Mermaid

Every time I visit Julia’s House I stop and look at a mermaid. She is outside the entrance in the grounds of the hospice. I always think how contented she looks. I think she’s rather beautiful.

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Team Sam did it!

Kate (who ran 10k) joined us to run for Julia’s House

Well we did it! We completed the Bournemouth 5k Hospice race in one piece and in quite a respectable time. We were joined by our very good friend Kate, who is mum to Zack, one of Samuel’s best friends.

Why did we put ourselves through it? Well we wanted to find some way to thank Julia’s House for all their wonderful love, care and support and hopefully raise a few quid for them too.

Thank you so much to everyone who has sponsored us. If you haven’t already you can still donate, just pop over to http://uk.virginmoneygiving.com/team/Team_Sam

Thank you xxx

Message from Samuel

Hello

My name is Samuel and I need your help. I have a rare genetic condition which causes severe epilepsy and I have many seizures every day. I am severely disabled and despite being almost 2, I’m really just like a little baby. I regularly visit my friends at Julia’s House, Dorset’s Children’s Hospice, to give my Mum a bit of a break but also because I love having play time and cuddles with the lovely nurses and carers.

Mum says that they’ve changed our lives. I think my Mum was feeling a bit lonely and lost before, but since we joined the Julia’s House community we have been overwhelmed with all their kindness and support.

People think that a hospice is just where people go when they are very poorly and are at the end of their illness. But  that isn’t true. To me and my friends, Julia’s House is the best nursery in the world and we are so lucky to have them on our doorstep.

To thank the wonderful people at Julia’s House for all their love and kindness, my  Mum and Dad will be running the Hospice 5k in Bournemouth on 21 October. Mum and Dad aren’t very fit, so I think they are quite nervous, but they are determined to try to cross the finish line in one piece!
Why am I telling you all this? I’m hoping that you, your colleagues, friends and family can dig deep and help children like me and families like ours by sponsoring my Mum and Dad at: http://uk.virginmoneygiving.com/team/Team_Sam

However small your donation, it will go a long way to help Julia’s House continue to do their fantastic work.

Thank you. From the bottom of my heart.

Samuel xx

Please support Team Sam

I’ve mentioned many, many times before just what Julia’s House means to us. They provide endless support to us a family and give so much love and care and cuddles to Samuel. Yes love. I know it is their job, the carers and nurses are paid to care for children like Samuel, but they go above and beyond and show real love to all the children.

We would be lost without Julia’s House now, so we want to do something to show our support and appreciation for everything they do.

Both Samuel’s Dad and I will be running the Hospice 5k in October to raise money for local hospices, including Julia’s House. Neither of us are particularly fit and I’m very nervous about it, but I’m determined to raise as much as we can for our special friends.

But we need your help. So please dig deep and sponsor Team Sam.

From the bottom of our hearts, thank you. x

‘Normal’ for a day

Last weekend we went to our first Julia’s House family BBQ. We weren’t sure what to expect but we knew it would be a good experience for us.

Being honest, truly honest, at first it was a bit daunting. We had never seen so many wheelchairs or special buggies in one place at a time. There was a fantastic turn-out and the place was full of children with all manner of additional needs/medical problems/disabilities etc.

But that feeling literally only lasted a few minutes and as we looked around, we saw what seemed like every other family with a feed pump or some kind of equipment attached to their wheelchair. We smiled to each other and my husband said: ‘at last we are normal!’.

No one batted an eyelid at us. No one stared. No one wondered. No one stood looking awkwardly at Samuel wondering if perhaps something wasn’t quite right. No one patronised us, felt sorry for us, told us how brave we were or asked awkward questions. Everyone just got on enjoying themselves (and trying to keep track of the more mobile children!).

I’m starting to get to know more Mum’s from Julia’s House so of course it was wonderful to see them and have a good old natter about all the things that are part of our everyday life – gastrostomy buttons, therapists, seizures, ketogenic diet and so on.

It was also lovely to see the carers and nurses there too, who all took the time to come around and chat with the families and children. Quite often I’d look up to see one of Sam’s carers or nurses holding his hand and chatting to him.

There were fun activities for all the children and their siblings – bouncy castle, craft tent, music, a pet corner (I believe a snake was available for ‘cuddles’), play sessions with the Play Maker, face painting, BBQ, ice cream and to end the day there was an amazing (and brave) fire display.

This wasn’t a fundraising event for Julia’s House. They organise this every year for families to get together and just enjoy themselves and enjoy being part of a very special community. I think Samuel, his Dad and I fell in love with Julia’s House all over again that day.

James is the cousin of Sam’s Dad and is climbing Kilimanjaro to raise money for Julia’s House to help them continue all the wonderful things they do. If you’d like to support Julia’s House and what they do for children like Samuel and families like ours. You can sponsor James at: justgiving.com/James-Day1

To find out more about the wonderful work Julia’s House does watch this video.

God save our NHS

I talk a lot about Team Sam. Team Sam is headed up by, well Samuel of course, and consists of not only his Dad and I, but all the people who love and care for him – that includes Julia’s House who look after him and his therapists and doctors who oversee his care.

But I must say one massive component in Team Sam, I mean without it we wouldn’t be able to do what we do so easily, is our old faithful NHS.

Hopefully during our lives most of us will only have to rely on the NHS a few times and for only minor things. We, however, are so reliant on the NHS for everything. As a family our biggest financial cost of having Samuel was me having to give up work. When I was pregnant our intention was for me to go back part-time, whether that was for three or four days (we were still negotiating that right up until his arrival). But we soon realised that there was no option and I was to  give up work and be his carer.

But wow, Samuel must cost the NHS a pretty penny. Off the top of my head they pay for:

  • All his medicines (and don’t forget he has quite a few and I have been reliably informed by my local chemist that they aren’t cheap)
  • Ketogenic formula
  • Pump equipment and bits and bobs
  • Gastrostomy care and related bits and bobs
  • Syringes
  • Various therapies including hydrotherapy and physiotherapy
  • Special buggy
  • Special tumble form seat
  • Special high chair
  • EEGs (recording of electrical activity in the brain)
  • Stuff to test Samuel’s blood ketones and glucose – monitor, lancers and the test strips (one box of 10 ketone strips costs £30 & we use two a day)
  • Paedetrician, Neurologist, Genetics, Child Development, Community Nurse, Speech and Language Therapist, Dietician
  • Treatment and care when admitted as an inpatient (although Samuel has only been admitted once as an emergency patient since coming out of NICU)

I know I’ve forgotten a number of things but I think you get the idea. Anyway, the fantastic NHS pays for all of that. Its all free. We don’t have to have special medical or health insurance. We just get it all because we live in England. I love the NHS. The NHS has helped our little lad defy the odds.

One of Samuel’s best friends Liam lives in America. They don’t have the NHS like us and his Mum and Dad have to worry about medical and health insurance. I think they may not even be covered for Liam starting the Ketogenic Diet which we can’t even imagine happening here. I must admit that I do feel guilty about how lucky we are and it makes me feel all the more grateful.

So to you NHS here is a massive thank you from Samuel, our family and also all the families in this country who benefit like we do.

And so a message to Mr Cameron. The NHS is vital for children like Samuel and without our free medical care, I can’t even imagine what we’d do and the effect it would have on Samuel. Would it mean that we’d have to make certain choices as to which therapies, or worse, which medicines he could have because we, or our insurance company, would be paying and couldn’t afford (or wouldn’t pay out) for certain things? Would we have to look at cheaper alternatives for some of Samuel’s care and treatment? Hands off our NHS Mr Cameron, I’m warning you.

Your friend Samuel

Samuel is a bit different to your other friends. In our heads we have brains which are very clever, like computers, which help us to do all the amazing things we can do like walking, talking, eating and playing. But Samuel’s brain is missing a piece. If you think of our brains as a jigsaw puzzle, Samuel’s is missing a puzzle piece and because of this there are a few things that he cannot do.

Samuel doesn’t chat or play like you or I. If you go up to him and say hello, he wont say hello back, smile at you or look at your toys. He’s not being rude, it’s just simple things like that are very difficult for him. Samuel cannot walk, but he can still go out and about by being pushed around in his special buggy.

If you met Samuel you might notice that he doesn’t eat food like you or I. He doesn’t drink or eat with his mouth. Samuel’s food looks a bit like a milkshake and he has it through a special button on his tummy. Samuel’s Mummy and Daddy attach a little tube to the button and the milkshake goes through the tube into his tummy. The button doesn’t hurt and all Samuel can feel is the nice milkshake filling up his tummy.

Samuel often visits his friends at Julia’s House. Julia’s House is a bit like a special nursery for children that might be poorly or need some extra special help. When he is there he spends a lot of time being cuddled by some of the grown ups who look after him. Playing with Samuel is a bit different too, the grown ups might ring some noisy bells for him to listen to or they might show him some nice pictures. At Julia’s House the children do arts and crafts, baking or if the weather is nice they might use the swing in the garden. There are always lots of fun things to do. Samuel has even helped to make cookies and make his Mummy a Mothers Day card.

Samuel is sometimes a little bit poorly. You might notice him making funny jerky movements or his legs and arms go in funny positions, but don’t worry, he’s ok. Sometimes his Mummy and Daddy give him medicines which make him feel much better.

Samuel can’t play or chat to you like other children. But he can still be your friend. Just hold his hand and chat to him or show him how your toys work. If he doesn’t look at you, don’t worry because he probably is listening and he does like to hear noises and people talking.

Samuel is a bit different to your other friends, but he can still be your friend.

Dreams

This is my second attempt at writing this blog post. I found what I was going to say too hard to write. It was about a dream I’d had. The dream was about Samuel. A fine and healthy Samuel. No ARX. No epilepsy. Just a fine and healthy 19 month old boy doing normal 19 month old things. That first post was going to tell you in detail about the dream. That I went into his room in the morning and there he was smiling at me, asking to be picked up. I watched him eat and enjoy his breakfast, even ask for me. We went to the park and played on the swings. He said Mummy.

It was one of those blog posts that squeezes your heart with every word. But what was the point of me repeating to myself every single acute detail of that dream? It wasn’t true. It wasn’t real. I will never wake up and find this rollercoaster has been a dream. This is real.

But it made me think about what I wouldn’t have if it was a dream.

  • We wouldn’t have the bond we have with Auntie C.
  • I’d be back at work. I wouldn’t get to see my precious boy every single day.
  • I wouldn’t have the friendship I do with the amazing mums I met in NICU.
  • I wouldn’t know Julia’s House and just what a fantastic place it is. I wouldn’t appreciate just how full of love it is and I wouldn’t have met all the lovely carers and nurses.
  • However much I would have loved Samuel, I probably wouldn’t have appreciated him the way I do. I may not have realised just how precious life is and how vulnerable it is.
  • Samuel has brought out peoples true colours. Although they’ve always been wonderful, my existing friendships, particularly with Sam’s Godmother T, wouldn’t be as they are now. I’ve leant on T. I’ve needed her and she’s delivered. With bells on.
  • I wouldn’t have made the lovely friendships I’ve got with other local mums of children with disabilities, who are extraordianary strong and just simply brilliant women.
  • I wouldn’t be person I am now. Samuel has brought out the best in me. I am patient. I am kind. I am compassionate. I can see beyond the condition, the disability, the tubes, machines and scars and see the person that is there.
  • If I hadn’t found myself in this new world, I may never have opened my twitter account. I may never have started a blog. You wouldn’t know me and Samuel and I wouldn’t know all the absolutely amazing people who I’ve met through twitter and blogs.

Don’t get me wrong, of course I’m not denying that I would not exchange everything I own, every limb of mine, for a miracle. But that isn’t going to happen. So why dwell on the what could have been as it will never be? Just enjoy the here and now and realise how lucky we all are.

Julia’s House article: Samuel

Article written by Sally Rowe and published in the Julia’s House newletter and online at juliashouse.org

Meet the children: Samuel

“You know that holiday advert on TV where the family are made to feel like VIPs – well that’s how I feel when I take Samuel to Julia’s House.”

Zoë and her son are new to Julia’s House and her enthusiasm for it bubbles over: “I love it, love it love it! It feels so good, it IS like being on holiday.”

This ‘mini break’ Julia’s House-style means a breather from the endless slog of caring for a really poorly little boy, but more than that, the chance to be among people who just know how hard it is to find that elusive normality when your world has been tipped upside down.
Samuel has a rare genetic condition which has affected the development and formation of his brain. “It is smooth where it should be ridged and he is missing his corpus callosum, which links the two sides of his brain.”

The physical and – to outsiders – disturbing side effect of which is Samuel’s extreme seizures.

Snuggled in the crook of his mum’s arm, he looks very content. But this peaceful scene is shattered, with alarming regularity, by fits – some barely registering on the richter scale of epilepsy: a slight twitching of the eye, a flick of the head. Others go on and on, to the point where they need monitoring or he needs to be given his emergency medication.

“Samuel, come on, do I need to start counting?” Zoë talks gently, yet firmly, when, as if on cue, his body stiffens as it is wracked by stronger spasms. “Sometimes he has very good days, sometimes very bad days and everything in between.”

There is little Zoë can do apart from hugging Samuel just that bit closer as he rides out this horrible internal storm.

“The Julia’s House staff couldn’t believe it when they saw that his care plan actually includes hugging,” she laughs, “it’s true, cuddling is actually part of his protocol!

“It makes him feel safe, and also, it helps me judge his fits better when I’m holding him. The doctor’s call it ‘containment’ – I call it cuddling!”
Samuel is utterly irresistible. With his soft golden curls, big blue eyes and long, long curly eyelashes, he is really handsome boy and as such, attracts a lot of attention when out with Zoë and her husband, Chris.
“People think he’s just a very big baby, but that’s because developmentally he is, but he’s actually 17 months old.

“They say things like, ‘enjoy him now, you just wait ’til he starts toddling and getting into everything’. It’s hard to explain that this isn’t going to happen, so it’s best just to say nothing.”

“We can feel normal when we go there. The staff have seen it all before. They are so wonderful, so welcoming, so lovely. Nothing fazes them.

Harder still, though, is when people do know the situation, but find it difficult, or embarrassing to put their feelings into words.

“People sometimes say to me ‘I’m so sorry to hear about your baby’.
Zoë is indignant: “It sounds so terrible – he’s not dead!

“We don’t feel sorry. We feel thankful. Some people can’t have children at all, but we’ve got Samuel. He brings so much joy, he has really brightened our lives.

“That doesn’t mean to say he doesn’t break our hearts now and again, but we love him to bits.”

Zoë is very animated when it comes to people’s attitudes towards Samuel. “We wish he wasn’t ill, but we don’t wish we didn’t have him.”

Samuel is all the more precious because he could well be the only child the couple ever have. For in the course of all the post-natal tests to determine the cause of his seizures it was discovered that Zoë , in some cruel chromosomal version of Russian roulette, had passed on rare gene mutation to her son.

His condition – ARX or Aristaless Related Homeobox – is passed on mother to son.

It’s so rare, that apart from the outward signs apparent in his epilepsy, no-one really knows for sure what is going on in his head.

“It was devastating to think that I was responsible for Samuel being so poorly. The doctor’s say he could be having fits all the time in his brain that we are unaware of, which really upsets me.”

A pregnancy scan had revealed that Samuel had swollen ventricles and excess fluid on the brain. Doctor’s started talking about learning difficulties.

Samuel spent lots of time in neonatal intensive care where they were given a lot of support “by the NICU angels”. But while there, the couple were told to prepare themselves for the worst. “They basically said: ‘be prepared for the possibility that you may never be able to take him home.”

Yet despite the fact he has little more development than that of a six-week-old baby – he can’t hold his own head up, for instance – it’s not thought that his condition is deteriorating.

Zoë knows that as he gets bigger, it won’t just be his beautiful looks that draw attention and she is braced for more questions, more inquiring stares.

Which is why there is much comfort in finding a place where Samuel can be accepted, welcomed, enjoyed for what he is, not judged for what he isn’t.

Zoë believes she has found that in Julia’s House.

“We can feel normal when we go there. The staff have seen it all before. They are so wonderful, so welcoming, so lovely. Nothing fazes them.
“I was daunted about my first visit, but the reaction of all the carers was fantastic. They were genuinely excited by a new child arriving. They got down on Samuel’s level and spoke to him.

“They were even vying with each other over whose turn it was to give Samuel a cuddle and when he had a seizure it didn’t scare them. They took it all in their stride.

“And all the time, those little gentle touches to reassure Samuel. Tiny gestures that only a mother would notice.”
“When I walked out of there I felt like a proud mother – and that means the world.”

To find out more about Julia’s House and the amazing work they do for children like Samuel and families like ours, visit www.juliashouse.org where you can also make a donation.

Play time

As you may imagine, playing with Samuel is different to playing with other children. All the toys he has have a purpose. They light up or sound or have a certain texture. The techniques we use to play with Sam are of course different too. Play is deliberate and very important for his development.

At Julia’s House, Samuel’s hospice, there is a lady called Sue who is the play therapist. She works with all the children and whatever their disability and condition, she devises a special individual play plan for each child.

Now before I go on I’m a bit of a fan of Sue’s. Not only is she fantastic at what she does and wonderful with Samuel, she’s great to chat to and just seems so in tune with everything and she just makes you believe that anything is possible.

Thanks to Sue we’ve already had a mini break through with Sam which I noted in ‘star of the week‘ and she’s really encouraged us and inspired us with different play techniques.

Sue, the play therapist,very kindly gave us this toy which plays the ‘Twinkle Twinkle’ tune.

This week Sue gave me song which she had written for Samuel to be sung to the tune of Twinkle Twinkle Little Star. Samuel’s Dad will of course change it to Daddy when he sings:

Samuel, Samuel I love you,

Yes, oh yes, oh yes I do.

I’m your Mummy, I love you,

Yes, oh yes, oh yes I do.

Samuel, Samuel, I love you,

Yes, oh yes, oh yes I do.

Sue has suggested that whenever I sing it to Samuel I should lay on the floor with him, or cuddled up to him on the sofa. As we go on, we will use hand bells to make a sound every time we sing Samuel’s name to reinforce that this song is for him.

I will let you know how we get on. I may even post a video sometime of us playing and singing the song. Maybe.

Julia’s House

As regular readers will know, Samuel now goes regularly to Julia’s House, our local chidlren’s hospice. I can’t tell you how wonderful the place is, it really is a special place, a happy place. It’s important for me that you understand what Julia’s House is about. It isn’t just about children who are near the end, it’s for children who just need extra help and care.

This is a film you will find on the Julia’s House website. Please take a moment and watch it:

For more information about Julia’s House please visit www.juliashouse.org

Star of the week

Today, for five times in a row, my gorgeous son looked at an object for three whole seconds. The Julia’s House Playmaker and Sam’s carer saw him do it too. I’m one very proud mum.

Running for Sam and friends

My dear twitter friend @mrsaimeehorton is running the Lincoln 10k for Sam’s friends Julia’s House. Julia’s House provides respite care and support to children with life-limiting and life-threatening conditions and their families through a dedicated team of community carers, nurses and other professionals working within the families own homes or at Julia’s House.

Samuel visits Julia’s House regularly where they not only provide excellent care, but they provide fantastic play sessions, but also things like arts and crafts in a really lovely homely enviornment. It really is a happy place. For me, they provide amazing support, respite opportunities and through them I’ve already met some other mums who have been a great source of support and information.

I know that we are regularly asked to donate to worthy causes, but if you have been reading this blog for a while, I hope you will have come to know what an amazing boy Samuel is and just what Julia’s House means to us.

Please Sponsor Aimee here

And to my dear friend Aimee, thank you from the bottom of our hearts. x

Early days

Well we’ve had four sessions now at Julia’s House and I do really feel that bringing them into our lives is certainly going to be really positive for us.

For three of those days Samuel slept for most of the day (which he is doing now as I write) so the carers didn’t really have a chance to play with him. One of the sessions he was much more awake, but very unsettled with some bigish seizures thrown in, so we didn’t think he was in the right mood for play time.

But I do think they are getting to know him. The only problem is (and I need to keep reminding myself that it is still early days) that to be able to leave him with them, they need to see and understand which of his seizures we medicate and which we just cuddle him through.

There is a protocol, which is a good protocol, but when it comes down to it, it isn’t helpful for a child like Sam who has a lot of seizures. So the protocol says to medicate when he’s been having a seizure for 10 minutes. The problem is, Samuel has a lot of seizures. When he’s twitching, that is actually a seizure. So there are some things he does that we don’t medicate, that we just have to overlook.

There are some seizures, even though he’d been doing it for several minutes, where I would just scoop him up onto the sofa with me and we’d cuddle for however long he needed. It wasn’t a seizure that particularly would worry me and in fact in our language at home we’d probably say that he was unsettled and having a bit of a fuss.

Apart from leaving him with Auntie C a few times for no longer than a couple of hours, I’ve never left Samuel since he came home from hospital. It has always been his dad or I with him (mainly me). I’ve never had to explain it before in quite such detail. This is different to when I’m discussing Sam’s condition and seizures to his doctors. This is so I can leave him confident that his new carers understand when to get the Midazolam out and when just to give him a good squeeze.

Because Julia’s House are booked up with training over the next couple of weeks, we’ve not got a session again until next month. But I’ve got a plan. With the use of our little video camera, I’m going to film Samuel to show what we do medicate and what we just cuddle through. I think this might help me show the nurses and carers because I have found it really quite difficult to explain and worry that I’ll just never be able to articulate it correctly. But I keep reminding myself, it’s still early days.

They are more than happy for me to stay with Samuel when he has his sessions and I can go off into another room and have a read or a coffee if I want some space. But I like being around the carers and seeing the other children play (I could write a whole post about how adorable the other children are) and watching people chat to Samuel and admire his gorgeousness.

They make me feel normal.

It is so nice to be around people who will chat and cuddle Samuel and aren’t put off by him not obviously reacting to them. They stroke his hand and chat to him about what the weather is like, what the other children are doing, they tell him that they like his shoes and his new jumper. They hold him tightly when he has a seizure and tell him that it will be alright, he will be ok. Very quickly they have become Samuel’s friends.

I know we’ll get there in time. After all, it’s still early days.

 

Related posts:

New chapter

You know the advert where the family have booked a package, all-inclusive foreign holiday and throughout their journey right up to and including arriving at the hotel they are treated like VIPs?

Well I had that feeling today. That lovely fuzzy feeling where everyone is so very pleased you are there and they’ve been really looking forward to meet you.

But we weren’t on holiday, we were at Julia’s House. It was our very first session there this morning and it was wonderful. When we came in all the carers and nurses appeared and said hello and were keen to meet Samuel (and I). I kept hearing, ‘Oh is this the lovely Samuel, can I give him a cuddle?’. The whole morning session was spent with him being cuddled by different people who were all just so lovely.

The place does not at all feel like a hospice. It is very warm and homely and the bedrooms are really cute and cosy. We were given a quick tour and then I was made a lovely cup of tea and sat down with a lady called Pam who will be one of Sam’s carers and we just had a lovely chat about Samuel and our world. I think most if not all of what I said she had heard before which I found very comforting. We also met Ashley who will be another one of Sam’s carers, he was very sweet with him and didn’t seem to mind when Sam farted and burped on him which I thought was a good sign!

There were a couple of other children there (who were very sweet) whose parents weren’t there and I was interested to watch the nurses and carers play and interact with them. They were really kind and made a huge effort to make things fun and interesting.

Even very limited children like Samuel get involved with arts, crafts, baking (!), gardening and all sorts. I’ve been warned that my fridge will soon be covered in pictures made by Samuel. There is a fantastic play lady too who gets really involved and puts together an individual play plan for the child, I just hope that Sam doesn’t sleep through his play dates with her!

It was so nice to see them enjoy Samuel and take pleasure in cuddles with him (his cuddles are fantastic I must say). The lead nurse even said about how cuddles were part of his emergency care plan which she’s not come across before, but thought was fantastic.

I was only there for about three and a half hours but I could hear a little voice in my head say ‘Yes I trust these people, I really do.’

My only reason why I feel that it may take a few sessions before I’m happy to leave him there on his own is because I want to feel that they do completely understand his seizures (as much as anyone can understand his seizures!) and I’m confident that they know when to medicate and when just to cuddle him.

But I can’t explain the feeling I had in my chest as we left.

For quite a while I’ve very much wanted to be part of the Julia’s House community, to meet other parents like us, to be part of a world where we are normal. A world where there isn’t anything we say, or anything that Samuel does that is particularly surprising or unusual. Just normal. Our normal.

But above all, the most important, significant feeling I have is that they will really help us get the best out of Samuel and will definitely be a big part of our world.

This is the start of an exciting new chapter in the adventures of Samuel Luke.