Stars

trickycustomer:

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

Originally posted on 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.

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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

New wheels

In December we took ownership of a new van. I say ‘we’, it’s actually Samuel’s van. As he’s such a big boy now and having to dismantle his chair to put in the boot, then take it out put together, then lift him out his car seat and strap him in his chair, was becoming increasingly difficult and awkward and with the prospect of Samuel having a new little brother on the horizon, we decided a wheelchair accessible vehicle was the answer.

So we now have a VW Caddy Maxi Life. And we love it. We wheel Samuel into the back in his (Stingray) chair and then hook his chair up and then when we are at our destination, we just pull down the ramp and unhook his chair and wheel him out. It is so much better! We can fit the frame for Toby’s pram alongside Samuel’s chair in the back and the boys’ bits and bobs.

I was really quite nervous about driving (and parking) it to start with, but I’m so use to it now I can’t imagine driving anything else.

The only problem we (or I) have is that it doesn’t have a name. ALL our cars have had names (my old car was called ‘Fiona’ and Sam’s Dad’s car is called ‘Gary’) but not sure yet what to call this, so far we just refer to it as ‘the van’. So suggestions welcomed!

 

car

Samuel’s Pad

bedroomIn January this year, work started on converting our garage into a new bedroom and wetroom for Samuel. As you can imagine, carrying Samuel up and down the stairs was becoming increasingly difficult and unsafe. He’s a big boy now, plus when he is very twitchy or having a seizure, the steep stairs is a dangerous place to be carrying him.

The timing of the start of the building work wasn’t ideal. I came home from hospital with the baby on the Saturday and work began on the following Monday. But it was well worth it! His new bedroom has been wonderful. We no longer have to try to carry him up and down the stairs, he has a wetroom (which has a shower area, sink and toilet) where we can shower him in his shower chair. Plus we have overnight care now and it’s been great for that too.

It’s made such a positive change to us all, we are still so delighted with it. It’s a very small bedroom of course but it has everything he needs.

 

School boy Sam

A few weeks before Christmas last year, Samuel started school. Yes, my boy is a school boy now!

As you might expect it’s a specialist school which offers Samuel fantastic medical support but in a school environment where he takes part in all sorts of activities from sensory play, songs (there is lots of singing in his class), stories, crafting (Samuel’s school seem to like to use A LOT of glitter!) to baking (although we never saw the shortbread he helped to make as they got burnt in the oven!).

elfThe school put on a fantastic little Christmas play which was really fun to watch. And although he didn’t have a starring role, Samuel did fulfill a very important role on the stage as an elf. Samuel the Elf.

But there is so much more to Samuel’s school than that. He now has weekly hydrotherapy sessions which he finds very relaxing, very regular physio, an occupational therapist who adjusts his special buggy when required plus finds the best equipment and seating that is appropriate for his needs, plus there are speech and language therapists who work with him on communication and sensory play.

To be honest I could go on and on about Samuel’s school. I absolutely love it. It is such a wonderful place and perfect for Samuel. Plus, although they do work the children hard (even those who try to avoid work by going to sleep), there is still plenty of cuddles given out.

The nursing team are wonderful too and very quickly seemed to understand Samuel and his epilepsy (well as much as anyone can). They aren’t fazed by him at all and do everything they can to make sure he’s content and comfortable every day.

Unfortunately though, Samuel’s attendance has not been great. Perhaps it has been because of being in a new environment, but Samuel has been catching quite a lot of bugs and developed infections since the start of the year. I started referring to him to his teacher as ‘Sicknote’! But when he’s in school they look after him really well and do so much with him.

He’s even been awarded two certificates which were given to him by the Principal during assembly.

And you know, there was a time that we never dared dream of Samuel going to school. Who would have thought that a child as complex as Samuel would be going to school four days a week?! But here he is going to school on his own on the minibus (he travels with two Passenger Assistants) like a big boy.

I can’t tell you just how proud we are of our special, brave and gorgeous little boy.

Stars

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 with us on earth, he would always be shining above us in the sky. And that made me love stars even more. I thought that as long as there were stars in the sky, Samuel will always be with us. Forever.

Yeah we all shine on, like the moon and the stars and the sun

Samuel will always be our star.

 

Looking for rainbows

I’ve been wanting to pick up the laptop and log on to the blog and write a post for ages. For such a long time.  But the longer I left it the harder it felt to get back into it. But I want to get back to the blog. I want to tell you about my boy Samuel and how he’s getting along. It suddenly dawned on me that you might forget about him if I don’t keep telling you about him and what a wonderful boy he is. I am so proud of him and I want to share that pride with you.

But these last six months have been tricky. Very tricky. They’ve been wonderful too as we now have our little Toby, our ray of Sam blogsunshine. But for Samuel they’ve been incredibly tricky. He’s had infection after infection and so far this year three hospital admissions. I know for a child like Samuel you might think that three isn’t very much, but for him it is (these three hospital admissions don’t include the numerous times this year that we’ve had to take him into the assessment ward to be checked out etc). For a long time we’ve got away with so much. Epilepsy aside, he was doing really well. His overall health was really good and we had no other concerns. Now we worry constantly about the next chest infection, we have to monitor his breathing more closely and he just feels even more vulnerable than he did before.

These last six months have been the worst six months of Samuel’s life. If it wasn’t for Toby we would already write off this year. But we can’t. We have so much to be thankful for. Toby has brought so much sunshine into our lives and he’s reminded us to look for rainbows after the rain. Plus Samuel still continues to be the most beautiful, wonderful boy who we adore with all our hearts. He brings so much pleasure to us and is worth all the worry and stress. He is our cuddly Bear. Our star.

There is so much I want to tell you and I will I promise.

Introducing Toby….

A very big belated Happy New Year to all readers and Sam fans. Sorry that this blog has been awol for some time, but we are hopefully back and can keep you updated to what’s been going on here.

Well 2014 couldn’t have started any better for us. Samuel became a big brother! His little brother Toby was born on 2 January.

TobyToby is a sweetie and we are really enjoying him (although exhausted!). Not sure whether Samuel is that impressed with having a squawking little thing in the house, but I think he’s enjoying his share of cuddles with all the visitors who’ve been popping by to see his little brother.

Toby is a very different baby to what Samuel was, as you might be able to imagine, so we are Sam and toby1learning A LOT! We’ve been very lucky though to have fantastically supportive people around who have just been wonderful (particularly Auntie C who continues to be amazing with her continued love, support and brilliant advice!) .

We are feeling so very blessed to have our wonderful little family.

From all of us at Team Sam headquarters, we wish you all a very happy and very healthy 2014. x