When I published that last blog post, I had a brief chat with someone on Twitter about how I’d looked back on those early days with the thought “how the hell did we cope?” And of course we did, but it wasn’t like a conscious process, we just went with what was thrown at us.
Joff’s eyes are microphthalmic, which means his eyeballs are smaller than usual, he also had non-working pinpoint pupils and a few months on, had more surgery to widen his pupils permanently to let as much light in as possible. He also has constant pendulum nystagmus, a side-to-side flickering movement, which lenses help with a bit.
So these days when I look at a new-born’s eyes, I think, how did we cope taking Joff’s lenses in and out? Our first appointment to do with his lenses was in the infamous Eye Infirmary in Glasgow, just off Sauchiehall Street. Our experience over the years has taught us that eye clinics are crowded, difficult, noisy environments, where the appointments run over time massively. The lady we were seeing was not very empathetic to us. She told us we could either prise the lens out by trying to use the lower eyelid to catch the bottom edge of the lens or use a wee rubber device that acted as a wee sucker to pull the lens out. Both ways seemed horrible and we didn’t have any success in the clinic. It was a fraught appointment and didn’t fill us with any confidence in ourselves. A 300 mile drive to feel like utter crap in helping our wee baby.
Luckily, a new-born’s eyes don’t produce that much protein in their tears, so we could safely wait two weeks between getting the lenses taken out and cleaned. We decided to transfer Joff’s eye care to Aberdeen, much closer in mileage, but not in travel time on the busy but rural A96. We’d troop over for a 10-15 minute appointment, spend an hour and a half travelling each way and an hour and a half waiting in the hospital, not easy with a new-born and a toddler. Our doctor there was massively nice to us, he made us feel that we were doing everything we could to promote Joff’s vision, including wrapping tinsel round the handle of his car seat because it was so sparkly and eye-catching. So what if it was October?
One time, after another long and exhausting day visiting the hospital, Mr Effie took the wee man out his car seat and disappeared upstairs with him. He said, “don’t come upstairs and try to ignore the crying”. He wrapped Joff tightly in a shawl, laid him on our bed and knelt over him then proceeded to do all he could to work out how to remove Joff’s lenses himself. The wean gret and gret for ages, it was bloody heartbreaking to listen to, but after about 20 minutes Mr Effie yelled, “I did it!” And thus began our wee double act….Mr Effie would take the lenses out, clean them, and when they were ready, I’d put them back in. Taking a lens out (our way) feels a lot like pulling the skin of your eyelid forward (with added tears). As long as your hands are clean, your nails are short, and you avoid touching the coloured part of the eye, it’s quite a straightforward thing. After a short time, we both learned to take them in and out with ease.
So the hospital continued to check Joff’s eyes and clean the lenses fortnightly, we were taking them out ourselves weekly. When the cleaning regime was moved to weekly, we were already cleaning them daily. We knew that if Joff developed an eye infection we could take the lenses out immediately ourselves, we didn’t need to traipse over to Aberdeen, in the absence of having anyone local who could deal with them. It felt good to have that control and the wee man got on great with the whole thing. By the time Joff was 6 months old, we were doing occasional mentoring to parents of other young children diagnosed with a cataract and fitted with a lens. I like to think we gave a lot of confidence to these parents, and wished we’d had the same.
By the time Joff was about 18 months old, a paediatric ward had opened up locally with a great eye doctor so we didn’t have to travel as far or as often. This doctor registered Joff as blind, though blind doesn’t necessarily mean you can see “nothing”, but it was a recognition that Joff will have significant visual problems all of his life. It comes back to that old chestnut of finding it hard to test someone’s vision when they also have profound problems with communication. He sees and is completely addicted to sunshine and bright lights. He has a fantastic sense of internal direction in familiar surroundings, he doesn’t walk arms outstretched to navigate indoors. If he’s eating a favourite handful of dried fruit placed on a patterned background, he won’t find them all by sight. He doesn’t appear to see well in the lower part of his field of vision and favours his left to his right eye. I don’t know what colours he sees, if his vision is doubled or blurred. But I know his sight would be a lot worse if it weren’t for his miraculous lenses.
And with hardly a mishap or infection, Joff wore his lenses successfully until he was about 12, when he learned to poke them out his eye himself and eat them.