I know Im not alone when saying this, anyone who is a parent, or suffers from sleep disturbances will sympathise…but sleep deprivation has to be one of the worst forms of torture going.
Sleeping should be such a normal bodily function, one that is not only essential for your physical being to rest but its also hugely important for your mental well being. So when you start to miss it, it can sometimes feel like you are living in a dream world, rather than drifting off into one come the night.

From being a tiny boy Sam has always been a poor sleeper. We originally put this down to him just having serious FOMO and nothing else. We tried every sleep training you can imagine possible and for a very short period of time, he did sleep through…..some nights. His sleeping, as with everything else, has always been very sporadic. Some nights he would sleep from 5pm through to 7am, sometimes later, the next morning. Other nights he would be up every hour, shouting, knocking on our wall, knocking on the adjoining neighbours wall (its a good job we had an amazing neighbour!!) at all hours in the morning and as a result was exhausted the next day. He also always had a crippling fear of the dark, which I can’t comment on, because at the age of 32, I am still scared of the dark . But Sam’s fear has been made no easier by the fact that he now has hardly no vision at all.

At the time, I hadn’t known that sleep disturbances are part and parcel of Batten disease and it can affect patients at any age or stage of the disease. When I discovered this, it made a lot more sense as to why we had always struggled with Sam. This is I suppose, also where my deep rooted fear comes from, with regards to Alice not sleeping. And more recently that fear has become very real. She is like a carbon copy of Sam with her sleeping habits. They are both a little like Duracell bunnies, in that they just never seem to tire, ever!!What if she is affected by the same gene defect?
If Scarlett doesn’t get a good 13-14 hours of sleep, she is awful and she knows herself its because she’s tired. With Sam and Alice, Im lucky if they have a solid 5 hours some nights. Which as a result also means that I am currently running on less than that. Mixed in with insomnia, I am sometimes awake until 2-3am, in which time I have been up to and settled Alice 2 or 3 times and Sam more or less the same. And Im back up for the next day to start at 6.30.

As Sam’s condition is progressing, his sleep disturbances become more apparent, more frequent and occur for longer periods of time. Over the last few weeks, he will repetitively ask me questions before bed, like am I going downstairs, am I going in the bath, are you having dinner, are you watching a film, the list goes on. I always give him the reassurance he needs but no sooner have I got myself into bed, bath, downstairs, whatever, he is behind me asking me the same thing. So back to bed we go, and the pattern continues, for sometimes up to 2 hours before I can’t take anymore and he gets into bed with me. And he then proceeds to complain because my hair is in his face, or he doesn’t have enough cover………my bed matey.

I absolutely loathe being grumpy mummy or shouty mummy, but sleep deprivation is an absolute killer and somedays this is exactly what it makes me. It forces out the very worst in you and its awful sometimes when you reflect on this. Like in the early hours of this morning, where I’d managed to knock over the entire bedside table after getting my arm caught in the kids iPad chargers and breaking the lamp to boot, I shouted at them both and I am struggling hugely with the guilt as the morning goes on. It’s hard to remember that you aren’t that person, when it’s the dead of night and you have not one, but two children crying, and wanting your attention for various reasons and there is only one of you. I wish there was more I could do for them but I can’t split myself in half, and I will be totally honest, I really don’t enjoy sharing my bed with them. Knees in my back and elbows in my face don’t really do it for me. And I need to sleep, but I’m not entirely sure how to fix this yet.

So parents of children that don’t sleep, please know that you aren’t alone. There’s nothing worse than a smug parent who tells you their children are all magnificent sleepers and it makes you want to hot spoon them in the face, but remember, we all have our own battles to fight. Some people just like you to see their highlight reel and not what goes on behind the scenes.

And to those fighting their own battle with their own mini sleep thieves, I salute you.

The people that really know me, know that I have a very tight circle of friends. These are the people I trust with my life, sometimes very literally, trust with my life. They are the people I want to share my good news with and the people who also know my sadness, my fears and my secrets. I do not open my heart easily and I do not give it to just anyone. These people have very much earned their places in my life and I am very lucky to have them there. Making new friends is not something I love, I will be honest, it scares me. I don’t like opening up, I hate to feel vulnerable or misunderstood. Well you remember my date with Batten’s? I’ve been making an effort to get to know them a bit better. Although I really don’t want to.

It’s been almost 3 weeks since Sams diagnosis and although some days I feel like I have my life together and everything’s going to be ok and I can deal with whatever is to come, other days its hard to see the wood for the trees. I frequently speak to people and they say ‘oh you are looking/sounding better than I thought you would’ what does that even mean?What am I supposed to look like? Granted on the days they have seen me or spoken to me, they have caught me on a good day. Given that most mornings I have to apply a full face of make up now to look anywhere half decent as insomnia wracks my body and steals my sleep, along with the eldest and youngest Evans children, who still have serious FOMO (fear of missing out) and will not sleep.

I could never begin to thank each and every person who has reached out to me after posting my blogs. The response I have had has been incredible and sometimes its when people have been brought to their knees that the spirit of human kindness really shines through. Its restored my faith in people, there is some goodness out there still.

Sam has now been referred to a Dr. Rittey at the Ryegate centre in Sheffield. A paediatric neurology specialist whose area of expertise is complex epilepsy, which is really what we are going to need looking forward to the next step of progression for Sam’s condition. Epilepsy terrifies me, it always has done. But this is something I am going to have to get a grip on and get over it to provide the best care I can for Sam when the time comes.

Having also spoken to a Batten nurse specialist at great Ormond street, I now have details of the two Batten disease specialists in London and will be able to sort a referral for Sam when we attend his appointment with Dr Rittey. This will involve travelling to London once a year to attend a multidisciplinary meeting of people who specialise in this area. This again comforts me and terrifies me in equal measure. These people are going to know exactly what they are talking about, which is great for answering any questions we may have…..but am I ready to hear the answers? Of course that’s not even a question. Im going to have to hear them whether I like it or not. This is after all, not about me, it’s about Sam.

Beside the fact that Sam doesn’t sleep and sleep deprivation is slowly eating away at my sanity, his vision has become increasingly poor over the last month or so. Today, Christmas morning, he couldn’t see any of the presents he was opening, which made my heart want to escape out of my chest and just hug him. Being the boy that he is, he would not have thanked me for this. At school the visual impairment team have been teaching Sam how to touch type and they have been teaching him Braille. It absolutely fascinates me, so clever. He’s been doing really well and demanded that the staff reward him with dinosaur certificates, which they have so very kindly indulged him in. Since Sam’s diagnosis, school have been so supportive looking for any ways which they can support him. At the moment we are all in the same boat in terms of, we don’t really know how to do that. He is coping very well with the visual impairment team in situ, and I think it will just be a case of taking it as it comes and put the support in as and when necessary. Still it’s great to have their backing and we get to keep things as normal as possible for Sam, for as long as we can.

I did something I really didn’t want to do today. I self referred our family to Bluebell wood childrens hospice. A hospice…..for my child…..again, is this even real?It doesn’t feel like it half the time. It’s something that I know I needed to do, but until I spoke to an old school friend on Christmas Eve, I didn’t know when was the right time to do it. Truth is, there is never going to be a right time for this. We are going to need their support, the girls will need their support and most importantly so will Sam. So why not now?

So 2018 is drawing to a close, Christmas is over and we look forward to the new year. Or most of us will. It’s been a whirlwind of a year and my life has been turned upside down in more ways than one. I have walked away from situations that refuse to help me grow and walked into ones that will help me flourish. But the unknown scares me. I don’t know what will happen or where we will be this time next week, next month, next year. All I know is that we survive, one day at a time. I will always give my all, my everything, for Sam, the girls and myself and look forward to the promise of new year, new beginnings.

Merry Christmas and and very happy new year xx

*Trigger warning* Miscarriage

For the majority of people the day you learn you are going to become a parent, your world changes. You suddenly have this incredible, tiny life growing inside you that you have created and its your job to protect it, love, care, nurture and grow it whilst its nestled safely inside you. Because as a mother, there’s only you that can do that job until baby is earth side. But what happens if that baby was never meant to make it earth side?

Miscarriage and baby loss are another of those things that as a society we don’t talk about. But why? Largely it’s a result of us feeling uncomfortable or because we don’t know how to approach the subject. As a woman who has experienced the loss of two pregnancies, the last thing I wanted was for people around me to pretend that it wasn’t happening. Or worse downplay it, like it didn’t matter, it didn’t deserve acknowledgement because it wasn’t really a baby yet, that because I’d got cancer it was better for me not to be pregnant.

By the time my first miscarriage was officially over, physically my body was wrecked and emotionally Id been left bereft by the experience I had at the hands of health professionals who refused to listen

I had a wonderful first pregnancy, textbook in fact. He even arrived 5 days before his due date and was a gorgeous bundle of chubby cheeks, thick brown hair and gorgeous brown eyes. I wanted my children close together and after 8 months I was pregnant again with baby number 2.

Overshadowed by my recent cancer diagnosis, this baby was a tiny ray of hope in what was a very dark period. Something to keep me going and along with sam, a reason to stay positive. As the weeks passed, I had no sickness or nausea, my only symptoms were tiredness and backache that I couldn’t seem to shift. But with a very active toddler, I couldn’t complain really.

When I was 12 weeks pregnant, the backache got increasingly worse and then the bleeding started. I rang through to the EPAU who couldn’t get me in for an appointment for another 4 days. They told me if the bleeding increased to go up to A&E. And that’s exactly what it did, so in A&E I ended up.
A urine sample, 4 blood vials and an internal examination later, I was told that the likelihood that I was miscarrying was high (tell me something I don’t know) and I had been booked for a scan the following morning. Although my heart already told me what I needed to know.

‘Im sorry Mrs Evans, I can’t find a heartbeat and it looks as though the baby stopped growing a few weeks ago. We’ll need to leave it 2 weeks to make sure there is definitely no signs of life or growth. In the meantime you may miscarry naturally’
Walking out of that room, I felt the crushing weight of responsibility bearing down on me. It was my job to grow this baby and I had failed. My body could successfully grow a tumour, but had failed to protect and grow my baby. What was wrong with me? Id managed it the first time round, so why couldn’t I do it this time?
I was back to playing the waiting game. For two weeks, I tortured myself for being inadequate, whilst being crippled by pain and bleeding heavily, just to give me a daily reminder that I was having an ‘unsuccessful pregnancy’ and I was a failure.

After two weeks, I attended clinic again and was given another scan, that only confirmed that I’d had a missed abortion or missed miscarriage. Where your body continues to think that it’s pregnant but the embryo stops growing. I really had failed. My body had conned me into thinking I was still pregnant for 6 weeks after my baby had stopped growing. And it would prove that it was adamant it wasn’t going to let go.

After the scan, I had to sit with a nurse and make a decision about what route I wanted to take to rid my body of its retained products of conception…….I absolutely loathe this term. In the words of Dr Seuss, a life is a life, no matter how small. Products are something you buy in a supermarket, not a life that could have been.
I was given the choice of miscarrying naturally (clearly my body wasn’t doing a very good job of that) medical or surgical management. I didn’t want the medical management, having seen the procedure and understanding the process, it wasn’t something I would have ever chosen. The nurse was wonderful and told me it was my body, my choice. I opted for surgical management, I would be away for a few hours all being well and then home again with Sam, I hated being away from him. She booked me in on the emergency list for the following day.

I was nil by mouth from midnight that night and made my way onto the ward for 7am. A doctor came to book me in and cannulate and consent me. She failed 4 times to get a cannula in, I could have done it better myself. And that’s where I would wait until my slot for surgery. 1pm came and with it arrived the surgeon on the ward…..telling a nurse how happy she was to be finished……the nurse saw me looking confused, so she queried why I hadn’t been called for surgery. Apparently my name wasn’t on the list. She pulled my notes and began looking through the epau ones. Approaching me with the kind of self assuredness that surgeons tend to have she announced that as I was only technically 6 weeks pregnant, I was more suitable for medical management so that’s what we’d go with, she signed off some paperwork and with that she was gone……hang on a minute……that is absolutely not what I signed up for. And yet a few hours later, that’s exactly what I found myself having.

A Dr arrived to give me the first pessary. I couldn’t move for a period of time afterwards so I fell into a fitful sleep, not having eaten or drunk for almost 24 hours.
Then came the dawning realisation of what was coming next; the soul destroying task of having to use the toilet. Anyone who has been through this experience will know and remember the feeling all too well.
Having to use a bed pan liner to catch whatever your body decides to pass for you to then hand to a nurse to examine…..every time you go to the toilet. This was part of the process that I had wanted to avoid. It is not pleasant for anyone involved. And yet again here I was, doing the thing I didn’t want because my choice had been taken away from me.
By the next morning, I had failed to pass anything pregnancy related, so I would need another pessary. More waiting and another day away from my little boy. My husband wasn’t allowed to stay so this experience was one I endured on my own from start to finish, with no pain relief other than paracetamols.

The next pessary was put in, another 12 hours were allowed for it to work, and the surgeon that had refused my surgical procedure had said that if this pessary didn’t work Id have to go to theatre, so continue to starve me…….say again lady???So after all this, I could end up in theatre anyway and I still wasn’t allowed to eat! I was so frustrated and angry. Frustrated that this was not what I had asked for, frustrated that my body refused to comply, angry that they had put me through something I didn’t want. I was stuck in hospital, away from home and I absolutely hated it.
And of course, after 12 hours, my body had refused to part with absolutely anything.

By this time it was visiting hours. The surgeon of course chose then to come back round to review me. She asked if she could give me a quick examination to see what was going on…..in the middle of visiting. I gave my consent, albeit grudgingly, I just wanted this over so I could go home. Upon thorough examination she declared that she could see something and was going to remove it……what?Now?In the middle of visiting?And with that she began. I cannot even begin to describe the pain I would then endure. I lay on that bed, with just curtains separating me from the rest of the ward, holding a nurses hand and biting my arm to stop myself from making any noise as hot tears rolled down my face.
This would be one of the most degrading experiences of my life. After a good 5 minutes, she declared that she ‘thought she had it all’ she would book me in for a follow up scan and I was free to go. I felt so violated and so very much alone. Topped off by another doctor asking how I would like to dispose of my ‘products’, would a mass burning be suitable?I was mortified.

At home the effects of the miscarriage started to take its toll on me. My body felt bruised and tired. I felt so empty, like a part of me had been taken and I would never get it back. From a medical point of view I know miscarriages usually happen because the pregnancy is not viable for any number of reasons. But that knowledge didn’t fill the void I now felt.
The grief of never knowing what could have been and the overwhelming sadness that I had failed consumed every minute of my day.

Then rolled in the comments:

‘Well its better for it to have happened now rather than later’
‘Think yourself lucky you’ve already got a baby’
‘You can always try again’
‘Its fine, its not like it was a baby yet anyway’
‘Its only like a really heavy period, get over it’

People generally mean well, I know, but please think before you speak. You are talking to a person that is grieving after a loss. No matter how early or late that loss is. Offer comfort, support, love, understanding. Physically and mentally they are recovering from something that unless you have been through it, you can’t possibly understand how difficult it really is.

It makes me incredibly sad that an experience that was already hard, was made harder by my voice being taken from me and my choices not acknowledged by people you put your trust into. It took two months to finally get the all clear. If they had done what id opted for, the procedure and experience would have been over in the same day, with less trauma left in its wake.

And as for you little one, that tiny little being, that was so swiftly here then gone, you will always be my favourite ‘what if?