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.

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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.

Angel in trainers

I’ve mentioned before about my cyber friends and how they have become increasingly important to me. I am lucky enough to have a group of online friends who fall over themselves to be there for me, to be as supportive as they can, even if they live the other side of the country, the other side of the world.

Not all of them are parents of children with special needs, but I still find great comfort and support in them nonetheless. But recently one online friend has really astounded me. I have never had the privledge of meeting Aimee, although I would like to so very much. We’ve never met, she’s never cuddled Samuel but for him she ran 10k.

Aimee's medal

This weekend Aimee ran the Lincoln 10k because, well she must be a bit bonkers and tremendously fit, but because she wanted to do it for Sam. Aimee wanted to do something to directly help Sam, so she raised money for his hospice Julia’s House which he visits each week but also has carers come out to our home regularly, to provide care and play with him here to give me a break (and for them to have Sam cuddles without other distractions!). I’ve sat in on a handful of sessions at the hospice and been lucky enough to meet some of the other amazing children who go there. Each and every one of them has their own cruel and painful battle to fight every single day and Julia’s House brings them so much pleasure and fun, it’s lovely to see first hand.

At the time I’m writing this post, Aimee has raised an amazing £270. Some of this money we’ve donated along with Sam’s Grandparents, but the large majority came from Aimee‘s friends and people that are part of our online community. People Samuel and I haven’t met and unfortunately may never do. If you are reading this and are one of the generous people who have kindly donated, thank you, thank you all so very much.

And to Aimee,  I can’t put it into words how we feel about what you have done. But all I can say is that we thank you Aimee from the bottom of our hearts.

You can still donate at Aimee’s Just Giving page

Team Sam (#teamsam)

While we were in NICU I began to realise that we would have a lot of new people in our lives as time went on. And we definitely do. Team Sam seems to be rapidly growing.

But I don’t mean our close friends or family who have been fantastic. The grandparents, my sister, our dear friends Auntie C and Auntie T (Sam’s Godmothers), the other NICU mums who I’ve grown very close to, my former workmate K who is very dear to me, they are all great.

I also have great support from my online friends such as: @pressuresupport, @kjo6, @MyLittleHam, @Limmster, @mrsaimeehorton, @rachellwilliams, @innocentcharmer, @racheljeffares, @hayley_pelham16, @motherventing, @jordanfleet, @katekit01, @MrsCMonkey, @vickytervit, @h0pefulmummy, @jowonderwoman to name just a few.

But I’m talking about Team Sam: The Professionals.

Those who have been involved along the way since Samuel arrived include:

  • NICU nurses and doctors
  • Speech & Language Therapist (don’t be confused, she covers things like swallow etc)
  • Dietician
  • Community Nurses (we don’t see them that often though now)
  • Health Visitor (She occasionally pops over for a chat and a cuddle with Sam)
  • Physiotherapist and Occupational Therapist
  • Neurologist
  • Paeditirician
  • Genetics doctor
  • Child Development doctor
  • Surgeon (who preformed Sam’s gastrostomy operation and reviews testes situation)
  • Audiologist (for Sam’s hearing)
  • Play Development Worker from Portage (Early Years service)
  • Carers and nurses at Julia’s House
  • Play Maker from Julia’s House
  • Consultant in ophthalmology (for Sam’s eyesight)

To some people this may seem a very long list, to others a drop in the ocean, but they are all part of our team. Although they may occasionally frustrate me, they are all in Samuel’s corner, working so very hard for him.

Oh and I must not forget the big man, the guy in the sky, who, if he is around as I hope, he’s here on Sam’s team with the rest of us.

Thank you to everyone on Team Sam. I think all of us together makes one formidable team!

Team Sam! #teamsam

For Charlie

I know we are continously being asked to donate to charity or to sponsor someone, but I’d really appreciate it if you could just take a few minutes and read this page.

My school friend Katie lost her beautiful baby boy Charlie Ethan, who was sadly born asleep, last year on 29 June 2011.

This was obviously an incredibly difficult time for Katie and her husband Graham but one that was made more bearable by the doctors and midwives at the hospital.

The hospital are trying to raise funds to introduce a Baby Bereavement Suite at the hospital which will be used by families such as Charlie’s. This will mean that families in the same situation will be cared for in a private, quiet room giving parents space and privacy.

Such events are very personal and private times and this facility would help families like Charlie’s to continue to be cared for in privacy.

This is an amazing cause and one that is obviously very close to many peoples hearts. Please dig deep and give what you can (if you cannot donate now please click on the “remind me to donate later” button).

If you are able to donate or would like more information, please visit: www.justgiving.com/CharlieEthanSimpson

A gift to help others in Charlie’s memory.

Thank you. x

Meet the gang

Samuel likes to hang out with some special friends at home.

Edgar and Max hang out with Sam in his nest downstairs. Edgar was given to him by his Auntie T and Max was given to Sam by Auntie C when he was in hospital having his gastrostomy to keep him company.

Grannie Bear was knitted for Sam by, well yes you’ve guessed it, his Grannie and she looked after him when he was in his cot in NICU. Grannie Bear stays up in his cot (also known as The Cottage) and looks after it for when he comes up at bedtime.

Sam and The Gang.The coolest gang around.

Sam with Edgar and Max

Sam with his boys: Edgar (the elephant) and Max (the dog)

Sam with Grannie Bear (in NICU)

On days like these…

Today has been a bit of a frustrating day. It started with me complaining to the manager of our doctors surgery for their continued incompetence with dealing with the boy’s prescriptions. If it wasn’t for the adjacent chemist who have simply been amazing we’d have found ourselves in trouble a number of times.

Because of the strict use-by dates on his medicines we can’t order them too early or we will end up wasting a lot of the medicine to then go on the new bottle. But I always give us and the surgery plenty of time to process the request. But more often than not they make a mistake. They either lose the prescription request (“sorry it’s been left in the drawer” or “sorry it had fallen through the tray and we hadn’t noticed” or just “we don’t know what’s happened to it”), or they change what I’ve requested and put through a request for a medicine that Sam no longer has – thankfully the chemist queried it as he hadn’t had the medicine in quite a while. A number of times we’ve been told that the form was in the pile about to be taken over to the chemist but then I speak to them next day and it hasn’t even been signed off by the doctor! Aaaarrghh!

Anyway, I called the manager, found myself angry one minute then quite emotional, particularly as I said that these weren’t just vitamins, these medicines stop him having a seizure that could kill him.

Then I had a really annoying appointment at the hospital. It wasn’t to do with Sam’s head or seizures in fact it was to do with the other end. When he had his gastrostomy operation they dropped one of his testes but decided not to do the other. They are now talking about doing the other one. I’m not keen. He wees just fine and I really aren’t keen on him having an operation at the moment (especially as we’ve just got over a series of bugs) and will it really make a difference?

The surgeon we met today hadn’t met us before. Had probably only seen Sam’s notes briefly before our appointment. He didn’t understand Sam’s condition. I had to explain. I had to explain Sam’s life expectancy and whether he is expected to reach his teenage years. Bearing in mind 50% of children with Sam’s condition don’t reach one year old, the answer is unlikely. I had to go over this stuff with him more than once. I asked him to go back and discuss this with Samuel’s Neurologist and then come back to me as they are the medical experts. This chaps colleague (who did the previous surgery on Samuel but had been called away today) actually shares an office with Samuel’s Neurologist so the phrase ‘get a room and discuss’ seems a bit daft. Anyway, I was pretty hacked off.

(By the way the surgeon told me right at the end of the appointment that there is a slight risk that if the other testical isn’t dropped into place then it could become cancerous. I’ll just add that to the list of stuff to worry about then.)

But then afterwards I had a coffee with my friend T or Auntie T as I should call her as she is Sam’s other Godmother. On days like these you need a friend like her. I’ve been banging on recently about needing people in ‘our world’ to talk to but I already have a great friend in T. Yes her son J is fine, developing so quickly he’s going to be running about before long and I may be the only person she knows with a disabled/special needs child, but you know, I think she gets it. When we had Sam’s diagnosis and prognosis I rang her to tell her. We both cried on the phone. She demanded that she had to come over and see us and have a cuddle with Sam. She’s always been there and I don’t think I’ve ever really appreciated that. Although she has her little man now and he is quite a handful, it is so obvious how much she loves Sam and relishes being his Godmother.

So although I’ve felt really quite pissed off today I have learned something. Sometimes what you are looking for can be just under your nose. Auntie C and Auntie T, friends for life. x