6 months on……

It’s been 6 months since Sams diagnosis. Honestly, Im not sure what I can write about these last 6 months that can convey the absolute devastation I still feel. Not a lot has changed, and yet everything has. My life as I thought I knew has well and truly gone. The future that I had planned for me and the kids has now completely changed. All the things I thought were just quirks of Sam, turns out they are part of his Battens disease and it tears my heart apart knowing that this is now our life and how it’s going to progress. Some days I really don’t know where I am and I feel like an emotional yo-yo.

And no matter how many people tell you, they know how you feel, they understand, they know what your going through because of x, y and z, unless they are living with it themselves they really have no clue. Living each day watching a small piece of your child fade away, when you have no control, no power to stop it, it soul destroying.

When words have been spoken, they cannot be taken back. So many appointments have passed, so many dialects, reports written, I wish I’d not had to hear, listen to or read. They replay over and over in my head, night after night so that sleep still evades me and I’m left alone facing the endless possibilities of how Sam and our life will change. So many truths I wish I didn’t have to face. And yet I have to. I have to adult and it sucks major ass because I don’t want to. I just want my Sam back. It really shouldn’t be too much to ask.

The changes that I have noticed in Sam have been marked. His behaviour is changing, his personality is changing. Somedays there are periods when I can’t reach him. I cant get through to him when I need him the most. I feel my boy slipping away from me and I try with all my might to hold on to him. But sometimes, he’s just trapped in his own little world and it destroys me.

Some days are better than others and I celebrate the ones where Sams achievements shine through. As his short term memory is affected more and more, things like the Braille he was learning becomes more difficult for him, although he is still progressing. The same with touch typing.

On top of Sams diagnosis, I am still in the midst of what is turning out to be a messy split and divorce. Friends of 20 years have chosen not to be part of my life anymore, which saddens me, but I suppose it’s the nature of divorces. What else can you do when people won’t listen to what you are trying to tell them?Having lost our house sale because an agreement couldn’t be made on how the money should be separated, I’m now still trapped in a house that feels like a prison, that I will spend as much time away from as possible. I hate being here for so many reasons.

I shouldn’t have to fight for what the children need but that is apparently what I’m going to have to do and off to court I will be going.

Fighting for what I want and what I love however, seems is what I was put here to do.

The boy…..

On a more personal level, I need to do an update on Sam. Every day I see subtle changes in him that to the outside world may seem like nothing, you probably wouldn’t even notice, but to me they are everything.
These changes are not Sam. They are his condition. However hard I try to push these to one side, it’s difficult to not acknowledge them.

Sams eyesight has deteriorated to a point where his glasses now make no difference to him. He is however still loving Lisa’s visits into school to teach him how to use his cane. I love my weekly updates that I get sent from her to tell me what he’s been up to. In these I see my cheeky little boy doing what he loves best; being outside and exploring, like most little people do.

His eyesight is not really the thing that gets to me so much now. The way he just adjusts to the changes and learns so quickly comforts me and I know in that respect he will be ok.
What I find harder to swallow are the changes in his temperament, his personality almost. He gets distracted easily, his concentration slips, he has distant episodes, he forgets that he’s asked questions so repeats himself, he gets frustrated and angry quickly, sometimes hitting out at his younger siblings and can quite frankly be really rude at times. And these are the changes that I see every moment of everyday I spend with him.
Somedays its like I’m not even looking at my little boy, its like looking at a child I don’t know, and its difficult to comprehend that this is just the beginning of our journey and there are many more changes yet to come. And it scares me.
I follow and am friends with some more Batten’s mums on social media and I see and read their struggles daily and its almost like a glimpse into the future of what’s to come for us.
I hate what this condition is going to take away from my child, and often wonder when I sit and read these posts, where am I going to find the strength from to survive it.
Im also scared for Sam. Because he won’t understand what’s happening to him and that must be a terrifying thing. Scared because I can’t take it away or make it better, does that mean I’ll feel like I’m forever failing him as his mum because I can’t fix it for him?

Some weeks I feel like life just ambles along and that Batten’s is just a memory and then others it becomes the crushing weight on my shoulders that is forever trying to suffocate me under its pressure. At the moment life is complicated and I’m fighting battles I never thought I would be. A few weeks ago, I was told that I wasn’t equipped enough to deal with my own children, because I had no experience of dealing with disability. Now this part may be true, I have no experience of looking after a child with a disability but why does this make me ‘ill equipped’?
Batten disease was not a choice, it has no destined path to follow, each child and each journey is different, so I will learn as we go along. Like I’m sure many other parents have done before me.
This wasn’t a choice and that does not make me inadequate.

I am just a mum who is doing the best by her children, and I will never let anyone see me ‘fail’. I owe my babies that much at least.


Race Night…..

Firstly I just want to apologise for my, what seems like forever, absence. I always feel it is counter productive to update when I am not feeling particularly positive, I never quite convey just how well Sam is doing in those kind of posts.
The last two weeks have been incredibly hard with one thing and another and it just hasn’t felt the right time.

So last Friday night was race night. This was something that I had been looking forward to since it was in the early days of planning. After a lot of hard work on the lovely Lyndsey’s part and some of my own, we managed to pull off an amazing night in aid of Sam’s fund.
I originally had no idea about a race night being planned until I was added into a WhatsApp group named after the man cub. This was initially to plan a surprise birthday party for him but it was where race night was first mentioned.

Over the course of planning, we were gifted so many wonderful things, from tickets being printed and the horse DJ (not sure what else to call him lol) being paid for, to donations for the raffle. It never ceases to amaze me the kindness of people. Some of which don’t even personally know me or Sam.

So as the night rolled in and the room began to fill I can honestly say I have never felt more love. I know that sounds so cliche, but every single person in that room wanted to be there, they wanted to support me and they wanted to help make life a little more bearable for us a family. The atmosphere was wonderful and I couldn’t be more thankful to Lyndsey for organising it.
My only regret is that I wish I had been more sober to do my speech. I had it all so nicely planned out in my head and everything, and when I got up there, I looked at my best friend sat crying on the floor and everything I had wanted to say had gone and by the end of the night I was a complete wreck.

So let me just take this opportunity once again to thank each and every single person who made the effort to share the night with us. Without your love and support it wouldn’t have been the success that it was and I could not be more thankful. Your kind donations, raffle ticket purchasing and horse betting raised a staggering amount of money that will help make lasting memories for us with Sam.
I also want to take this opportunity to thank the small group of mums, who I’m also incredibly lucky to call friends, from Sams class, who as soon as they heard about Sam’s diagnosis, jumped into action and started planning anything and everything they could to help. From birthday parties to race nights. Without you ladies, none of this would have been possible and I thank you for holding my hand when I’ve turned up to school not quite at my best.

Im so excited for our next events including the tough mudder, the three peaks, colour dash and something a little bit special being organised by some of my other gorgeous people. Keep an eye out!


Miss Tandon…..

Today was Sam’s consultant appointment up at the Hallamshire hospital with the wonderful human that is Miss Tandon.
This lovely lady has been part of our journey from the day we transferred from Rotherham ophthalmology department to Sheffield. If anyone has had the pleasure of meeting this lady you will know what a beautiful, kind heart she has.
We attend ophthalmology check ups every 6 months to see how Sam’s eyes have changed in that time. So we started with the standard eye examination, he did really well and managed to pick out some of the letters today, which he can’t usually do.
His results were recorded and then his notes were passed on to the consultant.

It was a long wait as usual, Sam was his usual impatient self and wanted to either hide or go home. We could do neither, so waiting it was.
We were finally called in and Miss Tandon spoke to us both in turn. She asked Sam if it was ok that she had a look in his eyes. He of course said yes and told her he was going to play on his xbox for the entirety of the easter holidays.
After a thorough examination, she told him he was all done and he could jump down from the chair.
She then turned to me and asked how we were getting on with the genetics testing, as it suddenly started to dawn on me that she didn’t know about Sam’s diagnosis at all. With an awful feeling in the pit of my stomach I asked her if shed had the report back and she said no.
Feeling every bit like I was back in that room with Dr Parker, I told her that the results had come back and that he had Juvenile battens. Her face dropped and at this point she asked if Sams dad was in the waiting room so that she could talk to me alone. His dad chose not to attend the appointment but my mum came to the clinic with me and waited outside, so I opened the door and passed Sam out to her.

What do you do when you are faced with a consultant who apologises so profusely to you, asks if she can give you a hug and then starts to cry herself?
My chest started to ache and my lungs started to burn as I tried so hard not to cry. She told me she was so sorry, over and over, and asked if there was absolutely anything that she could do. And my response was, as it is to everyone, what is there that we can do?

Theres something soul destroying about watching a health professional crack and stumble in front of you. These are the hope givers, the people who are supposed to give us light in the darkness. But when it comes to Battens disease, it’s hard to do that. Even when you are a doctor, you are still only human. In that moment, everything that had been feeling so positive, again felt so hopeless.
No matter where we go, no matter what hospital we go to, the Hallamshire, the Ryegate centre, Great Ormond street, the children’s hospital, it changes nothing. The diagnosis and the prognosis are still what they are. And I have never felt that more than I did stood in that room, looking at this beautiful woman crying for a child that wasn’t her own. She was crying for my child. And god did that hurt.

She told me that Sam’s care would now be transferred to Sheffield Children’s hospital, rather than the Hallamshire. I said I was more than happy with that, as my head started to spin and my ears buzzed and I felt like I was going to pass out. I felt the enormity of the emotion in the consultation room as if it were a chain around my legs weighing me down and I couldn’t wait to get out.

This journey was never going to be easy. There are good days and bad days, unfortunately the bad days seem to be outnumbering the good at the moment.
There is no suffering greater than that, that drives people to the edge. It’s a defining moment where mental pain exceeds the human capacity to bear it. It represents the abandonment of hope. For what good is hope, when you see no light at the end of the tunnel?

There is no way out of this diagnosis, no changing it, no making it better. I try to find solace, peace, comfort in speaking to people like they often ask me to, but sometimes when that’s met with silence, how can you find the strength to remain positive and keep your promises when the people you love can’t make you feel better?





When there is no other way…..

Life is a funny thing. What does it even mean to be alive? For your heart to beat, allowing you to breathe, to speak, to think, to function day after day. What if we lived our lives doing just this? What would our existence be like? Would we really be living or would we purely be existing in a shell of a body we really knew nothing about?
Surely we were put here to do more than exist?

Over the last couple of weeks, I feel like I have lost myself. I have seen a massive dip in my mental health and I really don’t have the energy to want to do anything about it. I am so tired. The kind of tired that hurts your soul, that no amount of sleep will ever fix.

Physically, you see me, I look for all intense and purposes fit and well. Like I’m coping, like I’m taking everything in my stride, when really that couldn’t be further from the truth.
I feel like the weight of the world sits on my shoulders, my body struggling under its weight, my heart heavy with the emotions it feels, my mind burdened with a hundred different thoughts all fighting to be heard at once, screaming over one another. I’m not sure how much more I can listen to the noise, it deafens me. I don’t know where to start, I don’t know what to process first. I don’t need anyone to tell me what to do, I don’t want to hear what I should be doing, I don’t want you to tell me that you understand because, you don’t. I want you to see me. I want you to understand that I feel like I am suffocating, like I’m falling and no matter how much advice you give me, it won’t help. I will never be enough.

I’m in the tunnel, but I cannot see the light. I want out, but I can’t see how to get there. I don’t want advice, I need you to hold me.
I feel overwhelmed and overloaded. Everything is happening at once and I am finding life hard. Yes, this might be self inflicted and people may say I brought it on myself due to the choices I made, but I was never really living. Am I living now?

No, I’m not living, I’m just surviving. Wouldn’t it just be easier if I weren’t here? It would solve so many problems, for so many people. I couldn’t hurt anyone then, I would no longer feel the despair that surges through my body, the want and need that crushes my lungs so that I cannot breathe. Just the quiet that I crave.

Not for the first time, during the last few weeks has taking my own life been a consideration. Some days I wonder if I am really meant to survive this life at all, given the hand I’ve been dealt. I’m not strong enough.
I am so tired. Exhausted by life, and what people want me to be. Driven to the point of numbness, and finding solace again in self harm, is this the kind of existence I want?Of course it’s not the existence I want, but it’s the only way I know how to survive.

When you feel so desperately sad and alone, it feels like life is drowning you and you are constantly fighting to keep your head above the water. When really all you want is for the waves to caress you so you don’t feel anything, so nothing hurts anymore. But you know in your heart, that however much you may want it, it won’t solve anything.

It’s so important that we keep talking about our mental health. Suicidal ideation and self harm happen, we need to process it, talk about it and deal with it. But people need to understand that it’s ok not to be ok. If we don’t ever talk about it, how can we ever hope to make a difference.

When you feel there is no other way out, that’s when the stars that be truly shine their brightest. There are people who see you and want to hear you. It just takes little longer to see them when you are engulfed in the darkness.

Look for them. They are there. There is always another way.


















Batten’s stop me now……


Sung obviously to Queens ‘Don’t stop me now’……..

It’s been a while since I did an update on my little man cub. 4 months on from the day that I received the diagnosis that Sam had Batten disease, things are still very much up and down, for me at least.

Sam however, is doing well. The team supporting him in school are incredible. I cannot sing their praises enough. Weekly I get emails to tell me how he’s doing and how hard he is trying, nothing phases the boy. His touch typing is coming on well, along with his braille work.
After speaking to the VI team last, the BDFA have been in to school to guide and support the staff and people working with Sam. The fact that these people have sought out this help is so encouraging as his mother and to know that they want to do everything they can to aid his journey and his learning to the best of what they can offer. As a school and as a team, I honestly could not ask anymore of them. Wonderful people.
So at the moment, Sam is still doing well in the classroom, sometimes he struggles with his concentration and he gets tired easily, but the VI team are very good at finding alternative ways for him to learn and do the work that is required of him.

One thing the BDFA suggested that the team could do to Sams short term memory and language, would be to keep a home/school diary. This is to keep a track of what’s been happening during the day when in school and Sam can then tell us all about it when he gets home. I love this idea and its been in place for the last week!! The book is to be kept positive and Sam is always super excited about it. We have a system where if there is anything that needs to be passed on that can’t be regarded as positive, its popped in on a post it note which can then be later removed. This works both ways. So if for instance Sam has had a bad night or a bad morning I can pop it in the book, the staff are then aware what kind of mood he’s in but it can then be removed.

Health wise, he doing pretty well at the moment. His mobility is still excellent considering he has a severe visual impairment, there’s nothing wrong with his mouth, it never stops moving and he is currently like an elephant that never forgets. He loves nothing more than to be outside, on his scooter, rolling around on the grass or hunting for dinosaurs. He really does amaze me, I wish I had his resilience .

Hospital wise, we have an ophthalmology appointment coming up in April, which I’m dreading, as he is very much aware of what is coming when eye drops are mentioned now and the last time we went, I had to pin him to his seat, which devastated me.
The next appointment after that is June down at Great Ormond street to meet the Batten specialists. So everything is ticking along with a full team of people on hand and ready should I need them.

So that beautiful people is currently where we are since our last meeting with Batten’s.
Until our next date xx





Hello my old friend……


I have always struggled with bouts of anxiety. As a younger girl, I didn’t understand what it was or why it made me feel the way I did.
Only, as I got older it became more prevalent, harder to ignore, harder to control, did I realise what I was actually suffering from.

When I went to see my GP she diagnosed me with generalised anxiety disorder. This
came at a time when Sam was under going his first lot of testing, so I had a lot to be anxious about I suppose. But it became a regular thing that in the morning when I would wake up after a restless night of sleep, the weight in my chest was already there, sitting, waiting to start the day with me. The churning stomach, the butterflies, the nausea. I was on edge all the time. I couldn’t relax, my heart rate was sitting at double what it should be, all day, everyday, my palms and feet were clammy. I found it hard to concentrate, to focus. I would over analyse absolutely everything. Conversations from that day, 3 weeks ago, 3 years ago, thinking about what I could have said differently or what I could have changed. Even though none of it made a difference. The weight in my chest would heighten was the day went on, like a persistent cloud of fog that refused to clear, making my whole body ache. For months this was a daily occurrence and as my children do not sleep and I was the one doing the night shift with them, my body couldn’t take anymore.

The GP started me on medication. It was great to have the edge taken off the anxiety, but the thing with the medication is, it leaves you not feeling very much…..at all. It gave me a headache that lasted for 2 months solid as the drugs worked their way into my system and my head felt like it was in its own little bubble. A little bit like when you have a head cold. Sleeping became a little easier, but the vivid dreams and teeth grinding were another side effect that left me equally as exhausted in the morning.
In truth, the side effects just made a change from how the anxiety made me feel, so I welcomed the change at the time.

Anti depressants themselves are not addictive, so it isn’t the drug you crave when you don’t take the medication. However, you do have withdrawl side effects if you come off the drugs without gradually reducing the dose. I found this out the hard way after stopping them cold turkey, despite being told not to and wanting to run my car into the central reservation at 80mph. Not a wise move and one should I ever end up on them again, would I ever repeat. Even missing a day or two you start to feel the effects of the drug level dropping in your system.

Anxiety is one of the hardest conditions to learn to live with. Like any mental health disorder, no one else can see it, nor feel it, so it’s hard to help them understand. Its one of those things that unless you have experienced it yourself, its hard to describe to other people what it feels like.

I am really struggling at the moment. And it makes me sad. I feel some days I’ve made no progress at all. Although going through a divorce and a house sale, my head is all over the place. I feel so, so tired. Tired and exhausted by life. I am trying to be strong for the children whilst meeting their every need, while fighting my corner and trying to do what’s right by them but my god I am drained. I so want to get back to a place where I feel settled, secure and happy. But at the moment, I just feel like I’m in limbo and my anxiety is winning. And Im letting it because I feel like I have no fight left in me. It’s cries so loud, telling me to give in, just give everyone what they want……..but I can’t and I won’t.

Because even though I feel like I have no fight left, I am a Queen and Queens rule….they don’t abdicate!!

Only you can decide what breaks you……

Have you ever found yourself wondering about your life? What if everything you thought you knew, actually turned out to be something completely different?
I was in a relationship with my husband for 14 years. 14 years is enough to know someone inside out right?

In that 14 years I put my career on hold to care for him when he needed me, and then I became a mother. My job was to stay at home and look after my beautiful babies. A job that I love and have never resented.
I think myself so fortunate to have been able to watch them grow and knowing that I am responsible for their development and wellbeing on a daily basis.
Any person who stays at home to care for their children will tell you that its no easy task. It’s one of the hardest jobs out there, with no breaks, no sick days, no pay, no holiday entitlement, all run on very little sleep and a lot of coffee.

During our relationship, my husband struggled with the concept that the children were my priority. He would ask me regularly why I put the children before him when he would always put me first? My reply was always simply ‘Because its what any good parent does’

My divorce papers dropped through the letter box this weekend. When I initially read them, I laughed. A laugh that was half incredulous and also a bit insulted. The reasons that had been cited as my unreasonable behaviour, I can only let you imagine. But as ridiculous as they sound, and they do sound utterly ridiculous when I read them, over and over again, as the weekend has gone on, I began to doubt myself.

Maybe I hadn’t tried hard enough to please my husband. Should I have bowed and scraped to his every whim? Maybe I could have done more around the house, made more effort to show him that I was worthy of staying at home to raise our three children. Made more of an effort to show him that on two hours sleep, I had tried so desperately hard to get Alice to nap so that I could maybe load the dishwasher, change the washing over, prepare dinner, hoover, tend to the dogs, do the school runs. Maybe it was too much to expect him to interact with them after a day at work as they so desperately craved his attention. I realise how much of a hinderance and burden I must have been, to not be contributing financially to the running of the house.
And maybe, no matter how hard I tried, I just wasn’t enough to be everything he wanted me to be. Maybe I won’t ever be enough for anyone.
Maybe I’m just not worthy of the time or attention because I cannot simply fulfill all their needs. What on earth could I possibly contribute?

But what about my needs?
Those needs that I tried so very hard to make him understand but were so painfully overlooked because what I thought didn’t matter. I didn’t have a real job, I didn’t contribute, so my needs weren’t valid. I should be happy with my lot. A husband who goes out to earn money to run a household who in the same breath tells me that I am the hot topic of conversation between him and his friends down the pub. They talk about how I could never leave him because it would mean I would have to get a proper job. That I don’t do anything, just look after the kids. I have no intention of going back to work.
The needs of a person who is just a mum. They don’t count………

I know that someone always has to bear the brunt of the blame in a divorce, I get it. I called an end to the relationship, its only fair it should be me right?
But why do his words make me feel so worthless, like a failure? We are no longer together and he still makes me feel like I am not enough.
I feel like I’m continually being punished.

I really thought I knew him, that he loved me, unconditionally but how can that be true when I see how little I was thought of?
This weekend has really taken its toll on my mental health. Im finding my anxiety hard to reign in and my general mood is difficult to sift through. I wonder how much longer I can remain strong for. I am exhausted, right down to my bones and I don’t know how to make it better.
Most days I am the storm, others I am the battered oak tree trying to withstand the wind that’s trying to break me.

But then I remind myself, the only person who can break me, is me.





Chin up little stargazer…..


Sometimes whilst we are so busy drowning in our own sorrows, its so easy to miss what’s right in front of us. Since Sam’s diagnosis its been a daily struggle to find the positives in not just this situation but in my life in general.
Mine, and Sam’s world felt like it had ended there and then in the consultation with Dr Parker.
Holding on to such a huge bombshell and the wealth of information I have since found out, I honestly didn’t know what the hell to do with it.
Allowing myself to be swallowed up by my own grief and loneliness, I realise I’ve been overlooking what is truly important; that my children are my life, my world and they deserve a present mother. What they have had since December is this shadow of a car crash, that has had so much to deal with on top of Sam’s diagnosis, that she could barely function.
They deserve so, so much more.

Tonight was parent consultation night at the children’s school. Like any parent, my children make me proud every single day, but to receive feedback from their teachers, I know I must be getting something right at least.
Meeting Sam’s teachers, I always feel like I don’t know what I’m going to hear, given past experience. I’m sure his previous year 2 teacher will empathise with my feeling of apprehension on this, but tonight was truly wonderful.

Ive mentioned before that since the VI team have been in situ in school, his confidence has come on in leaps and bounds, and to hear just how well he is coming on made something in me stop.
I said when we first found out about Sam that a fault in his genetic code does not define who he is and sitting speaking to the staff who work with him on a daily basis made me realise that Sam will never, ever be just his diagnosis, he is so, so much more than that.
Being told how incredible he has been learning his braille and how quickly he has picked it up, along with his touch typing, how well he manoeuvres around school and in the playground given his sight impairment and how quickly he adapts to changes has amazed everyone.
He is a beautiful, bright, intelligent little boy with the most vivid imagination, who loves nothing more than to immerse himself into a world of play with his friends.
How could I have let something like a number and a code overshadow that and not see him for what he truly is.
He is Sam, who despite everything that he has been thrown, has just embraced it, got on with it and loves life.
And when I compare myself to that, I feel ashamed that I couldn’t do the same. The negativity needs to stop and I have to learn to find the positives, because they are absolutely there.

I live for my children, but for the most part of the last 2 months, I haven’t lived, I have just been existing. It’s time for the pity party to stop and for me to wholeheartedly give my children back the mother that they deserve. They will only ever have the one, and they need me. I owe them.

A date with Dr Rittey……

2 months after the diagnosis that would change the course of our future, I’m not ashamed to say, it’s been hard, and I have struggled, massively. More so this week.
Sam is doing so well in school, the staff are all incredible and since the visual impairment team have been in place, he has thrived.
I had the loveliest feedback from the visual impairment team at the end of last week, especially Sam’s habilitation worker Lisa, who sent me the most wonderful videos. Sam has started using the long cane within school and will eventually be able to use this out and about.
Looking at the videos, I am so incredibly proud of how quickly he has picked this up and just how confident my once shy little boy now is, chatting away to Lisa and correctly using the cane.
Listening to just how supportive and encouraging Lisa was with Sam, filled me with so much love. To know that my little boy is being so well looked after and cared for when I’m not there to do it and knowing he is so supported within school is a wonderful feeling.

However my feelings of joy were again short-lived. As the house is currently up for sale, I’ve started sorting some of the children’s old clothes out that are of no use to anyone now. In the garage, I came across a box that contained a photo book that was gifted to me, full of pictures of sam as a 6 month old baby. Within the same box were all his tiny baby clothes; the clothes I brought him home from the hospital in, his hat my brother and sister in law bought for him to come home in, the first outfits he wore when I brought that tiny new bundle home. I can’t say I have ever experienced pain like I did in that moment. I couldn’t stop it, the hurt in my chest was too much to bear. I physically wrapped an arm around my ribs to try to stop the it, but I couldn’t. I stood in the garage, by myself and I sobbed. I sobbed until my ribs hurt, my eyes were swollen and I couldn’t breathe. Lightheaded and exhausted I slumped to the floor. I sat and cradled what I had in front of me. Why couldn’t I hold myself together? Why couldn’t I be stronger than this? What was wrong with me? And I would cry like this for the next three days. But this wasn’t just crying. This wasn’t just sadness, this was pure, unadulterated grief. Grief like I have never known. And then along came the guilt. Major guilt. Because I am so fortunate in that I haven’t lost my child, he’s still very much fit and healthy for the time being, so why do I feel this loss? In essence, and the only way I can explain it is that I am very much still feeling the loss of what could have been. That I now know won’t ever be. The loss of the future I had planned for my beautiful boy. That tiny beautiful 9lb 1oz baby boy that I had wished on stars for, wasn’t mine to keep. And it hurts. God does it hurt.
It hits the hardest when all the kids are in bed and there is then no one to hear me, no one to hold me together, no one to ease the pain. I know there are people at the end of telephones and text messages, but it’s not enough.

So today was our meeting with Dr Rittey. And I can honestly say, I loved my date with him!!So much nicer than my dates with Dr Parker and Battens.
Dr Rittey is a consultant paediatric neurologist who specialises in epilepsy, which is going to be the next step in progression of the disease for Sam. And at the moment Sam is exhibiting no signs of seizures, which is great, his mobility is good considering his visual impairment and all his reflexes are as they should be. What a lovely experience this was. Dr Rittey had such a lovely manner when addressing Sam and was lovely to chat to. He has experience of working with children who carry the CLN3 gene, which is also reassuring.
It was a bit of a get to know you session really. Just to get some background information on Sam. He was weighed and measured and we chatted about how his condition had progressed and where we are at now. We discussed the fact that Sam doesn’t sleep and that I am severely sleep deprived which isn’t helping anyone. So he has prescribed us 2mg of melatonin to try to see if this helps. I could have kissed him.
For the time being we will be on yearly reviews with a view that if anything should arise or change, we have an open door policy and can go to see them as and when we need to. I have also been put in touch with the neurology nurse who will be in regular contact and I can ask her any questions I may have. All in all, it was a lovely positive experience. Which after the week that Ive had, was very much needed.

My anxiety has been in overdrive and so hard to control and keep on top of this week, coming to a head over the weekend and in the end it won and made me ill, so I missed my best friends birthday #flakyfriend

So for the time being I am surviving. Nothing more, nothing less.
No amount of sleep helps when its your soul that’s tired.