Hospital Time

Hospital time moves differently. I don't think there is anybody who has been in a hospital and hadn't noticed this. Sometimes you sit there for what seems like days and a glimpse at the watch shows you it has been ten minutes. On the other hand some days you seem to run through all the meetings without waiting at all, and it still takes those same six hours. Exactly like the days when you sit and wait for hours. Everything works differently in the hospital, they are like their own little island of another reality and every time those electronic doors open, you step into the rabbit-hole. I never really knew that before the kids. I've been to hospital a few times over the years, but I was young and young people have a different way of looking at things. But ever since I had the kids and I started seeing too many doctors and spending too many hours in hospitals I know the truth. Visiting a hospital is like getting a dementor's kiss. Hospitals, although they are supposed to be places of healing, are the places that suck away all hope, and I can't help but feel I age ten years every single time I step into one.
It is no wonder that all those TV shows about hospitals only show you the lives of the doctors, because who wants to see the lives of the people in the waiting room?

What goes through your mind when you wait? Are you like me, trying to guess what is wrong with each child? Trying to tell yourself you are lucky because there is always someone that looks like his condition is worse? Looking curiously at other parents who are just starting out, you know, the ones that have tiny babies and a horrified stare, the ones that sit huddled together at the back and trying to look as if they are here by accident? Hospitals waiting rooms are filled with people doing their best to look normal, most bury themselves in the newspapers or the iPads or the phones. Some try to bury themselves in playing with their kids, as if colouring will make sitting yet again in the hospital waiting room bearable. Some, like me, are trying to push time forward, trying to figure out what to ask, what to say, what we just heard. The one thing nobody does in a hospital waiting room is talk. Every family is an island of solitude and hurt.

Every time I write about Yon's ocular albinism I feel like a fraud. It is exactly the same way I feel every time I step into the hospital. I feel like everyone is looking at me and thinking I am a drama queen, trying to make my son seem "sicker" than he is and milk as much sympathy as I can get. So many people out there have bigger problems, so many children out there need so much more than Yon. Who am I to sit here and talk about any of these things? Who am I to pretend I understand what people with real medical problems go through? After all, I get to the hospital and I ask the whatever-she-is that does the first test "how is he doing?" and she says great. Then I ask the other one "is everything ok?" and she says it is. And lastly I ask the doctor and she says he is doing very well, and why would we want to register him as partially blind? and sends us to "Family Support" because that is what you do with crazy parents who nag doctors.
But not before she gives us the official letter stating he has 40% vision. 40. Not 60 like the last letter. Not 50 like I tested him at home. 40. In what universe is 40% vision "great" or "ok" or "very well"? In the hospital universe. The same universe were the doctor thinks four years old are responsible enough to change between regular and sun glasses so they should have two pairs, the same universe were your file gets lost somewhere in the building and will "probably turn up before your next appointment". The same universe were they send you to family support a year after you get the first blow of "static-genetic-condition".

Family support is a very helpful thing, because hospitals can often feel like a slam-bam-thank-you-ma'am don't they? You get the letter and bye-bye see you in six months and don't let the door hit you on your way out. Doctors tend to under-react. I guess it's part of the job, and when you see so many kids with so many problems, you have to stay detached. I understand that, but I hate it. Our doctor actually remembered Yon because he is such a unique case, and still she looks at him and all she sees is all the other kids who have more severe problems. The family support advisor looks at him and all she sees is the child who looks normal. So normal. And she tells us that. And they all look at us and they see two over-reacting, nagging, pushy parents who are out to label their child.
And this is how they send us away for six more months.
But on Monday we have our school advisor coming over to check how Yon is doing in school. And then (as she always does) she will look at us and all she sees is parents who are not doing enough. Parents who are in denial about the fact that their son can't see. Parents that are not fighting enough for their son. Parents who won't go the extra mile.

We are stuck right there in the middle. The doctor's way is so much easier to walk in. It is so much nicer to believe that it is all fine, that his life isn't affected because of his lack of vision, that he really doesn't need anything special right now and we shouldn't worry about it until he starts falling behind. If he will. He is still so young, they say. Wait. What's your hurry? Stay here in denial-land for awhile. And you look at him sitting on the sofa at the family support advisor, and he looks so normal. So normal.
Until you really look at him. Until you notice all those little tale-tales signs he hides so well. Until you open the letter and see it in big bold writing - 40% vision.