Pride doesn’t begin to express what I feel. Wednesday night I had the pleasure to attend the local theatre where the local actors and actresses were putting on a show, supporting this show were various childrens amateur dramatic groups. One of them had my son as a member. Not particularly unusual I’m sure you’re thinking, but as much as I’m looking through my standard issue “Fathers bias glasses” I’m also seeing another side to the little 9 year old boy up on that stage, exposed and vulnerable to all who came.
You see, for those who don’t know my son, he has had a few obstacles to get over before getting up on that stage. When he was born, what feels like a full lifetime ago, my wife and I were excitedly awaiting our little boy. All the trials of pregnancy navigated all the tests taken and passed. Nursery decorated, clothes bought, hopes dreamt. The first glimpse of my son immediately made me feel uneasy, something wasn’t right. He was breathing, moving, making noises but his right eye was open and well, unusual. I think my wife noticed it first, we were given assurances everything was ok, but a doctor had been called to check my son over. My son.
I wish I knew who that doctor was, what he looked like, where he is now. I wish at the time I wasn’t so filled with fear that I cannot remember that doctors name or what he looked like. I remember him looking over my son, his big, pale vacant blue eye staring back up at that doctor. I remember the uncaring, insensitive almost accusatory questioning of my wife and the way he implied my wife must have done something to cause my son this problem. I cannot remember why I didn’t punch him in the face.
We were promptly moved in to a private room to await the consultant and if I’m honest, I don’t remember much else. The mixed emotions of my first born arriving with the fear that something was wrong had blurred everything else out. The next day I was met by my tearful wife who, upon waking in the night had found our son missing from his cot. She immediately went to the nurses station to find them trying to insert a feeding tube in to his nose, amazingly, despite the anger we were still to numb to challenge this and awaited the arrival of the consultant. He was lovely, compassionate, caring and understanding but none of this helped the next words he said being heart breaking: “It could be a tumour” the words we’d not mentioned but mutually dreaded. We were then taken up to the Special Care Baby Unit for scans.
The scans did not show anything conclusive. The next day we were then taken to see the ophthalmologist, we saw the lead consultant who, after thoroughly examining our tiny baby, couldn’t give us a definitive answer, instead referring us to a specialist at Addenbrooke’s. After some more waiting around in hospital we were finally discharged and what should have been a happy exciting time was tinged with dread and fear for the future of our beautiful baby.
The next few weeks all merged in to one, long unnerving wait until that appointment, we saw a children’s eye specialist at Addenbrooke’s and she was amazing, not simply because she told us what was wrong and was pretty confident about it. He had anterior segment dysgenesis, this in itself posed its own problems and complications ahead, but for now we were so relieved! Tears welled up, this lady was not only lovely and kind but she also knew what was wrong with our boy and didn’t mention the word tumour! It would take several days for this diagnosis to sink in and several more visits to understand, but for now it felt like a weight and a blackness had been lifted.
Hospital appointments aside, having a baby with an eye problem was (still is) heart achingly painful. As we realised he was in no immediate danger and we begun to relax, we also begun thinking of the future again. Google scared us in to believing our son had a disease found in horses in the Rockies, the more we looked the deeper this problem went. Learning difficulties, blindness, heart problems, missing teeth, developmental problems, the list of associated illnesses/diseases/conditions were endless. We returned to Addenbrooke’s for further consultations and we were referred to a raft of professionals, geneticists, play therapists, educational psychologists, surgeons. Glaucoma and blindness kept being mentioned, it was clear he had no vision at all in his right eye, not even light sensitive but it was hoped his left eye vision was good. They now called it Peters Anomaly, this still had the same associated problems: learning difficulties, developmental problems. Every appointment brought more worries and less answers. Then they discovered the pressure in his eye was too high, they tried drops to no avail so decided that laser surgery was the best option. To perform laser surgery on a baby would require general anaesthetic which came with its own risks and for those few hours I was the most scared I’d ever been.
His big blue eye became unnoticeable to us, and despite the overhanging fear that he would not develop properly he seemed to be making good progress, doing all the right things, ticking all the developmental boxes along the way. We were seen, on average by a health professional of so,e description every 4-6 weeks. The constant scrutinising always left you with a nagging feeling in the back of your head. Was he developing well, is he developing properly? It did not spoil our enjoyment of seeing him grow in those first months, but whenever we think back now, it is one of the over riding memories. Another is the looks that cruel people can give. The staring, the whispering, the very unsubtle double takes. We soon found that the general public are on the whole, quite ignorant when it comes to appearances that don’t fit the norm. It also came as a shock as how cruel adults can be, we always half expected children to be inquisitive and blunt, it is their nature, but we never expected the adults to be so rude or downright cruel. Actually making an effort to come across a shop floor to stare and brazenly “eewww” in front of us as if we weren’t there. To hear them discuss our child as if he was a zoo animal was both infuriating and heartbreaking. It was because of this, at 4 years old we made the hardest decision yet.
The laser treatment was not working anymore. We could return to drops, but they weren’t working very well either. The option of removal was discussed, big surgery life changing for him, to deal with such a big thing at his age was unfair, but to constantly get the glares and comments that he was now starting to understand was more than we could bear for him. We had seen many specialists along the way and slowly our fears were being allayed. There didn’t appear to be any developmental problems. No signs of autism, learning difficulties, scans of his heart were clear, MRI scans of his head and neck showed a little enlargement but were otherwise normal. His condition lengthened to “anterior segment dysgenesis with peters anomaly and axenfeld syndrome” and he also had nystagmus and now, on top of that, we made the decision for him to have his poorly eye removed. This was a balance of medical need as well as future cosmetics. We met a lovely surgeon who advised, guided and helped us through the decision and on one valentines day he went for more surgery, this time a long, big operation.
Our pagers went off and we rushed to the recovery room and heard him screaming as soon as we came through the doors. Our helpless, scared, disoriented baby, 4 years old, heavily bandaged around his head. We had made the worst decision, the wrong decision. What had we done to him, causing him this hurt. I felt sick inside and I know my wife did too, we didn’t discuss it for a long time, both of us scared to admit how we felt. We both felt helpless to do anything for this little boy now screaming in the massive hospital bed, a recovery nurse trying to hold him still. Why us? Why our precious little boy? The nurse gave him pain killers, strong painkillers and he eventually settled and we went back to the ward and he slept, for what felt like an eternity. He slept so long we began to worry. The nurses, casually, told us he was sleeping off his anaesthetic but as nurses ourselves we knew something wasn’t right. My wife demanded the doctors be called and when they arrived, they agreed something wasn’t right, he’d slept too long. They gave more painkillers and within half an hour he was awake within the hour he’d nibbled some food and was looking for toys to play with. Oh the relief! The doctors told us he must have been in so much pain he kept himself asleep. Guilt stung me again. Pain I’d brought about him for choosing this for him, as much as I knew in the long run it was the right thing to do, at that moment I couldn’t help think I’d done a terrible thing. But our boy was resilient, his character, growing bigger and stronger each day helped us come to terms with things too. At 4 years old he was strong enough in spirit and personality to deal with everything around him, with enough left over for me too. He had learnt to deal with his vision problems himself, he pulled tongues at those adults rude enough to stare, shaming them in to turning away. We learnt the vision in his left eye was poor and he required strong glasses to help him see, it was hoped that his eyesight would improve but for now it meant perception and balance were an issue. Everything became a hazard. Shop rails, trolleys, railings, lamp posts all got bumped in to as he couldn’t see them. Distinguishing between steps and change of surfaces, still today, causes him hesitation. Hand eye co-ordination takes a lot of concentration. But his biggest challenge was to come.
The appointments at Addenbrooke’s were less frequent and were generally good. He was stable as far as his vision was concerned, glaucoma drops were stopped. His right eye prosthesis had healed well and the four different drops 4x daily also stopped and he was ready for a proper shell for his eye. He had been wearing a plastic clear shell to help keep shape while his eye had been healing, but now he was ready for a proper prosthetic eye. However, we had been very unprepared for how this was going to happen. The first time he met the prosthesis specialist she did not speak with him. I am undecided as to whether it was he closed, intimidating manner that started his screaming, or the handful of false, but very real looking eyes in her hand that she thrust at him. Either way, scream he did. He also ran away and tried to hide. Whenever I have ever seen a toddler cry, I have always tried to calm them down and try to engage them in an age appropriate way…. Rather than huff and puff and tut, as this very unhelpful lady did. Fearing that not having a shell or false eye in place would affect the development and shape of his face, we persisted through gritted teeth and reluctantly held down our kicking and screaming son so he could be fitted with a false eye. Inevitably the match was not particularly good and he ended up terrified of her appointments. This in turn also made him terrified of anyone, including my wife and I, from touching his eye. Being unable to take an accurate mould and colour match made his eye not quite the same, which in turn made the prosthesis noticeable and, made the whole process pointless as people continued to stare at him growing older he began to be aware that people stared at his eye, that people ,are comments to him or about him. He started having trouble at school being unable to join in PE games, ride bikes. He found it hard finding his friends in the playground and got startled when people appeared on his blind side. We found it incredibly hard to see him go through these struggles day in, day out. To console his crying and frustration when he couldn’t do something. Even walking in town, when he stopped and tried to step down the “step” when the path turned from paving to tarmac. It hurt me, I could only imagine how he felt inside.
We found MACS online some years earlier just googling, it was a charity for children with visual problems. Children with underdeveloped eyes, an amazing charity we were to discover. Through their website we learnt more about the problems with eyes, and discovered that some of the problems they specialised in we’re the problems Evan had. My wife contacted them and we were overwhelmed, in a good way, with the support and advice and help they gave in emails, forums and over the phone. We plucked up courage and went to a family event and were amazed to find that there were children out there, not far from us with the same problems. They knew the things were were silently going through. They had been there too. The relief and emotions both my wife and I had at finding these families that lived their lives as families, not around this one condition made us feel so happy. Through the, we discovered better artificial eye care, we gained confidence, we challenged and found a lady who was lovely, that spoke to Evan and made him confident. After a few visits he felt brave enough to have his eye taken out and cleaned with barely any fuss. We thought back to one of those early appointments where 3 of us held him down and were so proud of the progress he made. Our courage grew and we went away with the MACS families for a weekend. It was truly one of the hardest, saddest, happiest weekends we’d had. Memories and feelings flooded back of those frightful early days when there was no future and no answers and we both sat and cried, cried about everything both Evan and ourselves had been through, about the relief we felt at seeing Evan able to relax and play without being stared at, or questioned, or laughed at or pointed at. He could be a little boy and forget those things that hung around him. It gave us hope and confidence meeting those families, on days out previously and at the weekend.
Evan is still fighting his condition everyday. New problems face him everyday, he takes them in his stride these days but I don’t forget the nights we’ve cuddled and he’s cried because he’s “different”. He’s not different. We know that, he knows that, but there are still people out there who can’t except things, people Evan will always have to deal with on top of everything else. He is a confident boy, but equally very shy. In new situations he is very tentative, he has to sum up the whole situation before he’ll join in. He never says, but I know he’s waiting to see if people/ children are going to be nice to him or horrible before he joins in with something. On the whole, people tend to be nice, but occasionally they are nasty. It is easy to forget people’s capacity to be cruel, or at least it is when your appearance is “normal”. Evan doesn’t forget this, it is always in the back of his mind. It is always in the back of his mind that he is slowed down by his condition. Not restricted, because he can do anything he puts his mind to, but slowed down as it takes him longer to work it out, to make his own strategy as to how to problem solve. But once he’s done it, he’s away! He is an inspiration to me, because he ploughs on regardless and at the end of everything is a big beaming smile. Which brings us back to today.
Wednesday night I had the pleasure to attend the local theatre, not least because my son was taking part in the show. He didn’t have a huge part, but had a few lines to learn. The impressive part for me, was that despite everything, the looks, the comments, the self confidence, the anxiety about his appearance, despite all that he had the courage to get on that stage and perform in front of a packed audience. The icing on the cake was he had an amazing time, after the show he was so excited, the shy, self conscious boy was on a real high, hugged us all, aunts, uncles and even his older brother! He had a fabulous time and it was all his own work, he put himself out there and discovered people looked past the obvious and accepted him as he was.
That made my chest bulge with so much it hurt.