Category Archives: Family

A weekend in copenhagen

a dreamy weekend in Copenhagen

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I’m 40 this year! Expect me to bang on about this in many posts ALL year, as a little reminder to friends and family of all the presents and cake I’ll be expecting, heheh.


Well lovely Simon asked me what I wanted to do to celebrate this occassion, and I basically advised him I wanted to spend the whole year celebrating with various trips and outings with friends and family. But the biggest thing I wanted, and quite frankly needed desperately, was a whole weekend away somewhere abroad with just him. Like many parents out there we haven’t spent much time as an actual couple for some time. It’s not exactly easy to get away when Arthur has such particular needs anyway and finding someone that isn’t scared of being left alone with him for more than a few hours is almost impossible. In fact my mum is the only one that will. He’s not in the least bit scary by the way, he just has lots of medication and has very specific needs and ways of helping him which most don’t feel comfortable with.


So while I was ill Simon took control. He knew we both needed this badly, a long weekend away together to get some respite. He organised everything with my mum and she would have them for FOUR WHOLE DAYS! I’m the sort of girl who likes city breaks. I’m not very good with lots of heat and lying on a beach, I just don’t know what to do with myself. I want to see things, experience different cultures, and explore. I’m not a big traveller, I’m great around Europe but haven’t really ventured further afield. So I’m sort of a lazy explorer.

I considered the options and felt that I needed to see Copenhagen. I’d never been but just knew it had everything that I needed at this point in my life. So the gorgeous man booked it, we packed and then….well you know what follows.


My birthday is actually in August but April was the only time we could fit it in everyones diaries so a few weeks ago I was walking down beautiful, peaceful, and colourful streets of the most incredible Danish city.

After looking through many travel guides, one of my favourite things about trips abroad, I knew that Tivoli Gardens was a must on my list. It looked so magical and fairy tale like. Like living in a snow globe, my ultimate life long goal. Snow globes are just too cool, fact.


We emerged out of the Central Station to the first sights of the city, a stunning wooden vaulted building with stained glass windows, now come on – why don’t they make all train stations like this!?! I knew this was going to be very ‘me’. Our lovely little boutique hotel was a very short walk away in Vestebro. A great part of the city stuffed full of independent shops, concept stores, cafes and craft breweries. And best of all about a five minute walk from Tivoli.

We arrived as afternoon was merging into evening and Tivoli was our first port of call to enjoy an evening concert, get some food, enjoy some people watching and relax into our stay together. We entered the gates and were immediately hit with twinkly lights, magical music and a buzz of excitement that Friday nights in the city bring. We found our spot outside a lovely restaurant right next to the main stage and got our selves comfy under the blankets that all cafes seem to have out there folded over the chairs. In typical Lunt fashion we were unseasonably dressed so a good snuggle blanket and hot chocolate with lots of whipped cream kept us warm while watching the sun go down and seeing the magic that Tivoli has to offer – water fountains, elaborate architecture, smiling faces and the hum of gossip and laughter. We experienced Danish pop at it’s best, apparently, not for us, but we still just loved seeing tourists and locals altogether enjoying a wonderful night of dancing and noise.


Day one was about the shopping, exploring and drinking lots of coffee while seeing some of the main sights to get that touristy thing out of the way before we started adventuring around our particular area where we were staying. So first stop was heading up towards the lovely harbour of Hyhavn. I managed to stop off on the way to find myself a snow globe (you may know of my snow globe obsession by this point, I have to collect one from every place I go, I even have many lovely friends and customers hunting them down for me now).

The weather was crazy, again we followed our Lunt tradition of not having appropriate clothing on for first, snow! then bright sunshine, and then rain. Hahah but it didn’t dampen our spirits, we’re British you know!! (And Northern so are very used to the bitter winds up here)

I enjoyed a spot of drawing and photo taking whilst Simon thoroughly sampled the local beverages by the harbour and learning about ace historical stuff like, you see that boat in the photo below? That was a refugee boat used to evacuate people out of East Germany. And Hans Christian Anderson lived in three different houses down this street at various times. We hopped ourselves on a boat trip to save ourselves a walk and learnt more cool stuff about the naval bases, secret hideouts and new ‘illegal’ communities around the city, a few palaces and then the obligatory Little Mermaid sculpture gifted to the city in honour of the beautiful fairy tale written by Hans Christian Anderson.

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Then back to Tivoli to find yet another concert or two bookending our dinner. One a ballet on the Peacock stage, then a fab Big Band with everyone swing dancing around the stage. I managed a small wiggle before needing more hot chocolate and then bed, ready for new adventures in the morning.

Day Two. This was about finding a record shop for Mr Marna. Nothing brings him more glee than to find a small local record shop with knowledgable owners that just want to talk music and get excited about vinyl. We found an ace one, I enjoyed a latte in the bright sunshine whilst he had an ‘indie geek off’ the owner of Kaffe Vinyl buying some Danish vinyl that is certainly an aquired taste.

Then we walked, walked and walked a bit more, stopping by cafes, in parks, discovering gorgeous shops with owners that just wanted to tell you all about what they wanted to make, do, sell and why they loved their methods and style so much.

It was inspirational discovering these people with true passion for their subjects and infectious excitement about plans and inspiration and a thirst for knowledge about you and your reasons for visiting. Such a wonderful culture. I found myself falling in love with Copenhagen in a different way from any other stunning European city I have been too. Maybe it’s my age, I’ve slowed down more now and have time to listen and experience places on a level that I couldn’t when I was young and too eager to rush to the next place, seeing the next gallery, ticking the next sight off the list.

Copenhagen has so much to offer on so many levels and I was inspired not just creatively but I found myself healing somehow. The anxiety was still deep with in me but my soul was lifted.

It is so often forgotten by both of us that we need these moments in time to remember ourselves as a couple, not just parents, employees, or carers. To stop, breathe in the ozone and look at each other through new brighter fresher eyes. To forget just for a few days about medications, stopping every few steps for someone to go for a wee, look in an actual grown up shop without dragging around a very, very bored little one. ‘Not another shop mummy, please!’

But even during these times our children are never out of our minds, rightfully and thankfully so, we imagined them enjoying the parks, running in the streets, playing in the fountains and enjoying a new culture. The city is alive with all ages and is a wonderful place to take kids (now that we have managed to enjoyed it’s pleasures too without them!) Phoebe would have loved the pop concert, Arthur would have devoured the home of Lego, it’s so pram and wheelchair friendly too.

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A few of my favourite finds were an incredible flower shop (I still weep thinking I can’t go there every day), a cafe with the nicest owner in the world that cooked stunning healthy and fun organic food with reclaimed and hand built furniture all by themselves. A record shop that had fun and humour (and hot chocolate), Tivoli, I went three times and still could have gone back more!! An ace palace of Fonts with exciting stationery for me to stroke, as well as the beautiful Hay shop that I may have slightly remortgaged the house on with the amount of notebooks and pens I just NEEDED. The colourful houses of the harbour side. There was so much more to see but there really is never time to see everything, you find a new list of places to see, down each street you turn. (I have popped links to my favourite places at the bottom)

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But what we needed from this break was found in spades.

We found ourselves, a spark was relit in our souls. I wanted to draw and paint again. A weight was lifted and left behind me and I felt like I could be happy again, like I could break free of the cycle I was trapped in. The every day burdens that I was beginning to feel were destroying me, suddenly become pleasures again. And a joy returned to the little crackly bit in the back of my brain. I didn’t want to let go of that feeling but instead of dreading the return to my home and those responsibilities I found myself excited about the new journey I was going to travel when I returned home. So thank you Copenhagen, thank you for a flipping mega jaunt with my scummy Simon.

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Links to my favourite places:

Cafe Holger (gorgeous cafe with delicious food and the nicest owners ever!)
Detsortetrae (incredible florist with stunning diplays and beautiful containers to buy)
Playtype (fantastic, tiny independant letterpress foundary creating their own fonts and selling to-die-for stationery)
Hay House(Danish designer brand, you’ll know it whenyou see it)
Kaffe Vinyl (ultra cool record shop/cafe)
Tivoli Gardens

A long year blog post by marna lunt

it’s been a long old year & we’re only in May

This year has flown by in a bit of a fog, suddenly I have woken up and it’s May already. I seem to have been hibernating in my own little world not noticing things flying by me.

You will notice possibly that I have been absent in a manner from my business for sometime. Not posting or communicating too much. I’ve done the minimum to keep things plodding away but not been focusing on work fully, keeping you all at arms length. I feel I owe you some sort of explanation really although I’m not sure how I go about it or where to start.

Many of you who have followed me for some time know that I have a slightly complicated life, but don’t we all to be honest, that’s just the way of the world. I’m certainly not saying I have it tougher than anyone else at all but all these complications have made it difficult to juggle too many things of late. My Fibro pain is not too bad, I seem to have got the right formula of rest and play thats working okay for me for now, hooray. My little cherub Arthur is also on great form and achieving the greatest of things with the new support he receives at his excellent and miraculous new school. So this is the time when things should actually be perfect, but as we all know the calm after the storm can be when your inner most demons rear their heads. It’s a bit like when you’ve been working your arse off for ages and then you get a holiday and you’re ill. SO frustrating. But there we go, this is what sort of happened to me.

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For many years now I have been fighting off my depression and anxiety knowing it was bubbling down deep there but I kept thinking ‘no you don’t, get back down there, leave me alone, I’ve got things to do don’t you know’. But come January this year my brain broke a little too much and all those cruel thoughts zoomed to the surface like a volcano. It felt pretty dreadful I can tell you. I went from feeling rubbish but knowing tomorrow was another day to thinking ‘actually you know what, no, I don’t want to do this anymore. I think the world would genuinely be a happier place if I just didn’t exist anymore’. I could hear my kids laughing downstairs, a sound that would usually fill me with joy, but this time I felt numb. There was just no good feelings inside anymore. I felt like a drain on my family and friends, like if I didn’t exist anymore then they would be set free. I actually thought I was releasing them from a life of misery that I was causing. How could I release them from me and my hideousness….

Well I looked around me and I saw the answer. So I took some pills. Now don’t get me wrong, I didn’t actually want to die, that’s the frightening bit, but I didn’t want to feel anymore, I couldn’t take the emotional pain anymore, simply existing was no longer in my belief system. This is what the unstable mind really thinks sometimes. It won’t seem logical or sensible to some of you but if you have ever had a mental illness you may have a small idea of how and why I felt like this. Many may think it was selfish and cruel, years ago before experiencing the reality of the situation I may have felt the same. Suicidal thoughts are not new to me but there was always a glimmer of new hope in tomorrow. Sadly this time that glimmer had gone on holiday for the day.

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However I did survive that day, because I have a pretty heroic husband, one that believed in me, wanted me and was brave enough not to give up on me. Having said that, I still refused to seek professional help and plodded on, I had things to do you see, I had plans and things to be working on, really really blooming important things, and was not willing to let people down just because of my ‘stupid’ feelings. I had things to look forward to to push myself towards. But after several weeks I realised that I could’t actually keep going and things were going to get worse everyday until I got help. I am not going to go in to detail at all about the daily things that were happening inside my brain, they were bad enough at the time so I’m certainly not intending on reliving them now. Needless to say I was finally visited by the Crisis Team and they gave me home care and help. With their incredible kindness, knowledge and professionalism (big HOORAY for the NHS by the way, aren’t we bloody lucky to have them!?) I started to function a bit more each day. I left my bedroom, then I left the house and then I managed to do some projects that seem insane that I did them now, (you will see them nation wide next month) after years of practise I am a dab hand at putting on a brave face.

I’m not completely better yet but I am recovering. I will be in recovery some time, this sort of thing takes a lot of time. But while I am recovering and functioning I am starting to work again. My mind is clearly out of the fog, and I am taking an interest in the sun in the sky and the people around me and using stitching as my therapy (along with professional therapy I hasten to add), as I have so many times before. Powering me on to want to share with the world how creativity is essential to wellbeing and hope.

So this year has been a little bit tougher than normal for me and because of that I have retreated from social media and writing and just concentrated on getting well. There are days when I feel like I rule the world and can do anything and there are days when I hide in bed because outside frankly is a place I don’t want to interact with. Clinical depression is a powerful thing, it creates darkness beyond your imagining but because of these black, lifeless days we can see the good and bright days in glorious technicolour and all our senses are heightened. I smell my childrens hair and suck in the sweetness, I hug my husband until he turns purple, I laugh with my friends until my tummy hurts. I rather feel like existing is quite wonderful now. That each day brings a new challenge filled with exciting opportunities. Even when those bad days happen I am very very sure that the next will be good, the future is possible again.

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So I’m starting with this blog, and trying to be honest about my illness. Not to frighten you, not for sympathy (god thats the worst) but to explain a little of why I am who I am and why sometimes I’m quiet and sometimes you get a flurry of activity. I’m not going anywhere though. I’m staying right here thank you very much.

You see, it’s not just my family who are my saviours but it’s you too. You liking things I make, appreciating the beauty I try and share, and listening to me. Knowing that I exist and that my life means something.

I started my business because I just could’t help but make things, I created because of a deep need inside me, as a way of therapy and well being, and a way to say to the world that “I am somebody! Listen up!’ I don’t want to be forgotten and not to have left my mark on the world. I need to leave a legacy to my children. A legacy of happiness, of hope, of inspiration. And so I start on my journey again. It may be a slow one, but it’s going to be a worthwhile one. I hope you carry on watching, and listening and enjoying what I do, write and share, every little comment however small, every winky face, thumbs up, and heart brightens up my day and makes me know that beauty is all around us when I just open my eyes and pay attention.

Marna + Simon (low res)-31

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 Red Nose Day Crafternoon Marna Style

nothing like a girls day , tea, cake and making

Friday the 13th is a day people usually avoid but this one was certainly one to get excited about. Red Nose Day 2015 has been embrassed but crafters this year due to the fabulous bookazine in assossiation with Mollie Makes created by Jane Toft and Emma Mitchell. A project I had created for Mollie Makes was kindly chosen o be in the bookazine amoungst many other incredibly talented designer makers. 

Spurred on by this wonderful news I decided to make some money for the charity too by auctioning off some places at a workshop at my house and studio. Four fabulous ladies responded and we had a gorgeous day of making hoops together. My two little ones joined in too, just showing all ages can enjoy creating and being funny for money.

Thank you to everyone who has pledged and raised money this year for the fabulous charities that Red Nose Day support in this country and abroad.

the fabulous Crafternoon bookazine









Thank you so much to Charlotte from Eve Photography for taking the photos and helping so kuch on the day amd Kirsty for making the lunch and generally helping to organise and  the whole day.

Out of hibernation!

Whooo hoooo, the sun is shining, well is was a minute ago, and its the weekend, a bank holiday, then a half term then another weekend and it’s only gone and been sunny too! So I get my gorgeous husband for a whole three days to play and pootle around the house with, play with the kids and generally have some lovely adventures.
Weekends used to be, me in the studio working and Simon with the kids, and we’d do a tag team thing when fights broke out (the kids fighting not us;)). But I’ve really tried to turn things round this year by taking on less work so I can spend more time all together. And what fun we’ve had.

Picnicing
Picnicing

Whenever we get a nice day we try and head for the coast. My beach of choice is Sandsend which is next to Whitby. Its a bit of a trek now as we don’t live as close as I used to but it is worth it. The kids are in heaven. All that space to run, all that fresh air and all that mess to be made without mum annoying them by telling them to be careful and nagging. Phffff mums eh!

So we packed half a tonne of stuff in the back of the car and headed off for the beach.

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Recently I’ve decided to stop taking my pills for anxiety and depression (its ok I did it properly). I’ve been on them for the last three and a half years since just before having Phoebe. During that time I’ve put on weight beyond belief, which is pants, and had lots of other side effects but they worked and I really needed them. But it came to a point where I felt myself tumbling down and having my pills increased so much that I just wasn’t functioning anyone. I was taking 17 (!) pills a night and I just didn’t want to get up and do anything. Hmmm that doesn’t sound right.
Then I woke up one morning and just thought stuff this. I feel rubbish and I don’t want to, so there! And it was then that I knew I was out of it.
Thank god eventually I was out of hibernation and it was ready to start living again. I had much catching up to do.

Women drivers.
Women drivers.

So first things first, diet, but we’ll perhaps touch on that another time. Suffice to say I miss cake but do annoyingly feel loads better for not eating it.
So hoorah I’m alive again.

This week has been such joy with the kids and hubby, we’ve crammed in so much and I’ve enjoyed so much fab time alone with the kids too. Many people who have had post natal depression as well as the normal type may tell you that when they come out of it they just have no memory of whilst they were in it. I feel like I’ve missed three years, all of little Phoebe being teeny tiny. I think we go into self preservation because sometimes it’s best not to remember those dark times. All I know is I don’t want to be in them anymore. I am now determined to make up for those lost years.

I'll have every topping please.
I’ll have every topping please.
Pizza making, his is just emerging from the oven behind
Pizza making, his is just emerging from the oven behind

 

We saw grannies and grandpas and nanas and granddads, we even saw Ben & Holly (the theatre show). We made our own pizzas at Dominos, we had a picnic in York, we visited a medieval fair, we played in the garden. We cleared out my studio and made grand plans so extending our house to put a room in with sensory stuff for Arthur. We basked in the sun and danced in the rain. We lived and laughed and loved!

Lishy and Daddy
Lishy and Daddy
Father and son
Father and son
Medieval Fair, living up to his name.
Medieval Fair, living up to his name.
This is Arthur with his best friend Billy, his sister Ruby and my little Phoebe
This is Arthur with his best friend Billy, his sister Ruby and my little Phoebe

Just two weeks till our holibobs in Wales now too, whoo hoo!!

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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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Christmas at Castle Howard

Phoebe, Arthur and Daddy Lunt

I think all families have to have a tradition that they do each year which means christmas is coming. Well as we are a relatively new family and a ‘special’ one who has a changing list of things we need to consider (oh yes we are indeed high maintenance and for a change it’s not my fault, completely;)) we have found it quite hard to find one thing that suits every one.

We thought it might be the Santa Express where we get the stream train from Grosmont around the North Yorkshire Moors and the kiddywinkles get there pressies. But due to a few years of horrific weather there and a little boy who doesn’t really want to sit in one place for that long we have ceased that trip. We have have tried various Santa outings and museums, craft days and as wonderful as they all were none quite had what we as an entire family needed.

The scene is set

It’s hard, I have anxiety, Phoebe needs space to be wild like the little Princess/Animal that she is, Simon likes a good walk in the fresh air and do a bit of bird watching, Arthur doesn’t understand waiting and can’t walk too far and many walks aren’t wheelchair friendly. We have to consider his complex needs and his sensory difficulties whilst still wanting Phoebe to enjoy all that she should. And the grown ups need to be able to relax and know their kids are happy and safe. Many many families are in this boat, even without special children christmas is manic and stressful on any day trip. This tradition we wanted to be an event, something that can’t be done at other times of year. And you know what, I’ve decided that we have eventually found it. It’s just for the four of us to enjoy together every year, oh and the other hundreds of people that go there, but lets forget about them.

It was a really foggy morning but it seems to add even more beauty to the grounds

I love Castle Howard.

That’s all really. You’ll all know it from Brideshead Revisited no doubt, but those of you who don’t, it’s a stunning country house in North Yorkshire very close to York. I spent many hours there after Phoebe was born walking in the grounds while Arthur ran his heart out, we picnicked there and played hide and seek by the huge stunning Atlas fountain. I felt safe there, no playgrounds that Arthur couldn’t do so got upset and angry at (they do have one but it’s easy to miss in a different area, it is magnificent but a child with CP generally doesn’t fit in in playgrounds). They had places to buy food, ducks to feed, open space and glorious views, peacocks to chase (not that my children would ever do that;)) and a fab train ride.

So clearly I’m a fan before anything else needs to happen. A few years ago they started doing a Santa ‘experience’ by the fireside and we booked ourselves in. Oh and how wonderful it was. A stunning room with two trees and a roaring fire. Little chairs all laid out in a semicircle for the children to watch wide eyed as Father Christmas came in and told them some stories, sang carols and gave out present. Wonder Phil the wizard had warmed the children up with his brilliant tricks which we all loved, Simon is still figuring out how to do some of the those tricks. The grown ups gazed on misty eyed to see how happy the wee bairns were. All utterly charming and perfect.

Waiting patiently…….

Every year we have been it has been just as perfect, different tricks and stories, so well thought out so even if you come back year after year it’s always give you new delight, but in the same safe, cozy and warm surrounds. The first year we went we could happily queue and take part as anyone would, Phoebe was a new baby and Arthur was just 3. But each year things have changed with his CP and new things have developed. He can’t queue, he can’t cope with people near him, with noise, it’s a sensory overload that frightens him. So every trip out of the house is worrying, you feel bad about putting him through it but now if he could just get past parts then he would love it and anyway poor Phoebe would never leave the house if we didn’t try.

So I emailed CH and I must say I was so touched by their kindness and care that I felt I had to write this. They totally understood how frightened Arthur would be and let him sit in the room before anyone else got there, we had our own wheelchair so didn’t need to loan one. Arthur didn’t have to queue, he didn’t have to wait in noise and confusion and hussle and bussle. He sat by the fire in the dim lit room, he listened while I explained to him what would happen and who he was going to see. We counted the decorations on the tree and we were all calm. Then everyone came in, although I had explained he still found it hard so I hugged him to me and he hid his head, then everyone settled and Wonder Phil began. That was it – Arthur was back and could not stop his jaw from dropping.

Arthur got his present…..

It was hard for him and he did well but without the support and kindness from the helpers at CH we couldn’t have had that wonderful day. If you were in the queue and saw us walk in in front and think it was unfair I understand, you want you’re children to have the most perfect experience and it is frustrating when you think someone is getting more than you, but believe me we wish that we could queue like you and experience things as you do. And because we were listened to and considered my little boy had an amazing day and got a present from Father Christmas just like everyone else and my little girl didn’t have to miss out on yet another thing that comes so naturally to other siblings. A perfect family day was had, the first since last year when we went.

So many beautiful decorations
Just one of the many stunning trees they had hanging around the house, as you do…

Believe me people aren’t this kind usually when we go places, they are rude, look down their noses at you and make unpleasant comments about Arthur being lazy in his ‘pushchair’. You don’t want to know what Blenheim Palace did!

So Castle Howard deserve to have praise heaped upon them. Thank you thank you thank you. And a very Happy Christmas!! xx

Can’t beat an open fire.
Don’t forget to look up.
peekaboo….

 

A Day in the Life of a Craftner (a Crafter’s partner)

So Simon (hubby) had this idea that people might like to read about his life! Who does he think he is, I tried to explain it’s all about me for goodness sake but he went on and on and so I gave in, and this is what he had to say about himself. (It’s all lies don’t believe him…..he’s just an attention seeker)

THE LIFE OF MR LITTLE A (as if anyone cares piff)

Mr Little a and the actual Little a (hehehe he shouldn’t have let me chose the photos)

5.30am The first of the kids wakes up……walks into the other one’s room and wakes them up, screams are heard and the day has begun!

5.33am I reluctantly get up to ensure WW3 doesn’t begin unsupervised. The reason I’m the one getting up and not Marna? She has been up since 2am sewing her fingers off as a dozen customers needed a very intricate special occasion cushion for a specific date.

6.30-8am ish I catch a glimpse of Marna as she frantically tries to prepare as much as possible whilst I’m watching the kids before I’m off to work and ‘Little A’ is picked up for school. That leaves Marna with ‘Little P’ and she demands mum’s attention for 99.9% of the day.

Hmmmmmm my delicate princess. (the one on the right)

12pm ish I check in on Twitter and catch up on Marna’s tweets to see if she’s managed to sneak in a 30 minute sewing session when ‘Little P’ has been content creating her latest Play Doh masterpiece. This is done in the queue of my local post office – I’m holding a large bag or two of orders to be shipped. When the 6 pensioners behind me (who have all queued to buy 1 stamp) realise I’ve got 25 parcels they decide to complain loud enough to each other so I can hear. I look forward to the day that I’m old enough that I can be rude in public and get away with it (that’ll be now then Simon;)) – until then I rise above it (by going a little slower than is necessary)

6.30pm I return home – we tag with a brief kiss and a short summary of vital info (bills, medical updates, that sort of thing). Marna disappears into her workshop for half an hour and I get to police ‘witching hour’ and then we both facilitate bath, story and bed time for the kids. Tonight apparently I am ‘a poo poo head’ and ‘we want mummy’. I check my head for the offending poo without luck and call upon Marna to finish the job I started.

I’m working away in my little haven.

7.45pm I try to make myself useful by hoovering up what seems to be thousands of small pieces of thread from the front room rug – discarded by Marna in the throws of full creative flow over the past 24 hours. I refer to it as ‘rug spaghetti’

7.30pm I cook dinner – yes Dad has gone to Iceland.

8pm-10.30ish Marna works on updating her website whilst eating dinner. I whinge a bit about what happened in work and Marna is excited that she’d been commissioned to do a unique venue cushion, has an order for a family tree cushion and a German magazine will be printing some images of her work – how cosmopolitan! (Actually it was ‘OK’, not Cosmopolitan)

A wee bit of my work room.

10.30pm I go to bed to read. marna stays up ” for half an hour” to work on a few orders.

2am I think I remember Marna coming to bed.

2.30am I stir to catch Marna checking Facebook updates. We agree she should probably sleep.

To watch Marna’s creations bring joy to thousands of customers worldwide is very satisfying. I’m very proud of what she has achieved – and we do try to reserve one day each weekend for the family – I just have to check her handbag to ensure she hasn’t sneaked a half finished small rosette in one of the compartments before we leave for a day out!

Oh maybe it was all about me then *hangs head in shame* I suppose he might be quite ace then, s’ppose and stuff.

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

A party with a little help from my friends

My beautiful girl Phoebe turned two yesterday. We weren’t going to have a party because she doesn’t have many friends, she’s 2! But for Arthur we had a party every year to celebrate his survival and we haven’t for Phoebe, and the guilt has started to set in as it always does with a second child. So Simon (hubby) suggested we have a tea party with a few little friends. Really it’s his own fault giving me the green light for a girly party, it was always going to end in a large amount of pink and very pretty things and ultimately a big bill. Hehehe, he knew what he was getting into when he married me!

So my client brief was ‘tea party’ well actually it was teddy bears picnic but I definately heard girly pink tea party, and I am lucky enough to know a lot of people through Facebookland who I knew could help me make my party, whoops I mean Phoebe’s party, and perfect pink affair. And so I began…….

Firstly the cake. Now I have seen two very different and very incredible cake ladies over the last few weeks and I needed both. So I started with Sugarcube, she does the most amazingly detailed cakes with sugar craft the likes I have never seen before. Phoebe has recently developed a deep love of My Little Pony and since that was my favourite children’s toy I have encouraged it (anything to get her away from scary baby dolls). This made the choice of cake topper easy and look what the genius that is Judith did….

So main cake done but then what about the mummy’s we needed cake and I couldn’t think of a better excuse to get my way and use Daisy Cupcakes, she specialises in vintage style cupcakes. I have been following her page for only a month or two but after seeing her beauties at Christmas  I quickly got on my laptop and ordered the most glorious gingerbread boys and girls to go with her other icing works of art.

So cakes were done but what about the plates to put them on. Since I started my business on Facebook just over a year ago I have been an avid follower and lover of Belle and Boo, how could you not, so when I found out they had started making party goods I was at the front of the queue. Obviously I had already sent out their party invitations and got their thank you notes.

Lastly I had to think of the party bags and many of my lovely Facebook followers gave me a lot of great ideas for fillings. As ever my wonderful friend Margaret from Daisy Dots Boutique came up trumps with some beautiful hair clips for all the girls (and I kept some for myself it would have been rude not to).

And to put these beauties in I used some fab bags from Little Cherub Design. I found her at a designer fair locally and I am so glad I did because she has so many fab printed designs and I’ve got party bags for Arthur’s next ‘do’ too.

And here’s how all those lovely things came together to make my little girls day perfect…..

It’s been wonderful fun playing girly princess parties, but I can’t wait till she starts making her own decisions and showing me what she really loves in her own style and way and seeing what thoughts and pictures are in that beautiful little head. The adventure is just beginning……….buckle up.

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.


Thank you for my first crazy year

It’s that time of year when the wine is flowing when we all get a bit gushy and say the things we should say more often, like thank you and I love you. So I thought I would make the most of the opportunity and thank all of my customers, followers, who are mostly now new and good friends, for all the fantastic support you have given me this year, in my first year of business.

 

It’s all been a bit mad and hectic but wonderful. I have achieved so much, more than I could have imagined and certainly more than expected. My new website it up and running and going great guns. I’ve had some fabulous photos taken by Lyndsay James and Zoe Stewart which have made me so proud of what I’m making. I’ve started this blog which I love. And have worked with many very wonderful people, I can be seen selling on numerous other websites two of the most wonderful being From the Wilde and Daisy Dots Boutique.  And some amazing designers Artwork by Angie and Who Ate My Crayons.

I started sewing again after years of not being able to get anything creative done due to becoming a mum and the day to day things life throws at you to keep you busy. This venture was born out of a need to heal and it has been the greatest medicine.

 

When my gorgeous girl, Phoebe, was born I was unfortunate to suffer from rather severe post natal depression. This was mainly due to the fact that when my son, Arthur was born, he ended up in intensive care suffering from brain damage, so I had ‘issues’. Advice given to me was that I needed to have a creative outlet to ease some of my darker days, and so Little a was born.

I have been the luckiest person in the world in so many ways and meeting so many great people with similar stories and interests on Facebook and Twitter has been a real life line. I am just one little lady sewing in my living room, whilst looking after my adored children and thanks to the modern world I now have a business and a self-confidence that would not have been possible five years ago let alone ten or for my mother, so I am grateful to you all for giving me a chance to shine. Thank you all and a very Happy New Year to you all.

It’s beginning to look a lot like Christmas

This weekend I spent a glorious two days with my in laws at their home near Chester. When I wasn’t frantically stitching Christmas orders at the dinner table with a glass of wine we went out to find Father Christmas. I thought perhaps it was just too early to visit him and start the kids excitement with still five weeks to go till the big day and having the lure of stocking presents dangled in front of them. I mean what if they actually exploded or something I mean it’s basic health and safety surely. Or more to the point I am the one that will have five weeks of constant wingeing from dawn till dusk ‘ me want, me want, me want’, after every advert on TV, in every shop, in the bath, on the school run. Although I can use the good old back up, ‘if you aren’t good for mummy Father Christmas won’t be able to bring any presents for you’. But of course me being such a good and patient mum it’s really the heath and safety issue that concerned me;)

Anyway……….

Arthur writing to Father Christmas, accompanied by his new Ben 10 head torch which is now the ‘thing’ to wear. All the cool kids are doing it don’t you know. (I originally wrote ‘cold kids’ so that shows how utterly embarrassing I am as a mother.)

We went to Blakemere and found Father Christmas and his elf waiting in his post office, he had arrived on his Santa Express with washing powder snow showering us all. Arthur and Phoebe got to write a letter to him and stamp it with an array of solid loud sounding stamps which were a highlight in themselves and seemed very effective weapons (why do my children find things to do damage to and with every where they go). Then they posted them and went through to see the big man himself. Phoebe was terrified but quite happy to accept a present, there’s a surprise, and Arthur had a huge cuddle and made sure he told Father Christmas in his own way (which is by making the weird transforming noise his favourite toys make on the cartoon, he can’t can’t say Transfromer but he can make that mental noise, how does that make sense!) that he must have a Transformer, a big one at that! Obviously he was gutted when he opened the present he received to find a colour in jigsaw (I rather enjoyed it though! I always find that colouring in is wasted on kids.)

Then, whilst the babies were amused on the merry go round, I managed look at the crafty side of the place, they have bead shops, wool shops and basically it is my heaven. I spent a painful amount of money on buttons, pearls and bits to make my Christmas goodies, and I think I managed the whole trip with out saying anything stupid to embarrass myself which is also a bonus and unusual, so a perfect day was had by all really.

One of my Christmas orders. ‘Nice List’ rosette by the fireside.