy scouts, although I don't know how we would fit it in as he already does tennis and swimming. And getting him there and home might be a chore. Let me think about it, I'll get all the new school stuff sorted first, too many new things at once overwhelms mummy!

I figure that if I'm sending my kids to a Catholic school, I'd better get some Catholic education myself. I've taken them to the local Catholic church a couple of times, but it's all foreign to me, I have no idea about all those rituals and things that they do, so I've enrolled in an introductory course. It does have a name this course, but I can't remember what it is, so I guess that means I've failed the first pop quiz lol. I feel no desire to become Catholic myself, or for my kids to either, but I don't think a little religious education could hurt. They seem very open minded and have surprised me by correcting some of the misunderstandings I've learned through friends and relatives about what it means to be Catholic.

A.

June 24, 2008

What Would You Do?

If I had my way, if I had the resources and the energy and the time, if I were one of those Oprah kind of people, I'd set about inspiring all the kids at our school to take pride in their appearance and their manner.  I'd fill them with a passion for learning and making the most of the freedom and innocence of childhood.  I'd reward all those teachers who spend their days in classrooms with snotty kids having patience I can't imagine having.  I'd make it so that the families would want to support the school fund raising attempts, sports days, and other events, and go to the P&C meetings.  I'd teach those parents who came from socially inept families themselves how to raise children who want to be the best people they can be and how to be part of a supportive community themselves. 
But I'm not that person, I've taken the easy way out and am sending my kids to a better school.  It's unfortunate that we won't be making the most of our close proximity to the school anymore.  It couldn't get any better for a non driving mum than living across the road from the school, but a short bus ride in the mornings and afternoons will probably satisfy Noah's love of buses and entertain Ash for a few weeks until she gets bored of it.  We are not Catholic, but the local Catholic school has agreed to 'take us in' anyway. 
I know it won't be all glossy like High School Musical, but the Catholic system does seem to be more in line with what I'm teaching my kids at home about pride, respect and community spirit.  This is definitely not being supported at their current school where the motto is 'keep your hands feet and mouth to yourself'.  My mother used to say this in the sixties and it didn't work back then either. 
I don't know if this is the right decision or not, but it feels right and that's all I have to go on.  I've never been a parent before and I'm doing it alone with no one to bounce ideas off or give me their objective opinion.  So this is it.  My decision.  It's happened very quickly, but most of my good decisions have - after all I'm Aries, we don't mess about with procrastination, we just get in and do it. 

A.

June 14, 2008

Lucky.

I've been thinking this week how lucky I am to have 'a difference'.  I'm so glad that my challenge is getting through life with rather bad eyesight and not deciding which bottle will give me the right shade of blond.  And how lucky am I that I'm already in my 40's!!  Imagine having to live through your teenage years forever.  I was spared from a lot of pointless worry about how I looked because I just accepted from a young age that I was different.  I wasn't this happy about it back then, but I can see in hindsight that it saved me from a lot of unnecessary stress. 

Noah had a school excursion this week, his kindy class boarded the 'Big Red Party Bus' and visited lots of local places.  I met him for lunch in the park and saw that he was totally enjoying himself.  He's such a ladies man, just look at the pics, they say it all...
Noah's-Bus-12-June-08
Noah-Bus-12-June-08


Noah-Bus--2-12-June-08







Noah-and-girls-12-June-08

A.

June 05, 2008

Does It Get Any Better?

Sorry Nic, I went and saw the movie without you!  I couldn't wait until after the weekend, I'm so impatient.  What a fabulous movie!!  I don't think it could have been any better.  My ex husband should have done what Big did, but he didn't, so really I should call him 'small'.  And my life - dose it get any better?  When will I ever meet my Mr Big?  Let's not go there.

I'm still recovering from the weekend - Nanna M was staying with us for a week, she came for Ashley's 'Little Cupcake' 10th birthday party.  I can't believe she's 10 already! how amazing that her birthday was an overcast drizzly day just like the day she was born, I wonder if they played John Farnham's 'A Touch Of Paradise on the radio - this was playing as she was born.  I certainly wasn't in paradise, I felt like I'd been hit by several trucks, but it's still a great memory finding out that she was a girl and had the princess gene.  I went the the swimming club presentation night, then swimming on Sunday morning, then we visited a fairy garden on Sunday afternoon - phew, it was all good but I'm glad it's over.  Some photos....
Cupcake-party-3-31-May-08 Ash and Noah are putting the finishing touches on their little cupcakes.  The Little Cupcake lady came and showed the kids how to make decorations out of icing and they decorated the birthday cake and then some smaller cupcakes for themselves.  It was an awesome afternoon and kept the 5 little 9 and 10 year old girls and Noah totally absorbed for the afternoon. 
Cupcake-party-7-31-May-08 Nanny M cut the beautifully decorated cake while Ash and Noah supervised.
Pods-1

 Pods-2 These are some of the pods that were at the fairy gardens, they were much more interesting than the fairy gardens and the bottle house.

I love that I can just zip off to the movies in the middle of the day.  Of course, I got up at 5am and worked until 7.30 so that I could afford the time, but It's a nice life.

Ice and champagne just don't mix Nic, thanks for the suggestion, but I think I do dumb blond really well and pink champagne without ice makes me do it even better!

A.

May 30, 2008

Sex And The Silly Blond

Ah, Carol, no worries, my computer's addicted to champagne this week!  (did I say computer?)  I know I definitely said Champagne, and the cheapest Champoo we could find.  I did see your comment on BegsyBride, but can't find it again to re read it, lol, I blame the champagne for that.  My mother in law is staying this week, and we always enjoy champagne together - we've had a day of good food and good shopping today.  We set out this morning to see the Sex And The City movie, advertised everywhere as starting on June 5.  I don't know why, but I just thought we were really lucky to be getting it early in this town - silly meeee!!  Why don't I listen and why didn't I read the dates on the cinema website??? of course it starts next week, so we did the girlie thing and ate nice food and bought clothes. 

A.