I hope that when you finally get the chance to read this you are sat somewhere listening to the sound of the sea, with a nice glass of wine in your hand with an ever faithful dog by your side.
I wanted to write to you to say that I hope with every fibre of my being that you found the strength to survive what I know feels like a multitude of impossible, unfathomable situations, because I know right now you are really digging deep to find any reason to go on. I know the thoughts, scenarios, doubts, processes, regrets and fear that keep you wide awake at night when the rest of the house is finally silent, and I’m not here to tell you that gets any easier, just that it’s not permanent.
You know exactly how hard this has been. You remember the nights that blurred together, when pure exhaustion burned through your bones and you wondered how much longer you could do this. You remember the fear. The fear not just of losing them, but of watching them suffer, of knowing you can’t stop what’s coming.
There were moments along the way when the thought of living another day like this felt unbearable. When all you wanted to do was disappear, not because you didn’t love them, but because loving them hurt so much. The world doesn’t understand what it means to keep going when your heart breaks a little more every day. But you kept going anyway.
You stayed. You stayed through the screaming, the seizures, the hospital visits, the phone calls, TAF meetings, the endless forms and the empty promises of support that never came. You stayed through the anger, and the guilt and the the hollow sort of grief that comes from losing them one piece at a time. You stayed when it felt like no one else saw how heavy it all was.
And staying, was love in its purest form. Not the kind of love that gets celebrated, but the kind that quietly saves lives. You chose to keep breathing because they needed you. Because you are their world, their safety, their constant.
In reading this, maybe you’ve lost one of them. Maybe both. Maybe you are still in the middle of it all. Whatever the reason, please remember, you did not fail them. You loved them with everything you had, even when it destroyed you. You carried more pain than one person should ever have to carry, and you are still here. That is not weakness.
When it feels unbearable again, and it will, come back to this truth: you are the same person who made it through the darkest of times. You maybe scarred, angry, numb but you are still love in motion. That love is why you are still breathing.
You don’t have to be ok. You just have to be here.
With love
The version of you who stayed, even when it hurt too much.
I can’t quite believe it’s been almost a year since I last posted, and once again the decision to renew the blog was taken out of my hands……..as it auto renewed for the second time. I truly wish I had more time to write or indeed more to say at times, but nevertheless I’m still here and plodding on. Every year the ‘anniversary’ of diagnosis day looms and December is here once again. It feels wrong calling it an anniversary. The connotations of the word conjure up happiness and joy. A batten disease diagnosis is most definitely not something to rejoice over. Surely it’s not too much to hope for a nice Christmas and new year, even just once?
This year has again been one full of ups and downs, as most batten journeys are. We have felt huge and sometimes unexpected losses in our very small community, which brings home to you that tomorrow is never promised to anyone and the need to make every moment count becomes evermore imminent. On the whole it has been a relatively stable year, but that doesn’t mean that it has been without its challenges.
Sam’s symptomatic epilepsy started when he was 10, to a point where he was having 1-2 seizures a week, until he was started on Keppra. With the exception of a couple of breakthrough seizures, his epilepsy was well controlled with the medication and he suffered very little in the way of side effects. Fast forward to this year, the fact that he has grown a good few inches in height and thankfully put on some weight, meant his epilepsy drug dosage wasn’t as effective as it should be. So we saw an increase in seizures, and no matter how many times you see one, they are still so uncomfortable and terrifying in equal measure to witness. The fact that there is absolutely nothing you can do, aside the obvious of making him comfortable, you are rendered so completely useless, it’s heartbreaking. With the exception of one lengthy seizure where he had a fight with the kitchen table and ended up with a bruise the size of a bagel on his head and multiple friction burns from seizing against the kitchen floor/table, we are lucky in the sense that the others were short and self resolving. Nevertheless, it still goes against the grain to watch your child suffer and not be able to do anything to help. So armed with a plan to up the dosage of his Keppra, he has had one seizure since October, so fingers crossed now that the meds have had time to build up in his system, we should be stable for a while again.
He is still absolutely loving school. He has his first male teacher this year and is living his best life. He has a good friendship group and loves the staff that look after him so well, that it honestly makes my heart want to burst. He’s gone from such a shy boy that would never feel comfortable enough to contribute in any class through primary school, to actively joining in all of his classes, contributing meaningful answers and participating in every aspect of his school life. To hear from his teachers that he is a well thought of young man means so much. And the fact that he is enthusiastic about going every morning and returns home excited about his day makes me happy. I am absolutely loving spending my time with him, even though his relentless questions drive me insane, his love for Pokemon and wanting to share with me his massive encyclopaedia are the small things that I hold on to. His huge passion for dinosaurs continues, his morbid curiosity for creepy crawlies and recently blue ringed octopi, will always make me wonder what he would have gone on to achieve if things were different. For now, I celebrate the the things he is achieving in the moment, no matter how small it may seem to others, it’s always a win to me.
As time has crept on, the need for Sam to use a wheelchair has increased. For his safety and for others caring for him. Luckily, it’s another one of those things that he quite enjoys. He doesn’t have to focus so hard on not falling over, or trying to navigate spaces that are unfamiliar, he can sit in his chair, relax and enjoy his surroundings. Which, if you know Sam, you will know his love for being nosey and into everyone else’s business. Especially if he gets to enjoy it with a hot decaf coffee and a snickers.
But as we know, Batten disease is not linear. No two children ever present the same which makes dealing with the disease and its progression so difficult. There is no set path and what works for one child will not work for another. Which is where we move on to Alice. We moved Alice schools in September of this year. It was always on the cards, but her condition negated that we needed to make this move sooner than originally anticipated. We later found out that her needs were not being appropriately met, nor was the appropriate amount of support in place to help her. With the exception of the visual impairment team, who have been incredible throughout this hellish journey. From the beginning of year 4 we really struggled trying to help Alice regulate her emotions. The first week in her new class, her PE sessions weren’t changed to be inclusive to her needs, a theme that would become a regular occurrence throughout this school year, and she got smacked in the face with a ball. From there things progressively got worse to a point where she would scream the house down from the minute she woke up until she got to the classroom. She would be managed throughout the day, but would meltdown the minute she left, having masked all day to try and conform. She was genuinely the most unhappy, unsettled child. She had gone from a happy, smiley little girl that loved to laugh, to being so anxious and depressed it was pitiful to watch.
Alices ability to cognitively process her thoughts and feelings is pretty much none existent, as is her ability to explain why she is feeling the way she does. She knows the emotion she is feeling, ie I’m angry, or I’m sad, but she cannot explain to you why. As a parent, again this is awful to watch your child struggle but not know how to actively help her. So we decided to request a change of setting for her, naming the Newman site as our chosen provision. The EHCP process is very long and drawn out, but eventually we were given the go ahead to say Alice had a place there from September. She was so excited. And for the first few weeks, she absolutely loved it. I naively thought she was going to be just like sam, and be so settled. However, the week before October half term, Alices mood swung again, back to screaming the house down from the minute she wakes up to the minute she falls to sleep. We have also had to let go of our beloved dance sessions for Alice and potentially may have to do the same with horse riding, as the anxiety is just too much for her to handle. Which is at a huge detriment to her mobility but ultimately her happiness is what matters most.
We have over the last year exhausted every distraction technique and avoidance of triggers (if you can even identify one) going, to no avail. Anxiety is such a crippling part of Batten disease and it seems to be just taking over Alice at the moment. We have been trying to get her started on some medication to help her since May this year, but trying to get anything sorted through the community Paed system is an absolute nightmare. Her new school have been incredible in trying to help. Her teacher has done her own research into Batten disease, reached out to the BDFA for advice and had lengthy conversations with me to see what she can do to help. It does make you feel better knowing that someone has a real interest in helping your child, rather than seeing her as a hinderance in the classroom.
With Alice, some weeks are better than others. There are glimpses of the old Alice there when she is dancing and singing, or doing her gymnastics to teach George and living her best life with cosmic yoga. And then there are times where her mood is so low and angry that it makes you question your own sanity, whilst you put your own back out for the umpteenth time because she is a spicy little bean, who puts up a good physical fight when she doesn’t want to do something. Sometimes finding the tiny ways to break through are our only victory in a week, and they are all too often few and far between. All I want in the time we have with Alice, is for her to be happy. It’s just difficult to know how to achieve that at the moment.
As for me, I think treading water is about the best way to describe how I feel. There are difficult conversations I have to have on a regular basis, with health professionals mostly and it really does take it out of you. What you see on the surface is nowhere even close to what is going on underneath. I am scared. Terrified. Anxiety needles away at my insides every single minute of the day, because although I know inevitably what’s coming, I don’t know what that is going to look like for Sam or Alice, how much are they both going to suffer and how I will ever learn to live without them? Every year that passes, is another year less that I have with my children and I have made peace with the fact that it’s one of those things that I will never really process. I don’t think it’s reasonable to even think it could be processed. You don’t ever come to terms with the death of a child, or indeed the living grief cycle you continually go through. I still find it difficult to see the kids old friends and classmates on my Facebook feed, change, grow and achieve. Equally being part of a blended family and seeing David’s children reach adulthood and discover life is also hard to stomach. It’s not bitterness I feel, just desperate sadness that I have been robbed of the same future for my children and instead I am talking about their funeral plans.
Yesterday we started the process of advanced care plans for both Sam and Alice. Anyone who has done one of these documents will know that it’s a difficult document to work through and it breaches some uncomfortable questions. And we did it twice over. Discussing what your child would want surrounding their death, what we would want as their parents, what their siblings would want, would they want to die at home, in a hospice, would they like to be cremated or buried; its never a conversation I ever saw myself having. And although I am so thankful to the wonderful nurses at Bluebell wood, who’s kindness and care for everyone involved in our journey never falters, I managed to hold it together until they left. As I said goodbye and closed the door, I sobbed until my chest hurt. And I have cried on and off since. The good thing is that once these documents are in place, it means that any health professional that comes into contact with Sam and Alice will have access to it, and it means everyone is immediately on the same page. My problem is that myself and my ex husband have to be on the same page, which hasn’t happened since we separated and subsequently divorced. So the sections addressing our wishes surrounding resusitation could be problematic. But until he has engaged with the service and been through the same process as we have, we won’t know what his thoughts are. So I am prepping myself for more hostility and contradictory behaviour, but its not unfamiliar ground and we will cross that bridge when we get to it. As a service, bluebell wood offer counselling, and to be fair I know that it can be a huge benefit but I’m just not sure I’m ready, or indeed will ever be ready to open myself up to someone new considering how long it took to find Dawn and build up the relationship I had with her. Life just really sucks ass sometimes.
So as Christmas approaches and the end of another year, I am thankful that I have been able to spend time with the people I love. We have managed to make some wonderful memories with the kids and with Winter wonderland at Center Parcs still to look forward to, I hope Sam can fully enjoy his wish trip, kindly donated through Create a dream foundation. We are so fortunate to be surrounded by some incredible people. So thank you to those who continue to show up for us, that support us with no questions asked and love us all unconditionally. It means everything. And for those that don’t, it really is your loss.
I wasn’t going to continue with my blog. Every year up until now, there was never any question as to whether or not I would renew the domain. But this year was different. I have been sat with my grief for a very long time and the words just simply do not come. Instead they sit heavy in my chest and refuse to come out. Who really wants to hear that you are disappointed to wake up in a morning and that you are feeling more like the ashes than the phoenix?
December is always a really hard month. It’s a reminder of diagnosis and it’s a reminder of loss. Even before Sam’s diagnosis, it was rough. So I suppose I can be forgiven for not being full of Christmas cheer. One of the things I haven’t fully processed and I don’t know if I ever will, was losing Holly and Star. I still can’t think about them without my eyes leaking and a longing for them to be back with me. My ex husband used to joke that I would choose the dogs over him, although little did he know, I absolutely would have. I know to many people, and especially those who haven’t had an animal before, a dog is just a pet. But Holly was my first baby. From a tiny 7 1/2 week old puppy, she was everything I had ever wanted. She was mine to call my own and I absolutely loved her. She was so in tune with how I was feeling and instinctively knew when I needed her. And that is what I miss the most. No one to question who or what or why, but just to be. In the moment, no judgment. She did that for me everyday because she wanted to do and I owe so much to her. I am just so sad that it was her time to leave when I really needed her the most. But that’s incredibly selfish of me. And then there was my little Star. She was just the quirkiest little staffy I have ever met and was a joy. She never really grew out of her puppy stage and loved to play. I battle with the guilt of how I had to say goodbye to Star every single time I pass the vet surgery. Holly was at home, surrounded by love and the kindest vet team I have ever met, who talked us through every step of the process, and gave us time. With Star I didn’t have that luxury. She became very unwell, very quickly just 18 days after her sister and the only choice I had was to let her go. Within 20 minutes of arriving at the vet surgery she was gone and I was getting back into an empty car. It was cold and clinical and because of the covid restrictions, I was alone. I absolutely loathed every second of it, that’s not how it should have been. It wasn’t what I wanted for her and she deserved so much more. Ultimately I know it was the right thing to do for her, but I wish things were different. But the grief of losing both girls was something I hadn’t really anticipated. I knew it would be hard, but I didn’t expect it to hurt as much as it does and for as long.
And then of course we have the anniversary of diagnosis day. Its a day you always remember and a day that never gets any easier. With each year that passes by, each birthday milestone, is another reminder that the clock for a Batten child is always ticking. I have stopped trying to guess what next year might look like, or the year after that because the truth of that scares me. We have been relatively lucky in that until very recently, Sam’s condition has been mostly stable. In the last few months we have seen a deterioration in both his mobility and his eyesight. He has weakness in both hands now so he finds it difficult to grasp y0ur hand back when you are holding his, he is having falls quite regularly, both at home and at school and he is feeling less confident than he was using the remaining eyesight he has left to navigate things on his own, seeking support when he needs it. His speech is hanging in there and although it is very difficult sometimes to fathom what he’s saying, we manage most of the time.
And then there is Alice. Alice is a whole different ball game. Her behaviour is increasingly difficult to manage. She chooses mostly to ignore you and still has a morbid obsession with death. Everything she touches has to go in her mouth, regardless of what that might be, and although I understand the behaviour it doesn’t make it any less frustrating. Aside from her behaviour, her eyesight has also seen another dip. Unfortunately, when her eyesight dips, or she is unwell or tired, is when her behaviour is at its worst. Fortunately, at the moment, the sleep regimen the community paediatrician trialled her on, is currently very effective. She falls asleep the majority of the time within half an hour and sleeps through until the morning, often having to be woken. At least her brain is getting some down time.
We have however been able to make some lovely memories as a family. Like going to the Lake District and back to Legoland, which the kids all loved.
If I am honest, I have really been struggling the last few months. With battling the social care system, phonecalls, emails, messages about the kids to make every single day, its easy to loose yourself and I have found myself apologising to people for being a bad friend for not keeping in touch as much as I should. Sometimes I just don’t have the headspace because I am so wrapped up in trying to do the right thing for the kids. Im not trying to make excuses for myself but I will admit that I have never felt more alone on this journey, than I have recently, and honestly it feels shit. The danger that comes with this is that it becomes easier to keep yourself to yourself. You don’t feel like a bother to anyone and you begin to shut down. Which is where the war waged when it came to keeping the blog open. I don’t want to burden or bring other people down with my sadness or grief, and by writing, am I not just projecting that onto whoever else reads through the depths of my despair if I were to truly write everything I feel?
As it were, the decision was taken out of my hands and A Batten mums guide to life was auto renewed. So who knows what lies ahead. Just wake me up when December is over xx
Living with Batten Disease, is like being stood in the middle of a desert. You are completely alone, there is nothing around you but a stark, vast wilderness. Until out of nowhere, there is a heard of wildebeest heading towards you. There is nowhere to hide. You cannot stop the stampede, or slow it, or change it’s direction. You just have to stand and face it. And every single day, that is what this diagnosis feels like.
My blog is well overdue an update, but the truth is, I just haven’t been able to find the heart to write. Living with one child with Batten disease was hard. Learning to live with the uncomfortable truths of the disease and what the future looked like for my child, was and still is, torture. But the day Alice got her diagnosis, I changed. My heart could never be the same. I have said before, I didn’t think a heart could break twice. But it can, and it hurts even more the second time round and I truly don’t think there is ever any coming back from that. There will always be a part of it that is damaged. Every single day I try my hardest to not let Sam or Alice’s diagnosis define who they are. But some days it does. Some days I don’t recognise my own children, and I know one day soon there will come a day that they truly won’t recognise me. And that destroys me.
Where do I start with Sam? Sam’s condition has been relatively stable for the last 18 months or so, his eyesight included. Which is so positive. I have phonecalls from his care team and his new school who tell me how well he is doing, and it makes me feel content that he is achieving what he can for now. Now, this doesn’t mean we don’t have our periods of struggle, because we do. Sam has always had a noticeable stammer, and this became more pronounced as his condition progressed. Some days we have no trouble understanding him, but we are finding that we now have more days where we struggle to understand what he is trying to say. This leads to frustration on both our parts. He also talks incessantly and repeats far more than he used to. He will ask the same question over and over, or repeat the same word over and over again, ‘mummy’ being a particular favourite. Sometimes I can have heard my name 500 times before he leaves for school in a morning, and that is no exaggeration. The one person who hears their name more in this house than me, is Scarlett. And I know I should be so thankful that he can still talk, and please don’t misunderstand me, I truly am, but the repetition and incessant talking does drain you when there is no rest from it.
Sams behaviour can also be unpredictable. Not necessarily in an aggressive way, although we do have our moments where he is smashing another tv up, breaking lamps or trashing his bedroom, but more doing inappropriate things. Like being incredibly loud in a quiet environment, screaming, shouting, clapping, making random noises. Saying or doing inappropriate things in a given situation, like laughing when someone is crying or has hurt themselves, or saying something that would embarrass someone, and this is difficult to manage. There are also times when he doesn’t want to do certain activities, so he will become agitated and say things that he knows will hurt your feelings. He will always say sorry after, but it hurts no less.
There are days where Sam will still ask why don’t his eyes work, or when will he stop having seizures, when will they go away forever, when will he be better and these are the days that my heart hurts the most because I see and feel his sadness when I tell him none of these things will happen because it’s part of his condition.
And then there is Alice.
Even despite his outbursts, Sams is and has always been a pretty easy going, shy, very careful child. Despite how Batten disease has changed parts of his behaviours and mood, this still for the main part remains. Alice is completely the opposite. She is fiery, strong willed and even as a small child would test the patience of a saint. If she doesn’t want to do something or feels she is being wronged, you and the rest of the world will know about it. No two children in any family are the same, so I am not making comparisons, but it still amazes me (and not in a good way) that two children who have the same condition, can present so completely differently.
As her condition has progressed, Alice’s behavioural changes have at times been absolutely unbearable coupled with not wanting to go to sleep, she is driving me to the brink of whatever little sanity I have left. She has meltdowns that are uncontrollable. Sometimes you can understand the triggers, other times the trigger is genuinely unknown to anyone other than Alice. She will scream the most god awful blood curdling screams, shout, cry, throw things, throw herself to the floor, sometimes for a few minutes, at it’s worst 3 hours at a time. Sometimes multiple times a day. For everyone involved this is completely overwhelming and it drains you. These are the times where I look at her and I don’t know her. We feel that the meltdowns increase when there has been a deterioration in her condition, for example a dip in her eyesight or her routine is disturbed.
Alice still struggles with her words. She is finding it increasingly hard to find the words she wants to use and you can see in her face how frustrating she finds this and how angry she gets when you don’t understand what she wants. It’s no ones fault, we are all trying the best we can. She also has difficulty going to sleep. This can again take three hours a night to try to settle her, sometimes longer. Her range of reasoning for not sleeping can be anything from ‘I have forgotten how to sleep’, ‘You haven’t told me how to relax’, to ‘you haven’t been in to see me’ or ‘you haven’t given me a kiss’ even if we have done so multiple times, she genuinely can’t remember. One of the differences between Alice and Sam, is that Alice has already started having night terrors/hallucinations. I sat for hours one night trying to reassure her that her room wasn’t full of flies and that she was safe. Her little mermaid bed set can very quickly become spiders legs instead of Sebastian the crab. How do you reassure someone that they are safe, when what they are seeing is so real to them?
The thing that we find is one of the hardest aspects of this disease, for both Sam and Alice, is the need for routine. We absolutely dread things like the school holidays, which other families seem to enjoy. So when people on Facebook are sharing how they don’t want their children to go back to school or people ask us if we’ve had a nice holiday, don’t be surprised when our answer is no and that we couldn’t wait for school to start back. For Sam and Alice, the lack of routine is so hard. Everything is exacerbated. Their anxiety, the questioning, the meltdowns, the not sleeping is all a hundred times worse in the holidays. And what little energy we have, is soon depleted. This is so incredibly difficult to manage without the increasingly added stress of having to deal with a parent who doesn’t want to co-parent, fighting a broken social care system that doesn’t want to help because any respite, ‘should we need it’ should come from dad and the BDFA up in the air again just when we have built up good relationships with the family liaison service. Everything feels like an uphill battle and although we are surrounded by people, this life can be incredibly lonely and it’s so easy to withdraw into our own little unit.
You find there are a rare few people who will stand by you no matter what, and show up time and time again, check in with you daily to make sure you are ok, if there’s anything you need or anything they can do but you end up feeling guilty for relying on the same few. But once the initial shock of diagnosis and outpouring of support has worn off, most move on with their lives. It doesn’t happen suddenly. It happens over time. You are slowly forgotten, your children forgotten, because you are different now, anticipatory grief has changed you. Your children have changed, they aren’t the same children people once knew. Ultimately, we are now living a different life to the one we once knew and ultimately other people don’t have to live the life we do. And that hits hard. The situation we have to live day in day out is inconceivable and it really is true when they say you find out in times like these who truly cares and who doesn’t.
At the moment I am at a stage where I swing from feeling dissociated and numb to intensely angry and bitter that Batten disease is doing this to my children. To us as a family. No matter how hard you try to find the positives living with this diagnosis, some days there just are none. People tell us we are strong. We are no stronger than parents who have children with no extra needs, but we have no choice but to manage the awful hand the kids have been dealt. Batten disease doesn’t just affect the adults in Sam and Alices lives. People often overlook that there are two siblings who see and hear everything that their siblings are going through. Although they don’t fully understand the entire implications of Batten disease just yet, Scarlett and soon, George, will also be learning to navigate and live with the same anticipatory grief that we are. They will have to witness and endure experiences throughout their young lives that most adults wouldn’t experience in an entire lifetime. They will lose not one, but two of their siblings and I feel insurmountable guilt for being responsible for exposing them to that. The only grace I can take from it, is that I hope they will grow into selfless young adults, with compassion and empathy in abundance for others because they have lived with, cared for but most importantly loved a brother and a sister who are different.
If someone told me that I had the opportunity to go back and change things, would I?
Last weekend we had the opportunity to do something truly amazing. We were invited to attend the BDFA conference in Stratford upon Avon. It was the first event the charity had planned in over 5 years and I can honestly say it did not disappoint. 5 years ago Sam was just starting his journey to diagnosis and I’d never even heard of Batten Disease. How dramatically things would change and how I wish we could go back to that time where his only diagnosis was retinal dystrophy, and how at the time that was hard enough to swallow.
Over lockdown, we were all forced to stay at home, to protect our children, our families, colleagues. Hospital appointments were cancelled, pushed back or changed to zoom. Meetings with the family support service were moved purely to telephone, and ultimately disappeared altogether for a while. As a relatively small community anyway, I felt this had such a huge impact on Batten families. At times, this diagnosis is an incredibly lonely place to be, regardless of the amount of amazing support you have, no one truly understands unless they are living it. To go from the kids having structure and routine to their days, and the school day providing us with a bit of respite, to being together 24/7 was tough, I’m sure many families will agree.
Fast forward to now, where covid apparently no longer exists, we were finally given the opportunity to come together. To meet people who we’d only previously spoken to online. When Alice was diagnosed and we were still very much in lockdown, the amount of support from the online batten community was huge. One lady in particular I was so looking forward to meeting. I initially reached out to Ali looking for any glimmer of hope that Alice’s symptoms wouldn’t be another Batten diagnosis. In the end, unfortunately, that wasn’t the case. Ali didn’t make the devastation of a second diagnosis any easier, nor did she diminish the impact it would have on me as a mother to receive a second diagnosis in the space of 3 years but she made the heaviness of that diagnosis a little easier to carry, just by dropping messages, checking in to see if we were ok, if there was anything she could do. And don’t get me wrong lots of people did this, and I will forever be grateful, but Ali was different. Because she knew how receiving a Batten diagnosis feels and like us, after the initial period of grief has worn off for people, she was still interested in how we were doing, because we don’t just carry on with our lives like other people do, we live Batten every single day.
The conference was fantastic. It was so nice, if that’s the right word, to sit in a room full of people who just got it. Who we didn’t have to explain ourselves to, explain the kids condition and for me, for people to not look at you with overwhelming pity, because we were all in the same boat. Albeit, the waters we sail are often unpredictable and ever changing, but we are all in it together. We sat together in sessions where we discussed openly our children’s dementia, what that looked like to us, how we felt about it and how we dealt with the consequences of their condition. I’m not sure that comforting is the right word, but to not feel alone was so nice.
We listened to scientists deliver information on trials, maybe not the news we wanted to hear, but news nonetheless and other scientists explain exactly how the disease makes our children function or not function the way they do. Having the chance to meet other families, some quite local to us, and their children, to just have a chat and a catch up was priceless. With us being child free, it was a chance for me to unwind a little and be truly humbled by the amount of love and respect there actually was in any room, at any given time. There were children present with all different variations of CLN, and at all different stages of disease progression. Being able to observe other parents doing what they do best, caring for their children, was incredibly humbling. These children are so loved and bring so much to our lives that our hope for their future, is that if we cannot take away what is coming completely, we can try to make the inevitable as bearable for them as we can. We might not be able to do this with drugs or treatment at the moment but we can learn and understand more about their condition.
And their parents are incredibly resilient human beings. I refuse to use the term strong, because we are no stronger than anyone else, we have just been given a situation that we are forced to live with. We may never be comfortable or at peace living with Batten disease. We simply have no other choice. But the parents I saw, just did and got on with exactly what they needed to do for their children, almost on auto pilot. And the ups and downs the Batten journey takes you on, requires an awfully large amount of resilience. We may be knocked down time and time again, but we have no choice but to get back up again and again, because our children depend on us.
If I could be granted one thing for my children, and indeed all children affected with Batten disease, I would choose the chance at a life. It makes me incredibly sad and frustrated when I see people wasting the opportunity to live by consciously making poor life choices, if only my children had been given that opportunity.
As we headed home, it was good to reflect on just how many opportunities we had been given over the weekend. We are truly thankful for the support that the BDFA have given us, after family support kicked back in this year. Especially over the last few months, where Siân has to depict my awfully spelled text messages or counting the amount of missed calls I have from her, but also for the hard work still to come as the battle for a social worker continues.
I’ve contemplated writing this post for a long time. Simply knowing where to start or having the time to write seems to be a distant memory at the moment. Coupled with the fact people persistently stalk my writing to see if my blog posts contain things about them and threaten me with court. Like I have nothing better to do with my time.
It’s been 17 months since I received Alice’s Batten diagnosis. 17 long months of not really knowing what direction life is going in. Time passes by in a blur but my world feels as though it’s come to a grinding halt. Which of course it hasn’t. Alice is soon transitioning into the juniors at school and the juniors in her dance classes and I have sleepless nights wondering how she will cope.
Alice is not like Sam. She is full of sass and a desire to be just like an ordinary little girl. Like the other children in her class. But as she gets older, it’s becoming more apparent to her that she isn’t like everyone else. Her questioning about why her eyes don’t work, if she will be completely blind, why do my eyes work but hers don’t, become more frequent and more distressing as you see the realisation in her face that she does comprehend that she is indeed different.
Her Batten progression is also different. Her condition seems more advanced. Her eyesight has deteriorated so quickly and she really struggles finding words she wants to use in a sentence. I see her anger and frustration when she can’t find the right words, when people don’t understand her, when she can’t see what everyone else’s looking at. And it is so sad to watch.
This disease is already taking parts of her away daily and I miss my little Alice that I knew and loved. This Alice is very different. It doesn’t mean that I love her any less. But it means I have to love her in a different way some days. Those days when she is angry with me and doesn’t want me to hold her or touch her. Where she cries because her eyesight has dipped but she doesn’t understand why she is sad. Those days I have to love her differently and those days are difficult for me as her mum.
Sam also hit the end of an era. He is almost at the end of year 6 and will be saying goodbye to the school and the staff that have loved and looked after him. He starts at a specialist school in September, which is amazing and 100 percent the right setting for Sam, it isn’t what I ever envisaged for my child. I see his friends grow and move on into their next adventure in life, wondering what the future holds for each and every one of them, as they learn, fall in love, fall out of love, learn to drive, go to college, university. The world is at their feet. But I know what future awaits Sam and it breaks me. I have made no secret about the fact that I don’t feel like I fit in anywhere now with the other parents at school, I find it gut wrenching to watch Sam’s peers grow, learn and develop, when my child will do exactly the opposite. I so desperately want what they all have, which is a future for my child. A future in which I won’t have to watch him or his sister suffer.
Love alone is not enough to save my children from this life I have given them. Living with the knowledge that even my best will never be good enough, because I cannot do anything to stop what’s going to happen to them, I can’t do anything to slow it down and ultimately I cannot save them from the death sentence they’ve been given, that I will always be half responsible for.
Well, it’s been quite a while since I was on here. Its funny, a process that I once found so cathartic when I received Sams diagnosis, very quickly became something that I knew I couldn’t face. For weeks, months after that phone call from genetics that very quickly turned my world upside down for a second time, I couldn’t even look at my own daughter without drowning in my own tears. Every time I watched her struggle to find her words, or get frustrated because people couldn’t understand her, or bump into something, I could feel my heart squeeze in my chest, as I faced the ugly truth that this disease was going to take another one of my children. It was and still is incomprehensible. Alice’s diagnosis hit me like a steam train, taking absolutely no prisoners. For whatever reason, it felt so much worse than getting Sam’s diagnosis. That was traumatic enough. However, the batten bomb was a gradual realisation process with my first born, in that I didn’t quite fully understand the implications the disease would entail, and with each new piece of information came a period of grief and processing. It wasn’t any easier to deal with, but I had at least a little bit of time before moving onto the next god awful part that this disease would throw at us. With Alice, everything hit me at once. All the grief, the anger, the sadness, the guilt, bombarded me on a daily basis for weeks, and knowing where to start to process that has been really difficult. What Ive also found really difficult was being pregnant at the same time as trying to get to grips with another Batten disease diagnosis. After the initial shock of discovering I was pregnant, I felt so lucky to be given the chance to be a mum again, and to be doing it with someone who loved and respected me and wanted to be involved in every part of the process. But alongside the joy and elation I felt, came the guilt for feeling that way. Guilt for my other two children that I wouldn’t see grow up and guilt for my new baby knowing what I was bringing him into. Would people see him and think I only had another baby to replace one of the ones I was losing?Nothing could be further from the truth. But it’s been so difficult fighting with the emotions of being able to watch one little life grow and develop, and two others start to decline. Life is so very complicated sometimes. But George was exactly what we needed, even if we didn’t know it at the time.
With each year that passes, Sam hits milestones exactly as Dr Parker said he would. His dementia becomes more apparent and the behavioural issues that come with that are increasingly more difficult to manage. His eyesight has all but gone now, yet he still manages to do things many sighted people would struggle with. The biggest learning curve for me was the start of seizures. The thought of my child having a seizure was so difficult to imagine until you are faced with it. The first seizure Sam had when he was at home with us, I was heavily pregnant, and I don’t think I have cleared a set of stairs faster in my life. Because until it happens, you don’t really know what to expect or how these seizures will present. When I reached the bottom of the stairs and got to sam he was blue and foaming at the mouth, and in that moment my heart felt like it was pounding out of my chest. I didn’t know what to do and the panic set in, until I realised I was being ridiculous, I had been a student nurse, of course I knew what to do. But dealing with it in a medical setting and watching your own child become unresponsive is a different thing. During the summer Sam would get to the point where he was having at least 1 seizure a week. Your natural instinct as a parent is to do whatever you can to help your child. With seizures you can only make sure they are safe, and that’s about it until their brain has finished doing what it’s doing. Filming Sams seizures has been another awful thing to do. And although it’s for the benefit of the health professionals, it makes you feel even more powerless as a parent. But it’s another thing as a Batten family we deal with, because we have no other choice.
All in all, Sam and Alice are in good health and I know I am incredibly thankful for that. But my heart will never stop breaking for what my children are going through and what they will have to go through in the near future. Every day this awful disease takes something away from them. Every day we lose another little bit of them we won’t ever get back. And one day, it will be the last time I hear them speak, listen to them laugh, see them walk, feed themselves.
And how could anyone ever comprehend that this is our new normal??
I was in that nightmare again. The one where I’m crossing the road and fall just before I reach the other side. Although this time, I don’t even try to crawl out of the way, the car continues to travel towards me and I feel it connect with my body. The breath I was holding leaves my lungs and I can’t breathe. The world continues to move but for me it doesn’t.
The week before half term Alice’s teacher, who is also my friend out of school, asked if he could have a word with me. I kind of felt I already knew what was coming before the words were out of his mouth. At home, we’d noticed that Alice had become increasingly clumsy, her concentration wasn’t as good, she struggled sometimes to put the words together that she wanted, she sat as close to the tv as she could and she’d started to hold her book up to her face. When Jamie told me that she was having trouble seeing things in school, corroborated with the other members of staff who worked with her, my heart sank. I cried for the rest of the school run and all the way home. As soon as I got back to the house I made an appointment at the opticians and emailed the genetics team. Once we had received the diagnosis of Batten disease for Sam, and the decision had been made not to test the girls at that point in time because they were asymptomatic, genetics had said that if either of them started to show any signs of visual disturbances, they would be fast tracked and tested if that’s what we wanted.
Fast forward a week, genetics had been in touch to say they would schedule us an appointment, and we went to the opticians for them to test Alices vision. I sat in the room with my mask on sobbing into the darkness as I watched what was like a carbon copy of my beautiful boy. Alice struggled to pick out 3D shapes and her eyesight wasn’t as strong as it should be, so as a precaution due to family history, the optician was going to refer her up to the hospital. Due to the nature of Batten disease and not a lot of health professionals being familiar with it, I asked if he could refer Alice to Miss Tandon, as she was familiar with Sam and his needs. The optician was the same man who has tested and referred Sam. He hadn’t heard of Batten disease either, but once he’d googled it, he’d said he was so sorry and that he never imagined that’s what the results would have been when he referred Sam.
You’d think you’d get used to people apologising to you, but you don’t. I always find it a really funny thing, like they are apologising because they feel like they’ve done something wrong in not knowing what to say to a parent whose world feels like it’s ended. In all honesty, there is nothing anyone can say. I have no words some days.
Our genetic appointment came round, and again I sat on my own, though through covid circumstances rather than punishment this time, as we discussed the implications of what would happen should Alice’s results come back as Batten disease. Dr Parker very eloquently told me once the results were here, we couldn’t take them back, there was no magic wand and we could delay the testing for a year or two. In my heart I already knew what the results would come back as and I really couldn’t see the point in delaying the inevitable. The red flags were already flying, and all I would do over the course of the next two years would be to watch and analyse every little behaviour I saw in my youngest child. To me that is not an existence, life is hard enough as it is without the extra worry. As I mentioned in previous blogs, Sam, myself and his year two teacher struggled so much over the course of 6 months with him, that he absolutely hated going to school and was so unhappy. Because we didn’t know what was wrong with him, we didn’t know how best to support him and how long he’d struggled in his previous class still breaks my heart now. But as soon as the visual impairment team were involved, he was like a completely different child. If, and at this point it was more of a when, Alices results came back as having Batten disease, at least the support could be put into place for her straight away and she would continue to love school as much as she does. No parent wants their child to struggle. Fighting a terminal disease day in day out, is struggle enough for their tiny bodies.
So with the blood test completed, came the agonising wait to find out the results. 6 long weeks went by when the phone-call finally came in. 2 minutes……that was all it took for my world to feel as though it was crumbling down around me. A 2 minute phone-call that confirmed what my heart already knew. My beautiful, intelligent, sassy, baby girl had been given the same death sentence as her brother. By the time David came back upstairs I genuinely couldn’t breathe anymore, I felt as though my chest was being crushed. What had my children done to deserve this?What had I done to deserve so much pain?The pain and reality now of not only having to say goodbye to one of my children, but two of them. There is no other way to describe how I felt other than the deepest despair you can imagine. There are no positives you can take from this situation, no bright side because the ugly truth of this disease is that inevitably there is loss. And not just the end result of your child dying but so much loss along the way. Everything hurt. My head, my heart, my entire body ached. It ached again for everything that another one of my children was losing. She would never grow to be a ballerina on pointe like the big girls she admires so much, she won’t ever learn to drive, fall in love, get married or have a family of her own. So many things, another future I had dreamed of for my child, had been stripped from me and her in that 2 minute phone-call. Just like Sam, Alice’s future now looked very different.
The past few weeks have passed in a numb blur. This diagnosis hasn’t been like when Sam was diagnosed. Back then I didn’t really know what Batten disease was, so it was a slower realisation process. With Alice, I know exactly what this diagnosis now entails and everything has hit me at once, like a tidal wave that I haven’t been able to surface from yet. Coupled with being pregnant, I have found it incredibly difficult to get myself out of bed some days.
This week we went to see Miss Tandon. The wonderful, beautiful human that she is. The NHS need more consultants like her!!Myself and Alice spent 4 hours in the children’s hospital, having her eyes dilated and photographed and then examined, to find out that her eyesight is far worse than what Sams was when he was her age. Alice has whats known as ‘bullseye’ vision left and so I sat and cried with Miss Tandon some more. This was unadulterated, ugly crying, and I was thankful I was wearing a mask and that I wasn’t alone in my tears. Alice in the mean time was living her best life with the nurse, getting shiny stickers, colouring packs and clipboards. Miss Tandon asked about the support I had in place, if I was ok financially but most importantly she asked me what she could do to help. It’s funny how a health professional who doesn’t really know us personally, can ask more and do more for us than someone who calls themselves a parent.
Once again, I have been left to endure the brunt of another diagnosis on my own, broken and hurting, with ‘thanks for letting me know’ being the only words text and nothing since. I am so thankful that I have had David here to help pick up my pieces when I couldn’t hold them together anymore, and so thankful for the help he has given me in every other way I’ve needed him to. It’s taken a while to adjust to having a supportive partner who genuinely wants the best for me and the kids.
I have wanted to start writing this post for a little while now but I wanted to be able to do it the justice it deserves. I just can’t believe I’m here, having to write this again.
Batten disease is something that as a family we have to live with. It’s not something I will ever pretend to be comfortable living with or that I will ever fully come to terms with. It’s a diagnosis I have now been given twice and we have to get on with it. Because no matter how hard we pray, or wish, nothing will ever make this better, take away the pain we feel or stop the suffering we will have to go through. We are now going through the process of grieving for another child that is still alive and it’s such a hard concept to grasp.
I never thought it was possible for a heart to break twice, but I was so wrong.
Im honestly not sure where to start with this blog post. It feels like I have been away from here for such a long time and its not because I haven’t wanted to keep you all updated but just because with everything that has been going on in life in general, I seem to have lost all motivation. The world came to an absolute standstill and lockdown with three children was….interesting. No really, after the first 6 weeks of them constantly fighting and arguing between themselves, things settled down and it wasn’t horrendous. Not that I want to repeat it in anyway shape or form, which is what I fear will happen.
So I suppose I should start with an update on Sam as he is my main focus of my blog. Life for Sam in lockdown was so very difficult for him to understand. Part of his condition results in extreme anxiety in unfamiliar situations, he loves structure and routine and school is a huge part of this. He had settled really well into year 5 and was very content to be there (after his initial grumps of not wanting to get up in the morning). Then all of a sudden, that was taken away. Like every other child throughout the UK, we woke up on Monday 23rd March and there was no school, no school run, no teachers, no friends. We couldn’t see our family or friends, or leave the house to go anywhere. This was a major change for everyone, but especially for Sam and as a result he really struggled initially. And now on the flip side, we are back in school and again, after a 6 month period of not being there he is struggling to settle back in to year 5. Back to structure and back to routine. He has always been a very anxious child, and 6 months at home with me hasn’t helped that. So I am back to trying to make sure he’s happy and content and not crying at the start of his school day, which is proving difficult at the moment. The saving grace for me is that I know he’s relatively settled when he’s in and occupied. Health wise, we have noticed some quite big changes in his speech. He stutters a lot more and he sometimes struggles to find the words he is looking for. Which is hard to watch and listen to. I so want to help him out but try to encourage him to think about what he’s trying to say. Sometimes by the time he has finished saying the word, he’s forgotten what he’s saying in the first place. We’ve also noticed changes in his balance and sometimes he misjudges things. He’s had a few accidents during lockdown where he’s run into a door frame or the wheely bin, when he’s only just passed these things minutes or seconds before. His behaviour on the whole isn’t too bad at the moment. As part of his condition, he does and says things that sometimes are inappropriate but as the dementia continues to damage parts of his brain, he doesn’t recognise why these things are inappropriate. I notice the gap becoming wider between him and his peers and that hurts my heart, because no one wants their child to be set apart from their friends, but that is exactly what Sam is. Sams class are so good with him, as the parents in the class are with me, but they are all growing up, his friends are moving on to new friendship circles because he isn’t the same boy he used to be, he can’t do everything he used to be able to do and Sam is being left behind. We will soon be saying goodbye to them and Sam will be off on another adventure, not joining his friends and that is one of the saddest things as a parent.
So onto the second biggest thing that I’ve spoken about in my blogs: my impending court case! Well, it has now finally taken place and I can put a full stop on the final page of that chapter and move on. I cannot begin to convey how much going to court took out of me, a week on I am still emotionally exhausted. One of my best friends works in court as a legal advisor, and I take my hat off to her, I can’t imagine how drained she must feel at the end of a week. As many of you know my court case should have taken place in May, but obviously with Covid running riot, it was postponed until September. I can honestly say, other than the day I received Sam’s diagnosis, it was hands down the most horrendous experience of my life, and I never want to repeat it. For a while now, I suspected my ex husband to be colluding with my partner’s ex wife, for the pure and simple fact that they were out to get revenge, to stop me getting what I didn’t deserve, there’s no point in even trying to sugar coat it. My solicitor was well aware of the entire situation and agreed we should be prepared for any eventuality where the two of them were concerned. Whilst I was on holiday I received correspondence from said solicitor which contained confirmation of what I had suspected. There, in all its ugly glory, was my ex husbands statement, accompanied by a statement from my partner’s ex wife. As I sat on my sun bed I was absoloutly seething with anger. The battle I was fighting, had nothing to do with anybody else, other than my ex husband and I. But oh no, she had decided, with my ex husbands encouragement of course, to get right into the action to stir up the shit as much as possible and made herself available to appear as a witness in our court case. Nothing quite prepared me, David, or my solicitor for that. As we arrived home and the court case loomed, I couldn’t sleep and I felt sick all the time. I had no idea what to expect and my anxiety was on another level completely. The day soon rolled round and I don’t think I spoke barely 10 words to anyone at all that morning. I felt horrendous. My palms and feet were sweaty, my stomach was churning and I felt like I was walking the green mile. I hadn’t even met the woman who was my barrister. I arrived in court early, and sat and watched for the woman I had seen photographs of and was relieved when she turned up 10 minutes later. She instantly put me at ease and was a really lovely lady. Before I knew it the usher was coming to check our names and that’s when my barrister asked if my ex husbands representation was present. She replied, no but the witness is here. At that point my heart sank through my arsehole, at the same time as my anger flared up again. I knew what that meant. She was actually going to go through with whatever it was she wanted to achieve. We entered court and the witness was up first. I then sat and listened to this person tell the court things that would make her feel better about herself. About the situation she found herself in. Because it only takes one person to cause a relationship to fail right? I will not go into a vast degree of detail. I understand anger and the need and want for her to get even. That is her prerogative. What I will never understand and what she can never, ever go back from was the fact that she chose to take her revenge in a situation that hugely impacted the future of my 3 children. A terminally ill child among them, she decided to pour her hatred and bitterness for me, into a court case which would determine their future. As a mother, why would you do that? And if it wasn’t for that reason, why else do it? Her and my ex were not friends, they had no relationship at all until their respective marriage breakdowns. As a full time mother to my three children, who are in my care full time, who’s every need I have met since they were born, mostly unsupported, I shouldn’t get anymore money than my ex husband, whom she knows very little about, because her ex husband fell out of love with her?And we might decide to live together in the future? We might dare to grasp any chance of happiness we can? If revenge was what she was after, it wasn’t what she achieved. I truly hope she found peace in her actions, because even though her intentions were to hurt me and support my Ex husbands case, the statement and appearance had no impact or relevance.
After the witness, my ex husband was cross examined and then we broke for lunch. Not that I could even stomach the thought of anything to eat, I was yet to be questioned. When we reconvened, it was my turn. My solicitor had given me warning about the opposing barrister, he told me to be prepared for them to be an arse because that was their job. What I wasn’t quite prepared for, was or how unbelievably snotty and incredibly rude she was. For an hour I was questioned, and much to my dismay and disbelief, the main topic of questioning was the fundraising we’ve done for Sam. Here, I was accused of taking money that was meant for Sam and using it to pay for my holiday to Kos, accused of using it to my own benefit, asked if I thought it was appropriate for other people to accompany me and the kids on the trips we had booked using the money, asked where the rest of the money had gone and it was suggested that the cash was an untapped fund I was saving for something other than for Sam. I was genuinely mortified. This line of questioning was put forward by my ex husband and it continued for what felt like hours. After 14 years together it was so apparent in that court room how very little he thinks of me. And honestly, the more I have reflected upon it since leaving court that day, it has made me so sad. If someone I had once loved, who I thought loved me, believed I was capable of doing what he was accusing me of, who else was thinking it? When we first separated, I wanted him to get involved with the fundraising, he would have had access to the money raised too and could have used it to benefit his relationship with Sam, but he refused and has never wanted anything to do with it. The one thing I know is that it has 100% put me off doing any more fundraising. So I suppose in the end, he achieved what he wanted. Stop writing the blog, stop fundraising, stop raising awareness. The whole experience was so degrading. At the end of the court case, the judge was more than satisfied with the answers I had provided but the damage had already been done by then.
The judge ruled in my favour, and so finally we see an end to a journey that has dragged on far longer than anyone could have ever possibly imagined it would. I am still physically and emotionally drained, all I want to do is sleep and I can’t see that alleviating anytime soon. All of my time and energy has been put into fighting what I shouldn’t have had to really fight. Im not sad, or regretful for any of the decisions I have made, nor have I ever felt like grieving for the relationship I let go of. We are presented with opportunities in life, and no matter what, there is always a choice. I chose to follow my heart and be happy. I have had to sit in a court room and try to prove myself to people who don’t know anything about me, or Sam for that matter. As I’ve said before, unless you are living with a Batten diagnosis, you couldn’t possibly understand the first thing about it. I have ultimately had to fight for what my children need and for them I would do anything. Absolutely anything. Because that is what a good parent does.
To every story. A lot of people currently think they know how my story goes, but they honestly don’t know half of it. I don’t really like to do things by halves, after Sam’s diagnosis and leaving my marriage and relationship of 14 years, it was only the beginning of my world being turned upside down.
I think when you first come out of a marriage or a relationship people who know you are generally sympathetic, supportive and understanding. But when you have been single for a while, it’s only natural for people’s interests to be piqued as to whether or not you are on the dating scene again. For some reason my love life became the hot topic of conversation and people were more interested in it than I was. Some of them still undoubtedly are, go figure. Ive been accused of all sorts, from having a relationship with my daughters school teacher to buying a house with him and his grown up children (which would have been impossible given his age!) I believe life puts things in your path you need. Often these are things that you never knew you needed or wanted, or things you never in your wildest dreams anticipated. Sometimes, something so monumental happens and your soul feels like its where its always belonged. And that’s exactly what happened when I met David.
When I first moved here 6 years ago, my life had been turbulent to say the least. I tried my hardest to be the happy person on the outside even though my soul felt like it was being ripped apart under the surface. I just didn’t know who I was. I felt like I was drowning. Just keeping my head above the water, with the smallest thing waiting to pull me under with no hope of return. Yes, maybe I should have been happy with my lot. I had a lovely house, I was a mum, it was all I had ever wanted to be, and I loved it, but I had lost my identity. I had absolutely no idea who I was, what I wanted or what my life goals were anymore. I was just the mum who looked after her kids and apparently did an absolutely appalling job at being cinderella and doing the chores. I was also a wife. But I’d also lost myself in that role too. For one reason or another, I felt undervalued and taken for granted. I loved and looked after my children, attending to their every need, but what about everything else?My life, my needs, wants. I wasn’t ungrateful but I deserved so much more.
I think it’s entirely possible to outgrow a person or a situation. When you have been with someone for so long, it can sometimes be habit or a sense of duty that keeps you together, rather than love. Now, Im not naive in the slightest. I know love changes all the time. It changes as you age, it changes the longer you have been together, it grows as you do. It’s not always raw passion, lust and want, its appreciation, gratitude, companionship, understanding, friendship. Maybe my expectations were always too high of other people, but I just didn’t feel any of this. My understanding was that you were supposed to grow in a relationship, not only together but as individuals too. However, I felt I was consistently being suffocated by someone who didn’t really want me to be me. And I grew increasingly sad. My heart just wasn’t invested anymore and I’d started to detach myself emotionally and physically from the life I thought I’d always know.
A hug. That was all it took. A simple gesture from someone who saw and knew how much I was hurting, without having to say a word to him. And it hit me like a tidal wave. My soul that had always felt like a raging thunderstorm, all of a sudden felt calm. A connection like I had never felt before and I knew where I had to be. My soul was at home.
Sounds simple right? Wrong, so very wrong. So many things had to change for us to be together. Life is so incredibly difficult, adulting is damn hard and sometimes things don’t always work out as you intended. I genuinely believe you are destined to walk a path that makes you question every decision you have ever made. I’m not the kind of person to chase a relationship or love, especially when everything about it really shouldn’t work. What I am willing to do is to walk into it freely when I feel it’s absolutely the right thing to do, even if it has tested my sanity and resolve on more than one occasion.
I suppose the purpose of my writing this blog post is that a lot of people think they know all the ins and outs of mine and Davids relationship from hearing just one biased side of a very complex story. But really unless you’ve been living it as we have, you have absolutely no idea. People have no right to form an opinion based on the view of one person without being willing to at least hear both sides of the story. You never know what’s around the corner in your own life, so don’t ever judge someone based on the chapter of their life you walked in on, you don’t know what battles they are facing sometimes to just survive.
Life is so short, and what we have done is grasped the chance to be happy because you only get one chance to live the life you have been given. If you can be anything in life, chose to be kind. You may not always understand the decisions and choices we make but we’re not asking you to. This is my story, our story, we are the authors and we will chose how it begins and ends. The only thing you have to decide is if you want to read along with us or close the book…….
Justabattensmum 