Then The Boy Did This!

Is it time to move forward?

Never tell a child they can’t do something, always, always let them try. Anything they want to try, any goal they reach for, stand at their side and reach for that goal with them. Let them know they have you, all of you for as long as they need you and they will give back to your heart in spades! – Mum. Me.

They will give back to your heart in spades if you let them be themselves.

That’s what the boy did. He gave it all back to my heart in spades. He found a new direction, not even from the ashes of the old one. That was gone, never to be resurrected. The boy was now wheelchair bound and heading towards those awkward years neither a child nor a teenager, he was 11.

Difficult transitions all happened at the same time.

His baby face had gone and a young man was appearing before my eyes. But I would always think of him as my boy. Even though he was now taller than me. I stand at 5ft exactly in my bare feet. He was and still is, proud of his height and physique. He worked hard to get himself as fit as he is.

Just before he started High School in the September of 2001 a leaflet was posted through my Mum’s door. It was advertising a Disability Sport Fun Day and it was to be held the weekend before the new term began and it was to be held at his new high school. My mum said, why not go? Check it out, at least he can see the school while he’s there if nothing else.

I handed him the leaflet fully expecting him to throw it to one side but he didn’t. He read it, and then put it down. I didn’t ask him what he thought, I figured he would tell me in his own time. He did.

‘Mum, that leaflet you gave me, the Disability sport thing?’ He said.

What about it? I asked

Can we go? He said

Yes we can go, when is it? I was cautiously optimistic.

It’s tomorrow. He said.

So tomorrow came and we went. We arrived in good time for the start of the event. It was set out in different categories of sports, track and field events were outside, wheelchair racing was outside, wheelchair basketball and boccia were inside along with archery and table tennis. He tried out the track and field events first, he was quite excited to meet members of the different GB squad members. He had questions for all of them and I watched him soak up the information they gave him. He collected information, leaflets and had a go at each sport too. Coaches approached from all sides, he was good. He could throw a javelin a fair distance, he also threw clubs, a shot putt and had a go in a racing chair. In short he had a blast and appeared to be emerging as a natural raw talent.

Coaches came and chatted with him, tried to encourage him to join them, but he wasn’t convinced. He had just come out of a really rough time and I think he was just looking to have a bit of fun for once.

He said he would think about what they were offering and then he disappeared inside the sports hall. I followed him in and then sat on the side lines and watched as he began chatting with a GB women’s basketball player who was there demonstrating and hopefully recruiting fresh young blood into the game.

She took him away to where the different basketball chairs were banked and she found one that fit him. He transferred with ease and strapped himself in. She put the basketball in his hands and showed him how to push the chair and bounce the ball at the same time. He was hooked. Sucked in, completely absorbed by the sheer freedom that basketball chair gave him. It turns out, he can clear a rubber floored full length basketball court in just under 8 seconds, on wood he would be classed as a speed demon. She signed him up for her club and we were now embarking on his newest adventure. He was going to be a wheelchair basketball player.

I had a little chuckle to myself as I thought back to that fateful day with Ms J the snotty physio, that had started the dancing rollercoaster ride off. How she had declared emphatically that his future was in wheelchair sport. Well, it turns out she was right but it wasn’t on her terms, it was the boy who had chosen and in his own time. His life his rules, no one else’s.

That first year was all about the training, learning, making mistakes, sitting on the side lines and watching the team play their matches week in and week out, learning the correct posture for shooting, how to position the chair to avoid contact with other players. How to be in the right place at the right time, how to pass, how to catch all while on the move at roughly 20 mile an hour! where to aim on the backboard for a 2 point or 3 point basket. How to be a team player. He learnt it all. So did I.

The Boy was 12 now and it was his first match for his team and he was sat in his colours, prouder than I have ever seen him look. He was desperate to get on that court and play in the match but it was highly unlikely to happen just yet. He was content though because he had made the team even if it was only as far as the bench. It would just be a matter of time.

Well, that time came sooner than either of us expected, one of our players was fouled out of the game and we were short a big forward. The boy was no longer short in body, he was reaching a good 5 and a half foot in height. Sat in a forwards chair this made him extremely valuable on court. He was on! Coach called his number and he took his position. I could see his nerves and then I saw him control them and go into his ‘zone’. Damn! It was the finest moment of my life! I saw my boy reach for his dreams again with both hands.

I wish I could give you the blow by blow details of that first match, I can see every second of it in my mind’s eye, but I would be writing forever and if you don’t know basketball then you would probably fall asleep reading! I wish I could show you just what this beautiful game gave my boy. All I can say is, it gave him his life back and on his own terms and in full glorious colour!

He shoots… HE SCORES!!

He took two shots at the basket and scored one. That first basket is still the best one as far as this proud mama is concerned. He had taken every single thing he had learned over the previous 12 months and applied it in that 8 seconds of shooting time. He shoots! He SCORES! THAT’S MY BOY!

Don’t ask where his father was, you already know the answer. But remember this, we now preferred it this way.

My perfectly imperfect boy was on his way once again.

THAT’S MY BOY!!

All images courtesy of the internet.

The Boy is a Phoenix Rising.

His dreams are ashes around his feet. His legs are so thin these days he has to wear moulded plastic AFO (leg splints) to protect the bones from breaking.

AFO’s to protect his weakened legs

Worse than this, my beautiful colour filled boy is becoming black, white and grey. His head is bowed. He never watches his Michael Flatley videos anymore, he refuses to watch anything that will remind him of what he has lost.

We all do the same thing don’t we? Turn away from the bright light that we used to love, it hurts our eyes now, switch it off.
Life has gone very quiet of late. This adjustment period is breaking my heart but there is nothing I can do. I support him, I talk with him, I cajole a smile out of him, we play cards, we play Rummikub and he watches NBA Basketball videos.

I asked him if he would like to try something new, anything, join a club, make new friends, he just shook his head, shrugged and said, ‘what’s the point, they will just mess it up for me again.’ The ‘they’ in this statement were quite simply the medical profession.

they mess everything up

Appointments these days are over very quickly. No longer does he have to go through rigorous physio exercises, he now goes in the hydrotherapy pool to relax his seized tendons and muscles, he hates the water. He hates being surrounded by it, submerged in it, he panics and is desperate to get out. I have to go in with him so he feels more secure. I have no idea where the fear comes from but it is real and he is distraught. I ask him why he doesn’t like the water, his reply floored me.

They might let me drown Mum, they don’t care about me, they might leave me alone and I could drown.’

they might let me drown

I’m fucked. I can’t in all honesty reassure him that his fears are groundless. They’re not are they? So I go in the hydrotherapy pool with him. The physio (a new one, the old one was removed from his case) is most upset with the arrangement and tells me ‘you have to give him some independence mum, he’s a big lad now, nothing is going to happen to him here. We’ve got him, he’s perfectly safe.’

Really? I mean fucking really? How many times have we heard that in the past 10 years?

I nod at her and smile in a very disinterested way and disregard her instructions completely. She has been previously warned about me and she picks her battles wisely. She removes herself from the poolside and sits at her desk in the corner and scribbles copious notes about our little head butting session. Who gives a shit? Not I.

I go into the pool and I do his session with him and we alight from it 30 minutes later, none the worse for wear. I can’t be arsed having the pointless discussion with her. I can’t be arsed explaining it to her, it will fall on deaf ears and she will trot out some trite reply that is meaningless. There is no point to it. She is too late to the party to warrant an explanation. She is one of them. Not one of us. No trust in her, no trust in the establishment behind her. We are on our own in this and we will survive despite them.

We go to the Orthopods for a regular check up. It’s another New Man these days, the old new man was removed from the boy’s case. My request of course, and he was less than best pleased with it. But the threat of a law suit made them see sense. I don’t converse deeply with the new man, he’s too late for that party too. No trust in him or the establishment behind him. A different hospital, but the same shite attitude toward best patient care.

Such a shame isn’t it? I felt the need to go to those extremes to get what I need for the boy they all promised to look after properly. I had to threaten to sue.

Our Paediatrician is the only Doctor left from the original team now, the only one who shows true diligence in his work where the boy is concerned. I discuss at great length with him the boy’s new fear of water and where it comes from. The Doc is as floored as I am. He can’t comment, it’s more than his job is worth to break rank and speak out against the lumbering machine. He makes an appointment for the boy to have counselling to enable him to come to terms with the severe and sudden changes in his life.

Fuck me, the woman is a complete nightmare! She prompts him, rather than letting him use his own words, he is on it and he tells her what she wants to hear. He sees the shortcut and an easy way out. He uses the words she feeds him and he remains locked inside himself with his grief and growing mistrust of the very people who have promised most faithfully to care for him and keep him well. He has learned how to play the game and he is better at it than they are. The counselling sessions are a bust. But we do them, because we must.

So you feel bad because you have to use a wheelchair do you?

Throughout the remainder of his 10th year and leading up to his 11th birthday he had three stays in hospital that were emergencies. The last one resulted in surgery. His shunt had blocked, and he had a raging headache, vomiting, he couldn’t focus, he could barely speak and he was too tired to stay awake.

Blue lights once again took the boy back to the hospital. After an MRI on his head, it was determined that it wasn’t the shunt that had blocked, it was the tube that runs off it had developed a crease and was stopping the flow.

How had that happened they wondered?

We went through his activities, it was a short list these days. We went through his appointments, a much larger list, and then we mentioned the hydrotherapy pool. The doctor raised an eyebrow and gave me a questioning look, how hot is the water? he asked. Well, I go in with him and it is tolerable but probably somewhere around 38-40 deg.C.? It needs to be hot to do what it needs to do. He nodded his head and agreed with some mmm, mm, mm. Makes sense, but he can’t use the pool anymore, I think the heat may have caused the tubing to swell and when its contracted it has creased. We are taking the old tube out and fitting a new one. He should be greatly improved when he comes round from the anaesthetic.

the tube is the problem this time

He was back to his old self, and I do mean that literally. He had colours again. Gone was the black and the white and the grey. He smiled at me when I walked into the recovery room to see him. ‘Hi Mum, I feel great.’

He promptly fell asleep again which was entirely expected, and timely, because I took that moment to cry, a lot. I am so constantly afraid these days that I will lose my boy. I am terrified he will not wake up from surgery and that’s it, lights out, game over, not just for him but for me too. I can see no way clear to surviving without him. He is integral to my very being. Without him I will fall and not care where I land.

But not today. Today he is just sleeping and I can stand down for a little while. He gave me his colours again. He is a Phoenix on the rise…

A light at the end of tunnel? We’ll see…

Is that a light? We’ll see…

All images courtesy of the internet.

The Boy and his 15 Minutes of Fame

Millenium Children of Courage Award.

‘You should have come Dad, everyone loved it.’ Those were the words the boy said on his arrival back home after his dancing debut and his acting debut. His father never saw him act, he never saw him dance, he never saw him, period. Don’t get me wrong, we were all living together as a ‘happy’ family. If others were present then the husband would put on a show of doting father. If they weren’t, it was ‘just give me five minutes for a fag and a brew.’ Or, ‘I’m busy, go tell your mum.’ So the boy did, and he gave up trying to speak to his father.

The narcissistic father didn’t mind accepting accolades about ‘his’ son though, because the boy had been noticed and people were talking about him. He was in the local newspapers, Dancing Boy Defies Disabilities! His father was quoted as saying, ‘all I ever wanted to do was play football with my son, I can’t do that but we all pull together to muddle through.’ Yeah, they actually quoted that shit in the newspaper. It ruined the whole thing for me. Not for the boy though, he fixed the problem with a pair of scissors and some sticky tape. That quote isn’t on his page in his scrapbook! I could take a few lessons from him I think!

That’s my boy!

He was headline news for a week during his debut in the summer show. He headlined again for his role as Tiny Tim. Here was a feel good story that everyone could love. Except his father of course. ‘What they making such a fucking fuss for? It’s not like he climbed a mountain or anything is it?’

YES HE HAD! HE HAD CLIMBED A FUCKING MOUNTAIN! He had climbed the HYDROCEPHALUS MOUNTAIN and conquered it! But the father couldn’t see that because he was unaware of the depths of the struggle the boy faced on a daily basis, he was unaware because he didn’t care.

The boy and I became a tight knit little unit of two, we planned and we plotted and we laughed and we played, always just the two of us and when the idiot came home we would just take it into a different room. The parting of the ways began there. It would take another 10 years before it all finally broke but this was the start of when me and the boy first pulled tightly together as two and pulled away from the poison. It was better this way both for the boy and myself. It cut out the need to ask and be rejected. We rejected him instead.

Regardless, things were moving quickly for the Boy now. Remember the Dickens old lady from my previous blog? she of the continuity issues? Well, turns out she was so mortified by her misreading of the situation, she and her friends wrote a letter to a Women’s magazine. The magazine was running a feature called, Millenium Children of Courage Awards. The ladies had nominated the Boy.

A lady from the magazine rang the theatre, the manager was ecstatic and gave her my home phone number. I took the call at 9pm in the evening. It was surreal. I thought it was a wind up and I did ask her if someone had put her up to this because the boy had been in the papers recently. She said no, he had been nominated for living an ordinary life despite the extraordinary circumstances. He had been shortlisted for the award.

I was shell shocked. I kept the news to myself for a whole week until I found out via a written letter of invitation, that he had made the final 11 who had been selected to receive the award.

He was going to London in December, to stay in a fancy 5 star hotel for 2 nights, he was to meet the Prime Minister. He would go to Westminster Abbey to receive his award from the Duchess of Kent. He would then lunch in the House of Lords with celebrities from all genres of the arts and sporting world. In short, he was going to have the TIME OF HIS LIFE for two whole days straight!

Of course, as his parents, we got to go along with him to the event of his life. I remember not having a decent dress to wear for the awards ceremony and my mum whom I adore, took me out and bought me two suitable dresses, one for the day time and one for the evening. His father lapped up the attention, chatted with celebrities such as Vinnie Jones, Joan Collins, Chris Eubank, some soap stars and football heroes, he mixed with them all and he accepted the accolades about his fabulous son and he told them all how ‘we’ as parents had both worked really hard to give the boy this normal life he now lived.

Meh… when you have to ride on the coattails of your disabled child in order to steal his glory, there is something wrong with the way you are wired up.

The boy, being the boy, was not much affected by all the fuss and fanfare of the occasion. He took it all in his stride and held court with his adoring public. And they did adore him, the prime minister was no exception to this state of affairs. The boy had gone with the other children to meet him and they were given a can of coke and a biscuit when they arrived in the drawing room of 10 Downing Street. The Prime minister walked around with his cup of tea talking to each child individually. When he reached the boy, he put his tea down on the table next to him. Now, this all sounds quite banal and a pointless observation to put in here, but it wasn’t and it isn’t.

You see, whenever the boy had been to see his orthopaedic surgeon, they would chat about how to prevent excess weight gain brought about by drinking fizzy drinks and eating sweets. The surgeon had pressed home the importance of you are what you eat. The boy worshipped his surgeon and so did everything he told him to. He refused all fizzy drinks and sweets but was partial to a biscuit or two.

Back to the cup of tea. The boy had a biscuit, a pink wafer biscuit that he was nibbling on. It was dry and he is a biscuit dunker by nature. Well, you can’t dunk a biscuit in a can of coke now can you? A cup of tea was called for, and oh look, one has arrived!

DUNK! The Prime Minister laughed loudly when he saw the floaty bits of pink wafer in his tea. The boy had eaten the remaining evidence and was looking angelic. The staff from the magazine were running around with their heads up their arses, what a gaff, what a… The boy looked at me and said, ‘My biscuit was too dry mum, it’s just a cup of tea. PM didn’t mind, look he’s laughing about it.’

I have children of my own he said, perfectly natural thing to do. He and the boy bonded over another biscuit and a chat and then it was time to leave. He had made his mark on the UK Prime Minister.

By the time we arrived at WestMinster Abbey, his father, who had not been allowed to attend Downing Street, (only 1 parent per child could go, the boy chose me) had already heard about the biscuit incident and he was less than impressed. He was furious because he had been embarrassed by this son he had publicly claimed as his pride and joy.

The actor who was reading the children’s citations hurried over to the Boy and myself and asked if he could add the biscuit story on to the end of the Boy’s citation as it was such a lovely normal thing to do, the public would love it! I shrugged and said yes of course although it was just a biscuit…

That bloody biscuit made International headline news! All the papers covered the story in one form or another. The boy was about to receive his 15 minutes of fame! Our lives became a whirlwind of interviews, photo ops with famous people, a day out in London provided by the News International group. He was made editor for a day at the sun newspapers, he got a secluded viewing of the crown jewels arranged for him so that he could go in his wheelchair and have a good look. He had three burly Beefeaters keeping a watchful eye on proceedings the whole time! He was given £500 to spend in the biggest toy store in London, Hamleys. He went in and went wild, spending the huge amount of £20.00 on a green power ranger. That’s it. That’s all he bought, he wanted to save the rest to pay for more dancing lessons and new tap shoes when he needed them.

This is my boy of whom I am most proud!

All images courtesy of the internet.

Hospital, Surgery and the End of A Dream.

Here we are again, the boy is now 10 years old. He has had what is arguably the best year of his short life. He has been a child, he has danced, he has acted he has shaken hands with royalty, supped tea with a prime minister and fine-dined with celebrities in great historic buildings. He’s visited the crown jewels and the most famous of toy stores. What more could a boy want?

His legs to work.

His tendons are too tight in both of his legs, they need to be released, he is now walking on tiptoe and he is using his wheelchair more and more often. He has no pain, it is part of his condition. But, he is struggling. He is tired with the effort.

An appointment with the orthopods has determined that surgery is the only way forward or the boy will stop walking completely. The operation date looms, it’s exactly one week after his 10th birthday. He will have both legs operated on to reduce the impact of anesthesia on his system. We faced a rather large problem with this surgery, his orthopaedic surgeon has now retired and we are dealing with the New Man in his place. The boy is greatly unsettled by the change and is struggling with the idea he will not see his friend ‘the boss’ anymore. This is the second orthopaedic surgeon he has come to trust who has retired from his position. It’s hard for the boy to comprehend.

The New Man is brusque in his attitude and inept in his ability to converse with children. Strange considering he is working mainly in children’s orthopaedics. A prosthetics man has been called in to work on the new team, GG is a diamond and is instrumental in creating a much smoother transition for the New Man with the boy. The boy likes GG, he’s met him before and they have a shared passion, NBA basketball.

New Man
Worry and worry and worry…

Surgery day arrives. I could tell you the ins and outs of the hours and hours sat waiting, and walking, and waiting and sitting and worrying and worrying and worrying and… we shall leave it there.

The boy is in recovery, his surgery is over and the New Man is quietly optimistic that it has worked once again. The boy’s legs are casted and he is encased in plaster of paris from thigh to toes on both legs for 6 weeks while the tendons heal and the stitches dissolve.

Both legs, from thigh to toe, casted.

Have you ever worn a cast? Broken an arm, or a leg, or an ankle? That six weeks is such a long and irritating time for anyone in that condition, even more so for the boy. He is 10 and can’t get back to his dancing, he can’t go to his new acting lesson, he can’t go to school, he has a home tutor for 3 hours a day, the rest of his education is on my head to teach him.

We are back in the world of the medical professional knows best. But he doesn’t does he?

The professionals know best dear…

You see, the New Man was not only inept in conversing with children, he was also inept at choosing a decent registrar to complete his work. The old surgeon, the boss, would never have done this, but the new man is too busy to set casts! He’s a surgeon you know, he can trust his man to finish up with the mundane task of casting!

Within two weeks of the casts being set on the boy’s legs, there was a problem with his foot. His toes were going purple. This obviously meant that circulation was poor, I took him back to the hospital and had them take a look. No, no, no, they said, that’s his condition causing the problem. Nothing wrong with the cast. It’s fine they said, go home and relax. You worry too much. We’ll have the boy back on his feet and his crutches in no time at all.

Something is not right.

But it wasn’t fine. I wasn’t worrying for nothing, because less than a week later, we were back again at the hospital and I was arguing that the cast was definitely too tight, because now there was a bad smell coming from the foot and I wanted the cast removing immediately to check everything was alright.

A lot and I do mean a lot of huffing and puffing about overprotective mothers thinking they knew better than the professionals ensued, but I stood my ground, I argued my case, I ranted right back in their smug supercilious faces. I then went to an extreme threat. I quietly said that unless they did a check on his foot, I would be seeking a meeting with their superiors to discuss poor child patient care.

Your over reacting, overprotective, he’s fine!

This netted the result I was looking for. They split the cast from his thigh to his toes and removed it. His heel had developed a huge plaster sore that had started to rot and was dangerously close to developing a huge infection, this huge infection could turn gangrenous if not combatted immediately. He could lose his foot.

The boy was admitted to the ward as an emergency patient, he then underwent a local anesthetic so the heel could be cleaned and packed with a silver dressing to remove the slough (infected and/or dead tissue). He was placed on the bed lying on his back with his leg elevated and his foot hanging over the end, free and clear so as no more pressure could be brought to bear. He couldn’t move off the bed, he was stuck there. FOR FIFTEEN WEEKS!

I want to go home mum, please?

It took fifteen weeks for his heel to heal sufficiently, not completely, just sufficiently, before they could send us home. Yes, you read that correctly. Us. I had moved into the hospital for the duration of his stay because patient care was so appallingly poor and I no longer trusted the ward staff to look after the boy at all.

When he had been in hospital 4 weeks the ward sister told me, go home mum, take a break, we’ve got this, come back tomorrow. He’ll be fine. But they hadn’t got this, and he wasn’t fine.

In the event, I did go home to do some much needed laundry that we both required, but I came back much later that evening. I was gone for less than 10 hours. When I returned his bed was gone from it’s spot on the ward.

I went to the desk in a panic, my face must have been gray because the nurse asked if I was feeling alright, did I need to sit down? No I needed to know where my son was please?

Oh! He’s in the TV room, she flicked a disinterested wrist in the direction of the TV room and I nodded and went in there. He was crying, quietly, sobbing and pressing his call button but it wasn’t plugged in to the wall. He had needed to go for a pee, no one had come and he’d had an accident and he was wet, the bed was wet, the fucking floor was wet and he was devastated and embarrassed but no one had come and he was so sorry mum, he had made a terrible mess.

I’m sorry mum I’m in a mess

How long have you been like this I asked as I set about cleaning him up and stripping his bed from underneath him. Hours. he said. At least 4 hours. They brought me in here just after lunch time and put the tv on for me to watch. They gave me a button to press if I needed them but then tea came at 5 and I haven’t seen anyone since then. It was 10pm. He said he had pressed the button hundreds of times but no one came. In the end he was so wet he just cried. I cleaned him up, changed his continence pad and I cuddled him until he was calm again.

I told him I was going for fresh bedding for him and would be right back. I was incandescent with rage. I went on a verbal rampage of monumental proportions that to this day I am sure those nurses will remember with horror. I hope they still suffer fucking nightmares from the tirade of verbal abuse I rained down on their heads!

I cannot remember what I said. I was experiencing a red mist of undiluted raw anger and it engulfed my entire brain. I wanted to murder someone, anyone. If they were in the profession they were in mortal danger. I am proud of myself to this day that not a drop of blood was shed. Many, many of their tears were. Not enough. Never enough to compensate the tears my boy had shed though. Never enough.

After my verbal rampage, (yes, I was still having to deal with that zero tolerance policy that protected these lazy fuckers) three nurses materialised by his bedside, he had his bed made in quick time and he was transferred back to his spot on the ward. Not one of those lazy good for nothing fuckers apologised to him. Not one.

I never left the ward again until the day he came home with me. I took care of my boy, no one else. I was taught how to look after his heel by the tissue nurse, who provided me with enough dressings and sterile equipment to sink a ship on the day we were discharged.

dirty uniform, no apron, no gloves,

The district nurses stepped in for his care in the home. We were now on week 16. That woman came to change his dressing and she arrived wearing a dirty uniform. She had some kind of white powder spilt down the front of her navy tunic and trousers. I assumed, wrongly of course, she would be wearing a plastic apron so perhaps it was okay. She didn’t. She had forgotten to bring one in with her, oh I don’t wear those gloves either she said, my hands are too small, it’s okay, I’ll just rinse them and dry them and we’ll get on with the dressing….

You can leave now. I said.

Pardon me? She replied.

I said you can leave now. I repeated very quietly.

The boy looked at my face and he knew that shit was about to get real for the scruffy little nurse with the small hands, dirty uniform and utterly unprofessional attitude towards best patient care.

I’ve only just… I haven’t done… you can’t throw…

You have a dirty uniform, no apron, no gloves, you have placed a sterile dressing pack on top of a tv full of static dust and you picked up the dirty towel out of the hamper to dry your hands on. Get out of my house. NOW or I will bounce you out.

She left.

Actually, she ran.

Within the hour, I had been visited by her superior, our GP had telephoned me, and I had been told that I had to calm down and treat visiting medical professionals with respect.

My response?

WHEN THEY FUCKING EARN IT!

From that day to this some 19 years and counting, I have been the boy’s district nurse, dressings nurse, continence nurse, and 24 hour carer. The medical professionals are invited to visit the boy and observe when I change a dressing, address an issue, or point out a problem. They tell me how it needs to be dealt with and they provide me with the means to do it. They are not ever allowed to touch him. Never again. Over my dead fucking body.

It works better this way. Less can go wrong and at least we both know I am nothing if not vigilant.

The heel took a total of 42 weeks to heal completely. By this time, the muscles in his legs had atrophied and he could no longer weight bare. He could no longer use his crutches. He became wheelchair bound and had to give up his dream of becoming an actor and dance was impossible. Why did the acting have to go you wonder? Well, this was in the days before disability awareness and disability rights had kicked in. In fact it was virtually nonexistent. Disabled people generally were to be pitied not fucking helped! They can’t really do much though can they? They don’t want to eat out do they? Will they behave properly, it is a restaurant after all, people are paying to eat here, we don’t want our patrons upset… I daren’t even go down the ignorance, inequality and disdain route right now and besides his own father was a proud member of that fucking band of ignorant assholes. I heard all kinds of shite when we were out and about. That story is for another day. Back to the theatre…
The theatre group he had joined used a venue where the stage was inaccessible to wheelchairs. Quite simply put, that fucked it for him now. Whereas before he could bump up a few steps on his backside and throw his crutches up onto the stage, now he was stuck with four wheels to consider. Also in those days, the wheelchairs were big and cumbersome and old fashioned, they were heavy to push around and he was tired by the end of a day. He had no energy to go to a class in the evening and weekends he just watched mindless TV. I struggled to reach him, I tried, I desperately tried but nothing got through. His dreams were dust around his now useless feet and he was in mourning. I had to allow him time to grieve.

A light went out in my boy’s eyes that year. He began his journey from extrovert to introvert, some 19 years later it has now modified and manifested itself as quietly self assured but no longer gregarious by nature. More watchful, less trusting and much more cynical than one so young should ever have need to be.

Introverted

This telling has laid me low. It is a bitter pill to swallow, and was a heart breaking time when the young boy who had walked with his crutches all of his life, pushed out of the house in a wheelchair for his first day at high school and every day since.

every day since

I need to regroup and bury the pain again. It’s old, but damn its still ugly and harsh and very, very real.

All images courtesy of the internet.

My Son, The Actor No Less!

The boy cracked that script right in half. He read it, he absorbed it, he dreamed it, he all but ate it! He got the whole thing down to a tee. I was so very proud of his determination to succeed, but more than that, the major difficulties he had overcome to actually achieve this mammoth task.

Hydrocephalus is an absolute bastard of a condition. It doesn’t just threaten to kill you if left unattended, it will rob you of your very memories, your words, your thought processes. Something that happened less than 5 minutes ago will largely have disappeared from his memory by the 6th minute. It will slow the processes down so much it can take up to 8 weeks to process a single event or conversation, or even a question that has been posed and that’s with the aid of a shunt fitted! It has also left him with a pronounced stammer.

So, imagine now if you will, how hard it was for you to cram for your exams, to remember all the fine details, all the nuances of the subject matter that they may question you on. How hard was that? Add hydrocephalus into the mix, how hard would it be now?

He didn’t just beat that dragon, he slayed it with his bare hands and came out utterly and completely gloriously victorious. He had memorised the entire script of Dickens ‘A Christmas Carol’ in just two weeks.

My head hurt…

If ever I had been in doubt as to whether he really wanted to do this, his achievement in just two short weeks had laid all of those doubts to rest. A byproduct of this intense fortnight of learning was that my brain was now also completely full up with the entire script of ‘A Christmas Carol’. It gave me a headache… just sayin..

Opening Night arrived and The Boy was AMAZING! His stage debut was utterly fabulous! He didn’t miss a line, a placement, a look or a step and his stammer had disappeared! He was Tiny Tim and I was so proud I cried buckets of tears for the joy on his face when he came on at the end to take his bow for the curtain call.

(Add an extra crutch and two calipers)

In the event, he performed the play with his fellow cast members for two weeks at the beginning of November 1999. Midway through the two weeks, an elderly lady logged not a ‘complaint’ as such, but a pointing out of a continuity issue with the production of the play to the Manager of the theatre. He in turn raised an eyebrow and then called me over.

You’ve got it wrong you know…

I could see he was desperately trying to be tactful, which in itself was quite unusual for him, sarcasm was his most valued attribute and he utilised it frequently. The conversation went something like this.

Manager: This very nice lady has taken it upon herself to enlighten us with regard to a detail in the play we have overlooked. I thought as the boy is your son, you could furnish her with an explanation for why we have used the particular props we have for Tiny Tim.

I looked at the lady, she looked like she had a grey fluffy cloud on her head, little gold rimmed glasses sat over watery pale blue eyes and her mouth was set in a thin line of disapproval. Damn, don’t piss off the olds with detail people, they get mean! I smiled at her and asked what the issue was.

The lady: Well my dear, it’s very simple, if you haven’t actually read Dickens, which I have of course, you may not be aware of the issue. So, I felt it was my duty to inform you that you have too many props for the character of Tiny Tim. The little boy who is playing him is using two crutches, they are the wrong kind by the way, they are metal and would not have been invented in Dickens day, he’s also wearing two leg irons! Why you thought it was necessary to dress him this way I don’t know but Tiny Tim only used one Wooden Crutch and one leg iron that I believe was actually made of leather and wood, it got the message across then and I’m sure that it would more than suffice today. Don’t overplay it dear, he’s really quite good in the part other than costume and props.

She delivered her critique and then failed miserably to soften her criticism with a thin smile. I grinned at her. To be fair, in most cases when I grin like I did that night, people are want to run away for fear I may bite their head off, but she was brave in her conviction and I admired her for that.

Me: Thank you for being so observant, it’s appreciated, but I have to tell you, if I take away a crutch and a leg iron, which are actually called leg braces or calipers, just so you know, he will fall over. Tiny Tim is a character written as a crippled boy to get across the message of Christmas to Scrooge, the character in itself is merely a prop for the larger story. Writing him as a crippled boy ensures that message is delivered loud and clear and pulls on heartstrings to do it. My son, The Boy, on the other hand is actually disabled and his props are present on stage because they are his own. All that being said, he will be absolutely delighted to know that you thought he was really able bodied and was only playing the part of a disabled boy, so thank you again.

Don’t take one of each away he will fall over!

I smiled a very genuine smile that reached my eyes. She thought we had over-hammed it. Bloody hell! For the first time in his young life he had been seen for himself rather than as a sum total of his disabilities. That was golden!

Of course the poor little old lady was horrified at her gaff and she apologised profusely. She really was genuinely upset at the mistake she had made and I gave her a hug and told her it was all good, go tell your friends that health reasons insist that he wears both calipers and uses both crutches at all times. Bless her little cotton socks, she was mortified. She walked away shaking her head in dismay at her own mistake.

I’m not nor have I ever been of a mind to feel responsible for other peoples fragile egos and sensibilities, but I had been very careful with my explanation because that lady had touched my heart. She had seen through the metal casings that were my son’s constant companion and just seen the boy. Not only that but she thought he was quite good to boot!

THAT’S MY BOY!!

The Boy Danced and Won Hearts

He danced, in his own way, he danced his little heart out. He danced sitting down. He knew his steps, he would practise them over and over again until he had them nailed down. He can’t remember short sequences you see, he has to memorise everything so that he knows when it’s his turn to shine. Everything through repetition.

I will go back a little bit to the beginning of this episode in the boy’s life.

After the infuriating physio appointment I decided it was time to do things my own way. Never again was I going to seek permission for him to try something new in his life.

Surgery Number 10 looming…

By this time you see, he was already heading for surgery number 10. It wasn’t booked, it wasn’t on the immediate cards but it had become apparent over the previous 9 years that he would require at least one surgical procedure roughly every 12 months to keep his legs straight enough that he could actually use them. How much more damage could dancing actually cause? None as far as I was concerned, his legs were weak, poor muscle tone, no sensation from waist to toes. Really, they were beyond rescue, but the surgeon kept on trying. He wanted to keep the boy upright for as long as possible. There would be time enough to sit in a blasted wheelchair he used to say. Another excellent doctor. Wonderful, compassionate man who saw the determination to walk in the boy’s eyes and matched it with his own skill and precision to give him a fighting chance.

I wanna Dance Mum!

But, If he didn’t get to be a kid and try the things he wanted to try, live his life doing the fun stuff that other kids got to do by default, what was the point of it all? Kid first disabled second. Life is made up of your experiences and memories, he would know some good ones if it killed me in the process!

So, the phone book, it is a really old fashioned way of finding a service, a phone number etc for something that you need. It was all we had in those days! I love the internet!!

Anyway, I flicked to the Dance school pages. There were 365 different dance schools, teachers, classes etc for every kind of dance you could put a name to. I rang them all. They all said the same thing and the conversation went a bit like this.

Me: Hi, I’m looking for a dance teacher for my 9 year old son?

Dance teacher: Oh yes, we take boys as well as girls! Has he danced before?

me: No. He’s never danced before but he has developed a passion for it after watching everything Michael Flatley for the last two years.

Dance teacher: Ahh, we get a lot of children who want to dance because of him! I run classes for beginners on saturday 10am till 12 noon. Why don’t you bring him along?

Me: That’s great, there is just one other small consideration though.

Teacher: Yes?

Me: (dropping the bombshell) He is disabled. He desperately wants to learn how to dance, and I wondered if it was possible to teach him the basic steps while he’s sitting down. He can swing his leg from the knee but his ankle is locked tigh….

Teacher: (FURIOUS) IS THIS A PRANK CALL? STOP WASTING MY TIME!

She hung up.

The second one ended the call saying her insurance probably wouldn’t cover him if he had an accident. Have you thought about wheelchair sports for him? He could do that couldn’t he? Nice chatting, BYE!

The third then the fourth right the way through to the 364th said one or the other of the above, there were variations but they were all on the same theme.

I was desperate, I was in tears, I was at the stage where I thought I may have to dust off my old dance training manuals from way back when and teach him myself, but that wasn’t what he needed. He needed inclusion. He needed the whole experience not just a tiny part of it.

I picked up the phone, I was utterly dejected now, and I dialled the last number. I waited for the call to go through, she answered on the 4th ring.

I began my spiel again, she said her bit, I said mine, then the bombshell at the end.

Dance teacher: That’s fine love, if he wants to dance, then who am I to say no? I think private lessons would be better to start off with and then when he is feeling confident he can join in the group sessions to train for the summer show!

I took the phone away from my ear and stared at it in utter disbelief and shock!

Me: Did you just say yes?

Her: Yes I did.

I could hear the smile in her voice and I loved this woman to death instantly!

He was going to do it, he was going to learn to dance. I rounded up the final details and I ended the call. I was crying, I was laughing, I even hugged myself and danced around the front room. He was going to do it, he was going to dance!

My boy was going to get to be a kid!

One of my proudest moments as a Mama was the day I took him to buy his first pair of tap shoes. His face… I can close my eyes today, 20 years later and still see the beaming smile that lit his whole face up. It was worth every single hard moment, every single one of those 365 phone calls, it was worth not killing the physiotherapist and going to prison for a very long time.

He danced his little heart out, he had a special chair that he sat on, provided by the dance teacher’s husband who designed and built it for him when he saw the difficulties we faced with standard chairs. Balance was also an issue for him, his core strength has always been quite weak and he needed support on both sides or he would lean and fall.

Mr Dance teacher hubby fixed the problem.

Not this exact one, but close enough!

The boy learned his basic steps and then two whole routines that he would perform in the summer show that the dance school put on every year for the summer season.

For one day a week, the boy sat, centre stage, doing his steps while the other kids danced around him, he was King Neptune and Captain Hook and the kids loved it, he was ruler of the seas and then the biggest scoundrel ever to grace them (In Disney’s world anyway). In reality he sat on a dressed up chair and swung his feet, making the correct tapping noises in time to the music. In his head he was flying across that stage with ‘feet of flames’ just like his hero Michael Flatley.

The summer season finally came to an end and it had been a resounding success. The Manager of the theatre came out of his office every week and watched the show! After the final show he came back stage to shake the boy’s hand. Then he asked him if he would like to go back on stage in the Winter and play the role of Tiny Tim in A Christmas Carol. (Scrooge’s part was already taken, so I missed out)

The boy looked at me, I looked at his face, I saw the wish in his eyes and we said YES!

The manager handed me a copy of the script and said rehearsals begin in two weeks! See you back here for more fun!

So, we now had two weeks for him to completely memorise that entire script so that he knew when he needed to say his lines. He was the best damn prompter that stage company ever had! They loved being on stage with him because they knew he would be whispering their lines!

It was nearly time…

The Medical Professional Who thought I was in Denial and Called Me A Silly Woman.

Yup, she said it!

I know, right?

The stroppiest parent on her list, and she looked down her nose at me and shook her head in dismay. ‘You silly, silly, woman.’ She said.

No shit! I’m not joking, from her mouth to my ears and my brain popped.

Let me go back to the beginning.

My boy is now 9 and a huge fan of anything Dance related. (It’s in the blood, I was a dancer before I got married, had my boy, and life changed dramatically.)

In particular his favourite dancer was Michael Flatley, (Irish tap dancer, river dance fame) and he watched every single video, (please remember this was only 1999. We still couldn’t afford the internet, it had only been around for 8 years at this point and was wildly expensive to run. DVD’s were of the same ilk, too expensive and not widely available yet.) I know, I know, I’m a dinosaur! Get over it! I remember life before the Internet ruled the world. Go me!

Anyway, I digress.

The boy’s eyes were glued to the tv screen whenever that man danced. He had learnt every beat, every step, every note of every show Michael Flatley had ever appeared in. He was obsessed with how fast his feet could move, how graceful he was when he danced, how utterly beautiful the art of dance was to him. He loved it.

Then one day he came to me and said, ‘Mum? Can I learn to tap dance like Michael Flatley?’

I was gobsmacked. What did I say? His feet don’t move, his ankles are frozen, he can’t feel his legs and his toes have never even so much as wiggled. He wanted to learn how to dance.

It’s strange, the biggest concern I had was none of the above, I could see ways around all of that with the right teacher. My main concern was, would banging his feet on the floor send shockwaves up his spine and cause any damage to his biff.cyst in his back.

(Biff. cyst – My terminology, spinabifida – biff. easier to say, something he too approves of even in today’s madly pc world. Cyst. – His spinabifida cyst at the base of his spine where all his nerve endings are knotted up and entangled and encased in a thin egg shaped sack. My nightmare.)

We had an appointment coming up with his physiotherapist, so I told him I would check with her whether it could cause any problems and if she said no then I would look into finding him a dance teacher who could teach him.

The following week he and I went along to his physio appointment. He was a very strong young man, his upper body was already lean and mildly muscular due to using crutches all day every day. He hated the wheelchair with a passion and refused to use it.

As usual, the physio was running late by an hour, so we sat and he chatted and he told the man sat next to him about his new dream of becoming a dancer like Michael Flatley. The man looked across at me with a hugely shocked expression on his face and I shrugged and said, ‘It costs nothing to dream. We all have them, this one is his.’ The man shook his hand and said he hoped he got his dream. As he left for his appointment I saw him turn and look back at him. There was a look in his eyes… I don’t know, he just looked stunned I suppose. I think he may remember the boy for a long time to come.

Eventually we were called for his appointment. He grabbed his crutches and swung himself upright and off he went. It really was a sight to see, he could move faster on those things than we could run. His feet were still mainly flat on the floor in those days and although his gait was absolutely awful to watch (from a medical professionals point of view) he got around easily.

She sat on a chair and appraised his gait as he went barrelling up to her. ‘Young man, you need to slow down, you need to place your feet on the floor and take steps, you musn’t swing through like that!’ (I couldn’t stand the snotty bitch, she was always on a downer with him.) I bit my tongue, she was just doing her job, it’s what she got paid to do after all.

He nodded and said he would try and for a whole five minutes he did, as the physio session progressed he forgot himself and chose the easy way of using his crutches to swing through and get to where he wanted to be, faster and without all the fuss. He was 9, life was on full speed ahead, he didn’t do slow.

more physio

After 20 minutes of leg exercises and stretches the session was over. I asked her the question. ‘Ms J. The boy wants to learn how to tap dance, in your professional opinion, do you think it could cause problems with his back, for example, banging his feet on the floor, reverberations up and through the spine? Would it cause health issues?’

She looked at me and laughed. ‘Oh dear, I should remember you have a wicked sense of humour! You almost had me there, I actually thought you meant it!’ She continued to chuckle as she turned away from me to schedule the boy’s next appointment.

‘I did.’ I said quietly. (This was her only warning she was on thin ice)

She turned back to me with a quizzical expression on her face, ‘you did what dear?’ she asked.

‘I did mean it. The question is not a joke. I want to know.’ I was still calm.

The boy was sitting listening avidly to the conversation, his dream was being discussed. Yes!

‘Let me just… you want to know if… okay, you want to know if he can learn to dance? That is what you asked me isn’t it?’ She said, her tone incredulous, her expression scornful.

I waited a beat. I gathered my thoughts, and I replied, ‘No, that isn’t what I asked you, don’t worry I’ll repeat it for you so you can get it this time. I want to know if banging his feet on the floor while learning to dance could cause him any problems with his spine? A simple yes or no will suffice.’

She shook her head and laughed in my face, she was either very brave or very stupid I’m not sure which but she had the might of the zero tolerance policy for abusive language or behaviour towards any medical professional (which I heartily agree with) behind her. Apparently that policy only flows one way. It’s alright for them to be abusive towards us when they feel like it but we can’t return the favour. Well, we’re not supposed to.

The boy looked at me and he was obviously confused by her reaction. ‘Why is Ms J laughing Mum?’ he asked.

I never got chance to answer. She jumped in.

I’m laughing because it is the silliest question I think I have ever been asked young man. You can’t dance! You’re disabled! Wheelchair sport is your future not dancing! I will put you in touch with the Boccia club in your area.’

My reply was succinct to the point and left no room for misunderstanding.

‘Fuck you lady. You just stepped over your professional boundaries and into my territory. You are just his physio, nothing more, he owns his own life, he will decide where his future lies. You have no fucking say in it.’

And then it went BOOM!

Her voice rose at least 4 octaves, as she all but screamed in my face.

‘How dare you use that language with me! How dare you! You… (a finger was thrust in my face) You are in denial of your child’s condition …’

‘Remove your finger from the end of my nose, this conversation is over, your aggression has been noted and I will be reporting you for your unprofessional attitude and behaviour when I leave here. Don’t fucking mess with me Ms J you will lose. You ever, ever speak to my son again the way you just did, and I will see to it you don’t have a patient list. Do I make myself clear?’

I was fucking bouncing!

ANGRY BIRD!!

There are rules set in place to protect people in the work place. But where are the rules that govern their behaviour toward their patients? Who the hell is this woman that she thinks she can decide my son’s future for him and because she has said it, it will be so?

She could call me any name that she liked, meh… I’ve heard much worse and from much better than she. But she could not upset my son. No.

‘Go ahead! Report me! You are an idiot if you think he will ever be able to dance! AN IDIOT! I should be phoning social services and informing them that you have become unhinged!’ She shook her head as she stared at me. ‘You silly, silly woman!’

‘Do your fucking worst woman, you’re no threat to me, you’re a tiny, tiny cog in a great big lumbering machine that never looks past its set boundaries to what can be achieved with a little bit of bravery and the ability to teach a child, in order to recognise our successes we first have to understand what it is to fail and then get up and try again.’

I gathered my boy, who was very upset, and we left her department.

I went home, I wrote a letter to her manager and I picked up the phone book and began looking for dancing schools. The boy would have the last laugh and he would dance while he was doing it!

HAHAHAHA! look mum I can do it!

A footnote.

I refer to my son throughout as the boy, I can’t and won’t use his name, it makes it all too real for me and prevents me from writing these recollections. Please just roll with it. Ta x

My Precious, Perfectly Imperfect Boy.

Normal service will resume eventually, you have been warned.

I started this blog to put down my innermost thoughts and feelings about the direction my private respite time has taken me in.

New people have decided to follow me based on the recent set of blogs I wrote about events from my son’s life and the medical profession’s involvement in it. I thank you for that. I don’t know if you know what you signed up for, but please do check out my other blogs so you know, at some point I will be stepping back into my diary and those blogs will resume. That is my story to tell for me. I say this quite a lot on here. I am me, don’t judge me by what you read or would want for yourself. My choices are my own and I am happy with them and the events that take place because of them. I am finally living by my own rules and handling my issues my own way.

This is me today, if I can save someone else, then it’s been worth it.

All that said, I know I have another story to tell, one that I have struggled to keep quiet for 29 years. One that hurts me to think about, but if it helps someone else in the telling of it then it is worth the pain of revisiting the trauma.

If you know someone who has a child with spinabifida and hydrocephalus, then ask mum if she’s doing okay too? No one ever asks me you know. No one ever says to me, hey are you coping okay? How do you feel today? Do you need a break? Can I do something, anything for you?

just one person asking, makes a world of difference.

I learned how to be the best in the entire Universe at coping. And hiding it when I wasn’t. I can spin plates, all of them in a row all at the same time, they wobble alarmingly sometimes, but mainly I’ve got that shit down these days!

I really don’t give a shit, just so you know.

I’m abrasive to gentle ears, I am brash and bold, and demanding and forthright, I am loud and blunt and downright rude but I get my boy what he needs and if people’s sensibilities get a bit bruised or battered along the way, give in more gracefully next time! I tried asking nicely, you ignored me.

Now, I don’t get ignored. I go to the front of the queue because you know if I’m hanging around too long, shit will get real.

In my previous blog I went right back to the beginning, the day my boy arrived in the world and brought all the colours of the rainbow into mine. He brought with him some demons and dragons that needed slaying along the way, but we’re on it! It’s a work in progress, there are still a few out there. I know where they are, they can’t hide. I have a big sword and a shield that covers us both.

Demons, dragons, idiots, all slayable with a big sword and a bad attitude.

All in good time.

So, after the harrowing start my boy had in life I finally took him home with me when he was 6 weeks old. Our lives became a whirlwind of hospital appointments, doctors for this, surgeons for that, orthopaedic docs, paediatricians, physiotherapists, neurologists, Urologists. Clipboard mania ensued. Fill in this form, document that, measure this end of him, now measure that.

it’s all about the bones.

Whats going on with his feet doc? You need the orthopod for that, I only look after his head and his insides, the outside bits are for the orthopod to fix but its too soon for that.

The paediatrician was a lovely man, very quietly spoken but very good at explaining and he guided me through the first 9 months of my boy’s life. When you find yourself in the presence of a good doctor the feeling of relief is immense. You instinctively know you can trust them with your child. I made sure he knew, I only made one, I can’t make anymore, please don’t break him he’s my precious perfectly imperfect boy.

I found one. Just one…

He got it, he nodded, he understood and for a little while there, things were good. Then 9 months happened and the hydrocephalus hit with a bang. One day he was fine the next morning his head had swelled to twice the size and we were suddenly in an ambulance being blue lighted 50 miles back to the children’s hospital and surgery number 2.

terrified on the inside

I have never been so terrified in my entire life to that point. I have passed it and topped it over the intervening years from then to now, but at that point I was still very raw and new to it all and terror had become my constant shadow dancer.

Regardless, we got through it, as I said previously, even his new surgeon agreed that if it ain’t broke don’t fix till it is. I loved that man for that. He took away my fear that I had done this to my boy. I had refused to acknowledge that he would develop hydrocephalus and now look where we were. He was of the 99 now not 1 out of 100.

In the event, the doc said I had made the right call back then and then again now. Nothing to worry about, no guilt to carry, no demons to slay later. But the husband thought differently and so it began. The bitching, the nagging, the questioning, the second guessing, the washing one’s hands of the whole affair, it’s her fault, she gave birth to him, it’s not from my side of the family, the fault is from hers.

MY SON IS NOT FAULTY! He’s perfectly imperfect.

I heard the words, they dug deep, they left their scars and the wounds festered. I was being controlled and coerced and defamed and I did nothing, but that is a different story and not to be told here. I put my head down and I raised my perfectly imperfect boy. My way.

By the time he turned 5 he had undergone 6 surgeries, 1 on his back at birth, 1 on his head to fit the shunt at 9 months old, 1 on his groin to remove a hernia the day before his first birthday, 1 on his feet to straighten them both, 1 on his left leg to stretch the hamstring so his leg would go straight, then the following year 1 on his right leg to stretch the hamstring so his leg would go straight. I was exhausted. No matter, he was doing fine so it was all good.

close enough, add calipers

By this time I was beginning to turn away from the world and it’s wife and I concentrated solely on giving the boy the best chance I could at everything. He would dance if he wanted to, he couldn’t walk, hell, he couldn’t stand up without boots and calipers, crutches, a K walker, (a backwards zimmer frame). He had the smallest wheelchair in the world! He didn’t like going in it though, he said it made him look poorly and he wasn’t poorly, he was just different.

He started at primary school when he was 5. He went to an integrated mainstream school, nothing wrong with his brain, just his legs that didn’t work at this point. Jeez he was a live wire! He won the sack race on his first sports day, I tied the sack around his waist and put braces on to make sure it didn’t fall down, and he raced the able-bodied kids, him on his crutches belting down the track, that boy FLEW!

He beat them all fair and square and every single parent there that day cheered and whooped and hollered and I shouted THAT’S MY BOY!!

The headmaster had a lump in his throat and a tear in his eye when he handed my boy his trophy. It was to be the first trophy of many.

THAT’S MY BOY!!!

So you see, as hard as it was, and as hard and heart breaking as it has been and still is, there are golden moments of pure joy that make me fill up with love and pride for my perfectly imperfect boy.

All images are courtesy of the internet.

He’s Mine, Please Don’t Break Him!

I keep saying no more, I can’t write this, it breaks me. But, someone keeps telling me I must. I have a story to tell that has to be heard. What good it will do, who knows? At least others will be more aware I suppose.

To tell this story I have to go back to the very beginning. To when he was born.

I didn’t know you see. No one told me I was carrying a disabled child in my belly. The hospital staff knew of course, but they made a decision, it was a costly one for them but that came much later. They decided I didn’t need to know and they would tell me when he was born. Make it all a big surprise, make out they were as shocked as I.

Just one of those things they said, it could happen to anyone, they said.

NEVER SORRY

Do you know what they didn’t say? They didn’t say, We’re sorry. We knew all along, but we made the wrong decision and we didn’t tell you. Fait accompli!

NOT SORRY

We dealt this hand of cards for you, the hand you held? That’s all gone now. There’s the door, it’s dark down this road so do take a torch with you. BYE!!

I was in shock, my now ex husband was in shock, he dealt with it less well though and blamed his god and his devil and all of his demons for the hand we had been dealt. OH WOE WHY DID THIS HAPPEN TO ME he would cry.

But it didn’t did it? It happened to my tiny baby boy. He had come into this world and people were already saying, poor mite, so sad, what a shame, will he be alright?

HOW THE FUCK WOULD I KNOW?

I had never heard of the condition he has, spinabifida. I didn’t know what it was, how dangerous it is, what it meant for my baby, what problems he would face? I knew nothing.

Within an hour of his birth he was whisked away to a specialist children’s hospital some 50 miles from where I was, he needed surgery to close the lesion on his lower back. It was the size of a grapefruit. Of course, I had had a C section and epidural and could not be moved, the children’s hospital didn’t have the facilities to care for me. My ex went with him. Oh the drama that caused! That man would milk that drama for the rest of our long and painful marriage.

It was the only time I was not with my boy during surgery from that day to this. 29 years and counting.

I lay in my hospital bed railing against my numbness, I needed to get out of here, I needed to be there, I needed, I needed, I needed. No one could help me. I had to wait. While I waited, my baby went into surgery for the very first time in his life, the day he was born He was just 4 hours old. The surgeon closed the lesion on his back, and informed the husband that a shunt should be fitted in his head too, hydrocephalus would come next.

I will call my ex husband every name under the sun and I have zero respect for that excuse for a man but I will give him this. He refused to make that call on his own. He phoned the ward and they brought the phone to me.

‘They want to do an operation on his head in the next few days.’ he said.

‘What for?’ I asked.

‘I don’t know, something called hydrocephalus. I don’t know what it is.’ He said.

‘Tell them to wait until I’m there and they can talk to us both and we can say yes or no then. I want to know what it is first.’ I said.

‘Okay.’ He mumbled, and hung up the phone.

Something deep inside my mind had screamed, WAIT!!

I rang the bell, the nurse came, I asked her what hydrocephalus is and she looked at me blankly. I asked her to get the paediatrician who had been here earlier. She did. He came and I asked again, what is hydrocephalus?

He looked surprised, but then he answered, ‘hydrocephalus is fluid on the brain, the ventricles in the brain act like a pump to pump the cerebrospinal fluid in one complete cycle around the head and body. In some cases one of the ventricles will shut down and a shunt will need to be fitted to do the same job or the fluid will build up in the head and cause it to swell and put pressure on the brain. Left unattended, it can cause brain damage, in extreme cases there is a risk of death.’ ( this is my layman’s explanation, he explained it properly.)

FEAR! BLACK CRAWLING FEAR! I could feel it climbing up through my numb body to my mind and I knew the very first moment of absolute terror in my life.

The Paediatrician was very good, he explained it all to me and before he left he said this, I’m not sure how you knew about the chance of hydrocephalus developing at some point, but don’t worry about it for now, he is showing no symptoms at all of it developing, both ventricles are working fine right now. Let’s take things one step at a time. One in every 100 children with spinabifida escape the hydrocephalus. It doesn’t affect every single one. Sometimes, we are lucky.

I’m numb. My brain isn’t processing information, he just said, hydrocephalus is a killer, he needs a shunt, he hasn’t got it yet, he might not get it. He might be 1. not 99.

Two days later I held my boy in my arms and fed him for the first time. His surgeon came to see me and the husband later that day. He wanted to do the surgery, he wanted to fit the shunt.

Can I do it before it needs doing please?

I asked him if this was prevention rather than cure?

Well, yes, he said, somewhat nonplussed at my questioning attitude. ‘So, I need to know’ I asked, ‘does he have hydrocephalus now?’

No. He replied, but he will get it, it’s just a matter of when not if. We may as well strike while we can and do all his surgery now so he can get over it all at the same time.

What he really meant was, it’s cheaper to do it now than wait. Everyone is already assembled and in the building. Let’s crack on why don’t we?

I explained what the paediatrician had told me. I explained that he had said, lets not jump the gun. 1 in 100 remember that number. My boy right now, is 1.

He harrumphed at me, he berated me, he called me a fool but without my consent he could go no further.

For the first in a very long line of times, I uttered these words.

If it ain’t broke, don’t fucking fix it! Fix what is broken instead.

There is plenty of other stuff you can fix

A foot note.

He did develop hydrocephalus, 9 months later. He had the shunt fitted by a different surgeon who said it was good that we had waited, we had given my boy a much better chance of surviving one surgery rather than two in the first week of his life. Besides, he said. If it ain’t broke, don’t fix it till it is. Where’s the harm in that?’

I wish he was still in the NHS.

A note for anyone who wants to know about Hydrocephalus.

What is hydrocephalus?

Hydrocephalus is a condition that occurs when fluid builds up in the skull and causes the brain to swell. The name means “water on the brain.”

Brain damage can occur as a result of the fluid buildup. This can lead to developmental, physical, and intellectual impairments. It requires treatment to prevent serious complications.

Hydrocephalus mainly occurs in children and adults over 60, but younger adults can get it too. The National Institute of Neurological Disorders and Stroke (NINDS) estimates that 1 to 2 of every 1,000 babies are born with hydrocephalus.

What causes hydrocephalus?

Cerebrospinal fluid (CSF) flows through your brain and spinal cord in normal conditions. Under certain conditions, the amount of CSF in your brain increases. The amount of CSF can increase when:

  • a blockage develops that prevents CSF from flowing normally
  • there is a decrease in the ability of blood vessels to absorb it
  • your brain produces an excess amount of it

Too much of this fluid puts your brain under too much pressure. This pressure can cause brain swelling, which can damage your brain tissue.

Underlying causes

In some cases, hydrocephalus starts before a baby is born. This can result from:

  • a birth defect in which the spinal column doesn’t close, such as spinabifida
  • a genetic abnormality
  • certain infections that occur during pregnancy, such as rubella

Recognizing potential signs of hydrocephalus

Hydrocephalus can cause permanent brain damage, so it’s important that you recognize symptoms of this condition and seek medical attention. The condition is more common in children, but it can affect people of any age.

Infants

Early signs of hydrocephalus in infants include:

  • bulging fontanel, which is the soft spot on the surface of the skull
  • a rapid increase in head circumference
  • eyes that are fixed downward
  • seizures
  • extreme fussiness
  • vomiting
  • excessive sleepiness
  • poor feeding
  • low muscle tone and strength

All images are courtesy of the internet

Real Life, surviving the medical professionals.

So, at the request of a new friend I blogged today about real life. My real life, not my behind the scenes diary which is real but just for me in my 15 hours of free time a week. (It’s loosely referred to as respite.) Those hours never ever impact on the mainstay of my days and nights as a mum first but also a carer for my disabled son. I have tried many, many times to write our story but it is the kind of painful you really cannot stand or endure because of the utter unfairness and frightening reality of it all.

I have been doing this dance for 29 years, hospitals, doctors, specialist nurses, orthopaedic specialists, surgeons, district nurses, social services, special needs, physiotherapists, pharmacists, carer services, you name it I’ve had a run in with them all. They all know me now, none of them would tell you they like me, I’m too abrasive for them you know, they all give me a wide berth whenever they are able. Why?

Because I ask the awkward questions. Because I want the answers they are unwilling or unable to provide. Because I want a health care system that does not systematically fail my son. I want good health care, I want a stable system where we can access the doctor and get an honest response to a terrified question. Even if I have to shout, loudly to get it.

Do you know how many times a night I get up and go and check that my son isn’t fitting in his sleep? 4 times a night. Roughly every two hours. What sleep? What is sleep? I can sleep when I’m dead. He needs me so I am there for him.

His last surgery took 7 1/2 hours. Think about that for a minute. See how long that minute was? Now add 449 more onto the length of that and then put your only child on the operating table for all of that very long time. I walked the whole length and breadth of the hospital for those 7 1/2 hours, I didn’t know what else to do. I talked to no one. I just walked and I worried, and I worried so much I made myself sick. Then I worried some more.

What if he didn’t wake up from this one? How would I survive that knowledge, that I had failed him completely? Should I survive that knowledge?

The thing is, for the past 29 years this boy, this man, has filled my life with colour. Beautiful rainbows of colour that no one can dim. If he wasn’t here, my life would be black and white. I see no point in that.

Regardless, none of this came to pass, he did survive because he had a goal, a reason to wake. I promised him a black labrador puppy, all he had to do to get that puppy was wake up. I had been fed the odds of the opposite happening, but I know my son. His greatest desire in the world was to have a black labrador puppy so he could train it to be his constant companion and assistance dog.

He woke up, we got the black labrador and they are inseparable. In reality, the dog trained himself to recognise when his ‘daddy’ was going into an epileptic event. He would nuzzle his hand and lean into him to support him, he would lick his face and love him throughout the event and it works, it really works, my son reconnects to the world much faster and in a less stressful way than he used to and it is all thanks to Dog.

Job done you might think. Hardly, but it is a step forward for once in this endless dance. I can’t write it you know, I don’t have the words without the anger and frustration, the hurt and the deep well of pain that goes with every single minute of every single day that the health care service fails him yet again.

In my previous blog, I talked about his blood pressure destabilizing because of his kidneys. How did it come about that we found this out? Remember blood pressure is the silent killer. It gives you no symptoms you can go to your doctor with. It gives you no warnings or pains or even a nudge. One minute he was sat in his wheelchair the next minute he has fallen out and banged his head on the floor. Dog barks, I run, we are both too late to catch him this time. I call for the paramedics and put him in the recovery position. I assume this is epileptic in nature but dog is not responding in his usual manner. Nor is my son. He is not fitting, he is not in a seizure, he has blacked out.

The paramedics arrive and they run his obs. Blood pressure, check eyes, how many fingers son? All of the checks and balances are done. I see a concerned look pass between the two paras and I ask what is wrong. They show me the blood pressure results and I am shocked. 190/120. Look it up, he was in severe danger of stroke or worse. They sat and talked to him quietly for 30 minutes and then they took his BP again. 190/110 not good at all. It should have come down after the initial shock had worn off apparently. They put him in the ambulance, we went off to the hospital, dog stayed behind with a friend and was devastated to be separated from ‘daddy’. I was told he howled. Long and hard but to no avail. My son was in the hospital being told he had had an epileptic event that had caused him to fall and bang his head and that was what had caused the high blood pressure. Take this tablet sir, it will help. Go home and rest, you will be right as rain by morning.

They sent him home. I wasn’t happy, they had blamed his epilepsy, both I and dog knew it wasn’t. It had presented too differently to his normal pattern. At least epileptic events are similar in their appearance each time. No one was listening. AGAIN!

I contacted our GP and explained my concerns, that man skyped me, because he couldn’t do a house call today. At least he skyped. He asked me if I had a blood pressure machine that I could take his BP with 3 times a day for a week. I borrowed one, then bought one, and I did as I was asked. His BP was still through the roof and now bouncing around all over the place. He was afraid to get off his bed and into his wheelchair. He was scared to push from his bedroom to the kitchen and he became terrified of moving. I called the doctor and told him our results. He contacted the hospital and booked him in for an overnight observation.

When we got to the hospital, the doctor on duty was shocked my son had been sent home from A&E originally. He should have been admitted a week ago he said. This was not epilepsy, this was not the bang to the head, this was his kidneys. The bloods had come back saying there were problems. They have stabilized his BP with two types of meds, top doses for each one. It appears to be working, for now, but they are still only treating the SYMPTOM they are not looking for a CURE! At least this time it only took a week for them to find the cause and only two different doctors, who still did not speak to each other. Our GP still has not been out to see my son, his health is outside of his GP ability. We have been transferred to direct hospital care. If he is ill, I must contact the hospital, apparently they are better able to diagnose his condition.

I don’t sleep much at all these days. I worry a lot more.

All images are courtesy of the internet

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