I have been thinking, which is always dangerous, that I should tell the story of John’s journey in the hope of showing how he arrived at where he is today. It’s a very long journey so you may want to get a cup of tea or coffee and some Hob Nobs and fasten your seat belt. No journey is ever straight forward and we encounter many difficult paths along the way, however some of us seem to encounter more ‘dead ends, one way systems and pot holes than others.
Just when the road ahead looks clear, Boom! An unexpected sharp bend, and we find ourselves teetering on the edge of an abyss with seemingly no way forward and no way back. Just a vast wilderness above and below, which we know with inevitably we will have to launch ourselves into, without a parachute or a guide book or a safety net……at least that’s how it was for me. The secret is to always have a back up plan and as soon as I have one I will let you know what it is!
John was born on February16th 1988, his dad and I were over the moon with our beautiful baby boy. He was big, certainly made my eyes water, and in his wonderfully stubborn way took 23hrs and 57minutes to make his grand entrance. I was shattered, his dad was the usual ‘new dad mix’ of pride, sheer delight and traumatised. John just lay gurgling wondering what all the fuss was about. The nurses cooed, John cooed, his dad cooed and I tried to coo but all that came out was ‘Please can I have a cup of tea and some toast’
Well I mean… I was feeding John, his dad had been home for three meals in the intervening 23hrs and 57minutes, have I mentioned it was a long labour…and I had eaten nothing except the inside of my cheeks to stop myself bellowing like a bull being castrated, during the previous 23 hours and 57 minutes…just in case you forgot!
Our little family were blissfully happy, no sleep, lots of nappies and the camera had never been so busy. John was a happy bouncing boy who laughed all day and cried all night. I couldn’t imagine life being any happier….well maybe less crying at night but you can’t have it all. His dad and I discovered all sorts of new things, for example that at weekends 7.00 a.m was a lie in and it was amazing how Brahms Lullaby can really get on your nerves after only three hours of continuous playing! Happy days.
Our world exploded into a thousand painful fragments one Sunday afternoon when John was three months old. He had a seizure and over the following two weeks had several more. It was very a scary time and frustratingly I couldn’t get the health visitor or the GP to believe me. I had never witnessed a seizure before, as they kept pointing out, but what I saw was not good and I instinctively knew John needed help and fast. John on the other hand decided to play games and only had them when his dad or I were around and never in front of health proffesionals. After much persuasion on my part, we spent a week in the local hospital but he didn’t have a single one. Instead he spent his time playing happily, flirting with the nurses and being a model baby.
After a week the Paediatrician, or Beelzebub as I like to call him, decided there was nothing at all wrong with John, but that I needed psychiatric help as I was clearly an attention seeker of the worst kind, pretending my son was ill. He refused to speak or have anything more to do with me…very mature I must say…waggles fingers in ears and pokes tongue out!
His dad and I were then in the very odd position of willing John to have a seizure just to prove we were right and Beelzebub was not doing his job. It still leaves me cold when I think of the emotional rollercoaster of that week.
So I did what every good attention seeking lunatic mother would do, I staged a sit in, in the hospital, which coincided with my 30th birthday. I made paper planes out of my birthday cards which I then launched at anyone who came through the door…. me…crazy…noooo. I demanded that unless John was given a brain scan I would remain, fashioning aircraft out anything I could lay my hands on, until something was done to prove without question that there was nothing wrong with John. Until I had that proof, I was going nowhere.
I eventually wore Beelzebub down and in a twisted way felt I had won a small battle if not the war.
Over the coming months my diagnosis was proved correct, John did indeed need help but his dad and I had no concept of how much. We were sent to Walton Hospital for Neurological Disorders. Not far from Aintree racecourse.
John’s seizures became so severe and uncontrollable that he was having 12 grand mal a day and the same at night. He was permanently exhausted. He was tried on various medications but nothing worked. He had many brain scans, electroencephalograms and a lumbar puncture, but there was nothing conclusive.
He was diagnosed on three different occasions in his first three to four months of life as having firstly ‘a mark, possibly a birth mark’ on his brain. Then a ‘calcified lesion or bruise’ whatever that meant and finally a ‘brain tumour’ that was ‘deep and therefore inoperable’. He had at most three months to live. We were told this news on a hot and sticky Wednesday in July and neither of us slept for three days, we just stood, shivering inspite of the heat and watched our beautiful boy struggle to survive the horrendous seizures.
Then on the Friday afternoon the registrar popped his head around the door and said, ‘Oh I thought you would have gone home!’….WHAT!! We looked blankly at him and then with realisation written all over his face he said ‘Oh…so you haven’t seen the consultant then?…. well good news, it isn’t a tumour after all, I thought he would have told you…so go on, off you all pop’ and he disappeared…puff…just like a genie.
We just stood there mouths open, stomachs somersaulting and not knowing what to do, ‘where, when, help someone, please!’
A junior doctor told us that we had to attend AlderHey Children’s Hospital on the Monday where we would be looked after for the foreseeable future.
As we left the hospital I looked back at the other three, very poorly children in the ward and their parents, who all wore the same bleak expressions of hopelessness. We were the lucky ones taking our child home; they would never know how that felt.
My heart broke for them. Life can be so cruel. I felt guilty for being able to take John home, still very poorly but knowing he was not going to die. It was a feeling I would experience repeatedly over the next two years and it did not get any easier to bear. If anything it just got harder.
Over the following two years John attended clinics at Alder Hey, a fantastic hospital. His life was such that he was still having seizures, still on medication and still a gorgeous cheeky monkey who was brave as a lion. The mark in his brain wasn’t growing so the consultants seemed to want to do nothing, just checking on him every couple of weeks. Our lives were stressful, full of anxiety and yet wonderful, because John was a joy. He took all his problems in his stride and found ways around them.
The mark on his brain had caused a Hemiplesia which left him with paralysis of the right side. He could not move his right leg very much or use his right arm with any precision or strength. His hand remained in a fist. He had little or no balance and was like a little weeble, cute as boots wobbling on his playmat. We used to invent games to strengthen his hand and arm which we were told years later was the best thing we could have done as his muscles did not waste.
John’s overall development was delayed for many reasons, and we knew his future was going to be tough, as was ours, as we struggled to come to terms with a life we had never expected. Don’t these things usually happen to other people?
For eighteen months I succumbed, on occasion, to self pity, a most unattractive trait and I am ashamed to admit it. I would question ‘why me’ ‘why us’ moan, whinge, and feel angry at the world. I will admit that it was at this point I lost my faith, which up to then had been fairly strong. I questioned how any god could justify the reasons for the suffering of children. What lessons are we supposed to learn as parents? I had witnessed babies and young children with the most horrendous illnesses and terminal conditions undergoing unimaginable horrors, what had they done to deserve this?
No one has been able to give me a definitive answer and I suspect no one will.
Fortunately I pulled myself out of my self pitying mode and asked myself this, instead of ‘Why me?’ ‘Why not me?’ who would I chose to put this upon? No one. I suddenly saw my blessings and counted every one. I was not going to feel sorry for myself any longer and I didn’t. Instead I held my head high and got on with it.
That is not to say it wasn’t hard, it was, bloody hard, but I couldn’t possibly do my best for John if I was so self obsessed with my lot in life.
Suddenly at 18mths old John seemed to start regressing, he was still having seizures but they were increasing in numbers and within a few short weeks he was only able to lie propped up, no longer able to sit. Surprisingly we were met with resistance by the doctors at Alder Hey who shrugged their collective shoulders and said ‘well what do you expect, he has an abnormal brain’
This was not good enough and we asked for a second opinion, eventually we were sent to Great Ormond Street, John was scanned and we were told that it looked like the bruise, birthmarky thing on his brain was causing the seizures and it may or may not be able to be removed. However as ‘oop north’ ‘was still in the middle ages as far as technology was concerned’ they said that there would be no surgeons ‘oop’ there with the skill to do the operation.
We went back to Alder Hey who said there was no point in messing about with an abnormal brain in the vague hope that it might make a difference to his seizures. Third opinion please and NOW!
We had a right battle to get this, but we were relentless in our quest, leaving no stone unturned to seek out a surgeon who did have the expertise to do the operation.
Finally, in July 1990 we were referred to the Maudsley Hospital’s Neurological wing under the expert eye of a man who looked like The BFG but who turned out to be Johns saviour. He explained after a five minute test (Alder Hey had taken two years)
That the mark on Johns brain was a mass of twisted brain tissue which he could remove and hopefully, reduce the seizures to a more manageable degree. He also advised us that John was in ‘Status Epilepticus’ which meant that for the past couple of months his brain was experiencing one continuous seizure, thereby rendering him almost unable to function. He could not have withstood this electrical battering much longer. The great man said that if he operated, apart from the usual dangers of anaesthetic, the worst that could happen was that there would be no change. The decision was ours. We agreed to go ahead.
The operation was set for November, the time flew by and we spent it agonising over whether we were doing the right thing putting John through it.
At 8.30 a.m. on 2nd November his dad carried him down to theatre, his little gown kept wafting open flashing his little bum to all the nurses. He looked so cute, his beautiful big brown eyes wide with anticipation and mild alarm, he knew something was going to happen and he clung to his dad’s neck with his one good arm. I followed in their wake weeping huge silent tears and praying my stomach stayed where it should. I spied the theatre bathed in a yellow light with what looked like medieval instruments of torture laid out, my legs buckled. Reality smacked me full in the face and I was in floods. ‘My baby…please, please keep him safe.’
John was involved in a gentle tug of war between his dad and a nurse, his dad, feeling every bit as emotional as me couldn’t release him. I will never forget the look on his face as finally allowed the nurse to take John away into the glowing yellow room, where hopefully a miracle would take place…and it did!
John was in theatre for eight hours, the consultant could not believe how well the op had gone and John, who should have been out for the count for hours woke up back on the ward after only half an hour. He turned his head, which was the size of a pumpkin, to his right where we were standing. He then reached out with his right arm and for the first time ever opened his little hand and grabbed his dads. His paralysis had gone, his eyes were alert for the first time in a year or more and although both of his eyes were black and purple from the surgery he wanted a kiss and cuddle. ‘Our brave, brave boy, daddy and I are so proud of you.’
He remained in hospital for only two weeks, was the star of the show, all the nurses constantly coming in for a cuddle, no one quite believing the speed of his recovery and soon we were back on the M1 heading ‘oop north’ and home.
John was so full of life and was determined to catch up on all the lost time, he hooted and hollered in the back of the car, throwing his cup over the seats and laughing all the way.
We caused quite a stir in a service station. Johns head was shaved, and a huge scar snaked its way from behind his left ear across the top of his head and down to just over his right eye. The metal staples had been taken out the day before but big reddish, yellowish scabs had formed which made it look as if he had been hit with an axe. People looked terrified and moved back to allow the two axe maniacs through, pushing a young victim towards the Cottage Pie and Chips. What a great way to jump the queue!
John continued to thrive and to this day he has never had another seizure, he is physically as fit as a flea, able to move all his limbs in all directions and often all at once!
He became hyperactive almost immediately and at around the same time it was evident to us that he was displaying signs of autism. This was eventually, officially, confirmed when he was about ten, there is a reluctance to label children as autistic as there aren’t any special provision for them. Having said that all the special schools in our area are well trained in how to support and educate autistic children and John was very well catered for. I have no complaints.
It is no exaggeration to say, that without the surgery John would not be here today. His heart was close to exhaustion with the seizures and his life was limited.
I thank my lucky stars every day that The BFG came into our lives and gave us our son back.
John’s dad and I separated and divorced many years later, but we remain devoted to John as a family. The three of us go on holiday together every year and will continue to do so as long as John wants us to. John stays with his dad one weekend in four.
We have different roles in Johns life, both equally important. I am the sloppy kissy mum, treat him like a child and wait on him hand and foot…I know…I know…but I cant help it!…His dad is his big mate and gives him man talks. They share a love of dance music and drive around in the car bobbing their heads together in time with the music; his dad playing drums on the steering wheel with John on synthesizer humming through his nose and adding a bit of percussion by slapping his head.
There is a lot more to add to this story, but I think this is a good place to stop for a while and leave the rest for another day. Was that a sigh of relief I just heard? You must be exhausted by now reading this, if indeed you have managed to stay with it thus far.
I could not have got through the difficult times without some amazing friends who were with me on the road, if not always physically, definitely emotionally. They have held me tight, loved me, laughed with me and cried with me. They still do, but with a whole lot of wine drinking thrown in. Each and every one has a very special place in John’s story. I love you, you know who you are.