When an unintentional comment about W and his eyes is thrown our way, it could be easy to throw one back, but for me I take it in the genuine nature it was intended.
For example, on the last visit to the eye hospital, W had to have a special photograph taken of the back of his eyes. This photograph was to determine whether he had another sign of an eye condition called ocular albinism. I would like to be able to explain what he was looking for in detail, but to be honest, I cannot remember it correctly, and I don't want to give the wrong information.
We walked down to the room with the camera, and were greeted by a nurse and a chap who was operating the machine.
W sat down, and placed his chin in the rest, as requested by the photographer.
The photographer then proceeded to try and take some photos.
He soon looked up at W and made the following request - "young man, can you please stop moving your eyes around as I cannot get the correct photo that we need."
I looked at the nurse, she looked at me, we both then comically looked at the photographer and said in unison - "he has nystagmus, he can't control his eyes!"
He was so embarrassed! However, I didn't take offence. It was an honest error and meant with no malice. But at least now he understands that when he see the word 'nystagmus' he knows it's an involuntary eye movement.
Some photos were taken, and we headed back to the specialist. But, unfortunately, the photo of the area he wanted to see, was missed by only a few millimetres, and therefore he didn't get the answer he had hoped.
As we had been at the eye hospital, by that time, for four hours (!!), W was tired, I was tired, the waiting room was empty, the reception staff were closing up, and I just wanted to get home, despite knowing we would hit the rush hour traffic, and all the hospital staff vacating the site as well.
Swabs were taken from W and myself, during that visit, and will hopefully either rule out or determine a genetic factor in to why W has nystagmus (and any other condition). It may even link into my eldest son's disability (he has severe learning difficulties).
I have spoken in detail about the genetic tests carried out on my eldest son, J, in the blog I write for him ( you can find it here ), and I clearly state that I have not wanted genetic tests carried out, in the vain hope of finding the boys have something that could be cured, but rather I want my middle son O, (who has no disability) and my youngest W, to be forewarned about anything they could pass on to their children. My eldest will not have children of course.
Our next appointment is in early August, and we may have some results back from the tests. The appointment is always the same routine
* have general chat with ophthalmologist about how he's doing
* have eye test (at this age it is pictures to point to, not letters)
* nurse administers eye drops
* wait for 20-30 mins
* see the specialist who performs an in depth examination of his eyes and determines if new lens strength is needed for the glasses
This usually takes around 2-3 hours, but can and does run on for longer when there are delays with other people's appointments, staff shortages etc.
So far, over the years, W has taken these appointments with such graciousness. He doesn't complain or moan. He complies with the requests from those who are looking at his eyes. He is amazing.
