All is Yon For a While

"There are a few things we need to discuss" is NOT a sentence you want to hear, no matter the circumstance. Especially not if you just sat down to a parent-teacher meeting in nursery. And yet it was exactly what Yon's teacher told us the Friday before last and caught us off guard and totally unprepared for this kind of conversation. He started listing the things that bother him, things that are actually a range of occurrences - behavioural, physical, and social. Things we knew and didn't think much about, things we were starting to feel a bit concerned about, and things we didn't know existed.
The list he gave included Yon's love of touching things (which we attributed to his vision), his tendency to put things in his mouth, his dislike of loud and sudden noises, not liking it when you touch his head on the one hand and putting things in his hair (like rice) on the other, walking on tip-toes, unwillingness to try new foods and to drink out of a normal cup (he uses a straw), his difficulty recently to move from one activity to the other, his need for routines, his lack of sharing on some occasions, his need for a large personal space, and what might be an inability to recognise some non-verbal social cues.
Put all together you have only one word jumping at you - Problem. Yon has a Problem.
His teacher was, of course, so very nice and gentle (like he always is), and since he knows us and he knows we worry he tried again and again to explain that Yon is a very smart, popular and verbal child, and there is nothing definitive and we can choose to ignore it and it might go away on its own, but we can also just grant him permission to have the school psychologist observe Yon for a day and then converse with us. We said yes, we tried to ask as many questions as we could, we tried to get him to commit to a diagnosis (he wouldn't), we tried to explain away what we could, we tried to find connections to his eyes-situation (it might explain some of the things), and most of all we tried to stay calm and take it all in.
As you could imagine it left us shaken and very troubled. Can it be that there is something wrong and we ignored it?! How could we not see it? How could we not know that there is a problem? How can we be those parents who are blind to everything that is wrong with their kids? I say we but it really means I, because it's my responsibility, I am the mother.
And as it seems, a poor one at that.
What can you do when you get these kind of news? There are a few options, you can try your hand at internet-diagnosis (which undoubtedly will lead to the horrible autism/asperger path), you can check yourself over and over again to see what you missed and how the hell did that happen (which led to the cancellation of Mother's Day because bad mums do not deserve Mother's Day), you can sit down and watch him, and let everything he does be a sign that there is a problem and you (as a horrible parent) ignored it before, you can try and find solace with other people that claim there is nothing wrong with the kid and it's all a result of the times we live in, where people are quick to diagnose everything and everyone. Or you can just go away, mentally, and bury yourself in work, or TV, or books or whatever makes you not be there.
Naturally I did them all. And naturally, none of them helped, because how could they? How can it be better when you are heading straight on into the unknown realm of a Problem? How could it be better when you look at your child and all you can see is the ominous possibility of a Problem?
The psychologist came to do her observation on Thursday, almost a week after we talked to Yon's teacher, and this Wednesday we have a meeting with her to discuss and to see if more observations or steps are needed. Two weeks of the waiting, of watching, of trying to avoid the internet. Two weeks of sleepless nights, and of no answers.
I know if he has something it's not severe (probably) and that he (and we) can deal with it, and that he is a smart, funny, lovely child and nothing can change it.
But I can't. I can't stand the thought that he will have another problem. I can't have him needing to overcome more. Deal with more. I can't have him... Not perfect.
And he is not perfect, he already has to deal with so much, to overcome so much.
As an added bonus we went to the hospital on Thursday to meet the special professor dealing with genetic / retina kind of problems. He was our last link in the diagnosis chain, and the official stamp on it. Yon has Ocular Albinism, which means (in non professional terms) that his eyes are "dancing" (though in Yon's case you will not be able to see that if you are not a doctor), he has a problem with his depth perception (because his brain doesn't use both eyes together to create a perfect 3D vision) and he sees the world out of focus, like a bad Skype conversation if you want, and as a result he can't see very well from afar. On top of that he has a squint, which means we will have to make sure he doesn't develop a lazy-eye (uncommon in kids with Ocular Albinism but still) and he is far-sighted so he can't see up-close very well. His glasses are for the squint and the far-sighted conditions, and for maximising his sight, and so it is very important that he has the right prescription at all times. They can't help with the albinism, because it is a static situation that derive out of unusual development of the eyes. The good news is it won't get worse, the bad news is it won't get better. We knew it was coming, this official stamp, we were preparing ourselves to hearing it, to getting another batch of even worse news, but you are never really prepared are you? No matter how much you tell yourself this is what will happen, hearing the words are like a blow to the heart. Hearing he will definitely have to sit first in class, might need to have enlarged books / papers because he won't be able to read, he will never see more than he can see now, he will never drive, he will always need his glasses, hearing there is no more hope, it settles down on you like a heavy heavy weight that will not go away.
After saying he can't do anything for us, he recommended we check out the Albinism Fellowship website for more materials, taking into account the fact that Yon's case is mild. That is what we did, and we tried, we really tried to take it in the right proportions, to remember at all times that Yon's condition is not very severe and he has only Ocular Albinism and not full Albinism, and still reading it all, and watching this short movie about kids with Albinism in general that talked quite a bit about the sight problems these kids have, just breaks my heart.

I don't think I can explain the feeling of knowing that your child has a Problem, that he is Special. I can't explain how heart breaking it is to sit with him in these tests and see clearly objects that he just can't see, to see him try and fail to see time after time, to have him undergo more and more tests with the same result, to feel the weight of the finality. To know that there is no hope.
I blame myself. It might be stupid, but these are our genes that are causing this, all of this. We are the reason that he starts life at a disadvantage, that he will have to fight more, overcome more, be Special. Our fault that he might have this new Problem also. We are the ones that are supposed to give our kids the best start to life, the best options and opportunities. We are supposed to protect our kids from all bad things.
We failed him.
Twice.