Well what a start to 2020…….. Facebook keeps telling me I haven’t done an update to my page in a while. It’s quite right, I haven’t. I suppose as it stands in the current climate, my troubles and woes pale into insignificance. But what an absolutely crazy time we are living in. If you’d said to me 6 months ago that I would be locked in the house 24/7 with my three beautiful but feral children, I would have laughed in your face. And yet here we are. As crazy and bizarre as it is, it’s also equally terrifying. Not only for the fact that there is a rogue virus sweeping the world that no one seems to be able to get a handle on but whose effects are devastating families left right and centre and putting unprecented pressure on work forces across the globe. It’s a particularly worrying time for me as I have three family members: my mum, dad and brother all classed as key workers, still out there in this environment trying to do their jobs. I am so scared for them and the risks they are putting themselves at for the greater good of the country but yet its what they must do. I am so very proud of them all.
As for us holed up in the house, life goes by in a bit of a blur to be honest. I wake up most mornings not knowing what day it is, the kids in some form of full blown argument over who’s fart smells the worst or something equally ridiculous, I can’t remember the last time I brushed my hair and I hop from one meal to the next with a good measure of gin or wine thrown in there if its after 12pm (its 5pm somewhere else right?) By the time this lockdown ends, I am going to be at least 3 sizes bigger. My head is persistently fuzzy, I can’t get my words to come out right half the time, I have a constant headache and people who have nothing better to do with their time, continue to meddle and stick their noses into my business. Because there’s genuinely not enough going on in the world without some more drama thrown into the mix. Whats a girl to do? People need to remember that karma has a funny way of working things out. There are always two sides to every story, it’s unfair to cast judgment and make opinions if you only listen to one of them.
Im supposed to be in court at the end of May to finally have some sort of final resolution with regards to the house saga, but now with Covid tearing through the country, along with my first holiday abroad since 2005, its up in the air, which potentially means a further delay to getting any of this shitshow sorted. Cue my solicitor costs crippling me every month without fail the longer this goes on. If I could honestly pick a show to represent my life at the moment, it would definitely have to be Jeremy Kyle.
So, health wise, we are all ok at the moment. Sam’s condition is relatively stable. I had a conversation with his new neurologist, who was happy to have telephone consultations with me to minimise the anxiety caused until such a time that Sam needs to be seen regularly. I was concerned when I was told that Dr Rittey was retiring, he had so much experience dealing with children with Batten disease in our local areas, which is a rarity in itself, I didn’t think anyone could compare. However, Dr Mordekar is also experienced in dealing with Batten children which was really reassuring and he seems really nice. I look forward to working with him in the future. If you can say that?? School wise, Sam is still more or less settled. The team he has working with him are still amazing, as are the school as a whole. We have noticed a dip in his speech so a SALT referral was going to be made before the school closed, so I assume we will pick that back up when normal service resumes.
I hope at this time of uncertainty, you are all keeping safe and well. Once this is all over, and we go back to our normal life, maybe a lot of us should take stock and think about what ‘normal’ we want to return to. After all, life is far too short to be anything but happy.
Look after yourselves. Love those who are important to you.
As those who have been following my blog will know, the breakdown of my marriage has been well documented, as has the solicitor battle that followed. Last week I was in court, which saw the culmination of almost a years worth of letters, appointments and phone calls come to a head. Although, unfortunately, we are nowhere near finished yet. Just before Christmas, one of my best friends received the devastating news that she had lost her brother in tragic circumstances. My heart has hurt so much for her and her family that its been difficult trying to find the words to help ease the pain. More than anything else, what I really wanted to do was to be able to make sure that I was there for her the way that she had been for me. She is one of very few who has shown me so much unwavering love and strength through some of my darkest times and dropped whatever she has been doing to give me a hug when I have most needed one. I wanted to be able to attend the funeral when it was planned and show my support for them in anyway I could. As it would happen, the funeral would coincide with the day I was due in court. Out of the entirety of January, what are the chances of the two occurring on the same day. In my life, apparently most things are possible. Last Thursday was one of the longest, emotionally draining days I have experienced to date. Luck (if you can call it that) was sort of on my side and I wasn’t due in court until 2pm which meant I could make the celebration of life that was planned at the crematorium. The service was beautifully done and although the room was filled with such bitter sadness, the amount of love was overwhelming. However hard it was watching my friend, her mum and the rest of her family hurting so much, I’m so in awe of the strength and composure they maintained throughout and I held them in my heart and thoughts for the rest of the day.
It was then my time. My head was already banging by the time I arrived at Doncaster courts. I was scanned in like you would be in an airport, only the unfortunate thing for me was, I wasn’t off anywhere nice…..a bit of sunshine, sand, sea and cocktails would do me the world of good right now I can tell you. Ive never set foot in a courthouse before, I had absolutely no idea how this worked, I honestly felt like a lost child. I wandered upstairs and found my solicitor. We had a long chat about what to expect and what might be said. What he didn’t want to happen was for us to have to go into a courtroom and go into every gory detail about Sam and his condition. He knew how traumatic that would be for not only me but for his dad too. But over the course of the next few hours I would find out that this was exactly what would need to happen. Having looked at the very limited information he had, the judge expressed an opinion of ‘there isn’t enough evidence for me to say which way this will rule, you are poles apart on what you are saying you require, it will have to go to a final hearing.’ It was the last thing I wanted to hear. I didn’t even want to be in court, what the hell was this?!And now not only do I have to go back, to a courthouse where the opposing side is overly familiar with the staff because funnily enough its where their office is based, I’m going to have to go back and be cross examined…..my little black heart skipped with absolute joy…..not. My task is to now prove why the properties I have picked are suitable for the childrens needs (more specifically Sams) and why I require the amount of money that I am asking for.
I will be blunt. the prospect of having to not only outline, but provide a detailed analogy of just what Sam’s condition entails and the level of care, space and equipment he is going to require going forward makes my soul want to cry. Put yourself in my shoes and imagine having to stand in a room full of strangers, firing questions at you asking you to justify that your child’s terminal condition is severe enough that you ‘deserve’ what you have asked for. My brain hurts so much!! I feel that after all this time of fighting backwards and forwards, I’m going to fall at the last hurdle and the judge will rule equality, leaving me with very little pheesable options, with three children under 9 to rehouse. I will have failed them. My very best will not have been good enough.
I now totally understand why some women/men who chose to be stay at home mums/dads and raise their children, remain in unhappy marriages. Add the fear, stress, vulnerability and sleepless nights (as I type this at 03.20am) on top of being a full time parent to three children, one with additional needs……Should I have just stayed where I was, with things how they were or is all this really worth it for the chance to be happy?
Tomorrow marks two years since the day I first had my world turned upside down. Two years ago I was told my seemingly perfectly healthy child, was going to be referred to the visual impairment team. A few short months later, he would be registered as blind. I still feel that appointment like it was yesterday. I thought my world had ended, Sams had ended. I experienced pain like I’d never felt before, and hoped I never would again. I didn’t think I could hurt anymore than I did in that moment. I was so very wrong and I wish I could go back to that place and prepare myself for what was to come. I wish with all my heart that the only thing I had to contend with was that Sam was blind. At least he could live a fulfilling life. Which at the time of his original diagnosis, I didn’t think he would.
Sams ophthalmology appointment at the children’s hospital in Sheffield went as well as it could. People that have followed my blog know we don’t have a very good track record with hospital appointments around Christmas time. So needless to say, I was dreading it. We are still under the care of the wonderful Miss Tandon and I could not be more thankful for that. All examinations done, Sam now has only 30cm vision on his right side, peripherally and 50cm vision on his left side, again peripheral. Ill be honest, we all knew his vision had deteriorated, but it’s one of those things that you don’t want to hear. The rate at which it has deteriorated is crushing. I thought we’d have more time.
Sam and his dad were then asked to leave the room while I had a chat with the wonderful human that is Anamika Tandon. She asked how I was doing, how sam was doing, she held my hand and gave me a hug, I cried, she cried, it was really emotional. I don’t cry in front of people. She told me she sees a lot of children and although they are all treated the same, there aren’t many that she thinks so often about. But she thinks of Sam all the time. To then be told I was a wonderful mum and Sam was a wonderful boy, I was done. My heart couldn’t take anymore and I cried a lot that day. I seem to do a lot of crying still.
It’s got to that funny point in Sam’s journey where the newness has worn off his diagnosis, people who were so interested when we received a terminal diagnosis, continue with their lives, they don’t think about us anymore, they don’t ask anymore because in reality it’s not their nightmare, they don’t have to live it, it doesn’t personally affect them. But you honestly never know what is round the corner. And although I would never wish this on anyone, sometimes I wish people could feel what it’s like to be in the chaos that is my life, the pain in my heart and the thoughts in my head.
It’s been an incredibly long, stressful two years. With more downs than ups and far more scars, physically and mentally, than I care to admit to. You find out who truly loves you, who will always be there to catch you when you fall and who genuinely wants the best for you and your babies. And for this I am so truly thankful. Without these people, I wouldn’t have survived the last 24 months.
2019 is drawing to a close and I can’t say I will be sad to see the back of it. It’s not been a redeeming year, let’s put it that way. 2020 will bring about a lot of changes, changes filled with anticipation, excitement and love and I genuinely look forward to my new year, new beginning.
“I’m so incredibly sorry, but the results have come back and they aren’t good. They have found that Sam has changes in a gene called CLN3, which is something called Juvenile Batten Disease”
Its been a year since I sat in that office with Dr Parker. Not a day goes by when I don’t think about the appointment or the consequences of the words he bestowed upon me that morning. A morning that, in my head was, and still is, catastrophic. I remember building myself up to sit and write the post about Sam’s diagnosis having just started my blog. A week and a half after his appointment, I began to type knowing that I had to start somewhere, to let all the emotions I felt run out somewhere that wasn’t inside my own head. And oh, it felt so monumental at the time. In a way it is still one of the bravest things I have ever done. To open yourself up like a book for the reading, to a community of people, is terrifying. You never quite know how you are going to be perceived or received for that matter. The fear of thinking what you are writing is rubbish, people won’t want to read it, that you’ll be judged for the content of your posts. But I have been so immensely lucky that I have been met with nothing (with the very odd exception) but love and overwhelming support. At the most difficult of times you lovely lot have made this heartache easier to carry.
When I wrote my date with Battens post (still categorically the worst date I’ve ever been on!!) I described it as being trapped in a nightmare, one of those that you can’t quite make sense of and for the majority of the time it still feels that way. Gone are my carefree days of being just a mum to the kids. I’m now in the realm of something completely different. Sometimes this all feels like a dream. Only now, I know the reality is that I won’t ever wake up from it. I just have to learn to live with it. I suppose that’s ok, our journey is still so new. But now instead of just being able to enjoy my children, I feel like I’m always laying in wait for the next thing to hit, trying to prepare myself mentally, physically and emotionally. What will be thrown our way next to deal with on this complex path we travel. It’s exhausting.
Now, I’m not very good at regulating my emotions, so Sam’s diagnosis hit me really hard. I knew it would be difficult but I don’t think I anticipated just quite how much of a rollercoaster it was going to be. Some days there is a rage inside me so strong I feel I could physically destroy anything and everything around me. Others, I don’t even want to get out of bed to face the day as the fatigue and sadness weigh me down to my sheets and the duvet begs me to pull it back over my head.
But here I am. Day after day, functioning, surviving.
It’s such a difficult thing to try to explain to people how, as a parent, you feel dealing with Sams kind of diagnosis. I am first and foremost his mum, his pillar of strength, his go to person if he is hurt, upset, angry and every other need he needs fulfilling. And at the moment, I look like I’m doing fine but the reality is I’m grieving, really hard. And having a really tough time knowing how to process it to ease the pain a little. I am still learning what it’s like and how it feels to grieve for a child that is still alive. There are honestly no words for it. There aren’t many people I know personally, who (thankfully) can empathise with that emotion. It’s a really difficult thing to get to grips with. Guilt still outweighs mostly everything. The massive responsibility I feel for being a contributing factor in giving my child half of this gene that will inevitably take his life from him, and the guilt that I can’t put that right. It’s just another thing I have to learn to live with I suppose. Nothing I do, think or feel will change anything.
I am truly blessed that Sam is here, he’s still healthy at present, he still has a little eyesight left and he is and always will be my beautiful boy. I should be so thankful and sometimes I let that get overshadowed with everything else. Hey, I’m only human. One human, on her own raising 3 children.
So a year after this nightmare began, with my date with the man in the hospital, my relationship with battens has been, let’s say a turbulent one. But one thing is for certain, it damn well shows you how strong you really are, when being strong no longer becomes a choice.
This is another one of Sam’s songs. My mum has a beautiful tattoo of it on her forearm. I don’t really know why I decided to open the laptop tonight, its been a very long week, month even and I needed some kind of outlet. I guess with the boy in question. This week has been really, really hard. The behavioural changes I notice in Sam are becoming more pronounced, more often and often with more vigour than his outbursts before. He’s lashed out at his sister, hit me with the tv remote, thrown his xbox controller at me, thrown food at me, screamed in my face, slapped me, punched me….I could go on but I won’t. Following a conversation with a friend who is in a similar, albeit very different but no less stressful, situation that I find myself in, you tell people things like this and their natural reaction is to laugh or to think it’s funny because you are being quite literally battered by a child, your child. But the harsh reality of it is, when you are living it, it’s not funny at all. Its soul destroying to be honest. It’s the same week in, week out and mentally I cry on the inside every minute, of every day. He struggles to find the language he needs to express himself which often results in angry outbursts. I know he is different but when you are watching it with your own pair of eyes, it becomes so much more noticeable. When I notice these differences the most is when Sam is with his peers or the rest of our family. But this is when it really shows. Sat in my brothers house on Friday and being filled with joy at watching him play with his siblings and his cousins was short-lived. The wave of sadness took over and all I could think of was the impact that Sam’s condition would have not only on his own life, but on the lives of his sisters and his cousins, his Aunt and his uncle. The thing with Batten’s is, it touches everyone involved with the person diagnosed. How do you begin to comprehend what his sisters and younger cousins are going to have to witness over the coming years. Things that no child should ever have to be exposed to at such a young age. But this is what we find ourselves dealing with. The awful possibility that any of the children playing in that room on Friday could carry this gene in some part. All these things you don’t even think about, what you don’t want to think about until it taints your life in some way. And yet you put the mask back on to try to make things as normal for them as you can. Only in private can that mask come off to reveal the hollow shell of yourself that’s left beneath. There is no other way to describe the emptiness and loneliness I feel when I come home and shut the door to whatever is on the outside of these four walls. Im here, on my own after another horrendously long day, in the house, with my children, and all I can do is slide down the kitchen side and cry on the floor while they are upstairs, because every bone in my body aches. My eyes are tired from the lack of sleep and sore from rubbing the tears away. My brain hurts, it overthinks, it overworks, it worries, it berates me for not being the best mum I could be that day. I am running on flat out empty, hanging on with my fingernails and I still feel like I could have given more, I should have given more. I could have done more, loved more, cared more, just been more. And all I can think is that I am failing my own children because I physically and mentally cannot give them anymore. On top of dealing with Sam’s condition and life as a single mum, there is so much going on for my brain to process and sometimes I think it would be easier just to give up. So to anyone who has seen me and thought I haven’t really looked myself (yes I have seen your concerned glances, thank you!!) you thought right. At the moment I really don’t feel myself. In fact, I feel pretty rubbish. This is very much still a grieving process, but like Battens itself, it has no set path. I feel all over the place and just very, very sad. Friday was children in need, and for years I’ve watched these families struggles and cried my heart out for children that weren’t my own, that I didn’t even know. But then it hits you and you think, fuck, we are one of those families now! Now that is a sobering thought.
It’s been a while. Life has a sneaky habit of getting on top of me, as I said in my facebook post on the page. I haven’t really felt myself for a while nor have I been in the right place to write about anything enough to do it justice. But there are just some things that need to be written about and Sam Rocks is one of them. After the overwhelming success of the first three peaks challenge (and subsequent three peaks challenge by another group of fantastic people) my beautiful friend Carolyn was well and truly bitten by the fundraising bug. And so she had an idea. An idea that over the last few months would consume our every waking minute and end up making it the amazing success that it was. Cal decided she wanted to host a music night to raise money for Sam. We needed a venue and a band, and very quickly, our event was already starting to take shape. Jess, my tattooist and beautiful friend happened to be chatting to Simon one afternoon in the early stages of planning and mentioned Sitwell golf club to him as an alternative venue to the cricket club that we were planning to use again. This was an exciting and terrifying prospect at the same time. Bigger venue, more tickets to sell, could we really pull this off? One meeting later with Sue Cousins and the rest paled into insignificance, the date was booked and the planning and group chat madness began. We also very quickly gained a band (again thanks to Simon’s awesome networking skills) in the form of Steve Gascoigne, who being the beautiful human that he is, offered up his time to help us out. I honestly really miss waking up in the morning to at least 5 messages discussing table decorations, colour schemes, song choices, money squares, photo booths and sponsors. It gave my very tired brain something lovely to focus on and look forward to every single morning. Our planning committee consisted of myself, Cal, Kim and Corinne. And if I do say so myself, we made one epic team. We all have very different qualities, each bringing something different to the table. We all have a different circle of friends and a diverse range of contacts that really paid off and we just worked incredibly well together. The planning meetings in the pub were of course a bonus…… We arranged and attended meetings, hundreds of emails were sent back and forth, facebook pages were set up and received an overwhelming response, the groups inbox was constantly on the go, ideas were thrown here there and everywhere as we prepared ourselves for tickets to go on sale. I’m not sure me or Cal quite anticipated the madness that would be the night of the ticket release. Neither of us knew where to start. There was online to contend with along with people rocking up to the house to purchase and pay for tickets, it was chaos!!But it was so heartwarming. Our hard work advertising and plugging the event to anyone and everyone that would listen, had clearly worked as all tables available had almost sold out in the first hour. But as the number of tickets we sold crept up, so did our nerves. Could we really do this??What if people were disappointed?What if everything went wrong. My anxiety was in overdrive, and I’m sure I don’t just speak for myself here. This was the first time any of us had organised anything like what we were about to do and I prayed to any kind of deity that would listen to me that it would go well.
As the morning of #samrocks19 dawned and the school run was done, the hard work started. Our little team of helpers headed down to the venue to start decorating and setting up. Here we were met by Sue and Carl, who worked so hard and were amazing, answering all our questions and finding everything that we might need. And within a couple of hours, we were all set to go.
The rest of the afternoon passed in a bit of a blur to be honest. And at 6.30pm we were as ready as we were going to be. Gin in hand to try to steady our nerves, we welcomed our first guests in just before 7pm. And then everyone else arrived…. When you say it out loud, 200 people, it doesn’t sound too bad. But when you physically see 200 people in a room, that have come together to support you and your family, it’s mind-blowing. The atmosphere was electric and there was so much love. All these people had come to support us and the cause that we feel so passionate about. Each one of them were there because they wanted to be and that is something I will never forget.
I had the worst case of butterflies as I knew the speech I had prepared was looming. I felt sick to the pit of my stomach with nerves but it was something I had to do. At race night I’d had everything planned out so lovely in my head, and after one too many gins, it hadn’t panned out so well. This time, I wanted to get it right. Not just for me but there were so many people I had to thank and I wanted to do them justice. I stood on stage in front of a microphone and could have quite happily run away. But I didn’t. Reading out what I had taken such care to write felt harder than it should have been. I was hit by wave after wave of emotion, fighting back the lump in my throat, looking at the sea of people in front of me, as the list rolled off my tongue in a voice that didn’t even feel like my own. All these people, in whatever way they were involved, had done this to support Sam. What an amazing thing to be faced with.
And then began the music, the singing and the dancing. What a fantastic night it turned out to be. The dance floor was never empty (neither was the bar) and the bands were incredible. We had managed to pull it off without a hitch. Everything worked as it should and every plan we made had been followed through to near enough perfection.
When we first started out, none of us anticipated just what a success this night would be. But a roaring success it was. With everyones help and generosity, we raised a staggering amount of money and had a cracking good night in the process. Again, I will take this opportunity to thank every single person who came and who was involved in any way to make sam rocks 2019 the night that it was. Without you, we couldn’t have done it.
And to my lovely ladies, we made it!!!!!!!You are the most beautiful humans and Im so honoured to have shared this experience with you and to have made so many wonderful memories.
Genuinely sad that it was over, and our group chat suddenly very silent, we started to get itchy feet and a slow rumble started…….
It’s taken me a week of oppressive overthinking and general pondering whether to write this post or not. Given the fact the threat of being taken to court is still looming over me, our visit to London is something I feel needs to be shared. Last Thursday was Sams visit to Great Ormond Street hospital. This visit was something I had been dreading since the idea was put forward to me that we meet one of the specialists in London. On the one hand, speaking to someone and having them assess Sam as an expert in their field could only be a good thing right? But then on the other hand, was I ready and prepared to hear what they had to say when those assessments had been done. When our appointment was made, I spoke to the lovely Laura, who is the Batten nurse specialist, and is genuinely a wonderful human who goes above and beyond to help and answer any questions, no matter how silly they might feel. After chatting to Laura, we agreed that as Sams speech and mobility were still ok at this moment in time, it wouldn’t be necessary for him to attend one of the multidisciplinary appointments that Professor Gissen holds, instead we could just book in for one of his normal clinics and Sam would be overlooked by a pyschologist. The prospect of also having to spend the full day in the company of some who despises me did not fill me with the joys of spring, my stress levels were at an all time high, as was my anxiety. But as always I do what I have to do for the sake of Sam, sometimes to the detriment of my own health and wellbeing.
The trip down was uneventful. I got to spend a blissful 2 hours with my headphones on, music blaring, with my eyes closed, pretending I was anywhere else but sat on a train heading to this appointment. Luckily the weather was beautiful. Up until the point of getting off the train, Sam had been so excited about being able to catch Pokemon somewhere different. And then he asked why we were in London. This is a conversation I’d had with him many times over the previous two weeks before our visit to try to prepare him, but he had simply forgotten. The anxiety and fear caused now by any hospital appointment is overwhelming. Not only for Sam but the deep sadness I feel of having to put him through something he doesn’t want to do, as necessary as it is.
Hospital appointments for sam are almost always linked back to the weeks and months we spent backwards and forwards to various hospitals where they would put drops in his eyes to dilate them to examine him or to take samples of blood from him. And this is etched in his memory. And this in turn triggers his anxiety reflex. Upon remembering what we were actually in London for, he cried on and off for an hour, refusing to go, asking me why he had to when he didn’t want to. I always find this aspect of Sam’s condition really diffcult. The appointments are necessary to track his progress and decline in equal measure. But watching him so upset and worked up never gets any easier. And unforunately hospital visits are going to be something that are very regular occurrences. I would never put my child through something that wasn’t necessary. As the appointment at GOSH would soon prove to be.
We checked in for Sams appointment and a nurse took him to be weighed and measured. And then we waited. We were called into a room where Professor Gissen introduced himself to us and to Sam. Sam was then asked to leave the room….. With a bit of persuasion he left with a lovely nurse, who was funnily enough from Doncaster, and she would look after him for the remainder of the appointment.
Upon Sam leaving, the good Dr explained they wouldn’t be doing anything with Sam, no assessment, no examination, nothing. He then asked us why we had travelled all the way to London when Sam already had a very good Dr in Sheffield…. I knew as soon as the words had left his tongue that I would not click with this health professional and to be honest I couldn’t wait to get out of the room. As I’ve said before, I find when Dr’s get passed a certain level in their career, they loose their ability to be personable and approachable. I always feel they lose sight of what they went into the job for and develop an air of arrogance. May just be my opinion, but in my vast experience of meeting health professionals, this has always been the case. I also know that Sam has a fantastic team in Sheffield who look after him, and luckily he has a neurologist who has a lot of experience in dealing with children with CLN3. But we had travelled to London because it had been suggested to us that it would be beneficial for Sam. Firstly Professor Gissen asked what we wanted to know. I asked what he could tell me about his knowledge of Battens. He deals with mostly children with CLN2 given the age of the patients and their life expectancy, their care is always under great Ormond street. Patients with CLN3 may start their treatment at GOSH, but in the instance that some live into adulthood, their care is then transferred. So said with the very airy, fairy demeanour of someone who wasn’t really very interested, he didn’t see many patients with CLN3. I went on to further question him about potential seizures Sam had been having. Again, appearing disinterested, he shrugged his shoulders and said that without an EEG, he couldn’t tell me, and an EEG could be done in Sheffield. He then said that Sam was lucky he’d even seen a neurologist given his absence of seizures at present, as down in London he wouldn’t be seeing one. Not really very reassuring.
Then came the bombshell of Professor Gissen being asked about potential trials being held. Now, do not get me wrong, given my medial background, I am fully aware and understand the process of medical trials. I know how important they are with regards to the developments of drugs and treatments for all kinds of illnesses. But given the choice, would I openly put myself forward to be part of a trial? Or worse, could I make a decision to put my child forward to be part of trials, in their first round of testing, to be subjected to invasive procedures that were not necessary, especially when you take into account he knows nothing about his condition, his fear of hospitals and no concrete evidence to suggest that there would be any positive benefit for him. The answer, for me, was an easy choice to make.
Absolutely, over my dead body, not.
There are currently trials being held in Ohio, where Sam would need to be for 3 months and would be subjected to a lumbar puncture where a virus would then be injected into his spinal fluid in hope that it would reach his brain, and maybe alter some of the genetic code that causes his Batten disease. When asked if this was something that we would be interested in, without faltering, my resounding answer was no. What happened next I don’t think I will ever forgive or forget. As a parent to a child with a life limiting illness, of course, I would love for there to be some kind of miracle cure, anything to keep my child happy, healthy and pain free. A clinical trial, especially in the first stages, is definitely not that. Essentially what it would entail would be me, as Sams mother agreeing to sign over the rights of my child for some company in America to use him as a guinea pig. To put him through a procedure, however ‘safe’ that may be, is totally unnecessary, with nothing to suggest it would make his condition better. It could make it worse, it may do nothing at all. But that was not a decision I was willing to make for my child. My ex husband and Professor Gissen both pulled into question my answer and asked why I wouldn’t want Sam on the trial.
Honestly as a parent, I felt the answer was obvious. I wouldn’t make the choice for myself, and damn well would never make the decision for any of my children. A clinical trial nearing the end of its testing, with a shed load of evidence and medication proven to work, I may be more convinced. But for a health professional to tell me to ‘put my own fears aside about the procedure and consider it’ was to my mind beyond reasonable or professional. I’m not uneducated, I do my research, I know my child!!And then there was the practicalities to consider. Moving to America for three months, uprooting three children away from their home, school, friends, family; the cost, the commitment….for an experiment to be performed on a child, with no evidence based research to say it would help. An invasive clinical trial is no place for an 8 year old who wouldn’t understand what the hell was going on. A child who doesn’t want people to touch his eyes, let alone stick something in his spine. And yet here I was, feeling railroaded and bullied by two men who profess to know what they think is best for my child, to ‘give him a chance’
And so our appointment ended on an email sent to said company to see if they would accept Sam onto the trial, and a decision firmly made in my head that we would not be returning to London for anymore appointments. It made me internally thankful for the team we have in Sheffield. A phonecall the following day from Professor Gissen would give me the opportunity to tell him how the appointment had made me feel and inform him that Sam would not be available for the trial.
On reflection, the irony is not lost on me that those who think I am in the wrong for writing this blog, wanting to educate people about Sam’s condition and share our journey, were also those so willing to put their child through something so traumatic that he would remember it for the rest of his life. What is really more harmful?
I am not willing to play god with my child, I never was and I never will be. As his mother, I want to give him the very best that I can with whatever time I am gifted with him. What is so wrong with that?
When you know you are well and truly not in Kansas anymore…..today has been a shitter in the form of an unwanted text.
When I started writing this blog, it was the only outlet I had. To truly express how I was really feeling at a time when I have never felt more alone. Allowing every thought and emotion I had at the time flow freely onto the screen, made the noise in my head and the pain in my heart just a little less loud, and I found it really helped to process just some of the new information I’d been thrown. Granted, it morphed into more of a diary of my life up to now, but I found it no less therapeutic. I decided to share it. So that people knew what this journey was about. To allow them to learn about Sam, his condition, his story. Maybe if it enabled someone to grasp just some small idea of how it felt to be living this life, it would have done its job. But mostly I decided to share it so didn’t feel so alone. My marriage had irrevocably broken down and the kind of conversations I wanted to have, weren’t ones you could have with three small children. So I found solace in my writing. I allowed people in to my life. Some knew me, some I’d never met or spoken to before. The people who really know me, know how high my walls really are, letting people in is not something I usually do. The genuine kindness and love generated from sharing something so personal was and still is incredibly overwhelming and it really pulled me through some of my darkest moments of despair.
I love that people want to know who Sam is, what his condition is and how life changing his diagnosis has been. They want to know us as a family. I have loved regaining the freedom to use my voice and its more than wonderful when people listen and take notice of what I have to say. For too long have I lived in the shadow of what other people want me to be. But what I have loved the most is gaining the most amazing support network of people. I am so thankful to each person who takes the time to read the posts I write, without you all, I wouldn’t have come as far as I have.
But sadly, yet again I find myself under the threat of having to stop writing the blog I have put my soul into. The threat of having to stop fundraising, any media coverage, social media sharing, being able to create something so positive out of something so devastating, is almost too much. Is what I’m doing so wrong that I am again being bullied into stopping what I enjoy doing?
I am aware that most of my followers are so very genuine, but if you are here for any other reason than to follow our journey then please, don’t follow it. This blog is my outlet. It’s not somewhere for you to scrounge information from to pass to parties not involved.
As a family we need your love, your guidance and your support more than ever. I have never asked for anything more.
You are my lifeline, and I won’t give you up that easy.
When Sam started primary school, I knew no one from Northfield. There were two children from playgroup who would be attending the same unit, but that was about as far as my links with the school went. As the school year ticked by and the children were given their new class places in F2 was when I began to make friends of my own. The parents in Sams class are generally amazing individuals. As a group we are supportive of the needs of other parents and try our best to help each other out in times of need. Some I am closer to than others but on the whole, we get on pretty well. My friendship with Cal and Simon started through another mum. I randomly got talking to Cal outside F1 doing her pick up duties as a childminder, she invited me for a cuppa one day and I suppose you could say the rest is history.
Carolyn is such a beautiful human. She has the biggest heart and has the most wonderful energy to be around. Her house feels like a home and you are always so welcome there. My favourite thing about walking down the drive is that it always smells like homemade food and it makes my heart happy. Now Cal has seen me through most of Sams journey, from the start of his problems in Beths class, where as his mother and his teacher we were both so frustrated that I would walk into Cals house, sit on the carpet and cry because I didn’t know what to do. But she always had the right words for me, to soothe me and to encourage me to keep my chin up. I soon learnt that I could trust her and I do so with most details of my life. Which really counts for a lot. I love nothing more than rocking up to her home in my Pjs, walking into the kitchen and the first thing she does is hands me a gin and asks me if I’ve eaten. Simon is equally as beautiful. His heart is just as big as Cals and it has been an absolute pleasure having the opportunity to get to know him the more time I have spent at their home.
So the purpose of this blog post is that I feel that these two beautiful people deserve a post of their own. When they learnt of Sam’s diagnosis, Cal being one of the first people I told, with no hesitation, they jumped with both feet into their fundraising efforts. Simon knew instantly that he was going to do the three peaks. Throughout the planning and their training he has kept me up to date and involved, and I have really loved seeing him and he other lads getting ready for the big day. Cal has also had a massive input in putting ideas forward and has played a huge part in raising the fantastic amount of money that they have from Sams wish fund. Without the love and guidance of these two, life would have been just that bit harder to contemplate. They have allowed me into their family unit and I couldn’t be more thankful to them both. I have known people for upwards of 20 years who haven’t shown me half the amount of support and dedication these people have, and some ‘friends’ have chosen to walk away. But you never really lose friends, you only learn who the true ones are. People are ‘given’ to us for specific reasons in our life and I have never been more thankful to have such beautiful people walk into mine. Thank you both for helping to hold my pieces together when I’ve been falling apart, even if you haven’t always known it. So much love to you both.
A massive shout out to the other gentlemen who completed the peaks too. Some of them I have had the pleasure of meeting, some of them I haven’t and yet these 7 wonderful people, some of which don’t even personally know sam, were so eager and willing to put themselves through the training, the hard work, sweat and I’m sure some tears. But through their sheer grit and determination they all successfully completed the task they set out to do. My heart has never felt as full as it did when we learnt they were all back safe and sound at the B&B and they had achieved what they really wanted to. Proud does not even come close and I look forward to spending time with you on any ventures you embark on next. It has been my pleasure getting to know you. And not forgetting the wonderful friends, partners and children of these fantastic humans, who have also given their time to help in fundraising. I have so much love and respect for you all.
“Friendship isn’t about who you have known the longest. Its about who walked into your life, said ‘I’m here for you’ and proved it”
Justabattensmum 