We've been busy going about our business lately, caught up in our renovations and daily life with two beautifully busy boys, quietly in denial about the severity of Josh's eye condition. Then a few weeks ago we had a massive reality check when his ophthalmologist (a word I'm really getting sick of writing, so will now refer to her as the Oph.) presented his case at a conference. She got back to us with a recommendation we'd been dreading - surgery.
There wasn't a general consensus at the conference amongst all the Ophs that were there, only discussion that surgery was an option worth exploring. It has been done, with success on patients with similar conditions, but J's particular condition is so rare, that no one knows exactly what the outcome would be. It could be an improvement, or it might not change anything. If he doesn't respond well, if his eye reacts badly to the procedure, or if the structure of the eye is in anyway compromised, it could very well make things worse. It's a roll-the-dice type scenario and we are more than terrified. Our Oph was hesitant to say one way or the other what we should do, which makes decision making pretty difficult, but she did say we need to make a decision soon.
We then saw an Oph here, a great guy, a rare treat in a city where decent specialists are few and far between. He also used the "S" word, but explained it to us in a way that made us realise we didn't really have a choice. It's now not a matter of if, but when... There's a fairly small window of opportunity here, while his brain and eye develop neural pathways between each other. The good news is that his vision was better when he was small so he already has the foundations laid, but as the condition progresses (and by progresses I mean, gets worse), what he sees is less clear and the brain can't decipher it as easily, so it may very well shut off the right eye. Surgery would remove the obstacle, his lens, and hopefully give him a better line of vision. He'd have to wear a contact lens and his glasses and I imagine, initially, he won't like that very much.
There are so, so, so many unknowns and it feels like a giant leap of faith. We also need to decide where to have the surgery - here, where everything is familiar and comfortable - or in Sydney, where the better specialists and family are, but where it's all a bit different and less comfortable. I suddenly feel very old. When did I become responsible for making these major decisions for another person? We're talking about our son having usable vision in one of his eyes, or not, how do we possibly make that call, knowing he will have to live with it forever if it doesn't work out? On the other hand, doing nothing could also be a really bad move. I'm torn between wanting to protect the little guy from the ordeal of general anaesthesia, hospital and a potentially long recovery, and the knowledge that we really need to do what it is in our power to do, to save his eyesight and give him a decent shot at maybe one day driving a car, backpacking around the world on his own, and doing all the other things us sighted people take for granted.
When I was 14 I had major surgery on my jaw. The doctors sold it to my parents as being necessary to prevent future problems. They trusted the advice they were given, and I had the surgery, spent a night in intensive care, a week in hospital, and six weeks eating through a straw. I woke up from the anaesthesia and the first thing I saw was my mum, crying beside the bed. I was high on pethidine and didn't know what she was so upset about. Even when I saw my bruised, swollen and unrecognisable self in the mirror later that day, I still didn't get it. Faced with the prospect of being on the other side of the bed, being that parent, I finally do understand, and I really wish I didn't.