Category Archives: Special Needs

Www.marnalunt.co.uk/blog

living with fibromyalgia – managing & understanding the pain

Firstly can I please thank so many of you who have written to me and commented on the last fibro blog post. Wow I didn’t expect the support and kindness I got, I don’t know why because you have always been so amazing before. I suppose being away from things for so long has made me doubt myself more than I realised. Receiving feedback and comments makes all the difference to me, those few minutes you spent saying the smallest kind thing boosts me and gives me more hope and courage to carry on doing things. A million squillion thank yous.

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I will continue writing my findings from the pain management and sharing things that are helping me if that’s ok. If it helps you and you’re interested then fandabbydozy if it’s not your thing then just wait for the pretties again, there will be plenty. I have quite a list of fun stuff to tell you about in the coming weeks and months.

So here is the second part of my fibro journey.

I briefly mentioned the run up to how I found out I was living with fibromyalgia & chronic fatigue syndrome (yes I have both lucky me) in the first part of my story. I was getting somewhere, I had a diagnosis and now I was looking forward to getting the cure and moving on with my life. Light at the end of the tunnel and all that jazz. Turns out theres no cure though, bummer. But that doesnt mean I was going to let this syndrome rule my life, beat me or define me.

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Living with chronic pain is difficult, as I outlined a bit in the last post. It changes your personality in ways you dont see happening. It breaks down relationships, sorts the wheat from the chaff in your friendships as well as family relationships. You become moody, erractic with your behaviour, anxious, self esteem is slowly chipped away. You daren’t tell people you’re in pain yet again because they become bored of hearing the same thing, you feel like noone understands. You find yourself becoming isolated and withdrawn.

I never saw these things happening I just suddenly found myself in that situation. I hid from the reality of the situation. Instead of using the social media follwers for support and being open with people I hid and got someone to keep my facebook pages for me while I withdrew further and further. Its not that I didn’t want to talk to people and share things I just couldn’t think of anything useful or positive to say and to be honest didn’t want to depress anyone. So bit by bit I separated myself from real life and people close to me and then did it to my online family because I had lost the ability to communicate my feelings to people. I had totally lost control of my life. I let go of things I held dear to me. In a sense I gave up, although at the time I thought I was battling harder than ever before.

It’s nearly two years since my diagnosis and a year since I started hiding from you all. I think you must have noticed although I couldn’t say or admit that life had beaten me for a while.

I have been putting lots of things into action very slowly to compensate for if I get worse. Thus the year spent in writing and launching online courses, so if I become bed ridden again I still have a way of earning money to pay bills. I’m trying to be practical and put securities in place for my family should things slip back down that slope. I tried having assisstants to help with the workload of packaging and admin but I found the stress and responsibility for weekly wages was making me poorly again and actually the lack of contact with the amazing supporters of my business was making me more isolated and I needed to be back in the front line. I spent too much time teaching and writing and not enough time making which is my main therapy, no stitching makes Marna a very empty person. Its been a long journey over the last few years but I’ve learnt so much about myself, my family and my business. I have learnt what makes me happy and what is important in my life. I now have focus and priorities and a work life balance that is realistic and not work heavy. Most of all I am learning about my condition, how and why it happened and what I need to do to make life fun again.

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The most exciting thing I have been doing is learning about how to manage my pain. That might sound pretty dull to you, but what this means is that I am learning how to be happy again, I have hope and a future again, and thats damn exciting. For the past two weeks I have been in a pain management programme given by the NHS at my local hospital James Cook University Hospital in Middlesbrough. Eight weeks in total, three hours a week.

This programme, already in two short weeks, has absolutely astonished me. The information they give is so insightful and has given me such hope. It will absolutely change my life, no doubt about it. So far we have learnt a great deal about the brain and how it works regarding chronic pain (chronic pain being anything that lasts more than 12 weeks, acute pain is 12 weeks or less). A group is put together, every few months, of people that are despirate to help themselves and learn practical ways to improve their lives. We have access to physiotherapists, an OT, a physchologist, who are leaders in their feild of pain management. We as a group all have different backgrounds and reasons for how we got there. But we all feel the same.

You’re probably wondering why I’m telling you all about this, well the things I have learnt I feel everyone should know, because they are beneficial to so many of us, not just those that suffer with fibro, but anyone with chronic pain due to physical or emmotional pain (there is absolutely no difference between the two by the way, proven fact) post tramatic stress syndrome, Car accidents,  cerebral palsy, the list is huge where pain effects us in obvious as well as invisible ways. Just because you can’t see it doesn’t mean its not as real as a cut, a broken bone. I’m not dying, Although so often it feels as if I am. I am fighting for my quality of life. But you know what in a way that is fighting for your life, depression and the things that living in constant pain can bring can sometimes make you feel so desperate and alone that not living is a better option. Robin Williams’s tragic death has shown us that.

I have learnt, after years of trying on my own, to set realistic goals and learn how to pace myself so I don’t spend weeks in bed after pushing so much my body falls apart. I have learnt that the brain is insanely clever and a little bit cruel. How emmotional triggers and events in our lives can cause such pain and trauma that they are as catastophic as a broken spine or huge brain damage. I now understand that meditation and mindfulness is essential in my recovery.

I am beginning to understand how two catastrophic events in my life have triggered my brain and nervous system to live in a constant state of  terror (that anxious fight or flight place that you go to when you’re under threat, muscles primed, ready for action in the face of danger). I never ever turn off and that has changed the way my brain behaves and that has caused actual physical pain so bad that I take copius amounts of diazepam, tramadol, co codamol, next stop morphine, to be able to function and live a normal life. I have to walk with a stick a lot of the time, and there are many times that my body and skin hurts so badly my children cant even touch me. I have tried cutting out dairy and wheat from my diet and that has really helped. I know it doesnt work for everyone but I was lucky there. So I now use a mix of drugs, meditation, diet and mild exercise. It changes all the time to keep up with differnt things happening in my life.

I have tried and tested many drugs, I’m not a doctor I can not tell which you should try, everyones different and what works for me won’t necessarily work for you. I’m only using my journey as thats all I know, I can’t tell if it’ll get worse or what is store for you. No one can sadly. You just need to listen to your body and make your own judgements based on your own findings and feelings. Like its THAT easy!

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The brain is so very very powerful. But now I am learning the tools to regain some power. Theres still no cure, the damage that has been done is irreversible but I can manage it now and I don’t tourture myself with questions of why. I have my days of bitterness and anger because I’m human but mostly I am eager to live. My new life although full of pain is still so much better and more fulfilling than my old life, because now I know what truly matters and what I want from life. I have cut out a lot of the negatives, I have let go of trying to care and look after people that only bring negativity to my life and I use all my energy on my beautiful children and deeply loved husband and now I even spend time on me. Putting myself as an equal on that important list has meant I am a better mother, wife, friend, more fun to be around and hopefully getting back to the Marna who creates things that inspire and is a positive person for you to all be around too.

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Www.marnalunt.co.uk/blog

living with fibromyalgia – searching for the diagnosis

I could write a book on this subject. It’s a very long story and one that I will split into parts so you don’t lose the will to live reading the thesis that I have written. Ha. But I wish there had been more information written by people suffering with this when I first learn of my ‘new life’ so I felt less alone and frightened, so that’s why I’m writing.

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Today  I thought I would address something a little more personal but something I live with everyday so it impacts my work, my business and my life in general. It’s something I have discovered rather a lot of the creative people I know have themselves. It may prove usful for you to know as you may have the same condition so you know you’re not alone but you may also know someone with it. Basically I’m of the opinion ‘better out than in’ and feel now is a good time to chat about it.

It’s not my normal subject so if you’re not interested then feel free to ignore and come back for the next post I write about pretty things and stitching, but if you’re interested in me as an artist or just interested in learning something new then I’d love you to join me on my journey.

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I am now 39 and for at least 20 years now I have lived with pain, depression and anxiety. I’ve spent many hours and days in hospitals having tests, having counselling and being told that I was a hypercondriact, I was making stuff up for attention, it’s artist temperament, ‘women’s problems’. And any other stereotype you can think of. No one listened, people saw my as a complainer, a freak, too much baggage and avoided me, a lot. It felt a bit pants to be honest. Very frustrating and I started to believe them. I felt worthless and isolated, and frankly a bit bitter.

When I was younger the pain I felt through depression and anxiety was very physical when it occurred but it didn’t have a huge impact on my life, I could still function relatively normally. I avoided situations which caused flare ups (when the pain gets a lot worse due to normally over exerting yourself) and although annoying it was something I pretty easily overcome. I was treated for the depression and that helped the pain and very slowly I started to learn how to manage it and know the signs that my body was giving out and things were good.

Then 8 years ago I had my son. As many readers of my blog already know my son was born  and suffered huge brain damage at birth. Life changed and I was his full time carer as of course any mum is. I utterly devoted myself to him. My focus was to ‘make him better’, every amount of energy was given to him, to appointments, to therapies, taking him to places to stimulate his brain and body. I still remain entirely devoted to him, he’s pretty damn fantastic and is a very happy & loving little boy. But the drama of his birth has had a huge impact on my and my husbands mental health. We have flash backs, are very nervous all the time all the things you’d expect from having lived through a dramatic event. But during this time my focus was on him, certainly not myself, we mums do not feature on the list when we have children of any shape, size or colour.

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Then I had my daughter 5 years ago and life suddenly changed beyond anything I could have imagined. I had post natal depression, to be honest I was depressed the whole time I was pregnant, I was terrified and regretted getting pregnant. So by the time my darling and perfect girl was born I was numb. I had a planned c section because the mental trauma of the first birth was too much to get over, there was nothing physically wrong with me at all. But anyway she was born, she was healthy ( a huge! ).

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I won’t go through the whole post natal depression thing because my doctors were amazing and got me on pills straight away and helped all they could and I got over it and it wasn’t the core issue (another blog post perhaps). Took about two years but I got there. But in the background after she was born I never felt myself again. Something shifted that day. Suddenly the panic attacks were no longer manageable, the pain started very intensely again. I found it hard to walk, I couldn’t sleep without waking in pain. My back hurt all the time, I had head aches, I found it hard to look at things without sunglasses on. My IBS was back with a vengeance, I was exhausted all the time but not a normal mum with two kids sort of tired this was different it was over whelming all consuming and stopped life as I knew it. I stopped socialising, I couldn’t talk to anyone & didn’t want to. I was given diazepam (rather a lot of it) to manage the panic and pain. It helped but there were side effects. I was a useless and pointless mum,I was unloveable, I couldn’t play like I used to, I was angry and had a short temper because the pain never went away. I often couldn’t even bare to be touched because it just hurt too much. I had moments when I couldn’t speak or remember words. I felt I had lost my mind. I couldn’t articulate anything, I felt foolish and stupid and unprofessional, paranoid. My marriage started to suffer.

Test after test showed nothing wrong but I felt like I had something so serious wrong with me, I was convinced I could die and noone was listening. I gained weight as a side effect from all the medication I was having to take which made things worse and then people used that as the excuse for me being tired. I was treated like a lazy attention seeker and I should just shut up and get on with it. I tired not to make a fuss, I tried to just carry on. It was my problem and all in my head.

Then one day I lost feeling in my entire body for an hour. I couldn’t move, totally paralysed, couldn’t even talk. It was terrifying. Then is started happening more often to my limbs. I would have huge stabbing pains that took my breath away and I couldn’t help but scream or shout out. I couldn’t put my clothes on they hurt so much, I couldn’t bare to touched or hugged. I couldn’t stand up for long or lift things, I couldn’t cook, clean, take my kids to school. Life just stopped.

So I went on google.

It was like suddenly all those years of pain and hurt made sense. I found the word Fibromyalgia and I could tick every box on the list os symptoms, I could not have been more text book if I tried. It was a massive relief, I mean like a thunder bolt bit and I wanted to scream at everyone, SEE I DIDN’T LIE!!!! there was a but of course. The but was that many doctors still didn’t believe in the syndrome, it was still seen as a bit of a made up new diagnosis for nusense patients. A bit like autism was years ago, to explain naughty children (don’t even get me started on that one!)

But I though sod it, I’m going to the doctor and I will not let them send me away, I will make them listen. I went to a new lady gp and sat down and told her very matter of fact exactly what my symptoms were. Without asking anything further she touched some pressure points and the pain sent my body into shock. She gave me some pills and told me that I must come back in a few weeks and report if they were helping with the pain. She didn’t give me a diagnose because she wanted to see where this led, I got sent for a scan on my stomach, blood tests and x rays.

The pills sadly didn’t work, they gave me fits and I went back. The test results were in. They were all negative. I started to cry and wanted to give up. But the doctor explained that this was good news. How exactly was THIS good news!! Well it meant I DID have fibro. All other possibilities were gone and there were some pretty horrific things they were testing me for, I found out later, thank god I did’t know at the time. I got new medication and pain relief. I saw a specialist to make things official.

The diagnose helped. It made all the difference. People couldn’t ignore me anymore, they had to listen. They didn’t understand but thats ok why would they, it’s invisible, but now they knew I wasn’t lying. I hadn’t made it up, it wasn’t in my head.

Now you would think that was the end but really it was just the beginning………
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Part Two – Managing & understanding the pain. Next week.

THE BIG RAFFLE DRAW Help Arthur Smile

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The time has come to tell you all who are the winners of the raffle in aid of getting Arthur equipment to put in a planned sensory room.

I have to thank you all so so much for your donations of money and prizes. The support has been truly incredible and has touched our whole family. Every penny will make such a difference and  will keep you up dated on all plans. We are planning an extension to our house to provide Arthur with a special area where he can have space to do his phsyio, where he can feel safe and where he can relax and have peace and quiet. It’s going to make a massive difference to his life. We hope to have everything completed by next summer due to planning etc but you will be the first to now all the details.

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We have raised in total £1754 which will get us a long way with providing the specialist lighting and padding we need. I will be hosting more raffles in the future and networking events in aid of Arthur (if necessary) but also to raise money for an autistic charity called Daisy Chain who are our summer holiday lifeline.

I will email all winners and request there address so that the donator can post you your prize. If you don’t hear from me in the next few days please check your spam folder and get in touch so you get your prizes. If I don’t get any response from you by the end of the month (July 2013) then another name will be drawn. any queries then please get in touch by email to marna(at)marnalunt.co.uk.

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Again thank you all from the bottom of our hearts.

Right lets get to it then, the winners. The names will be as they were shown from Paypal so if you used your partners account it may have his name on. A few made me giggle, Anna from Buttonsy Jewellery won a buttons picture, heheh. xx

loula belleLoula Belle at Home
winner SHELLY NIXON

eclectic teaEclectic Tea
winner JAMIE LEVERTON

jessica sherrifJessica Jewellery Design
winner JANETTE ANDERSON

LTD-multipack-1Artwork by Angie
winner JOANNA SANGSTER

lucky stars black and whte 800pixArtwork by Angie
winner LINOS DAFYDD

Who Ate My Crayons Floral Heart A4Who Ate My Crayons
winner CHRISTELLE HOWEL

Grammar Poster - GrandmaWho Ate My Crayons
winner KORINNE MELDRUM

Sleeping Beauty 1 printGracie’s Garden Bazaar
winner GABRIELLA BUCKINGHAM

second sleeping beauty printGracie’s Garden Bazaar
winner ANGELA PASSINGHAM

elm tree studioElm Tree Studio12″
winner TIA LUSH

vintage pixieVintage Pixie
winner FAY BROUGHTON

moo and mouseMoo and Mouse
winner CAREY O’BRIEN

jojoandiJojo & I
winner MONICA WATT

handcrafted home
Handcrafted Home

winner JENNY GRIMSON

crafty lou2Crafty Lou
winner JOANNE WAKE

crafty louCrafty Lou
winner NAOMI GATE

poppypatch craftPoppypatch Crafts
winner GRACE TIMMIS

eversoamyEver Sew Amy
winner SHELLY NIXON

shakespeare canvasLittle a Designs
winner RANJIT BAKI

Mandycrafts UK
winner JULIA DENMARK

button inloveButtons In Love
winner ANNA DAY

little love vintageLittle Love Designs
winner DENSIE MORGAN

mum wants onemum wants one
winner EMILY FOX

polkapolka
winner SOFIE KAY

buttonsyButtonsy Jewellery
winner JO GRANT

buttons and butterfliesButtons and Butterflies
winner MARGARET READ

gemma esprey designsGemma Esprey Designs
winner S HEGGIE

imageMoobaacluck
winner SILVI GANT

imageMoobaacluck
winner LINOS DAFYDD

imageHens Teeth
winner ANTHONY BERRY

imageSheena Spacey Ceramics
winner RICHARD CRAWDERY

imageEleven Feathers Jewellery
winner EMMA BLACKMORE

imageEleven Feathers Jewellery
winner DANA THOMAS

imageFanciful Things
winner GARY ROBSON

imageFanciful Things
winner RHONDA KEMP

imageTamla
winner STUART GRIFFIN

003Forever Flossie
winner CINDY BENNETT

imageLove & Buttons
winner JENNY GRIMSON

imageLove & Buttons
winner HANNAH JONES

imageSewCaliKnits
winner HOLLY STRATFORD

imageLove & Lovelier
winner MARIA RICHARDSON

imageKate Creates
winner DOREEN CRASKE

IMG_1472RibbonPatch
winner JULIA DENMARK

383374_10151667111585491_78249166_nThe Dotty Tree
winner CLARE SWEET

421325_327172700659909_91892029_nLittle White Cottage
winner KIRSTY GOODFELLOW

heart hanger for marna IMG_1923Sarah Edgar Designs
winner ROSE OGDEN

IMG_4838Handmade by Amber
winner SALLY ANDREW

lavender smallJenny Arnott Textiles
winner MARIA RICHARDSON

Marna charity collage logoHeart Felt Handmade
winner TESSA FRIEBEL

photoCheryl-ann Taylor Made in England
winner REBECCA DAVIDSON

photo-2Cheryl-ann Taylor Made in England
winner CHARLOTTE HODDER

original_personalised-vintage-letter-rubber-stampSkull and Crossbuns
winner KATIE RADTKE

imageIsobella’s Tutu
winner MARIA RICHARDSON

IMG_0626Janet Bell Gallery
winner CLARE SCOTT

fairy doorBrambleberries
winner S MASON

image-1Simply So Mimi
winner EILEEN WEAVER

workEmma Boyes Papercuts
winner CATHERINE BROWN

VLUU L100, M100  / Samsung L100, M100Copper Creations
winner RUTH HERON

smile cushion2Kindred Rose
winner AMY NICHOLAS

973418_10151722247464468_789245602_nLapin Blu
winner CAROL VICTORIA JORDAN

sewfieSewfie
winner ELIZABETH BARRETT

photo-3Handmade By Martha
winner SARAH HODGETT

imageThree Little Hearts
winner KELLY CARVER

imageDaisy Frames
winner SUSAN TONKIN

imageKirsty Elson Designs
winner JANET BELL

imageFrame The Memory
winner JOYCE NEALE

imageJane Ormes Printmaker
winner GEOFF BRETHERICK

imageLou Tonkin
winner KIM TOFFREY

imageThe Lemon Pony
winner KAY LOYND

imageLittle Burrows Designs
winner KERRY LESTER

imageSarah Hardaker
winner ANNA DAY

housesignMy Little Loves
winner KIRSTY ELSON

IMG_1135Typically English
winner ODETTE RAMNARAIN

20130717_095857Jackie Reynolds Designs
winner LISA CASHIN

Janet Bell’s donation

As I’m away on holiday this week instead of the usual artist interview I want to share a favourite artist of mine and something wonderful she’s doing.
Janet Bell has a beautiful gallery in Beaumaris in Anglesey. I went there on holiday last year and it was scrummy, highly recommended if you’re near there. I first came across her work about five years ago when I found greetings cards of her stunning colourful coastal painting and fell in love with the joy that they showed. The colours bounced out at me and just made me smile.
Since then I’ve been lucky enough to chat to her a bit on Facebook and she is ace, war is even more ace is that she has asked to donate a fabulous framed print to the Help Arthur Smile Fund.
If you follow Janet’s Facebook page (please do) then you will see that she has been doing a bit of filming with the BBC. Tomorrow night she will be appearing on CountryFile painting this bluebell scene. I can’t wait to watch it.

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She painted four in total but the one she paints in the actual show is the one we have a framed print of which will be £90 rrp usually. The original painting will auctioned off for another charity Reuben’s Retreat, starting on monday 17th June on eBay with the beginning bid of £750, exciting stuff, I hope it makes tonnes for that very worthy cause.
So all in all this painting is going to be doing some amazing stuff for some great people, my Arthur being one of them, thanks Janet for your generosity. So people get buying those raffle tickets for more of a chance to win this incredible prize amongst so so many stunning donations from a bunch of talented people that really have blown my mind. Click on the Help Arthur Smile button at the side for more info and click below to donate.
Artist interviews will resume next week along with anything else I come up with on my holidays.
Thank you and have a lovely weekend peoples.

Help Arthur Smile news

Just wanted to show you a few of the fantastic things donated to the raffle, many things are being donated all the time and I’m uploading them onto the page whenever I get the chance. It’s not to late to give prizes or money. The draw happens on the 22nd July so plenty of time to get things going.

click to donate

So this is the news so far. I am making an formal complaint and will be getting in touch with my MP, actually one of you lovely lot have already contacted him for me. I’m sorry I haven’t emailed everyone back yet, I’m trying to get it all done but I’m a bit swamped and doing everything I can. If you haven’t heard from me you will promise but please do remind me if you are concerned I may have forgotten you.

So formal complaint being made, I know you’ll be glad to hear, and I’m at last glad and not scared to do it. I have also found out the reason why I can’t use the other hospital near me and that is because they don’t have the necessary facilities. My doctor referred Arthur there last year and we have now found the letter explaining so I have a reason at last. I have been in contact with a department in the hospital which deals with any help you need seeking second opinions. Not looking hopeful but at least we’re onto it.

I have found that the only option I have is still definitely the private way and I have been in touch with a private therapy practice. They have reviewed Arthurs needs and have come up with a first assessment plan. This includes a visit at home and at the practice, supervision, and a consultation. It’s going to be £625. So tomorrow I’m booking the appointment. I’ll let you know what happens. Now that the ball is rolling I need your help more than ever because I need that cash in the bank ready to pay them for everything and treatment.

I can not believe the support you’ve given us already, I’m stunned and deeply touched by peoples generosity. We finally stand a chance of understanding Arthur. But due to the fact he has incredible complex needs it may take a few assessments before we get anywhere. His needs are truly unique and to get a diagnosis may take some time. But thankfully now we have decent specialists on board who treat people with basic respect I have hope we are going forward after nearly three years of struggling.

Here are some of the stunning prizes up for grabs, you’d be mad not to enter…..

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Love & Buttons
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Hens Teeth
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MooBaaCluck
polka
Polka
loula belle
Loula Belle At Home

 

Thank you so much everyone.

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Can you help me help Arthur? Please.

I hate having to write this and ask but I’ve run out of options. Can you help raise some money for Arthur please? Basically as you know Arthur has many many issues but this is regarding his sensory issues which are huge and very debilitating for him.
I find this all very hard to talk about because I’m so so very angry and passionate about this and I feel we have been done a massive disservice by our occupational therapist who has treated Arthur and us in a disgraceful manner and hung us out to dry with absolutely no care or consideration. I will most likely rant for a while, sorry but maybe it will be therapeutic, if nothing else it will give you some background as to why I am asking for help.
Rant alert!
Arthur is six now and and three years ago this OT problem began.
He has brain damage, suffered at birth, and we are discovering from day to day new things that cause him problems. That’s the only way we can find out what is exactly damaged within his brain and how it effects him. Every day is a wait and see.
He is our first child so we don’t really know what is normal as there’s nothing to compare it to, so pretty much everything he does is a miracle, we’re not sure what actually is normal child’s behaviour and what is unusual or what would be expected from brain damage, e.g we don’t know that overly chewing on something is a sign of sensory problems and not just teething. Clearly in a ‘normal’ child it would probably be teething but when you add his background into it you see it as a side effect of brain damage.
I’m not sure if I’m explaining myself properly its hard to sum up years and years of confusion and learning in a brief paragraph so as not to bore you.
Basically anything that could be a totally normal developmental stage for Arthur is quite possibly not, as it has some sort of implication or red flag that we need to observe and tell doctors. You spend a lot of the time being told you’re neurotic and over sensitive, stifling and mollycoddling by others. Which surprisingly doesn’t help!
Anyway Arthur has always had serious transition issues, and problems with senses which have made life very hard for him and quite rightly I as a doting parent did not believe or want him to have these issues, we wanted help. So an OT was called in. An occupational therapist is meant to help assist in all sorts of issues, senses being but one. As assessment was done looking at his CP, which was not of concern as at the time it was mild & under control, and they never even looked at the sensory problems. I complained and was passed to the main woman in the area that dealt with sensory issues. After a phone conversation and looking at the report she decided she couldn’t help! Yes thats right she didn’t even bother coming to see him for herself. During that phone call serious alarm bells rang, she was referring to him at lunch time at school and how he behaved perfectly fine. He was at nursery and didn’t attend lunch!!! He ate lunch at home where I had to feed him, check all his food, make sure the temperature was right as he couldn’t cope with hot food, or certain textures, it took up to an hour of serious management and control to help him ate because he found the whole experience very traumatic! He found chewing hard, holding his spoon or fork difficult, he forgot he was meant to be eating and got tired of chewing because his muscles got tired so quickly. I confronted her about this and explained she was actually not describing Arthur at all and maybe she had the wrong file. She said oh yes but the same thing applies anyway!!!!
What!!!!!
We had a excellent physio working with Arthur who told us not to worry she would step in and help with anything we needed so we didn’t need the OT. Ok but I was still shocked and horrified by this response but thought well hopefully we wont need that service in the future and everything will be fine. A few weeks later I rang the OT again because I was finding it hard to get a toothbrush near Arthur as the whole sensation was too much for him, the smell, the feel, you can imagine it was very unpleasant for him and he didn’t know why he had to do it. Its hard to explain to a three year old anyway why they have to do stuff but to one that probably doesn’t actually understand the words you’re saying is even trickier. I left a message just asking for some tips that I may not have tried. A week later the OT in question rang back very angry with me. She said,

I’ve already spoken to you about this, we can not do anything for Arthur. He has CP and this is just what happens with that.

I’m now in even more shock dealing with the woman. How could you be in this profession, How?! Why!? Speechless.
Anyway time went on and sensory issues got bigger. Temperature of food, teeth brushing, certain feel of clothes, labels, seams in socks, pants, noise, smell, texture of food, outside temperature, needing heavy blankets laid on him, he was frightened, confused, very very stressed, all massive issues. Life was beginning to get very traumatic. I was reading every book I could, learning everything, doing everything they told me. But I couldn’t help thinking surely the OT could have given me a bit of advice and support, did they have special tools that could help?
I asked our paediatrician for help she said the only one that she could refer us to was this OT, I told her the problems, that I had no trust in her and that she had been cruel and unwilling to help. She asked me to give it one more go. I told her I would and that I would make it a fresh start, anything to help Arthur. After months of waiting on the list we saw the OT again. She came to the house for three hurs with my mother in law and sat and listened. She saw Arthur having problems, she suggested Autism, which frightened me. She also said that his issues may just be he needs to swap to a more specialised school (at this stage he was a his local primary). She agreed we were going through hell and she could see I was doing everything I could and that I was at braking point, our whole family were. We begged for help. Arthur clearly doesn’t have anything from a text book, to look at he’s good, but in that little brain it’s awfully mucked up.
She said we should wait for a few more months.
Ok.
She would go to school and see how he was doing there. She listened and I thought we had cracked it. Although she hadn’t offered any help or support she had listened and accepted that life was too much for us to cope with. I asked her to help refer us to get help from LD CAMMS which is a mental health for child department which would help with the massive issues we were having. I can’t begin to tell you what we were going through. But we were in danger and crisis, he tried to harm himself and us, you had to watch and restrain him constantly, I was frightened for Phoebe and couldn’t leave her anywhere in case. Our belongings were smashed, our house was a war zone. It sounds melodramatic but I promise you this is a tame version here.
I felt like a beaten wife. I loved my son to death but I was so frightened of him. I was black and blue. I had my hair pulled out in chunks, numerous bloody noses, scratched. I was a bit of a wreak and because I was on my own with both children nearly all the time people very rarely saw it happening so they couldn’t understand what was happening and what the big deal was. I didn’t feel like people believed me. Also I was frightened to tell people because what would they do to or think of Arthur.
Anyway I told her those things in desperation and she refused that request for help and said just wait and see. Thankfully the epilepsy nurse came out and saw our state and referred us that same day. Since seeing the LD CAMMS department things have been bearable and they have supported us all so much that we now have a future as a family. Arthur has gone from having his ‘tantrums’ six to ten times a day to having one maybe a week. It’s rare I get hurt anymore too.
Anyway I digress again.
The OT then sent a report and rang me a few months later telling me she had been to the school. Apparently Arthur was fine there she didn’t know why I was making a fuss. I said that is absolutely not true as it was so bad that I was called on many occasions to come and collect Arthur as they didn’t know what to do with him. Arthur was in the process of leaving the school and go to a special school that understands how to look after complex needs children, so surely he was not ok there. She then wrote in a report about him getting one to one support that he didn’t get and there was nothing wrong so she wouldn’t be seeing him again! Again I was in shock. The information she gave was actual lies and I had proof of some of that but now shed written an official report disregarding all the information I gave that was fact and had untrue information in it. This was now to be placed in his medical file or other professionals to read. And it was wrong! Totally wrong!
I thought she had listened to me, but all those hours of me crying for help, opening up my deepest concerns and trusting her were ignored for a half hour look round the school when he was getting full on attention, from people that has no idea what he needed or was asking for. he was never asked as he couldn’t talk properly and he is mentally delayed so wouldn’t understand the question anyway. She said she didnt know why I thought he was autistic as he was fine!? Erm YOU said he was autistic! I hadn’t even considered that before. Then when I asked if she could get a specialist car seat for him to stop him for escaping from his and climbing into the front seat and jumping at me she said no she doesn’t deal with it ring someone else! Argh!!!!! Arthur used to try to attack me when I was driving, this could be on a motorway, anywhere, and she said she wouldn’t help. When he wasn’t getting out of his car seat he would throw things at my, once I got a dvd players thrown at my head, as well as god knows how many spidermen.
Do you see why things were getting out of hand. Why I am so shocked and angry she wouldn’t help. That she told me to just wait and see if it all went away. We were actually in life threatening danger at times. Did someone have to die to make them listen. Thats what I felt like anyway.
Blimey I’m actually getting chest pain thinking back to all this.
At that point my medication was increased as I couldn’t deal with anymore. I was screaming for help and being ignored. Everyone else was saying the OT was the only woman that could help but she wouldn’t. Why, what had I done that was so wrong. How could you not help my little boy. His brain was damaged and he couldn’t help himself, and he was crying out for help.

I had a key worker at the time that managed to find an OT that was attached to the social services who came out to help in anyway she could. In the first meeting I saw her for half an hour and she helped provide us with bars to help Arthur get to the toilet, into the bath, stools and rails for him to climb into the bath himself, a special plate to help him eat unaided, the car seat restraint. All that sorted in half an hour! It took a bit longer to arrive but at least they were coming. They had a massive impact on him. Why weren’t they done years ago. everyone knew he had CP, it wasn’t news. Why did we have to go to these lengths to get those simple simple things. But unfortunately that’s all this new OT was allowed to do as she was with the social series not the health authority.

I have refused to let the problem OT ever see us again and bring us more pain. I don’t know what benefit it would be to let her back near us. There is no trust, even if she diagnosed something I would no longer have any faith in her. Too much damage has been done. She is a disgrace to her profession. It also turns out many others families have had this problem with the same woman. She seems well known for it.

But still we needed someone to help give Arthur a basic sensory assessment and help him. We also need a report from a sensory professional as Arthur is being assessed for Autism and I will not have that woman having any say in such a diagnose, whether he is or not or there is a different problem they find, it will not be based in any part on her opinion.
I tried getting the doctor to refer us to another hospital. We weren’t allowed. We asked if there was anyone at all that could take on his case in our local area. It turns out there is no way of getting a second opinion. But surely that is Arthur’s right. You can’t have the outcome of an important part of your health care based on one person alone. Surely you have the right to see someone you trust.
It looks as though in this case I have two options now. Move to another area to start the whole health care again under another trust, or go private which I have no money for.
Our last attempt was by the wonderful LD CAMMS who tried to get us funding for a private assessment as we had no where else to go. Yesterday I got the news that we were turned down.
There are no other grants available to us for this.
So now I turn to you.
Can anyone help me raise the money to get this private treatment. The assessment is around £500 and the treatment will then cost a fair bit. So I’m looking to raise about £2500.
Anyone fancy giving a prize to the raffle. As well as my own stuff obviously.
My email is marnalunt@tiscali.co.uk, if you want to email anything, information, prizes etc, I’d be grateful. My Paypal is the same address. Or please comment below in this blog.

****UPDATE**** I have set up a fundraising page called Help Arthur Smile. You can click here to donate through this page is you don’t want to gift money via paypal to marnalunt@tiscali.co.uk. We do get 7% taken from any donation as fees via this fundraising site but people may feel happier going through this official page rather than gifting money into my paypal account, we really don’t mind how you want to do it, we’re just incredible chuffed you’d want to help at all. So thank you!!!! Any donation made to this page will be entered into a raffle, click on the page on this blog to find out more about what prizes there are to be won. It will be updated daily so keep checking. The raffle will be drawn on the day after the last day of fundraising (there is a count down on the indiegogo page)*******

Donate a raffle prize? If you could email me (marnalunt@gmail.com) a photo of what you want to donate, the RRP, a link to your page or shop and any details you want to mention. I will then add the details to this page and do a blog post on the main blog. Once the raffle has been drawn I will give you the winners details for you to send them the prize.

I do feel awkward about asking this, its not something I do lightly. I am feeling very raw still about the way we have been treated, and so am a bit ranty and protective and knackered to be honest. I try and not think about it for my own health’s sake as I can feel the anger and bitterness well every time and its overwhelming.
I need to turn this into something positive now. I need to be proactive and get the help for him myself, I will not let that woman jeopardise my Arthur’s wellbeing. Arthur has battled his whole life to do every thing and I’m going to blooming well battle to make his life easier.
Please could you just hold my hand a bit. Maybe?

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How Arthur’s getting on.

Oh what total joy we have just had for a whole weekend, and to prove it I have sun burn so that must mean it’s been great! This week has been Arthur’s birthday week. We didn’t do a party this year because frankly we don’t know the names of any of his friends and I don’t think he does and we just didn’t think with all the changes happening for him mentally that he would be able to deal with it. In honestly the week wasn’t great, Arthur was constantly quite vicious to Phoebe, very rude and demanding and generally being a very normal six year old boy so all good really. Normal naughty behaviour is a blessing in our household.

As usual, now that I’m out of that grey space that I live in every now again I find it easy to write of the things going on around me, the trials I often face as a person with depression but also a mum to a child with brain damage. I don’t like writing negative things down but sometimes they are needed to sooth the soul and make it possible to move on to the next stage of healing. But any negatives I may have I like to try and remember positives and focus on these things too. There’s always light at the end of the tunnel.

Friday was interesting, an unexpected pd day at school meant Arthur was off school, which was lovely to have time with him but I wasn’t organised and you HAVE to be organised with Arthur. As many of you know he has brain damage and due to this has many complex needs. Although as yet not diagnosed with autism he has many traits of it, but also contradicts it, so you need to treat him as though he is and then things are easier for him and in turn us. He also has speech issues, behavioural issues, learning delays and cerebral palsy so you see why it’s good to know if he’s suddenly going to be at home or school. We eased into the weekend with a disaster day to get it all out of his system which accidentally worked well, although I really wish it wasn’t necessary. I find that you can see it welling up inside him and the only thing that will make things better is for him to have this huge blow out and then things can move on. He locked himself in the downstairs toilet (pulled door off hinges to get to him), he flooded the bathroom (lounge ceiling now sagging & will need pulling down and redoing but I’m sure it will get better if I ignore it), then he totalled his bedroom but that happens all the time anyway (by totalled I mean pull light off wall, smash up dvd player etc.), Phoebe definitely had a price in her head too so I had to constantly hover nearby ready to pounce and to grab her before anything happened. so Friday was a bit tricky. Let me stress Arthur is a kind a caring and loving little boy and not naughty as this may sound like he is. He just struggles with life so this is NOT his fault.

But you know what, the rest of the weekend was so fantastic who cares about one bad day!
Saturday was Arthur’s birthday celebrations and we had his little friend, Billy, round. Billy has been his friend since they were just 3. They met before their age made it unusual for Arthurs language to be an issue. It was a time when kids play and don’t need to talk especially boys. They just run around aimlessly. And as time went on and Billy went forward Arthur kept up in his own way and they were a great support to each other. Last year Arthur had to leave the school that all the people had had formed bonds with and go to a school that would give him proper teaching support. Last year was a very very dark time. His new school is incredible but because he is now at an age where people need to speak to make those friendships and he is very insecure in his ability and to be honest most don’t really understand him. Also socially he hasn’t developed to the same lengths as them yet so it’s extremely hard for him.
So Arthur had Billy with him and he was very excited. We were taking them bowling and to the cinema, now there are two things an autistic child can not deal with, see Arthur ain’t text book. We were taking a risk, he may freak out, but he could do that going to Tescos so we cracked on.
And what a fab day! So many smiles and happiness it was just right for him.
So this beginning was just what we needed for the perfect bank holiday. I felt like a normal family going about doing normal things and that is so rare.
Amazing what a bit of sunshine can do to make us all keep happy. After three and a half years of living under a cloud and things getting worse with my depression and Arthur diagnoses I feel like this might be ok actually and I’m a bit excited. Clearly Arthur will never get better, (funny thing about brain damage there’s no cure, you’d would be amazed how many people ask if he’s better now because he looks so normal) but each day we find another way of making life a bit easier, as both my children get older it gets easier for them to go to an activity day or simply to understand how to play on their own with a toy for more than five minutes. I know understand how to divert ‘tantrums’ and how to calm down situations. Where to take them that stops all of us getting stressed and when to calm down the fun. It’s an interesting and amazing journey, definitely not fun a lot of the time but worth it because its my family and if we don’t work very hard at it then life will get really bleak really quickly.
We don’t know so much about what is gong on in Arthur’s brain, there is no text book that explains to us what is wrong with him, it’s a matter of waiting and seeing, but this weekend has left me on a high, one where I feel that things are possible, I feel like making jelly and making us all a picnic to have when he’s home from school. I feel like squeezing him and telling he makes me so happy, I felt like telling you lot that he makes me so happy. I am so happy.

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The birth of Little a

This time of year is filled with utter joy and a wee bit of sadness. Five years ago our life changed forever as it does with so many couples expecting the birth of a perfect new baby.

Little a

I was so excited about meeting your new baby, we didn’t know what we were having, and just couldn’t wait for the day to come, I had followed the books and was the ‘perfect’ host, not eating or drinking anything naughty, doing all the exercises, did the nct course and was even giving massage and hypnobirthing a go. I’d done my birth plan but really didn’t mind what happened as long as the baby actually came out because I couldn’t stand being a beached whale for any longer. The night arrived (8 days late, grrr) and I had had several bouts of false labour so really I was convinced I just had trapped wind and wasn’t in labour, I didn’t think the baby would ever shift. But after trying a bath and some Rennie we gave the hospital a ring and went in. It was strange as I didn’t have the tummy cramps, I, lucky me, had all the pain in my back and from the word go the pain was full on it didn’t get closer together the nearer I was, it didn’t get worse, it was just 24 hours of contractions no rests or breaks.

It had begun….

After the birth I wrote everything down that had happened and how I felt and I was looking for it this week, I’ve not seen it since the day I wrote it because I just couldn’t and now I felt it was time to do that but alas it has gone. So this is my account, in a vague way hoping it is therapeutic to get it out of my system but also in the vain hope it may help others that find themselves in that same place.

I was very determined to do it all by myself, the labor  and not use pain relief, god knows why, but I wanted to do something I could feel proud of and make my mum proud of, it was a deep need. I’d always felt a bit f a failure at life in general and in the eyes of my parents and thought this would show them I was OK. The labor was intense but very well managed by myself and the midwives, my husband was some for of god, making me laugh (saying I was like Darth ‘Labour’ with the breathing into the gas and air. Death stares from the midwives ensued but it made me laugh).

24 hours of  ‘fun’ later and after being prepared for a ventouse Arthur appeared, he obviously didn’t like the idea of the skin unblock-er coming to get him so he popped out before anything needed to be done. I had done it, a natural birth, just a bit of music and some essential oils, a whole load of noise and he was here. I knew he was going to be a boy. I just had a feeling, and he was always going to be called Arthur after my wonderful grandpa. So my little Arthur was laid on me whilst I trembled in disbelief. And then all hell brought lose.

Arthur’s first day

Arthur has taken to the table beside me with Simon in between us. Arthur wasn’t breathing, he had had the cord around his neck and had swallowed a huge amount of meconium, a dangerous amount, what would normally at the time have been a fatal amount. And while I had to give birth to the placenta my son was lying blue and lifeless on a table next to us while the doctors worked to save him. My only memory was screaming ‘please don’t let my baby die’ again and again. I knew what it all meant because something very horrible had happened to a work colleague only a month before. His baby was born under the same conditions and so much tar like mechonium had got into her lungs that they just couldn’t get it all out and their dreams were all crushed. So after that tragedy, I had asked all the midwives questions about this situation and was told it was so rare it would not happen to me and it was out of anyone’s control anyway, fate, rubbish, shitty, fate.

It’s all so vivid in my head, time doesn’t dull the memory or the pain or the damage.And I wasn’t poor Simon, he was watching his son lifeless on one table and on his other side his wife was screaming, and going into shock whilst still dealing with the third stage of labour. Anyway, somehow these doctors got the tar out of Arthur’s lungs. The midwives later told me that the doctors had used a new resuscitation technique they’d never seen before. They had performed miracles and saved my baby. I just thought if they can do that everything will definately be ok., I mean come he had totally cheated death.  The doctors took him to the nursery and I was left to ‘clean up’ have some toast and a cup of tea. The nursery sounded nice, ahhh he’d be all snuggled up waiting for me to give him a proper cuddle. I didn’t know or understand that the nursery was neonatal intensive care.

Father and son

I was popped into a wheelchair at last, we were kept waiting for ages I just wanted to see Arthur, then I saw the ward sign…..then I realised something wasn’t quite right, there was silence other than beeping monitors and buzzing machines, people were watching us, it was 3/4am and the ward was empty of anyone other than the staff. Then we were taken to his area. He was in an incubator and was covered with tubes, his face blanked out by a ventilator and a little knitted cap that kept the tubes in the right place. We could touch him briefly through a hole in the side. Then they explained what had happened.

Arthur, once resuscitated had  been brought to intensive care and on the way he suffered a huge seizure, probably due to the lack of oxygen to the brain whilst being worked on for such a long time. This had caused massive damage, many of his organs weren’t working but most importantly he had suffered brain damage. No one knew how extensive it was yet, but it was big, it was serious. We were then left alone with him and to make the phone calls. Phone calls to tell nearest and dearest to come as soon as they could because otherwise they night not see him. I don’t think anyone but the staff and Simon and I understood quite how bad it was, we knew what had happened previously and the likelihood that the machines would be turned off was high. It was all a bit surreal, like you were watching someone else’s life, it couldn’t be happening. When we went to see Arthur a few hours later, after trying in vein to rest, he had come out of an incubator and was now on what essentially a cooling table, and had been placed on a medical trial which was hoping that by cooling his whole body to slow down that the rest of his organs his energy would go into healing his brain. I’d rather not think of all the things that weren’t working because they were the least of his problems if the brain didn’t respond. The wires were terrifying, one went into his head to monitor stuff, he had a feeding tube, drips etc etc etc. We could touch him but not stroke him as that could upset his senses, we still didn’t even know what he looked like. Didn’t know what colour all that gorgeous hair was as it was still thick with the meconium.

Days went by and going to see him terrified me, I was with drawing quickly. I didn’t want to go because I was scared he might not be there, he may have gone, all we felt was huge pain and grief and confusion. We were grieving for a life that we thought would happen that had gone. Our son hadn’t died but the baby I had had inside me had gone somehow and a new one was lying there now. A new one that I needed so badly I thought I would explode. He couldn’t die, he’d never get to feel my hugs, he’d never see us, know us, love us, he’d never know the seaside, feeding the ducks, breath fresh air, blow out a candle on a birthday cake, hold our hand, be swung with laughter in the air and caught by his daddy with the safest arms. But the most important thing of all was he would never know, really properly truly know how much I loved him, unconditionally, instantly, all consumingly. That was terrifying. Those first few days I was preparing myself for his death, every moment waiting for the words.

The first time I held him

Living in the hospital, which both Simon and I did, was strange. I was still a patient as they knew my history with depression and they must have felt I needed observing. Simon was allowed to stay with me and sleep on a reclining chair they wheeled in from a visitors room. We had a side room on the maternity ward away from the mothers who had there babies, but I could still hear them crying every night, those lucky mothers and there crying babies.

Our family

Simon spent a lot of time by Arthur’s bedside, reading to him, speaking with the doctors and understanding all the medications, the latest hourly procedures. He did ‘cares’ mainly I was just to frightened(‘cares’ is where you change your babies nappies, wipe the eyes and mouths with sterilised water). There were so many wires, he was so little, although he was a giant almongst the prem babies that were mainly there, what if I did even more damage. And those noises, the beeping of the machines, there was nowhere to sit apart from two bar stool type things. After ten minutes you felt like you’d been there for hours. Time didn’t mean anything, we forgot when  we were meant to eat so we missed meals and when we got hungry the shops had closed, nothing really made sense and we became institutionalized very quickly. The outside world and what was happening meant nothing. I went in and out of shock, Simon was there always. We would sit and talk for hours about everything, we stayed strong because he was strong. That kept us together we experienced everything as a team, it was Arthur, Simon and me against the world.

At the end of the first week we sat with one of the main doctors and spoke to him about our fears. It was the first time we were told he was unlikely to die. Then we could breath again. Pretty amazing Doctor really, how many people can tell the parents of a ill child that there child is exceedingly ill with life changing implications but you leave the room feeling happy, excited and positive. Things started to get a bit easier, I wasn’t afraid of every knock on the door any more. I was going to do everything I could to make my son better. Even when I was discharged and had to leave him there, which nearly killed me, I knew we would be together soon. We had to be I wouldn’t allow any other option to enter my head. There are moments when you go through this sort of thing that you can’t explain to people that are lucky enough to have typical experiences. Things that are easy to take for granted that we celebrated and made us bond with our son more than is humanly possible to explain. The night he had his ventilator taken out and we saw what our son actually looked like. The first time we got to hold him, feel how warm and soft he was. Hearing him cry for the first time, his perfect little voice. I could write a book about those tiny things that made us want to carry on each day. Finding he had a sucking reflex so he may be able to feed with out a tube one day. To be honest I thought it would be easy to write this down and explain what happened. But it isn’t, and I don’t think I can properly. After five years it’s just as raw and painful and vivid.

Needless to say my boy lived, he left hospital, and we have enjoyed every single second of his life, we have celebrated every achievement. He has done everything that wasn’t expected. He sat up, he rolled over, he held an object, he ate food, he walked, he recognised us. He was a bloody miracle. Not one moment of Arthur’s life hasn’t been cherished and loved and wanted and remembered. Many children don’t get to leave that ward and we knew some of them and we will never forget them. Arthur has brain damage, we have recently found out the complex needs he does have and that mentally there are more issues that we realised going on. Life is different for us than for my other friends and family. But that little boy we have is braver and more determined than anyone I know. He is why I will never give up with anything. He is why I’m a better mother than I could have ever dreamed of being. He makes me a better person. And he sister shows me the same strength and power of character that makes me the proudest person alive. My little family, Simon Arthur and Phoebe. It’s not about the devastating things that happen to us all, it’s about how we deal with them.

His first meal

Arthur’s brain is damaged, it won’t get better, what’s done is done. He may look ‘normal’ but that is because every second of every day he is working 500% to be like us. Every day from waking up he has to think about how to move his body to stop accidents happening and keep himself safe, he has to think of a way to communicate with everyone because he has limited speech, he gets tired very easily but he doesn’t know how to sleep without medication. He has epilepsy. He has behavioural issues and probable learning difficulties. He had complex sensory issues. He is constantly misunderstood and talked over. And we have so much more to learn about his needs. But yet he smiles, he laughs to most fantastic giggle you will ever hear, he is kind and so loving and is happy. He rarely complains. He is NOT naughty, he is brave and to be admired. He is a miracle and those people who stare and tut at him when he is frightened and out of control, I pity you because you don’t have an Arthur is your life to make you a better person too.

First ever ride on a bike

Writing this has been incredible hard and I’ve avoided going into too much details, but for months I have been having vivid flash backs and finding life difficult. I think I needed to remind myself how wonderful things are and how far we’ve come. The difficulties won’t end but thank god we have them I wouldn’t swap them because then I wouldn’t have him. xxx

Back to reality

I’ve been a bit quiet on my blog recently. I have been having a very complicated time in my personal life and it has been very hard to be bright and breezy as though all is well with the world so instead I said nothing. But then I thought, well life isn’t all roses and this is meant to be a blog about my life, both personally and professionally, because to be honest they are the same thing, I’m not so good at separating them. The bad things make the good things that much sweeter and I want to share all those experiences with you. I don’t think this blog will work unless I’m totally honest and bare all. I hope this doesn’t bore you, offend you, annoy you, I hope it may inspire you.

So I’m going to tell you a tiny bit about why I’m sometimes quiet.

This is Arthur. He is Little a.

My baby Arthur


Four and a half years ago I was lucky enough to become his mum. He, however, was not so lucky and suffered brain damage resulting in him being in intensive care on a ventilator and having every cable known to man attached to him for two weeks. (How it was only for two weeks we still don’t know, my son is some sort of miracle) I won’t go into that, that’s another story, needless to say it was pretty rubbish. What wasn’t rubbish was that he survived! Against all the odds my rather perfect little boy survived and came home and our journey of utter joy and terror began, as it does for all parents.

We have known always that Arthur would have problems, we never knew what they would be or when they would arise, but there would be no escaping the damage that was done. However things were going pretty good, he developed normally and pretty much at the right time. We found that he had Cerebral Palsy Hemiplegia pretty early on, it was mild and we could easily cope with that, no ‘biggy’ (well it is a ‘biggy’ actually but in relation to al sorts of other elements it wasn’t the end of the world). He has numerous splints and a wheelchair for when he gets tired but most people can’t tell and it doesn’t effect his life too much, apart from getting very tired very easily. We have a blue badge too but again that throws up many other stories/issues/things, for another blog post me thinks.

Arthur and his special bike


The first three and a half years of our life together were pretty normal. Arthur was my first so I had nothing to compare it to, nothing was expected from him, so everything was amazing. I took him to every baby class available in the hope it would somehow make everything ok. The were very few differences between him and other children so we were lulled into a false sense of security and almost thought that actually everything would be absolutely fine. Obviously now I have Phoebe and see what children should and can do and when. I see that there were clearly signs that things would become an issue.

When he got to school nursery and he still couldn’t talk we knew we had very real problems, he couldn’t tell them anything, that he needed the toilet, he was hurt, someone hit him, he wanted a cuddle, he liked the story. He has verbal dispraxia, this means Arthur can make the noises and sounds but not put them in the correct order to make words or sentences so it comes out as a bit of a mash. After over a year of intensive speech therapy, twice a week. he yet again has amazed everyone. Strangers can now understand the basics. A massive step. He used a mixture of sign language, a communication book, and his own language/noises before and still does but you can definately understand most of what he says and can guess the other bits, most of the time, and the communication book doesn’t have to go everywhere.
When last summer came he was prepared for the beginning of big school in September 2011. The change over went well, he is in mainstream school and because of going to the nursery attached to the school, he knew the teachers and lay out well. And more importantly they knew him and what to expect. He settled in beautifully, he’s inseparable from his best friend Billy and has all the girls chasing him. Then half term came.

I was beginning work on my christmas range and getting stock together and it was really hotting up as it was my first proper christmas in business. Orders were coming in. Phoebe his little sister was being the super toddler she’s always been and talking, dancing, singing, counting (she was 18months and had over taken Arthur in most things). Arthur had another massive seizure.

He was sleeping in my bed with me after he had had a bad dream. I woke to a horrible noise, a gurgling, wheezing noise, and there he was. Eyes rolled, excessive drool, mouth chomping, arms and legs jolting. He choked on his own dribble. He stopped breathing. Luckily I knew what to do and once the ambulance arrived he was coming out of the seizure and things were calming down. He was exhausted but absolutely fine. He had been fitting for over ten minutes.

Arthur has been diagnosed with epilepsy and put of medication straight away, brain scans had been booked. We were hoping we had missed the epilepsy, because he was getting older and had only had absences before, but it got us in the end. That wasn’t or isn’t the thing we’ve been struggling with though, although it of course has been traumatic. The struggle has been with the unseen effects of his brain injury. Arthur has been having a lot of sensory problems. For over a year now I have been telling all the doctors that there’s something wrong, he can’t cope with all sorts of things and I’ve been ignored and treated like a neurotic mother. It’s been getting worse and worse.

Before I go on I must tell you how incredible Arthur is. How loving he is and caring, sensitive and brave. He has battled through so many things since the second he was born. He has had to fight to do everything, to breath, to eat, to crawl, to walk everything we take for granted he battled for. He wasn’t expected to last the first night and has been a miracle ever since. We are very very close, I admire him and adore him. He has the best smile in the world, he holds my hand when he knows I’m sad, he’s very handsome, he’s my friend, his cuddles should be bottled as a cure for all ills, he’s got a wicked sense of humour, he’s very popular, all the girls love him especially his sister!
Arthur has become increasingly volatile. He can’t cope with noise, some touch, transition of any sort, being in a car, not being in a car, the list is endless, basically anything at any time can upset him so much that he loses a grip on reality and ‘flips out’. This involves me having to restrain him for his own safety. He has tried to attack me when I’m driving after getting out of his car seat. He hits, kicks, bites, destroys. He just can not cope with life. There is no warning and there is no one way of making it better. What might work one day will make things ten times worse the next. He isn’t autistic because he is very social, but he is on the spectrum. He often is only at his worst alone with me and Phoebe so people do find it hard to believe that such an adorable boy could ever behave how I explain. I must add that he does not realise what he is doing at the time, he has drawn blood from me and when calmed down I’ve shown him what he has done and he was utterly distraught that he had hurt me, he didn’t know he had done it.

So as you can imagine, life is tricky at the moment. We are about to change schools for Arthur to a school that has experience with children with complex needs. He will have to leave all his friends who he is extremely close to, not an easy transition for anyone but then think about what I’ve already mentioned. We are trying to get a diagnosis for him and thus get help from a very specialist team. We need to get him a large amount of equipment, to keep him safe and Phoebe. I need to be trained to physically deal with him so I don’t get hurt again, because as his main carerer what happens if I can’t look at after him.

I love my boy more than anyone will ever now, but I’m frightened of him and I fear for the future as he gets stronger. That’s a painful thing to admit and I feel ashamed thinking it and saying it.

So that’s what is going on behind the scenes at Little a  at the moment. Changes that I have made to my business may make more sense now, why I have to do things through my website so I can keep a track of things easier, price increases because my time is more precious than ever before and I have to make it a business not a hobby now. I will never change and nor will my service or quality. I don’t ask for hand outs or go for all the grants going. I believe that I need to provide for my son and give him everything on earth he needs (not wants, needs) and so I work….hard. I work to help my son, I work to help myself, I work because it keeps me sane and keeps life beautiful even at it’s darkest.