Samuel’s Story

It’s been too long since I have written about Samuel. I think about him every day and speak about as much as I can, but I don’t write about him anymore and that is something I miss terribly. I’ve been wanting to write about Samuel for a long time. But it’s hard when there is nothing new to say. No update on his latest medicine cocktail, a change in his seizure plan or just share something wonderful that may have happened.

Special boy

But then the other day I had an email from an old faraway friend. She told me how much she misses hearing about Samuel and seeing photos of him in her social media timeline. She then went on to tell me that she had recently become a volunteer at her local children’s hospice. Because of Samuel. She told me she had been thinking of him lately and looking over old posts on the blog. She had never met Samuel but wanted to help other children like him and families like ours. She said she feels he’s with her on each volunteer shift and she tells some of the families about the special boy she once knew. She told me I must never stop writing about Samuel. He has an important story to share. While it’s something that I’ve wanted to do for a while, this has given me the final push to get started on a book about our wonderful four years with Samuel, the highs and the lows and living with ARX.

Samuel’s Story

It might take me the rest of my life to write, but I will make sure the world knows about Samuel’s story. I started this blog back in 2011 and while it may now look very basic and dated, it has always been a wonderful way to connect with other people and give people an insight into our world. I hope that when it is finally completed, Samuel’s Story will do justice to a boy who brought so much light, love and cuddles into our lives.



A Sky Full of Stars

We were having lunch today in a restaurant when Coldplay’s A Sky Full of Stars came on. It’s Samuel’s song. I can’t begin to explain the bittersweet emotions this song stirs in us. I love to hear it, but sometimes I’m looking forward to it finishing as it can truly make my heart ache.

But something about it today made me want to come on here and look around my old blog posts and remember what I use to write about when Samuel was still with us. I must admit, I am jealous of that person I was then, who still had Samuel here to love and care for.

I also had a look at the stats and I was rather overwhelmed to see that people still visit Tricky Customer and read our story. I want people to know about Samuel, to share in his wonderfulness. I want people to understand more about ARX. I want people to think about Samuel, to say his name and to know about the life he had, albeit far too short. I hope that people learn from his story, the take something positive away from it. Even if it is just to give their own children an extra big hug.

Maybe with that in mind, I should keep this blog going then.

My dream has always been to start something wonderful in his name. To do something to help other children like Samuel. To help other families like us. I’m not really sure what to do and where to start but one day I hope to get there.

I also want to thank all those people who held our hands (and held us up) along the way. From the very start, it was the angels in Neonatal right through to Julia’s House who regularly looked after Samuel, support us as a family and even at the end, look after him before his funeral. And in between, of course, there was Langside School, Samuel’s wonderful school. Possibly the best year of his little life was the experience of going to school.

I have so much I want to do in his name. But where do I start?

And by the way, if you aren’t a fan of Coldplay, just listen to the lyrics…

“A Sky Full Of Stars”

‘Cause you’re a sky, ’cause you’re a sky full of stars
I’m gonna give you my heart
‘Cause you’re a sky, ’cause you’re a sky full of stars
‘Cause you light up the pathI don’t care, go on and tear me apart
I don’t care if you do, ooh
‘Cause in a sky, ’cause in a sky full of stars
I think I saw you

‘Cause you’re a sky, ’cause you’re a sky full of stars
I wanna die in your arms
‘Cause you get lighter the more it gets dark
I’m gonna give you my heart

I don’t care, go on and tear me apart
I don’t care if you do, ooh
‘Cause in a sky, ’cause in a sky full of stars
I think I see you
I think I see you

‘Cause you’re a sky, you’re a sky full of stars
Such a heavenly view
You’re such a heavenly view


Looking for a shooting star

They say time is  great healer. It isn’t true. Time just goes on, selfishly, uncaring, with no regard to what’s happened. I guess with time, you might get use to something, your normal has changed and time may mean that you have no choice but to get on with it. But time pushes you further away. It wasn’t yesterday you were here, or last week, or even last year. I can no longer refer to you as being here last year. Time makes the memories fuzzier. Time makes you doubt yourself. It plays games. Sometimes it feels like you were just here, you were here yesterday in my arms. And then sometimes it feels like it was such a long time ago that you were here. Sometimes it can feel like you were a film I watched. Maybe I imagined you. But then it can feel that you only left us yesterday.

I know when people hear our story. Your story. They feel sorry for us. Their chest tightens and for a quick second they allow themselves to consider the possibility that they could lose their child. They watch us while we talk, looking for the damage. Wondering how we are not sobbing, still able to smile, still able to function. When I meet new people and the inevitable question comes, ‘do you have any other children’, I dwell on what to reply. I don’t want to deny you, but if I say that I had another son they will ask me about you, I will have to tell them about you and I will have to see their pity. It’s what they will think about when they next see me. They will feel sorry for me, for us. I find that so frustrating, because it ignores the four years we had with you. It’s always about the fact that you are gone, or that you were pretty hard work at times when you were here. It’s not about the good stuff. The love. Oh the love and the cuddles. The effect you had on people. It was like magic. The way people were visibly stunned when they noticed those ridiculous eyelashes of yours. I remember a lady standing next to us in a lift staring at you. When she went to speak I was dreading the thoughtless comment she was about to make, but instead she told me that you were the most beautiful child she had ever seen. She said you looked like an angel, too heavenly and beautiful for this world. How right she was.

I miss our special world. I miss all those words we said every day. Medicines, syringes, feed pump, carers, wheelchair, physio, I miss it all. I miss special needs. I miss special needs children and their special magic. I miss that pride I felt when I wheeled you onto the ward, or for an appointment. Seeing the effect you had on nurses, doctors, school staff, your professionals. Seeing how your neurologist always seem to go weak at the knees for you. Watching those nurses care for you on the ward. The way they talked to you and couldn’t do enough for you (even having to be reminded they had other patients to look after). I miss looking at them with you and thinking proudly, he’s MY boy.

Every night your little brother says goodnight to you and blows a kiss to your photo. Sometimes he says, ‘see you soon’, sometimes he calls you, ‘big brother Sam’. I wonder what he thinks. How he thinks about you. I suppose to him it’s just really normal. There is this person, this little boy that people talk about, that he sees in photos every day, but he never sees properly. He comes to your resting place with us and by his own accord blows a kiss to your plaque and waves. I wonder how he computes it.

I do feel sometimes that you are here with us. By our side, on our shoulder. I will always grip on tightly to your Dad because I see you in him. Not just that you had his features, but because I know you are there in him, in his mind all the time. It’s like we have a permanent film running in our brains of you. Our minds, our brains have been tattooed with your face. We can be talking about a new microwave, but your face is there in the background of our mind. Always.

It’s impossible to put into words how much I miss you. It’s like losing a leg and having to walk again. I feel like I’ve lost a big part of my body, of my physical being. I am a mother of two, but with only one child here. I know some people will say that it was a bizarre thing to do, but that’s why I had to get that tattoo on me. I needed to physically change a part of me. I needed a physical scar to reflect that I was no longer the same. I had all my limbs, my face was the same, but a huge chunk of me was missing, and the remaining parts felt damaged. It may make no sense, but none of it does really.

I want to do big things in your memory. I want to help other families with wonderful children like you. I want to do so many things but I can’t just yet. I’m not ready. But one day I hope that Samuel Luke will be part of why a child smiles or has something that will make their daily life so much better and easier. One day we’ll do it son, I promise………..



Sometimes it feels like you were here a very long time ago and we’ve been adjusting to your absence for many years rather than only 16 months.

Sometimes it feels like I imagined you. That you were never really here, but a dream I had. Everything that happened over those four years was just all in my head.

Sometimes it feels like you never left us. You are just at school, or at Julia’s House. You will come home soon and I will unpack your bag, put your pump on and give you a cuddle. I can go for walks and almost feel like when I get home I’ll have to get things ready for you. There are mornings when I can almost believe that if I go downstairs, one of your carers will be there on the sofa holding you in their arms, or they will be busy in the kitchen preparing your medicines.

Sometimes it feels like you only died yesterday. I remember that day far too vividly. A day spent wondering what on earth were we going to do without you. Those phonecalls I made. I can remember the exact words we said. Hearing the silence as they were taking in the news, listening to their hearts breaking. But it was a day packed full of love too. It can feel like it has only just happened. That rawness is still there. It’s still so terribly sore.

Sometimes I find it strange to think that there are people who never knew you. They spent those four years not knowing anything about you, they didn’t even know you existed. How is that possible?

Sometimes I think that you are here in our home. You are in our memories. You are in our smiles. You are in our joy of your little brother. I think part of you is living on in him. There is a certain magicalness that you left behind in him.

Sometimes I feel that we will never be OK. But we don’t cry as much as we did. But when we do cry, we cry just as hard as ever.

Sometimes I think there was a purpose to you. More than just being our son. You were here to help us and I don’t just mean your Dad and I. You had an effect on so many people, that there lives will never be the same either. They feel your loss too. But they also feel the way you touched their hearts. Maybe your purpose was to bring us together with some wonderful people. Maybe it was to show us about true, unconditional love. Maybe it was to make us the best parents for your little brother.

Sometimes I feel so frustrated that you are gone, I just want to punch a wall. It’s something I cannot undo. I can’t throw money at it. I can’t do anything. It is something beyond everyone’s control. I feel quite desperate at the permanence of it all. And how someone so big and important as you could suddenly go.

Sometimes I feel relieved that you are at peace. No more seizures. No more medicines. No more prodding and poking. There is no more fear. The worst has happened.

I always feel proud that I was your Mum. And will always feel proud to tell people about you. Thank you for being my boy, my son, my angel up with the stars.


A letter to my boy

Dear Samuel

I can’t believe that it’s been almost 10 months since you left us. It can feel like it was just yesterday. In some ways I feel like the world has stopped still since you went, and then it feels like so much has happened too. Your little brother has grown up so much and I have started working again…there are some days when your absence is so obvious, so visible and some days not so much, because we still think of you as being here.

We visit your resting place every week. I hope it is peaceful for you there. It is so beautiful. I know I don’t cry when I’m there at your forever bed, sorting out your flowers and tidying up. But I cry every time I walk back to the car. I sing Twinkle Twinkle to myself and have a little cry, walking away from your resting place feels like I’m walking away from you, like I’ve just lost you again. But I love seeing what Harbour View looks like with the change of seasons. Every week we say that we are pleased we chose there for you. I’m looking forward to planting some daffodil bulbs at your spot, so it will look even more beautiful next spring.

We have had to deal with and process immense sadness this year. Sadness that I could never have imagined before. The sense of physical loss has been extraordinary. I’ve felt like a physical piece of me, part of my body, has gone. But I can still feel you in my arms, the softness of your skin. Sometimes I can almost believe that you are still here. Almost.

But we have had lots to smile about this year. Your little brother has been our ray of sunshine. He is such a delight. He makes us smile and laugh every day. We adore him. He has saved us. He will grow up knowing all about his big brother, you are in his heart. In your short life you blessed us with many things, wonderful people we have gotten to know and you showed us just how beautiful life can be. But we believe you gave us your little brother too. You made sure he was here to look after us after you left.

It isn’t just us that have had to cope with your loss, you broke the hearts of so many. And as I always do, I ask you to watch over them and give them strength – you were a strong and brave little boy and there are many people who need some of that strength and bravery now that you are gone.

On a clear night we look up to the stars and think of you. You are all the stars in the sky.

I sometimes feel that I desperately need to know that you are OK, you are at peace. That you know how much we loved you. But I think I know. All you ever knew was love. And you can only be at peace. Your little body can finally be at rest.

You will always be my special boy. My superhero. My superstar. I hope one day that I will be able to hold you in my arms once more. Until then my Samuel Bear, sleep well.

With all my love forever,

Mummy x



I’ve been thinking about this blog for ages. I’ve wanted to write something but it’s just impossible to find the words. I miss him. I miss my Samuel Luke with every part of my being. I can’t say it gets any easier. Right now I’m writing this with tears streaming down my face. I miss telling you about what he’s been up to. But there is nothing to say now. It all feels like it’s frozen in time.

Sometimes I feel like I’m in control of it all. I’ve compartmentalised it all in my brain. I can tuck it away and only dip in when I feel ready. When I want to. But then other times I’m swimming in thoughts of him and I can’t come up for air, I’m drowning. I think of stupid things that I wish I could change but they wouldn’t change the ending, I know that.

We visit his resting place every weekend. We leave flowers and tell him that we love him and update him on what’s been happening – but he knows it all because we talk to him all the time. There is a very special little boy who rests just opposite to Samuel’s forever bed and every time we visit I leave a little flower on his plaque and say hi. I love that Samuel has a special buddy near by.

I miss our special world. I miss all his carers. I still see them, we will always cherish them dearly, but it’s not the same. There is no update. There is nothing to tell them. No folder to fill in. No new medicines to tell them about. I miss his school. I will cherish that year he spent at that amazing school. All those people that worked so hard for him.

I love it when people tell me about how much they miss him. How it hurts them, physically hurts them when they think of his loss. They have their own personal loss of Samuel to deal with it. But it breaks my heart all over again too. Their loss breaks my heart. It wasn’t just our hearts he broke when he left. At his celebration, after his little nest was lowered to the ground, I said to his Dad that I couldn’t bear all the sadness. All these people that were there crying and some of them grieving for themselves. They will never see their Samuel again. I think of certain people who visited him after he left us, who touched him and were not afraid. Just sad. His friends at Julia’s House who looked after him after he had gone. They sang to him. They changed his PJs. They took his hand prints. They celebrated him. The thought of that makes my heart ache. Truly ache.

I keep finding white feathers at certain times and think to myself, is this Samuel saying hello? Is it him saying, ‘it’s ok mum. I’m ok’. I hope so. We asked Samuel to watch over his brother when he went into hospital for a procedure on his hand and just the other day as we were saying what a good job Samuel did, Toby reached into his bib and picked out a white feather and handed it to me. Was that Samuel?

I can’t believe that someone so enormous, so important has gone. And that’s it. I pray that there is heaven. I NEED there to be heaven. I need to know that I will see him again. I will hold him in my arms again.

And then just when I think I will never cope. It’s all just too sad. His little brother comes up to me and brings me his music shakers and wants me to make music with him. He brings me a car and wants to race cars with him him. That little boy is my life now. He has given me sunshine every day. He holds me when all I want to do is hold his big brother. He touches my face when it’s wet with tears and in his own Toby like way, tells me it will be ok. We will all be ok.

I know my big boy is at peace. Wherever he is. No more seizures. No more medicines. No more prodding and poking. He is at peace. He is somewhere with the stars. Watching us.

I know I’ve made you feel sad reading this and I’m sorry, I just had to get it out. I am fine. I’ve been blessed with being a mum to the most amazing and brave boy for four whole years. Every day I feel extremely lucky. It’s just now and again things hit me and I think it’s best I get it out. I’m fortunate to be married to the most amazing, beautiful man who will always be worth waking up each day for. He is my best friend and soul mate. And then there is our wonderful little Toby…

If you were one of Samuel’s special friends (even if you were a faraway friend), thank you for loving him. Smile and think of his ridiculously outrageous eyelashes, his warm soft hands and those, those big blue eyes. Your friend Samuel is at peace now. He’s free, just like a bird.


It’s been a while since my last post. In fact I wasn’t sure if I would ever post again. This blog is rather bitter sweet for me now. I started it because I wanted the world to know about a very special and unique world. And a very special and unique little boy. To give people an insight into our world, raise awareness of a very rare condition and connect with other similar, special families. Well I think I did accomplish that.

You are probably reading this wanting to ask how we are, but you don’t want to ask as you worry it’s a daft question. My general response is, ‘Ok’. Plodding along. Surviving. I’m not really sure what the correct answer is.

We’ve lost something and someone incredible. I feel like part of my body is missing. It’s not just emotional pain and loss I feel, but physical too. It hurts in my chest, in my stomach, my legs feel weak and my arms ache. They ache to hold him.

But he’s everywhere. Whatever I’m doing, whoever I’m talking to, his face is clear in my mind. I think I carry him around on my shoulder. Everything I do, decision I make, he’s there. He was the centre of everything for four whole years that cannot suddenly stop.

I didn’t know what to do with myself after he died. He was my boy, my son, but also my job. We had to return all his equipment, his bed, his chair, his hoist, his wheelchair. The Motability van had to be returned. We had to notify the benefits we received on his behalf. That all stopped.

So much automatically changed.

Since he died, I’ve noticed our language has changed. We have never said coffin, Samuel is resting in his nest, never say grave but resting place and never funeral but celebration.

At his celebration, along with all the hugs and tears from those close those who barely made the effort to see him in his four years, we were constantly told how brave we were. People were looking at us, almost willing us to cry. I asked a close friend what people meant by ‘brave’ and she said it may be that people consider us to be brave because we are still standing. But we aren’t brave or strong, we just made a decision that we have to survive. We have to live. If we didn’t have our little Toby then maybe we would have been in a much darker place. But we have so much to live for thanks to Samuel’s little brother.

I’ve found people strange since he died. All those tears and hugs from people who barely made any effort with us over our toughest times. The last six months of last year were horrendous. Where were they? And we’ve barely heard from them since.

It seems when someone passes away, you hear lots from people afterwards and around the time of their celebration then silence. But that is the time you need people the most. You have nothing left to organise and arrange. You are trying to work out how to move forward. That’s when you need people. When you need support.

But we’ve been lucky too. We have a small group of close friends who not only adored Samuel but have been a constant in our lives for the last few years and since he left us. They let me talk about him whenever I need to. They are patient with me. Despite their own grief they let me say whatever I need to, however sad it may be. They are holding our hands.

We take comfort in things like he passed away at home, in his sleep, with no distress. He was in no pain. We didn’t have to make any difficult decisions. He took all that away from us.

But we tried to save him. He’d already gone, but we tried to save him. I will never forget the image of watching his Dad giving him CPR while we waited for the ambulance. When he was in hospital and they told us that he’d gone. There was nothing they could do for him. It was the most surreal thing. I stroked him and his skin was so cool, too cool. He’d passed away but I asked the nurse for a blanket. I needed to make him warm and snugly.

A lovely nurse carried him with Samuel’s Dad taking over halfway. We took him to the special end of life suite on the children’s ward. There he was tucked into bed and we cuddled him. We cried and hugged. Each other but also Samuel. The hospital chaplain who we knew came to see us and said some beautiful things. Two of my precious friends came. One to sit with us all day and the other had stopped by the house to pick up Samuel’s knitted bear and his cuddly Wolfy (I carry his knitted bear with me in my handbag and Wolfy is with Samuel in his nest). My parents and sister came to tell Samuel they loved him and to say goodbye. Auntie C who had been with Toby all day, came to visit her Samuel and to take us to Julia’s House before we went home.

We spent the day with him there before the lovely man from the funeral directors came and together with two wonderful nurses, drove him to Julia’s House. Our Julia’s House friends welcomed him and settled him into the bed in the Mermaid Suite. He stayed there until a couple of days before his celebration. They read to him, sang to him and put pictures up in the room of Samuel with us and his hospice friends. He was loved and pampered right to the end!

We visited him a couple of times at Julia’s House, as did one of my best friends and Samuel’s two special carers – his pink ladies. I struggled with visiting him as he still looked like Samuel. Like he’d wake up any moment. The funeral directors had given him a treatment so he could stay at Julia’s House for as long as it was possible. And although I knew he was starting to change, he still looked like my boy.

His celebration was perfect. I will always be pleased with everything we chose for him. It was the last thing we could do for him.

His resting place is perfect too. It’s a woodland burial ground and is so beautiful and peaceful. Just perfect.

Some people have suggested that it was Samuel’s plan. To stick around long enough to meet his little brother and to give us one more birthday. I don’t know. But knowing that there are no longer multiple strong medicines having to go into his little body every day, no more pain, no more seizures. He can finally rest. That is a relief. I do not need to worry about him anymore. The worst has happened. There is nothing to fear now.

We also take comfort in the profound effect he had on people close to us. He broke many hearts when he left. There were people who had their own special relationship with him. They saw his magic. His sparkle. They remember what his hands looked like, how he felt in their arms, the softness of his skin. I’ve been offered counseling but those close to us are my counselors, and besides, I only really want to share my grief with those who knew and loved him. They know what a wonderful boy he was and will always be. They know the enormity of what we’ve lost.

When I was at college I volunteered at a local retirement home and there was a lady in her late 70s who told me about her son who had drowned when he was only eight years old. For all those years, decades since, she said everyday her son was the first thing and the last thing she thought about. ‘From that day to this’, she said, ‘I’ve never lost the ache in my heart’. That old lady will be me. She is me. My heart will always ache for my Samuel Bear.

But he gave us four years. Four birthdays. Four Christmases. And that was more than we dared hope for when he was born.

I wonder if somehow he made sure that his little brother came into our lives before he went. To look after us and to give us purpose. His brother is nearly 16 months now and has saved us. He’s kept us going and kept us smiling.

But we want to always honour Samuel’s memory by celebrating him and making sure that his little brother grows up happy and knows all about his special big brother.

We will always be blessed for having the privilege of being parents to such a wonderful boy. We will always be proud of him. I will always be Samuel’s mum.

Samuel Luke Monk

The bravest bear, the brightest star.

Always in our hearts.


And now if you look at the sky on a clear night, you will see Samuel shining brightly.

Tricky Customer

I love stars. I always have. And then we had Samuel. It became clear pretty quickly that we might lose him. I don’t think the doctors thought he would survive his epilepsy, especially as they were struggling to find the right concoction of medicines to go somewhere near to managing his seizures (it’s impossible to control Samuel’s epilepsy, we just manage his breakthrough (physical) seizures).

Look at the stars, look how they shine for you

There was lots of talk in the early times of ‘family time’ and we were encouraged to enjoy Samuel to the full as his time was expected to be very limited. So I looked to the stars. I remember in those dark early days of looking at the stars and saying to myself that if we did lose him, Samuel would become one of the brightest stars in the sky. Even if he wasn’t here…

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New Year letter

Dear Samuel

Today is the first day of 2015. Today is the first day of a whole year we will spend without you here with us. We miss you so much. The hole you left is very big and very deep. You were just too special, too important to lose and we are still struggling to adjust to our new life without you.

We went to visit your resting place again this morning. Your forever bed. Do you hear us when we talk to you? I know I talk to you a lot anyway, but it feels easier when we go there. It feels like you are there with us. But this morning felt harder than usual. I think not having you with us for Christmas had only just hit us and our hearts were heavy. We need you to give us strength Samuel. Strength to adjust, strength to cope with missing you but to also be the best parents we can be to your little brother.

But you know, those people you gave us, those people you brought into our lives and those whose we already knew but have become closer to us thanks to you, they’ve been wonderful. They talk about you, they miss you with us and they are here holding our hands. But I worry about your Dad. He’s been upset by people who he thought would be here for him but have disappeared. He is also going back to work next week which will be good for him, but will be tough too. He needs you to watch over him. He needs you to send him love and strength. He needs your hands wrapped around his heart.

As we start this new year, I feel rather lost. You were my world for four years. Everything revolved around you. And now you are gone. What do I do? Yes, of course I have little Toby to keep me on my toes, but the hole you have left is enormous. I will probably have to get a job at some point as money will start to get tricky, but at the moment I can’t quite bear the idea of strangers looking after your little brother, so will have to give that some more thought. Hold my hand please Samuel and help me find my new path. I loved being your mum, your carer, your nurse, your PA. It was the best job in the world.

I hope you liked your special celebration and saw just how important you were and always will be. You were always such a special little boy. Even though you couldn’t walk, talk and do things that others could, you really did touch the hearts of so many people. And sometimes I think you were the wisest one amongst us. All that mattered to you was love and cuddles.

When you left us, I think we felt that all we wanted was to be with you. But we have Toby. And I think you played a part in making sure that we had him before you went. He has saved our hearts. He has given us reason and purpose. He is also a wonderful little boy. We can’t wait to tell him more about you as he grows us and help him to understand just want an amazing boy his big brother was and will always be. Please always watch over him and guide him to being the best person he can be. He turns one tomorrow. Can’t believe he will be a whole year old. Today we got him measured for his first proper shoes. He’s walking so much now. If you were still here I bet he’d always be toddling over to you to touch you and lean against you (and stroke your lips!).

Your Dad and I still have our blue glass hearts in our pockets. You have one in your hand too, so you will always have our hearts with you and yours will always be with us. Wherever we are, wherever you are.

Oh Samuel I miss you. I miss your cuddles. I miss the touch of your soft skin. Your squidgy soft hands. Your cute delicate feet. Your beautiful eyes and those incredibly long and dark eyelashes. I miss your soft tummy. Your cute little knees. Your soft, golden hair. Your amazingly cute little nose. I miss that freckle on your bottom. I miss that crease on your thumb. I miss the way you did those big over the top yawns. I miss how you stretched and we said you were doing your Superman stretch. I miss the way you purred when you were cuddled. I miss the sound of you snoring. I miss looking after you. I miss how you fidgeted when I would try to cut your nails. I miss putting your lipsalve on (or your ‘lipstick’ as your Auntie Lou would say). I miss giving you your medicines and putting you on your feed pump. I miss changing your pad and making sure you are fresh and clean. I miss watching your overnight girls fuss over you and pamper you. I miss showering you (although I know you didn’t really like it). I miss getting your bags ready for school. I miss taking photos and videos of you. I miss telling your overnight carers what kind of day you’ve had. I miss reading in your school diary to see what you’ve been up to. I miss having your Julia’s House carers here. I miss holding your hand. I miss talking to the chemist about your prescription. I miss nagging the doctors. I miss making sure we have enough of your pads. I miss washing and ironing your clothes. I miss your P Pod. I miss lying with you on the sofa. I miss watching your carers cuddle you and telling me that that’s their favourite part of their shift. I miss going out with you in your buggy and feeling proud that you are our boy. I miss seeing you with your brother. I miss watching him come up to you and touch you and stroke your lips. I miss getting into your bed with you. I miss making phonecalls and saying, ‘It’s Zoe here, Samuel Monk’s mum’. I miss putting you in your buggy and tucking your dinosaur blanket in around you. I miss giving out your date of birth. I miss seeing you in your Dad’s arms. I miss watching him talk to you about football and be so proud to call you his son. I miss seeing the joy in his face when he would look at you. I miss the van. I miss choosing your clothes and trying to find coordinating socks! I miss talking to the dietician about your weight. I miss texting Auntie Carol and asking her for advice about you. I miss watching the pleasure people took in having a good Samuel cuddle. I miss people telling me how wonderful you are. I miss worrying about you. You see I don’t have to worry about you anymore…

I miss you Samuel. So very much. And I will always love you with every single part of my being.

Mummy x


Christmas wishes

Thank you everyone for your kind messages. It feels impossible to explain how we are doing. We miss Samuel so much. We miss looking at his beautiful blue eyes and long fluttery eyelashes. We miss cuddling up to him and holding his soft, squidgy hands. We miss looking after him. Our world will never be the same again. For the last 4 years our lives were devoted to Samuel. Not only were we his parents, but his nurse and carer too. Caring for him, managing his condition, dealing with professionals, doctors, support services, arranging appointments, organising his equipment etc was a job in itself (the best job in the world). And all that is now gone. All his equipment and even our van, which we had for Samuel, has had to go. You lose a special child like Samuel and the hole left behind is unimaginable.

Everyday our hearts break all over again. But we do have our little ray of sunshine. Toby. Samuel’s little brother is doing all he can to heal our hearts and make us smile. This Christmas will be his first and we are keen to make it as special for him as possible, but it hurts to know that our boys never had one Christmas together. But we will have Samuel’s candle burning at our Christmas table and he will be with us I’m sure. The future feels daunting without Samuel, but we are determined to always remember and celebrate him and to make sure his little brother grows up to know what a wonderful boy his big brother was and will always be.

Please remember Samuel this Christmas and all the brave, special children near and far away who have to endure so much every single day. Remember wonderful places like Julia’s House, who were such a crucial part of our world when Samuel was here and cared and nurtured him after he passed away and continue to hold our hands even now. Remember to give your loved ones an extra squeeze this Christmas and start 2015 remembering what makes this world a wonderful place, Samuel’s two favourite things, love and cuddles.


Goodbye Samuel

This is the hardest post I have ever had to write and it breaks my heart with every word.

On Tuesday 25 November our precious Samuel fell asleep for the last time. He passed away in his sleep at home surrounded by love and cuddles. He is now the brightest star in the sky.

He may have never been able to walk or talk, but he touched the hearts of so many.

We will always love you, our Samuel Bear, you will be in our hearts forever.

Look at the stars, look how they shine for you…


Paraldehyde – the fragrant rescue medicine

Samuel’s rescue medicine has been Midazolam for a very long time. I think most (if not all) of the epilepsy world know about Midazolam. Samuel has had it since the beginning where he was given it several times a day – until his seizure treatment plan was tightened and he wasn’t given it for every single seizure. It’s always worked well. It does the job. If he exceeds his protocol (I will post that on here sometime in case anyone is curious) he gets a sqiurt of the prefilled syringe of Midazolam into his cheek. It generally works. But as Samuel has got older it’s had a more noticeable effect on his breathing and that was why we now have oxygen cylinders at home (and an oxygen protocol).

The other issue with having Midazolam in our armoury is it’s relationship with Clobazam. Now we love Clobazam. It’s been one of Samuel’s epileptic medicines for a long time and it is very effective. He has it twice a day and it is one of his most crucial medicines. But Midaz and Clobazam are almost like sister medicines. Give them too close together and you are at risk of over sedating him (which could effect his breathing), or as they work with the same receptors of the brain, Midazolam can almost dilute Clobazam making it less effective.

Prior to Samuel being admitted to hospital before the summer, he had earned himself Midazolam three days in a row. Not ideal. Think it was a contributing factor to why he got so poorly and had to be admitted.

So this is where Paraldehyde comes in. It was my suggestion to Samuel’s doctor about the possibility of introducing Paraldehyde as either an alternative to or replacement of Midazolam.  Dr H thought it was a good idea (I occasionally do have them) and we agreed that we would trial it to see if we found it effective and it did the job adequately. Well it did, and it is now Samuel’s first rescue medicine (although we will still continue to have a good stock of Midazolam in the cupboard as back up).

Now you might be thinking, ‘why didn’t you have Paraldehyde before given that Midaz is obviously quite a dirty drug?’. Unfortunately you don’t give Paraldeyhyde in quite the same way as Midazolam. It’s given rectally, plus the medicine smells. The moment you open the bottle the room is filled with, let’s just say, a unique smell. Once the bottle has been opened you have to act quickly and fill the syringe (which has a tube attached) and ‘insert’ immediately. You need to be quick as the medicine will block the syringe and wont be useable. On the wards they use to give the medicine in glass syringes but I guess budget cuts and health and safety stopped that and now you’ve just got to use it fast.

It’s not the perfect drug (are any of them?), but it’s the lesser of two evils. Unfortunately given the terrible summer Samuel had I’ve gotten very experienced (and quick) at giving it, so don’t think much of it. The only thing that bugs me about it is the way it makes him smell of it for the next few days. It’s like it fills his pores and makes his breath smell. But it doesn’t stop me going in for a smooch. NOTHING would stop me giving my boy a big fat kiss!

The story of a very brave bear

This blog is the story of one boy. A cuddly bear called Samuel who might just be the bravest person I know.

I’m writing this while sitting here on a blue ‘comfy’ chair (this is as comfortable as you’ll get on the NHS) looking at Samuel lying on a hospital bed hooked up to a SATs monitor, oxygen going up his nose with a cannula in his arm and lots of pin pricks and marks scattered about his little body where he’s been prodded, poked and bled.

Samuel has a chest infection and a bacterial infection. But he’s on the mend, he’s responding really well to treatment and we should hopefully be home within the next couple of days.

Samuel has had an awful year. The first six months saw him have one infection after the other and numerous hospital visits and far too many admissions.

The summer saw him in and out of hospital with horrendous seizures, his epilepsy had got increasingly worse. On a ‘good’ day he was having a rescue medicine at least once a day. It was a clear sign that he his brain has deteriorated.

But through everything he just battles on and trusts that those around him, his Team Sam, will do everything for him and will help him get through.

This has been the hardest year of his life. But he’s a true little fighter.

My Samuel the Bear.


Update: Samuel came home after four days in hospital and is much better.  Thank you to those who sent lovely messages wishes him well. Zoe x