My chest is exploding

July 11, 2013

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.

Randomness

June 29, 2011

I’m not a big blog writer, as you may have noticed by my small back catalogue. I’ve posted a few things but they aren’t really ‘blogs’. But I figured I could give it a proper go, make an effort etc, I mean… How hard can it be, it’s just like talking but written down! And I talk all the time!

So here it goes, my new blogging effort…. Erm…. What is there to blog about?

Weigh To Go

July 12, 2010

I’m trying to lose weight. It’s not easy. A traditional upbringing has led me to believe that plates should be full at the start of a meal and empty at the end, and that is how I’ve eaten since I could remember. I’ve always enjoyed food too! Cooking it as well as eating it. So attempting the controversial Cambridge diet has been a bit of a personal challenge.

I’ve tried various diets before, low fat, high protein, cereals, Mediterranean, see food (I won’t elicit the obvious groan with the punch line to that) but I’ve never been able to crack that bad food craving. I always end up eating stodge, or sausage rolls, or sausage baps. Once, mid-diet, I tried a recipe gleaned from Supersize vs Super-skinny… A large cheese topped barn bap, smeared in mayonnaise filled with two sausage rolls and more cheese! Now bear in mind this was DURING my diet!

I’m not particularly large in stature, I’m 5ft 7inches tall (or just over) medium build. I used to weigh 10st, but as the marriage and contentment settled in and shift work took over my life went from eating little and often and playing sports everynight to loading with carbs and fats and either being at work or on the sofa recovering from work. Sport slowly petered out. My stomach, however grew… And grew…. And grew. But the strange thing is, I never noticed! When I looked down that gut always seemed to be the same size. Never appeared to be much bigger. Then one day, trying clothes on in Next I noticed in their hall of mirrors that is a changing room that my body resembled a melted Michelin man.

I weighed in at 16st 7lb and all of a sudden I was a fat Dad. I noticed I got out of breath getting in and out of the bath. I was never cold. My clothes had slowly gone from fashionable to industrial. I no longer had a sideways!

I tried in vain to diet and exercise, but my large frame made jogging painful and the dieting was always short lived due to lack of will power.

Then my wife started dieting. I honestly thought that my wife didn’t need to lose weight but she started to anyway. And she looks good. REALLY good! But it wasn’t that that has motivated me, nor seeing the constant flow of unhealthy patients through work. It was wanting to do it for my wife. Supporting her through what was obvious a very difficult process of changing habits and sticking to her strict regime made me proud, she put herself through hell in order to achieve what she wanted and it is that that has motivated me to achieve it too.

And so I have embarked on the Cambridge Diet. Spurned and belittled by many, approved and promoted by others it ultimately comes down to personal choice and will power.

I’ve stuck to it, despite how bloody hard it is to not eat and watch those around you eat pizza and kebabs (you know who you are, you shits!) but I’m getting there. Old clothes, long tidied away have been brought to life again. My uniform, instead of being tight, is now loose, very loose! Shorts I bought last summer, that I couldn’t get near to doing up, are now baggy! I feel good, starting to look good and people are noticing. And despite protestations about “skin deep” and “what’s inside that counts” people do just bracket you as fat. Although I’m not suggesting I’m big boned or have a glandular problem, people look at you different, especially around food. Innocent comments that sometimes come out a bit barbed about you and your eating habits do, eventually, wear you down.

But no more, for me at least, I’m getting there, still a way to go, but I’ve not felt so motivated, positive or accomplished about things for a while. Soon I will be slim enough to fit into fashionable clothes again, will be able to enjoy being topless and relaxing on the beach again, can play sports without wobbling for a week after again! Soon the world will be my (low calorie) oyster again.

And I can’t wait to have a burger to celebrate!

Old Man

July 8, 2010

Originally posted May 30th 2007

I’m sick, and I’m a man, so it’s bound to be something far worse than the cold my wife has had! I also have a Wii-njury. Too much Wii Golf and baseball can give you a bad back! It’s surprising how much energy you invest in swinging that bloody ‘bat’ only for it to be a foul ball AGAIN! My son seems to casually flick his wrist whilst sitting down simultaneously playing his PSP and still gets strikes, homeruns and holes in one, while I’m stood in his room, flailing my arms about like an epileptic monkey on crack and scoring no points what-so-ever! I really am past it! It’s a special moment for a father and son. When the age comes about that you finally beat your Dad at something. Your Dad is iconic as the man in your life that knows everything from putting up shelves, intimate knowledge of ball valves, can save penalties from Maradona, score 6’s all day long and can undo ANY jar lid. He is, essentially, a super hero. But one day it happens. That vitally important day when you beat your Dad at something. You know then that one day for sure, you’ll become the Alpha male. I never gave my Dad any thought the day I was able to re-wire some electrics he couldn’t manage. Or when I beat him at pool, or mini-golf. Or when I pointed out he had the controller upside down and that’s why I was winning 8-0! I was too busy lost in my new found pride, that I had been able to beat MY DAD! But now I’m a Dad and I have come to realise that over the years I have had the answers, I have dealt the 8-0 defeats and I have put up the shelves but this supremacy is crumbling. Quickly. My eldest boy comfortably beats me at most games as I fumble with the stupid controller (which is obviously broken and the reason I can’t do it. It can’t be me!). He knows the questions on quizzes that I pretended I knew (well it’s been a long time since I did Geography, and he’s doing it everyday!). He is also nealry taller then me. My reign will soon be over. Last weekend I was already reassigned to taxi driver as I sat outside an Indie Night, freezing in my car wishing I’d worn a coat as well as my sensible jumper, hoping he wouldn’t be long as I wanted to go to bed!

It’s a good job my youngest son can’t yet manage jar lids! I can keep my cape on for a few more years!

Cold Callers

February 10, 2010

I was thinking about people. Generally most people want a quiet life don’t they? I mean on the whole, with the exception of those moments you let off steam. There are, I acknowledge, a few anti social people who derive pleasure from unprovoked violence, arson, loud noise and aggravation and telephone sales. Now the first few on the list are covered by some sort of authority but the last one however seems to have a free reign to cause misery and frustration in equal measure with no thought for anyone other than themselves and their stupid company. And they all seem to have my number!

I just don’t understand them, particularly when they just won’t take no for an answer. I expect a little pressure, as that’s their job, but some seem completely psychotic and unable to grasp the concept of NO! For instance I was repeatedly called from some mobile company asking me about upgrading my phone saying they could offer me a better deal. At first I thought it might be a good way of saving money so humoured them. Their offer was actually to upgrade me to an inferior phone that I would have to pay more money a month than I already do! I politely declined the offer, stating my reasons and that’s when it began….. The haggling! Except the sales guy either didn’t understand English or was released early before his medication had taken full effect! Trouble was I’m no good in these situations an I can’t help going along with it. I need to learn to just hang up! This is how the conversation continued!….

“Ah, but does your phone have Bluetooth, sir?”

Yes. It does so I’m not intere….

“How about a 1 megapixel camera?”

I have 1.3..

“But sir, you can get this phone with 64mb of on board memory for your pictures”

My phone has 128mb plus a 2gb memory card. I’m not interested so…

“But sir…”

Why am I being so polite?! Just put the phone down!

“Sir, what if I told you you could have this phone for just £30 a month!?”

Wow, £30 a month? So a worse phone for £5 more than I already pay? Great!

“OK sir, how about this. I’ll do you a deal for £25 a month plus 100 texts

“I’m sorry, I’m not interested, and anyway I get 300 texts plus I don’t want the phone! Just bloody hang up you fool!

“Well you could give the phone away?”

Well what’s the point in upgrading then?

“Because you can save money”

But I’m not!

“Well what could I offer you to make it worth while”

Shit, I wasn’t expecting that, how do I politely get out of this. Hang on why am I being so polite, this guy has interrupted my day

“Sir?…”

“Yes, erm, nothing, I don’t want anything thank you”

“So you aren’t interested in saving money?”

“No, that’s right, I’m not so you’ll have to go” You’ll have to go?! You dick!

“Do you work for your money sir?”

I beg your pardon? Yes I do Why are you answering these fucking questions?

“And do you work hard?”

Harder than you, you shit Yes Stop talking to him, hang up, stop being so polite!

“So you would be interested in saving your hard earned money?”

Ah, this’ll fuck up your patter No, erm, not really Ha ha, the upper hand comes my way!

“You don’t?!”

No, I er, I like wasting it! Why am I still here, I should be getting in the car and going to town, just hang up!

“I can give you line rental for £15 a month and 250 texts…”

Nope, not interested Why am I sounding like I have the upper hand, now I sound like a mental twat

“£1 a month”

He’s taking the piss out of me

“I can give it to you for £1 a month plus 250 texts a month and you could give the phone away”

No thanks I’m still not interested

“Ok sir, is there anyone else in the house I could speak to?”

He thinks I’m mental, he wants to speak to my carer! What a fucking arsehole. Hang up now!

No, they’re all out Just hang up!

“Will they be back soon”

He thinks I’m a danger to myself!! Yes, they’ve just gone to the shops No they haven’t, why are you lying!

“O k siiir. Thaank Yoou for yoour tiime”

Is he really talking slowly to me?

“………..”

He’s fucking hung up on me! The bastard! He thought I was a mentalist! He’s probably phoning the police and social services right now!

The Yawning of a New Age

January 13, 2010

A few years ago, during one of those post pub deep and meaningful conversations, a friend posed the question.. well, slurred the question “Why do people yawn when they see other people yawn?”. Being a geek, a few days later when I remembered this question I looked it up. The best theory I found was an evolutionary answer. It is believed that yawning originated when Men were hunter-gatherers and used to track animals for food. When hunting in packs it was essential that all members of the pack work in synchronicity. This meant that when one member yawned, the other members of the group yawned too to that all members were taking in fresh oxygen to make them alert and prepared for the kill, as not to let the prey escape. And this theory is still relevant and in action today, although generally humans don’t tend to stalk and kill animals for their supper, you can still see herds and groups of men in Sainsburys’ and Tesco all yawning together!

Thinking about this randomly recently during a coffee break, I discovered the New Yawn! An instinctive action, that one person does and then you can witness it ripple around the room, just like a yawn does… What is it? Checking your mobile phone!! Many many times have I seen one person check their screen for a message then a few seconds later, another little fumble and a cursory glance to see if their are any calls or messages. Soon everyone in the room with a phone will have taken it out and checked it! Not just rooms, public transport too, bus queues, supermarket queues, pretty much anywhere that people gather there will be the New Yawn Effect!! It really is the 21st Century Yawn – ensuring that everyone is synchronised with everyone else!!

Hello world!

December 24, 2009

My first, kinda, official blog! I might very well post some notes in here from facebook or myspace to get the party started.

So, Christmas Eve then? It’s 9.30 pm and I’m pretty shattered and I have all the wrapping to get done. Not fantastically pleased with this situation I can assure you! There’s something about wrapping that seems like such a great idea until you actually start doing it. Then it’s just a fucking royal pain in the arse! Tape, scissors erm… Paper. Simple surely? But then it gets complicated when the gift is involved! My wife wraps presents like Father Christmas! They look awesome! My presents look like they were wrapped by an epileptic monkey on crack. Is it taught in school? The same day as when they were taken out of class for ‘a talk’? Or is it genetic, like being right?

Anyway. First blog done. Now for some angry wrapping with the reward of a mince pie, carrot and glass of milk! Must keep up the pretense!


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