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

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

FAQs

I was reading Little Mamma said‘s blog post about being asked questions about her son’s condition – well actually in this case she was asked outright ‘what’s wrong with him?’

I’ve been asked that about Sam. It was worse when he had his NG tube in because that was stuck on his face and impossible not to be seen. Now it is really when we are out and pump feeding him or when people (who we may know a little, or don’t know at all) stop and chat to us and notice something might be a bit different with Samuel.

I  know people don’t mean any harm or offense. We, as humans, are just terribly flawed when it comes to putting our foot in it. We say things without thinking. People essentially do mean well. If you are reading this thinking that you might have asked a daft question, please please don’t worry about it. But I do wonder though whether I should have a list ready of frequently asked questions to give to people before they come out with their questions.

An example could be, in no particular order:

Question/Comment: Gosh, isn’t he a big boy? My cousin has just had a big baby too. (This is said a lot, but it is because I have to hold Samuel as if he was a little baby because he is unable to support his own head and neck)  Answer: No, not really, he’s just right length and weight actually. He was only 6lb 4oz when he was born.

Question/Comment: Was he a premature baby? How early was he? Answer: He was full term, well one week short of being bang on full term.

Question/Comment: What’s that? (Said after spotting him being gastrostomy fed) Answer: He is having a feed via his gastrostomy button, it goes straight into his tummy.

Question/Comment: Oh, how bizarre (looking very confused), can’t he eat normally then? Answer: He hasn’t got a reliable swallow so all his feed and medicines go through his gastrostomy button.

Question/Comment: Was very sorry to hear about your baby. We’ve been thinking about you a lot but didn’t want to get in touch as didn’t want to bother you. Answer: No need to feel sorry for us, we have our child that we’ve always wanted and who we love very much. He has brought so much joy into our lives.

Question/Comment: What’s wrong with him?  Answer: He has a rare condition that affects the brain, causes severe epilepsy and global development delay. (It’s a funny question because with strangers or people I don’t know very well, how much detail do I go into? So I just mention the epilepsy and special needs in the hope that is enough to satisfy interest but not boring or scaring them with more info than perhaps they needed!)

Question/Comment: Will he grow out of it? Answer: No, unfortunately not.

Question/Comment: Would an operation help? Can they cure his condition. Answer: No unfortunately not. Samuel is missing a part of his brain & has lissencephaly which refers to the smoothness of his brain. This cannot be repaired or cured.

Question/Comment: I don’t think he likes me/is interested in what’s going on/he looks bored. (This is normally said when someone tries to interact with Sam, but Sam just ignores them)  Answer: (I’m never quite sure what to say here) He isn’t ignoring you really, he has special needs so doesn’t realise that you are chatting to him.

Question/Comment: I heard you were visiting the hospice. I didn’t realise things were that bad. Answer: There are a lot of unknowns with Sam’s condition, particularly as it is very rare. But we do know that he has a life limiting condition and that not only means that he is extremely limited in what he will be able to do, it does also mean that how long we have to enjoy him is very limited too. The hospice offers us great emotional and practical support and respite. They also have fantastic facilities and are great at looking after children like Samuel.

Question/Comment: So will you be having more children? Or when do you think you’ll start trying again for another one? Answer: Err, it’s not quite that straightforward and Sam is only 15 months so we will take our time.

Question/Comment: Does he sleep ok at night? Do you have to stay up with him all  night? Do you get to sleep? Answer: We are lucky in that Sam has a drug called Chloral Hydrate that helps him sleep at night. Doesn’t guarantee he will sleep straight through but helps him settle and gives him more of a night and day. He’s on a feeding pump for 10 hours overnight so is bound to do a massive wee nappy which can disturb him so often get up to do one nappy at night. Much like a lot of ‘normal’ parents I imagine.

Question/Comment: You are very brave. I don’t think my husband and I could cope with a disabled/special needs child.  Answer: Yes you could, you are a parent, you love your child and would do anything for them. You would move heaven and earth to help them. We are just like any other good parents who love their child.

Question/Comment: Is it ok to give him a cuddle? Do I need to hold him a special way? I wont hurt him will I? Answer: Cuddling Sam is just like cuddling a big baby. Just hold him close and if he has a seizure then just hold him tight.

Question/Comment: Oh is he having a little laugh? Answer: No, unfortunately he’s just about to have a seizure.

Maybe I should just give them a link to my blog post about how damn perfect my boy is.

Other random comments we get:

• Oh my goodness aren’t his eyelashes amazing, why do boys always get stunning eyelashes?!
• You would never tell anything was wrong with him when he is calm. He just looks so perfect.
• My friends step-son has Downs Syndrome.
• Could I have a cuddle with Sam please as I’ve had a stressful day and need a Samuel cuddle to relax me.
• (Stranger looking at him snoozing or calm in his buggy, normally said when we are in a lift) Ah, sometimes you just want to keep them little like that. Enjoy the peace while you can as they grow up quick and will be running around causing havoc in no time. (My dream would be for Sam to be running around causing havoc!)

But one of my favourite things said to me recently by a stranger has to be, ‘I have to tell you that I think your baby is one of the most beautiful little creatures I’ve ever seen’.

If this post sounds all too familier to you, Kate from The life and Times of Team Kitchen blog wrote a great poem called Staring. Pop over and have a nosey.

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.

Respite to the rescue (part 2)

So the lovely people from the hospice came over for our assessment and to properly meet Sam. As usual there was a million forms to complete, but I’m use to all that and to have to answer a whole lot of questions. I did find it difficult when they would ask whether Samuel likes this or that as it’s hard to tell. We know he likes being held and cuddles. We just accept that he tolerates other stuff – which basically means he doesn’t get upset or the item/activity in question doesn’t start off a seizure!

Anyway, we have our first play session at the hospice this week and I’m really looking forward to it. They said that I’m welcome to stay for the sessions (alot of parents do just to see what happens and how the child responds) or maybe go off somewhere for a coffee. It could be a good opportunity for a break.

They do arts and crafts and even baking with the children and when I enquired as to whether they still do all this with chilren who are very limited like Samuel, the nurses said that they most definately do and I’d have to get use to him coming home with lots of paintings and so on.

There is also a dedicated play lady who devises a special plan for the individual child and she has had some really good results. I actually had a look on their website last night and this lady was mentioned and she sounds marvellous.

The ladies seemed to really understand me, but then I expect they’ve heard my exact same story many times before. They realise that I’m keen to meet other parents so have said that they will put me in touch with some of them and apparantly the parents often arrange trips out and get togethers amongst themselves.

We of course talked about respite in the home. A carer coming here to look after Samuel. If I’m home (apparantly some parents choose to still be at home when carer is over but uses opportunity to have a bath, a snooze or do other things or they just enjoy the company of another adult around) then they will only send one carer but because of Sam’s level of needs if I’m not home then they will send two carers. I still feel a bit strange about having respite in the home, not sure why, but I think that if I start by being involved with the hospice and leaving Sam there, then I’ll get use to the idea of them looking after him at home.

I’ve also decided to stop referring to it as the hospice. I don’t like that phrase. Instead I will refer to them by their name, Julia’s House. I think that is much nicer.

I think becoming involved with Julia’s House could be a real turning point for both Samuel and me. For me it not only gives me the opportunity for a break but also the chance to meet other parents like me and a chance for me to feel normal. For Samuel, well he’s going to have a load of new people to cuddle and adore him. He’ll have more people to help him and bring out the best in him.

I just can’t wait.

Crafting for charity

I am very keen to do something to raise a little bit of money for the hospice that will be helping us. But I’m not going to be doing anything like throwing myself out of a plane, running the marathon or shaving my hair off (although I think people are great and very brave for doing these things), so decided on a much safer option.

As I like doing crafty things, I’m going to make little things that can be sold in the hospice charity shop. Just little things like padded hearts, bunting, decorative clay hearts, lavender stuffed chicks – just pretty decorative things that hopefully people might like to buy.

I told my mum about what I wanted to do and she kindly went and got me these ribbons, which I think are really sweet!

If you have any ideas of simple things I could make, or indeed have any spare unwanted material, dried lavender or ribbon that you would be happy to pass on to me, then please get in touch. Also, if you are a crafty type yourself and would like to contribute some of your lovely things to be sold in the charity shops then I would love to hear from you.

The hospice has a few shops around the county so it would be nice if I could get a few things in each shop.

Respite to the rescue (part 1)

On Friday morning we will have our assessment for respite. At last.

As, rather disappointingly, none of Sam’s grandparents are confident to look after him on their own we only have Auntie C to do the odd bit of a babysitting so think that we really should get respite organised.

Part of why it has taken us so long to get here is totally our fault. You see when we came home from NICU, the Community Nurses (who I’ve not mentioned yet but are very lovely although stretched very thinly) immediately started talking to us about respite and that we should get in touch with our local hospice about it. But we had only just come home with our boy and didn’t want to leave him, didn’t want to share him. It was very bad timing and far too early to nag us about it.

So we ignored it. But then a few months before Christmas I went to an open day at the hospice and fell in love with it. The lady who showed me around (‘Play Co-ordinator’ I think was her job title – what a great sounding job!) was so nice, so kind and really understood where I was coming from. After all she had probably heard my story a million times. The place doesn’t feel like a hospice at all. You’d almost expect it to be very clinical and have something of a sad atmosphere, but not at all. It feels like a children centre, just with the odd oxygen cylinder around and a nurses station! It is bright, colourful and gave me a good, positive, warm feeling.

I’m not really sure yet how we will use respite, but I’m so looking forward to being part of the hospice community. To meet other families similar to us and a place where we can feel ‘normal’ – the only place I expect we can feel normal.

I’m a bit nervous about it but on the other hand think it will be lovely to extend Sam’s team and for him to have new people to cuddle and to flutter is amazing eyelashes at!

I’ll let you know how our assessment goes and when we’ve finally got our foot in the door.