There is something magical about Wade’s eyes. From the moment he fixed his eyes onto mine, on the day he was born, I have been drowning in those pools of wisdom. He says more with his eyes than he can with gestures and speech. Without a doubt, I love those crystal blue eyes more than anything so I was very worried when at about 9 months old, I noticed that his eyes weren’t tracking together. It would only happen for a second or two but it was there. Luckily Wade’s uncle and aunt who are both optometrists were staying with us not long after it started happening and recommended that we see an ophthalmologist.
We booked in and the ophthalmologist examined his eyes through this binocular type device and identified that he is very long sighted. She explained that when the eyes look long distance they should be at rest but if you are long sighted, they struggle to focus causing eye strain and fatigue which can cause one eye to drop inwards. This is known as Accommodative Esotropia and is quite common with people with Down Syndrome due to the low muscle tone. Low muscle tone is best described as the muscles having to work harder than normal to achieve the same outcome. Like walking in water or walking uphill. It is not the same as muscle strength. Therefore, if you are long sighted and your eye muscles are straining to focus, they work even harder if you have low tone which causes the weaker eye to give up and eventually it can drop inwards permanently if left untreated. This can mean eye surgery or permanent vision impairment.
The ophthalmologist told us that Wade would need to wear glasses. She told us that we should get a particular type of glasses as they are flexible plastic with no hinges, screws and metal parts. Perfect for little ones who like to smash their faces into the ground while learning to crawl or walk. Better to come out with a nasty bruise than a shattered eye socket for sure. I dutifully went out and asked around at optometrists for this particular brand.
And this is what he looks like in them!!!!
Now, I’m not a vain mother. I often leave the house without looking in the mirror only to shake my head as I catch a glimpse of myself in a shop window. Sometimes my “Is it clean? Does it fit?” approach to children’s fashion will result in Wade looking like a homeless person but there was NO WAY I was getting these glasses for him. I know that his vision was more important than his looks but, Come On!, there has to be something else available.
I searched the internet and managed to find another brand, Miraflex, with a variety of frame shapes and colours. The strap on the back was sturdy and adjustable and they looked better. They are made from a single piece of sturdy, flexible plastic and are practically unbreakable with polycarbonate lenses.
I had a week or two of Crazy Mother Hen while I was waiting for the glasses to be made up. I was devastated that he needed glasses as I was sure these perfect blue eyes would lost behind giant Coke bottle glasses forever. Yet, I was panicking that, because the prescription was quite strong, he couldn’t see much at all and I was desperate to pick the glasses up as quickly as possible to fix the problem.
The day I picked them up was amazing. We put them on him and he looked at my face for the first time. The look on his face said “oh, that’s what you look like!” His eyes were searching my face and he got up really close and spent a while looking me over. Mum was with me and he did the same with her. It was beautiful. It was like he was meeting me for the first time. And with the lenses in, he looked incredibly cute.
The next day I wrote this…
(I was going to edit it into past tense but this is exactly how I felt on that day so I will leave it as it is.)
I stood in the kitchen and cried today. We had just got back from the supermarket and I put Wade in the high chair while I put away the shopping.
It was the first full day of him wearing glasses and the difference in him is amazing. It’s very difficult to explain but I feel what he feels sometimes. He has always been calm and peaceful but today it was a deeper level of peace. It was peace mixed with a deeper understanding and comprehension of the world around him. He has always been very aware of his surroundings but today it was intense.
At the supermarket, I put him in the trolley and he couldn’t take his eyes off me. It felt like he was seeing me for the first time. I was announcing all the things I was putting in the trolley as I always do and he was giggling and laughing at every inflection, eye movement and half joke I was throwing his way. He has always done this but again, it was deeper. I was walking around with the biggest, most ridiculous smile on my face as though my child was the greatest living creature on the planet. As though everyone around me was just about to come into contact with this remarkable being and have their lives changed for ever…
I think I love him even more than I did already. Whether the glasses make me see his eyes more clearly and read the expression better or he his just more at one with me and world, I don’t know. By the time I got to the checkout, I was blathering about how fantastic he is and he was calling out, making eyes at me and smiling non-stop. He had everyone around him in his spell.
When we got home, I put him in the high chair and gave him one of his cardboard books. I left him to it and stood there with tears rolling down my cheeks as I watched him spend 20min softly and carefully trying to turn the pages on his own. He was so intent on his actions, lost in the moment of trying to slide his hand along the page and lift the page over. He would never have spent this much time on it before.
I was crying because I realised this was the first time that I was seeing him directly benefit from something I had done. Sure, I’ve bought him toys that he enjoys or given him comfort when he is sad, but this is different. The prescription is quite strong so I think he really couldn’t see that much before. These glasses are making him experience the world differently and removing hindrances to his development. It was really overwhelming to see that effect happen within a 24 hour period.
I’m sure every parent gets overwhelmed by the sight of their child achieving milestones before their very eyes but for some reason this was huge. It galvanised within me the faith that I do understand Wade. We do have a bond and while I am doing all of this for the first time with no idea of the best way to proceed, somehow this little guy makes himself heard within me. The more I am able to trust that voice, I will keep making the right decisions for him. I think I understood the idea of ones heart bursting with pride today because that’s how I felt. Proud of me and proud of him. Excited by the potential of what he can achieve.
It was also relief as I was devastated after being told that he needed glasses. It is no big deal in the whole scheme of things. Kids get glasses all the time but this was the first real aspect of Down Syndrome that I have had to deal with and I was worried that the glasses would make him look disabled. This is so selfish and ridiculous but I realised that even though I know that he has the condition and I know that everything will take longer, I think I truly thought that eventually he will just be like everyone else. That he will be so fantastic that no one will treat him as though he has a disability and the sheer brilliance of his amazing personality and good looks will get him through every aspect of his future. This is crazy. I think I thought that if he had glasses, everyone would know he had a disability as soon as they look at him. That he would never get a chance to prove anyone wrong as people would have already made up their mind about him because of the way he looks.
I was overwhelmed by how much I loved looking at him in his glasses and how fantastic he looked in them. I was also overwhelmed at how wrong I was to feel the way I did.
And yes, he keeps them on! He pulls them down when he is tired but mostly he keeps them on. One weird thing about the glasses is that when we are out in public, A LOT of people ask me if the glasses are real.
Do I honestly look like the kind of person who would make my baby wear fake glasses. Do people even do that? I think people ask because an adult eye test involves the patients feedback and how can the baby tell you if his sight is blurry? But its fascinating to me that people assume I make my kid wear fake glasses before they assume they don’t know all there is to know about paediatric ophthalmology!…