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19th January 2005

It's William's first birthday today and what a year it has been! I’m much more settled when it comes to talking about Albinism and find I actually want to discuss it with people. Since the last update we’ve told all our families (well, we didn’t but word gets around) and their reactions have been both good and bad. Well, I shouldn’t say good and bad, I should say that some have made me feel fine about telling them and others have made me feel like telling them to shut up and do a bit of research before asking me stupid, hurtful questions.

I’m still finding the biggest problem is ignorance. About 80% of the people we tell respond almost immediately with "But he doesn’t have red eyes!" I’m still not sure how to respond to this statement, usually it’s by stating that people with albinism don’t have red eyes to which I usually get met with a look of disbelief. I blame the media for this, if they release one more movie with an evil red eyed albino character I’m going to go nuts! Let’s hope The DaVinci Code can make it a little more realistic (even though the character is an evil monk who kills people).

William is growing up so quickly! He’s unstoppable at the moment and so cheeky! He loves getting his own way and throws tantrums if he doesn’t. His favourite thing at the moment is water, be it the bath, the hose, his pool, the tap or even just a drink bottle - he loves getting wet. Climbing would have to be his next favourite thing. He can scale the couch in about 2 seconds and I’m not just talking about getting onto the seat - I mean all the way up the backrest and onto the very top! He’s only just learnt to get off things backwards but still goes down steps forwards. He’s fine as long as you warn him that the step is coming.

He’s not quite walking yet, but took his first steps five days ago. He’s starting to assert his independence too - he has to hold his own bottle and you can’t feed him with a spoon any more. You either have to put the food on his highchair tray and let him pick it up (especially fun with peas) or put it on his spoon and give the spoon to him or if you’re eating too you can feed him from your fork. You’ve got to love him :)

In terms of his vision, I’d have to say I think it’s pretty good but I have been warned not to get my hopes up because children with Albinism adapt so well with their limited vision that it can be hard to tell. I used to wear a fine gold necklace and William loved holding on to it so I assumed he could see it but the day came when he pulled on it a little too hard and it broke. I didn’t think much of it until he started searching around on my neck for the necklace even though it wasn’t there.

We’ve had another specialist appointment too and a trip to the geneticists. The specialist appointment seemed pointless, we waited for about two hours to see him for 10 minutes only for him to tell us that nothing was wrong. I assume the appointment was just to make sure he didn’t have any signs that he might need glasses but I still felt deflated afterwards.

The geneticists’ appointment was a bit different, I had no idea what to expect. We went in and she had a look at William and noted a few things. Then explained that there isn’t any testing for which type of albinism someone has in Australia but we could send off overseas and pay a stack of money to get testing done, which may be inconclusive anyway. But she also added that since we said that Albinism wouldn’t change our decision to have future children she said there really isn’t any point. I agree, I don’t see what it’ll achieve by knowing that William has OCA1B, OCA2 or OA. We know he’s got one of them and we know that the effects are the same so it doesn’t matter to us.

Right now I doubt anyone could pick William out as ‘the albino’ in a room full of kids, which has it’s disadvantages. If he doesn’t look or act any different people are going to treat him the same as everyone else. Why is that bad you ask? At the moment it isn’t, but once he gets to kindergarten, and even later on, school it makes a huge difference. If the teachers can’t recognise that he can’t see what the rest of the kids see they’re not going to work to try to accommodate him. I’m already getting prepared for when he starts school so I know everything I possibly can that’ll help him learn as easily as possible.

Anyway we're all going really well at the moment, lots of playing, laughing, singing, dancing and the rest of those baby things everyone loves (although not quite enough sleeping). William is my perfect little angel - the best child anyone could wish for!