Hidden Gem…Pearl of the Atlantic

Its funny isn’t it. Losses come in all sorts of ways. Today a blog I always liked looking at, just in having images of beautiful places, had shut down. Gone. Just like that. In it’s very small but big way for me, it was a connection for me, to something beautiful beyond the world I live in. A world that over the past six months has felt the most difficult and awful of my whole life. My daughter’s illness reaching a stage where the possibility of her no longer being in this world was so high that I couldn’t even breathe. Her BMI at the dangerous life threatening level of 12 and seeing her so emaciated, that bringing her back seemed completely impossible and insurmountable. This illness is an absolute killer and it nearly did. What has lived beyond that and most specifically over the past two months has been absolutely horrific. 

Sometimes those images were the things that made me think and inspire me in trying to reach a world beyond. And it felt like it was just taken away. I guess I could google places but I liked the different versions that were picked out. It made me really sad last night in what seems such a little thing. Sounds so silly, but it gave me tiny moments of pleasure in amongst a life that every day has felt so difficult. I guess it says a lot about the life I am living and how the simplest things can make all the difference for me, in lifting me in that. 

I’ve been thinking a lot about my Nan. When I saw my dad he said that she was the kindest person he ever met in life. She really really was. So so kind. A very gentle and lovely person but behind her very tiny and quiet exterior she was so strong. Like a powerhouse strong. I didn’t even realise how strong. You don’t when you are younger. When you are just a kid and haven’t really lived a life you don’t really understand what goes on behind the scenes in caring for and protecting others and what that takes. In being responsible for more that just your own health and happiness.  Especially when you are not sitting at the top of the ladder and everything has to be worked and struggled for.

But as a woman who has had to deal with so much responsibility and so many really difficult things now, I completely see it. Completely see her in all the invisible  and hidden but truly amazing things she was. Things that inspire me all the time as I continually try to find what she had and kept her going. She was the nan who loved watching the teletubbies. Makes perfect sense to me now, as she escaped into LaLa’s Land.  My mum tells me all the time in how proud she is of the person I am and have become but most especially right now. She also tells me that my Nan would be incredibly proud of me too. Something that really lifts me in knowing what happened to her in life and what she went through. Despite the fact that only close family attended her funeral, she was so loved. Soooo loved. The most unflashy and unassuming person you could ever have met in life as she took care of my cousin after his mum committed suicide. He found her with her wrists slashed. The woman who was once so full of fun, my mum told me, but was abused for many years by her narcissistic policeman husband who completely destroyed her. Her son suffering with schizophrenia. I can’t imagine how my Nan dealt with that every day, but she did. And she never moaned or complained. And was always so grateful for nice things with her brothers and sisters and loved being with us. Especially at Christmas when she would drink a little ginger wine and watch some Jane Austin. I absolutely adored her. Remember when I was little and she  brought me a little tiny plastic table and chairs with teeny tiny teddies. I love them and played with them all the time. She always asked after Jerry, after I once told her that she had sat on top of him on the bus. ”Move up Jerry” she said. She was completely down to earth, living on her council estate, but with such a gentleness of class that didn’t really fit in the world she inhabited. And always wearing her little pink jumper and slacks and comfy shoes. Bounding along like she was still in her twenties. I always told her that I loved her but I wish I had told her just how amazing she was. I think perhaps I did without saying it as I stroked her hair and held her hand in hospital and read her the newspaper as she lay unconscious before she died. Never knowing if it was my cousin who had made her fall down the stairs. Even if it was she would never have said. 

She loved to write too. She won a prize for it when she was at school and won a book. Charles Dicken’s Little Dorritt. She couldn’t have been any more Little Dorritt. It is a story of changing fortunes and how those fortunes change people. It depicted the arrogance and pompousness of those who had or found themselves with money but also what happens to some when they lose it. I’ve never been wealthy but I’ve certainly known what it is to lose it all. It made me think of a really lovely girl I met many years ago who was dating my friend. One of the many many girls he dated. He is a lovely fella but he didn’t treat women very nicely. Alot of them he said liking him because he had a lot of money and they liked the lifestyle that he could provide. I think liked him too. He was reasonable looking, interesting and fun. But he often said he wondered how much the birds would like him if he drove a dust cart. There’s some truth in that. I’ve known alot of women and men where lifestyle matters more. Anyways she went on to marry another rich man. But the other day he committed suicide. He had lost it all and was up to his neck in unpaid taxes and so he left her and her three children under ten behind. With absolutely nothing. I felt devastated for her. Not that we were close. She was one of many that I met. But in knowing how nice she was and how completely life shattering this must feel for her. The fortunes of life suddenly shifting and leaving her three children fatherless and her wondering what to do. Far away with no money or security with three children to look after. The other side of what money can do. Life can be very harsh and just like that you can find yourself in a desperate position.

I have thought a lot about how for some it is easier to love people when there is a comfortable and good life attached. But how quickly it can disappear when it’s not. I think me, my mum, my Nan and my Gran missed the boat in that version in all our romantic notions of love conquering all. Maybe it is because we never grew up with money. Although my Gran did but spent her life moaning that she should have married the man with the car. But I still believe in Love conquering all. I married P because I loved him as a person. He didn’t come from money and spent most of his at the pub, in the bookies or going all round the country and Europe watching his team play football. I didn’t come from money either and have never cared about it until i had none and it was all about security and survival. And that was because I had a daughter to think about. I think my lack of care in money beyond the basics was because my dad was and still is very lifestyle over love. I heard it in everything as he talked about his life. 

And actually the only other person I ever fell in love with was for exactly the same reason. I liked him just in who he was. The stuff that sat underneath. I believe that he is more well off than he ever shares. Comfortable in the security provided that allows many choices in life. But I never cared what life came with him. It was only ever in wishing to be around him. To spend my time with him. Just because I loved him as a person.

In fact the majority of  blokes I’ve ever met with money have been pompous and arrogant. As though having money makes them better. And in that they are worth more. In my overall experience of life and people I’ve met I’ve often seen in fact that it actually makes people less grateful in people and things that really matter.  I’ve met so many wannabes. The crowd is full of them. All clamouring for a lifestyle. The easy life. The good life. The life that is bought. But that version has always felt very soulless for me. And feels like convenient love.

But what I’ve noticed more recently through the worst moment of my whole life is that despite how difficult life currently is, how awful it has been and how much I wish things were easier and better for my daughter and me, and how much I cry for all the stuff that has really hurt, I actually feel so much better in myself in the more simple version of life away from the crowd. How little I actually need any of it but how much I really look forward to or really enjoy to the absolute max any tiny thing that feels lovely. Everything good feels really really special. Everything. I don’t take one single thing for granted. And that reminds me of when I was a kid and had I had nothing. But how dreamily happy I was when I carried my goldfish home from the school Fair. I remember lots of people questioning why I gave up my really good job when I had my daughter and did little jobs instead to make money while volunteering as a teaching assistant and running after school clubs for kids dealing with difficult stuff. Would spend my money on buying creative stuff to make it fun or little things for individuals who had shared what made them happy. Like the Manchester United top trumps for the kid who always spent the time there playing football all on his own. Until I would kick the football with him. It made me so happy in seeing him show and share the cards with the other kids. But my favourite thing was having all that first five years with her every day. Where P would work his job around trips to the seaside and sun £9.50 holidays at a caravan park. I loved having teddy bear picnics in the tent in her room and doing the Hokey Cokey in the church hall at mother and toddler group. None of it was flash. None of it cost any money. But it was all really really happy and wonderful. And somehow in amongst this modern worlds obsession with having the perfect life and what “more” looks like I lost sight of the fact that actually my “more” was so much better without needing anything. Finding yourself back to the very basics when really struggling in the worst of times certainly teaches a lot about what really has value and what is just a cherry on top. Something that was given clarity when my dad told me that “getting my daughter back is the cherry on top”. How differently our cakes are made. The opposite in fact. As he talked about his life it was all about what he had done, who he knew, how successful he was at work as he gave me a long commentary of being head hunted by several places and offered more money. And where he had been and that even his shed was purpose built, fully insulated and heated with electricity and by the sounds of it, the size of my actual home. The people that loved him just being cherries on top. I felt quite empty as I listened to it all. Lifestyle over Love. He’s not alone in that version. 

And then I compared it with mine. Where the people I love and care about are central to my cake. They are everything that matters to me. Family, close friends and things in my life where I have felt I’ve made some kind of real difference to a persons life. All surrounded by the beautiful and natural stuff of this world like the sky and the sea and the trees and mountains and clouds and stars and flowers. I could go on. The other stuff just being nice to haves. The crowd just being momentary, jobs being a means to an end and all the many distractions of life being the little bit of sparkle on top. Nice to have but I can live without. But when I have that for a moment wishing to share it with those I love and who love me. My pain only ever in losing people I love. The other stuff is replaceable. I realised in my dad’s cake, I was replaceable. I was just an extra. How can your own daughter just be an extra? A nice to have on top of what matters. Stuff. It made me think of my relationship with my own daughter and also what she shares with her dad. I felt so glad that P is her dad especially right now. He is struggling in it so much but she is more important to him than anything else beyond as he gave up that job in order to be more available. I was grateful for his commitment to what is more important too. When the stakes are so high there is no room for selfish. Both putting ourselves in second place to her as it should be. It has made me realise as I listened to my dad that I’m not less. But that for me his cake, even though on the surface it looked so much better and more sparkly, wasn’t more. His cake was him. And in that all that better felt very superficial and empty. But perhaps for him it was enough. We are all made differently. But it would never be for me. And I also felt like I was worth so much more than being a cherry on top of his cake. And in that moment I no longer felt that feeling of not being good enough. It was a very empowering moment to feel the immense worth of my very beautifully real and substantial and soulful and loving cake. And that despite its squashed and messy appearance it contains some pretty amazing and epic flavours many of which belong to those other beautifully real and substantial people I hold close. There was a lot of peace and closure in that experience as he hurriedly stopped me halfway up the stairs to the departures and blurted out “I love you M. I have always loved you”. Words that I had said to him so easily at the beginning of that few days but had taken him all weekend to build up and be able to say. I took them like a gift but felt happier in him being able to feel and say them. It felt really difficult for him to do. I wondered if he had ever really felt really deep love even though he told me “we always had a special connection. You always held my hand.” I came home with a lot of phrases that he shared with me that made me think about who I am and what I give. I felt really proud of who I am. I absolutely a girl who loves. For all the hurt I have felt through the years in how he treated me and his absence for the majority of my life, I had never stopped loving or caring about him. And maybe in his own way he hadn’t either. He just needed and loved the other stuff more. The crowd of admirers mattering to him much more than his own children. I think he has always just needed to be loved. Not mattering so much where it came from. Needing to feel like he was more. But I saw just as I did when I was a kid how much he struggles in giving it. He’s been married three times now and has had countless younger women along the way. But he said my mum was one of a kind.

For me love doesn’t just vanish. When it’s real and felt inside, it stays there forever. It has its place in your heart. I never stop loving people that mean something to me even if I have walked away in moments in not wishing to be hurt. To some that would make me a fool. But I own my own feelings, and my love is as solid as it comes. It’s just sometimes, when it isn’t reciprocated, you have to know when to let go of hands. I was called bitter once. One of the most hurtful things ever said to me. I think it was meant to hurt me. I think perhaps some relationships are unhealthy when one cares more than the other. But I am certainly not the devil. Not even close. Just different to them. I felt angry at being used as one of many time fillers and distractions in their game of boredom on the way to “better” and in how that impacted on me as a person, my life and subsequently the lives of others. And very sad for sure in losing what felt treasured by me. But never bitter. Because for me they were huge part of my “better”. The disappointment I think must have felt similar to my nans when my mum told me of a similar experience in her life. “She was heartbroken” my mum said. And so was I. Sometimes we have reason to protect ourselves and our hearts and that was one of those occasions. 

Little Dorritt was her favourite and actually it’s one of my favourites too. She could not have been any more Little Dorritt but without the happy ending. But perhaps when we both read it we dreamed and wished for that happy ending. Sometimes just the dream of something is enough to sustain a person when they are dealing with what feels difficult. I see a Robin everyday that sits close in the early morning in my garden. I always feel like she is with me. And I always look up to the same star in the sky at night which is very faint and hard to see but I always find it. She was never a one to be seen by everyone. T

Today is the first day that I have a moment to myself. My daughter spending the day with her dad. It is a moment of respite for me in being so exhausted from trying so hard. But that trying has and is making such a difference as her BMI has now reached 15. Extreem categorty. Needing to get to serious and moderate before making it to a healthly 18.5. But in two months alot has been achieved. I feels right to jut note that. That huge decision in keeping her out of hospital has paid off both physically and mentally despite how difficult that has been and still is. Difficult in a way that is impossible to describe. Life shatteringly difficult. The illness threw it at me yesterday in telling me “you have no life, no job, no friends”. It was right other than the fact that actually I do have a few really deep and meaningful and close friends that I haven’t really had any time to spend time with or talk to. Just little connections via what’s app that mean everything to me especially in the extreme loneliness of being in such a situation where I don’t have time or energy for any life beyond. Today I plan to catch up on a little sleep if I can. But those little messages have been the difference in not feeling completely alone in it. Kindness is such a beautiful thing but especially in a moment like this. The moments that I have felt kicked when I was down hurt me so much. Why would anyone do that? i have thought. I’ll never really understand that. It’s a source of sadness but one I am trying to ride over. Always reminding myself of who I am as a person deep down inside. But when you are fighting for something so much bigger you can’t feel it. It’s a weakness that you just can’t afford. But I know it is there and it really hurts me in the moments when I feel really tired and lonely. Eventually in better times to come I hope it will not hurt quite so much. It’s so much easier to move on when you can move. But I always believe that we will reach that “better” eventually, despite the last couple of day being really tough and like a few steps backwards. 

But for a moment and through the tunnel vision we did have that moment of better. A glimpse of what life can be if we keep climbing. Something that right up until that morning felt undoable as the illness kicked out in telling me that she didn’t deserve it. Oh she deserves it. She has always deserved it in being such a wonderful and kind and loving and caring human. She’s just had to really fight with me for it while P has stood like a back up in helping me. 

It began a few weeks back with a trip together to the moulin rouge with L&M. I thought we wouldn’t get there. Her hands round my neck again in the illness not wanting her to eat before we left. Trying to ruin it for her, by wanting me to say that she didn’t deserve to go. But I ignored it and eventually got her to eat. Knowing that the illness would win in spoiling her happiness and then being able to provide comfort by not eating. . I know how it works. Its hard to cement the boundaries in that. But I took her and her gratitude and happiness in making it there created a sublime happiness for me as we sat and held hands as she ate a little ice cream in the interval. It can be done I thought.

And then last week that tunnel vision took us to a beautiful island in the Atlantic despite the illness”s last ditch attempt to tell me it couldn’t be done. It could. It was. As just  the two of us took to the sky and found ourselves in a peaceful, simple, gentle and naturally beautiful island of sea and tropical mountains in all its most natural god given beauty. A place where gentle and warm and kind and friendly people lived. A place that felt like a pre pandemic world in all its simple ways of living. A place where without a phone to check messages or social media she told me “I don’t feel alone here”. An epically life altering moment as her mental health improved ten fold. As she felt like a person again. A person  who ate two pain au chocolats for breakfast. Where she adventured in cable cars and Japanese gardens. Where she swam in the sea and trekked through the mountains high up in the clouds as though we were in a tropical Jurassic Park. Where we bounced around in the jeep stopping at waterfalls and swimming in natural volcanic pools. Where we found ourselves entertained in cabaret at the Ritz by a former moulin rouge dancer of the past and danced together before watching the fireworks over the sea. And where she had her little Annie moment (as she called it) as we walked into our hotel room that made her feel like she had arrived at Daddy Warbucks house. “I feel like a rockstar”. 

I couldn’t believe our luck again in getting something so wonderful on a budget. I know how to find a super bargain. Years of practice I guess. Making those pennies stretch for a little moment of sparkle and luxury. but never have I ever seen so much gratitude in a weeks holiday that was struggled for in every single possible way. Where for a moment the illness relented a little and was quietened as we spent that time we had been missing together. Just the two of us living an adventure that as our sign says “will last forever!!!”The most perfect and magical place to be in that very moment. It couldn’t have felt a more perfect place to be in that moment. It had every simple element required that made us feel safe and comfortable and home on the first day. it was like we were meant to be there. Destiny!

Still having to manage things around it but so much easier in such a peaceful and beautiful environment where everything and everyone felt so kind and genuine. A very different feeling island to our own. Where the majority of people lived very simple and gentle life. we loved absolutely everything about it there.

The horse Funchal that I placed a tenner on a couple of days before, that won at 9-1 giving me the sign and a little extra cash to take that leap of faith despite the illness’s attempts to sabotage with continued aggression especially the night before. P”s concern in me being alone far away in that and saying that I shouldn’t go. I queried it right up until the moment we left. Saying that I didn’t want to take any more risks in life but sometimes you have to. And just like keeping her out of hospital it felt like a risk worth taking in trying to help her to climb over this illness and find her way back. Taking this leap of faith because I trusted and believed in her.  Feeling that if I could get her there it would be a game changer. A new hopefulness for better. A better that feels worth taking a risk for. And to not go would give the illness more power in providing a reason for wanting that dangerous comfort. The illness hasn’t gone away and now we are home we are feeling it more again, but her trust in me as her mum is what often sees us though. And every little bit of progress means everything to me. If I say I’ll try or I’ll fight for it, I always mean it. No half measures.. Come what may! 

And it was absolutely worth every drop of fight. As just for a brief moment we found ourselves in a place where we both completely fitted without needing to fit. Where she didn’t feel Alone. Where life felt very simple despite the complications of this illness. All physical aggression subsiding. 

When I told the young cheeky fella who drove our jeep why it had become our favourite place he told me “yes it is the best island ever isn’t it.. and the people here are all really lovely. But you’ll find that the higher up the mountains you go the more lovely they become”. 

Words that have stayed with me ever since returning. We still have such a long climb but just for a week Madeira made ir a very happy girl which in turn made me a very happy if very tired mum. It’s the most grateful I have ever been in life in seeing someone smile and feel so happy and not feel alone.

An adventure that she said has been her favourite adventure ever. I felt it too in all it’s work and effort. An adventure that money paid for but the feeling created was a shared love of each other in the simple and natural surroundings that we both really love and value. Providing the simple things that really matter to us in all its completely natural beauty and with a little bit of sparkly cherry on top. It felt so very special, so very perfect without being “perfect” and left us feeling that Truth Beauty Freedom and Love still exist even amongst this illness 

Couldn’t have asked for anything more in that one week that provided  a moment of real happiness, and motivation to want to get better, before the battle recommenced. 

Hang tough with me Hidden Gem. We will make it to the top of this mountain. I believe in you!

❤️

First a mum, always a friend!

❤️

The first time that my girl put her hands round  my throat felt really scary and horrifying. How could the gentle person I know do such a thing? She would never and has never hurt me in the past. I always remember that I’m not dealing with my daughter. I’m dealing with an aggressive illness within her. She appears in tiny moments in between food but is  being suffocated behind this illness. An illness that is absolutely raging. Anger and aggression very common in this illness and finding a better outlet for it an absolute must. My duty of care to her and me in keeping us safe is just as important as helping her to eat.  As her weight very slowly increases her mind  will become more rational but it’s anger and aggression will still be there in not wanting her to get better. It hates weight gain. Pushing her back the other week before I stood up even stronger. I will not let it destroy her. Which makes me it’s number one target because I am the enforcer of the food plan but also the safe place to let it loose. It absolutely has to be let loose. Before this illness, any frustration would have been released in exercise. But she isn’t allowed to do that. A bit of yoga is ok and helps a bit but it’s not enough to combat the aggression and power of this illness. No matter how mindful she is in that moment. She tries so hard to control it when really she needs to release it every day in every moment rather  than letting it build up to a hands on a throat moment. It’s work in progress. But very important work which will also take time as I remind her that physical aggression on herself and me isn’t acceptable. Taking time being a must but isn’t always that easy with appointments and fitting in all the meals. I can take it while that work happens but it’s not pleasant. And sometimes it gets to me. I’m only a human and a very gentle one at that. I don’t wish or deserve to be anyone’s punchbag. In fact sometimes I wonder what I ever did to deserve so much difficulty, challenger and life crushing things. I’ve never hurt anyone in my life. Always been a protector of others. Never played games. Never used people. whatever did I do in my last life?!

I was just a very happy dreamy girl who found herself feeling very alone in life as others struggled to deal with their own challenges in life. But I always have tried to help. I don’t desert people in their moments of need. It’s just not my way and never will be. Letting go of the hands of people that hinder not help or that don’t treat me in a way I deserve. But more so, in those who simply didn’t care about me or have used me. But with her it is completely different. Completely unconditional. And I am standing like a giant for her in helping to get her through what this is. She certainly doesn’t deserve it. Always a kind and beautiful and lovely person who has always looked out for and cared about others but has been hurt directly and indirectly by all of the difficulties of that chapter. Trying to protect her through it all. And all by myself in that endeavour during that time. But it was too much. I am only human  and it affected me so much too. The life that happens and the life we make happen having such devastating consequences for both her and me. A few times I have thought about the hospital admission but we get through those moments and then she eats. And I take some heart and encouragement and motivation just in that. Because protecting her is my number one priority. No battle comes without scars and they are building up in me but I’m so much stronger now than I was a year ago. No time to be her “friend”. It’s all mum. Even though I know she misses what we share. As do I. But unfortunately I can’t be everything. What I’m doing is completely exhausting and constant. I have absolutely no life beyond. There is no time. I completely miss her and that time with her too. But again, I take comfort in those little moments when we cuddle or I stroke her hair or we do something nice together just for a moment, and also comfort in the fact that her dad s the provider of cuddles in big safe arms, and little walks and chats after a difficult moment. I don’t know how anyone could do this on their own. We are having to be in this together. I feel her dad’s respect for me in what I’m doing as he bought me tickets for Einaudi In October to say thankyou. In remembering how much I had said that I loved it when I went to see him in Milan on my own. That feels like a million years ago now but reminds me of the happy dreamy girl who sits beyond this warrior. I have both in me and everything in between. I believe now that there  is nothing I couldn’t do if I wished to. It’s only life that prevents that but who knows what might lie ahead of me. And thinking with my daughter that sometimes being a real friend is being there in the absolute shittiest of moments as you fight side by side with them to get to a better place. Never giving up in that. I’m absolutely her friend even if a foe to this illness. And she knows that. I’m a tough cookie despite external appearances and have learnt how to protect myself and her in this. I tried my hardest to protect her in all of this. And I know that I always try my best. Always! 

I have always  tried for others but sometimes I lose. Often trying harder for them than I do for myself. Because for me people I love, matter more. I’ll always be ok. I’m a survivor. And there is no failure in trying. But sometimes I need others to try a little harder too. Never ever asking for what I’m not prepared to give. Some people not having that capacity. And that’s ok even if I have often felt let down. But never let down by her or those really close few that hang in there for us. Their resilience and steadfastness feeling inspiring to me and making me love them even more. I certainly have needed to develop a thick skin in this. All my own sensitivities thrown out right now. My sign in the bathroom says “the bravest thing you can do is just to be yourself”. In fact the bravest thing I’m doing right now is helping  her to to understand who she is . And every weight gain or bone that is more covered makes me feel like we get another step closer to that. I have evolved a lot though that chapter but massively in the past six  weeks. Seeing myself very clearly without others judgements or interpretations of who they think I am, as they place me in a designated box. Sit in your own box. I’m a wild horse. I’m not meant to contained. Definitely feeling everything that I’m really made of. That 11 year old girl would be astounded. 

I’ve always been pretty calm. I’ve learnt to be. It’s why I’m quiet a lot when others kick off. Usually about really trivial stuff. As I sit there thinking “you obviously need something to worry about”. But this is whole new levels of calm and patience. I feel like I should be more angry myself. But I’m not really. Just in little moments. But really I just feel the  sadness of it all. But at some point you will definitely find me or actually not find me standing on top of a mountain in a very remote place, screaming it all out. Because I have no wish to my take anger or frustration out on others. We all make mistakes. I made a huge one six years ago. The consequences of that have been so far reaching that I often wish I could rewind time. But I can’t and I am a product of so many good intentions that were destroyed both by life, circumstance and the selfishness and carelessness of others. But in the end I was the naive girl that allowed it all. I definitely will never make the same mistakes again. Wishing often that the girl sitting on a barrel had just got up and left. But how was she to know in all her open hearted cluelessness. Just being so happy to be there, make new friends and a with a wish to not feel all alone in this life. But to be able to share in it, just as her. Rather than just be all the things that she had to be for everyone else. Was it too much to ask? It appears it was for the girl who didn’t have the privilege of a safety net and lots of similar opportunities beyond. This was her moment. Her adventure. Her “better”. And the result of it all, left her completely crushed. Stolen dreams that will never really be appreciated as much as they would have been by her . Just another little opportunity amongst many. How they must have laughed at the silly dreamy girl in all her naivety. But at least she followed her heart. I followed MY heart. And showed it at every turn in all its childlike magic. And had the realest and truest of feelings. Just in that I will always feel really proud. Life and the actions of others conspiring together to ensure that she ended up right back where she started. Worse off in so many ways but better in the ones that really count. The stuff that sits within. I never look in the mirror with self loathing. Only I know why I made every choice and decision. All of them in protecting my girl or others. Other than one which was based on love. All those decisions in protecting her felt completely “right” even if they weren’t always right for me. But I sure do know how to build beautiful castles in the sky. Even when life is really difficult. I built them for a moment and they felt very real. Well at least to me. 

But now  I just want as peaceful an existence as is possible (right now not very possible at all other than when I’m sleeping) but in the future a totally peaceful existence. Doing all the things that I might love. Looking  after some of my wants and needs whilst still looking out for others. I’m all done with difficulties and challenges and aggravation and games. I was totally ok before it all and I will be again. Still often feeling very alone in this world in not being able to share the very basic version of who I am inside. Perhaps I need to get a dog. I hear they are very trusted and loyal companions that only require love and a little attention. A little like me really. Just have to get through this most biggest of challenges first. Anything beyond is pipe dreams right now. And no idea how  long it’s gonna take. I’ll spend the rest of my life trying if needs be. Because I’m completely committed to her. 

Missing the parties of the weekend in my continued endeavours. I imagined that the happy dreamy girl would have tried to bake a squashed Victoria sponge and shared it with those who didn’t care much for perfection while downing a few Proseccos. Instead I raised a cup of PG tips to the dutiful Queen while giving a nod to the Queen of Hearts Lady Di. Thinking how she also suffered with an eating disorder. A beautiful and kind and gentle woman who also evolved with life and challenges but fundamentally just wanted to love and be loved, look after her boys and help others. Inspired by them both in their very different ways. And reminding myself that you don’t need to be royalty to make a difference. I’ve always been a  stand up girl  and when the time comes I will be that same dreamy happy girl again. I can hear her much more clearly again inside. Just need to get my girl back to hers first. 

You can’t keep a good girl down. See how my little heart is growing again. 

❤️

Gratitude

Every morning when I wake up, the first thing that I feel is that I’m so grateful that she is in the room opposite. Soooo grateful. I love her so much. She is Irreplaceable!!!! Protecting and helping her is my whole life right  now. 

The first thing I think is how can I be better for her today. And then the day begins. As I get up and get ready to repeat but with little adjustments. The plan doesn’t change but the day never goes to plan and there isn’t much time for anything beyond. But somehow we find our  way through it in all the delays and incidents. Every day looks different in small ways and sometimes bigger and tougher and every now and then, when a full scale military operation takes place, we get a bigger version that allows her to be out somewhere. It’s hard to do. We couldn’t do it every day but with planning has been possible. Working the supplements around it because she doesn’t like taking them out as she feels embarrassed. But it is those supplements that have kept her alive and out of hospital. It is a constant battle in this re-feeding stage but the doctor telling us that she now feels more hopeful in our version even though she is still in a very serious condition. I could have cried but I didn’t because I can’t show any weakness in this. Any feeling that we can’t cope would leave them reconsidering. I am coping. Just! P is struggling more. I feel his frustration which he finds hard to contain sometimes. It is tough. I knew it would be. He didn’t see the version so much last year. He wasn’t really in it at that point as I dealt with it mainly on my own. Her condition much worse now. It is upsetting. I feel it. But I’ve learnt now from experience and I’ve had to toughen up. Because this illness eats you alive if it senses your weakness. I am hiding mine in most moments but sometimes it is so bad that we all end up crying together. It has also required me to build a barrier around myself in order to protect myself. I can’t afford to be upset by anything or anyone beyond while dealing with this. Needing to be a giant for her that is totally in charge. Taking no shit right now. I will return to my former gentle soul when we have kicked this illness into touch. No time for a dreamy version. It’s all too horrifically real and important to run away from. And a lion heart is required. But I do feel the huge sadness inside. Sometimes overwhelming sadness that I let out in an ocean of tears that have accumulated over a couple of weeks. But only when I’m on my own. It’s impossible not to feel sad when I think of who she was before and what this illness has done to her. True grit required in this daily slog. And keeping emotions in check so that I can keep on ploughing and replace all emotion with total rationality. 

I’ve never been so rational in all my life. Researching, finding what helps. BEAT and MIND being best friends  for me in being able to to chat things through with people trained in this illness who understand it, seeking legal advice and advice for carers and just generally hearing those volunteers who care as I tell them what I’m doing and they give me a lift in letting me know that what I’m doing is everything they suggest. And always ending with telling me to take care of me too. No time for that although I always put on a nice shirt and earrings every day so I feel like a put together human. I need their care  sometimes as well as reassurance as I question myself constantly. Not in that “self doubtful2 way although in moments I do,  but more in a healthy “questioning in what I’m doing” way. To reflect daily on her, her progress and what we are getting right or wrong. It’s also just a sign in how much I really care.  P looking to me for answers. I don’t always have them. It’s trial and error and trying my best. Something that is a massive part in how I’ve lived life and especially in relationships. Only ever giving up in those when I know that same care isn’t reciprocated. P thanks me every day. I don’t need it but I’m still really grateful for that because the  pressure to carry it all feels absolutely immense. I’ve been through a lot but this is something else. But I also finally see and feel my own strength. There is nothing feeble about me when there are battles to be fought. Especially when it comes to my daughter. When I think of all the times that people have talked down to me, or seen me as being weak I think to myself, they don’t actually know me at all. Talking strong and being strong are two very different things. I feel like both right now. 

Those bigger moments in changing the scenery really help in her feeling that she is still part of the world beyond and more than just  an illness that has taken over her life and everything from her. Everything except us. And none of these little and bigger things would  be possible if she were in hospital. I see how they make such a beautiful difference for a couple of hours. A girls holiday that has been planned for ages now in major jeopardy but not giving up on it until we get to it. Either another disappointment for her awaits or something very wonderful. I’m striving hard for wonderful. Properly striving with tunnel vision. Wishing to make it happen for her. And I remind her of that every time I push back at this illness and ask her to fight harder with me. This morning being a prime example of that. I know that she is trying so hard. She is epic. I see how painful that is for her. I tell her how incredibly proud I am of her every single day. But sometimes it is so powerful it requires her to fight even harder. Nothing in this is easy not even one little party ring. 

I also push back at anything that doesn’t help her in this illness. Always polite but I don’t have time to people please. Challenging versions that hinder. I’ve ruffled a few feathers in demanding more. Not caring what they think of me or what their assumptions might be. I imagine controlling and overly protective mum or colluding with an illness as I was told by someone in a condescending way. I’ve never been controlling of her, she’s had so much freedom in life. Maybe too much freedom that when all those controls came in she didn’t know how to deal with that. But damn right I’m protective of her right now as any mum  would be. She is at her most vulnerable and having a person who knows and understands her, in her corner is a mums job. Sending her to nursery, school, clubs, uni and worrying like any parent, but always feeling that she would be ok. Like when she used to get the tube to Central London on her own when she was 12. I would ask her to text me when she got there and when she was leaving to come home but I didn’t want to stop her from doing things she wanted and enjoyed. Encouraging her independence and holding my own worries in her being in a big place on her own. She found alot of confidence in that and knows every tube line like the back of her hand now. Feeling more confident there than in other places. But protecting her from a version where she would be alone and scared and vulnerable. Yes I absolutely went into protection mode. And certainly not colluding with this illness now. I have all the battle scars and bruises to prove that. I’d rather she hate me than lose her life. But I see the big triggers and I try to remove them and replace with alternatives. It makes the job that bit easier. Nothing ever being personal. Just sharing in what I know from what she shares but doesn’t have the confidence right now to share beyond. Being a voice that is being heard as I ask for what she needs. As any parent would in a moment they are just one of many patients. Standing strong in her not being overlooked or getting a lesser version or a version that hinders not helps.  We are a family who fly under the radar because we don’t like agro but in this I’m not scared or intimidated in demanding better for her. I pick those battles based on what difference in makes to her and her recovery. And when those things are taken on board I’m really grateful. I’m much better in fighting for others than myself. And I’m fighting for everything and replacing or adjusting what doesn’t work for her or isn’t being provided with versions that I have found through my research. The small details are everything and one size does not fit all.

“Community care in this illness being the best version.” The doctor of the hospital she would have been sent to was quoted as saying that. So I’m trying to fill the gaps of what isn’t available in the outpatient version. They are fantastic people doing an amazing job in something so difficult and I’m so grateful for their support. But the funding isn’t there and they can’t provide everything required. In seeing this illness first hand and the sheer awfulness of its effect on a person, it highlights how poor our provision of community care is in this country. Hospital or Less. And this is a growing illness. I’ve heard parents of kids as young as 7 who are fighting it. I read an article written by news reader Mark Austin whose daughter suffered at its hands. The journey of (as he described it) “the pushy journalist and his A&E wife” as they helped their previously healthy and happy daughter. This illness affecting girls and boys of all different ages and backgrounds. Always seen as an illness of the white middle class. The most comprehensive treatment coming at a high price but not necessarily the best option or affordable for the many and the NHS version underfunded which means accessing a lot of the things required, means being hospitalised. The pros and cons in that making it a really difficult choice for parents and privately funding  the missing elements from an out patient version,  an absolute necessity. What I’ve noticed at the outpatient clinic we go to twice a week is that contrary to that stereotype of it being a white middle class illness is that I’ve seen many Asian, Black and White kids and none of them are dripping in money. What they all have in common is being very thin, very vulnerable and very sad. This illness is like living with a bully inside you. It leaves a person feeling alone, isolated and worthless. 

https://www.google.co.uk/amp/s/www.dailymail.co.uk/news/article-6220271/amp/MARK-AUSTIN-recalls-horror-daughters-anoxeria-battle.html

I’m learning more every day and using that learning to try to be better for her. Not afraid to see my own faults and mistakes and lack of expertise. And not proud to ask for help in what I don’t know or where I need more support. It’s hard to find time for everything. Managing the basics is a full time occupation. But always trying trying and trying some more. It is tiring, scary and difficult. So much so that last night when I was completely exhausted (the past four weeks catching up with me)  I started to pass out as I fell towards the glass coffee table. P caught me before my head hit it. And for a moment I heard my daughter shout “MUM!!!!”. This is so hard. Completely shatteringly hard. But I can’t stop. I won’t stop. You would have to have me sectioned. As I keep pushing for every biscuit, every yoghurt, every bagel, every jacket potato. Everything! And join her in them all. The amount I consume being way more than I need or want or is good for me but I don’t care.  Doing every single thing that helps in raising her weight. Trying to get her to a place where she is able to hear herself rather than an illness that tells her that not eating will make her worth something. She is worth absolutely everything to us. My life falling away into something I don’t care about. When she is well I will self care. The only thing that has any meaning for me is her life. I’ve had one. She is just starting hers. And nothing will ever stop me from fighting for that. Whatever it takes. If you want to know what unconditional love looks like then here it is covered in bruises. Doing whatever is required to get her to the other side and in amongst it sharing in every ounce of her pain. Preferring her to hurt me than herself. Protecting her with all my might but last night just for a moment I had run out of might through complete exhaustion as P stepped in. 

I got up early yesterday  to finish another essay that would make her feel better in still being “in it”. If I could dance like her too I would do that too. She was devastated after putting herself through so much and being unable to complete. I don’t care about any of it. What do any of these essays ever prove. That you can write an essay. But she cares. It was her life and her purpose. And if it matters to her and makes her happy then it matters to me. I would put myself in her place in a second if it meant that she could be ok, not worry or feel sad. All I want and need is for her pain to subside and I’ll do anything that creates that. Life a full of so much bullshit. I am so grateful for every single tiny moment that her pain subsides . And when that happens the world lights up for a moment. 

Feeling so much pure Gratitude in everything. Realising that my wants and needs are very simple, even more simple than I ever realised before and needing very little from the world beyond. Just those close few that hang in there with me because they care. L like a life saver in those couple of little walks over the last month when I have just rested for a second. Sharing but it’s hard to really describe what this actually looks like every day. Her wonderfulness In watching and listening to things that help her to understand it more and sharing those things with me. Wishing to help. She helps in just being her and being my friend. Knowing she is out there caring. As do my other close few. Not having time to really chat or see people but knowing they will still be there when I can. Knowing that they care about her as well as me. And understanding that I haven’t got much to give beyond. But they will be the people I will want to spend my time with when she is better. Not the good time crew who are only interested when you are providing what they want and need. I feel so grateful for those solid and long term relationships that are made of more. My daughter said to me that you find out who your friends are in moments like this. She is absolutely right. I never needed the crowd but even less so now. It’s all about the individuals for me and if they really care. That’s the community I belong in. 

No time to feel all the emotions so I compartmentalise all the sadness, heartache and sheer awfulness of what this is. Reminding myself of others out there who are battling in their own versions and trying to help those they love,  survive and survive it themselves. I am lucky. I have a safe home. In that I could not be more grateful. My love of the simplest of things coming into its own. Listening to the birds singing as I sit in my garden in the early morning before she wakes. Looking up at the clouds. I’ve always loved that but it is a proper highlight of my day.  Love it! My forest garden bubble coming along a treat. It’s going to be so naturally beautiful. The extra practical help being given in that is appreciated so much by me. This bubble suddenly looking so much bigger and even new real grass will be put down so that the daisy’s have a more beautiful bed. The kindness of others in going the extra mile is not going unnoticed. This forest garden bubble is beginning to look pretty special actually. Like a snippet of the forest being brought in. Everything about it feels natural with some child like magic in vegetable characters and a ladybird and buzzing bee solar lights to be added. Collecting magic where I can. And with a brand new shed round the side I have somewhere for the bikes to live, waiting for when we are able to use them again. I look forward to rides along the canal and in the forest with her. They will feel so very special. I believe that we will have them. 

Not working now as I take care of her full time. They are gearing up to give me the push from my job. Last year being given an exceptional award but in not being able to meet their wants and needs because I’m needed elsewhere I am no longer desirable. Join the club. But there are things of life that are just more important. Reminded that in this world, no matter what you do, how hard you work, how kind you are, or how much you try… you are only a someone to those who really love and care about you. My close few not caring  that I have nothing much to offer. No big house, no place in the sun, no celebrity friends, or rich family or acquaintances all round the world, no big contacts in high places that open doors, no fancy parties and barby’s with the cool set crowd, no fancy job or lots of money that makes me the kind of friend that is worth having. Just me. A me that truly cares. Only ever disappearing when that care isn’t reciprocated. I’m so grateful for those people who do truly care and still wish to be my friend despite being undesirable. I’m planning on having a “Chocolat” inspired soirée in the forest garden bubble  when she is well enough with all those few close individuals who have hung in there for us. Most of them strangers to each other but all very special to me. My connection to them in love. 

But most especially I’m grateful for the moments when my daughter looks peaceful. The moments each night when I tuck her up in bed, when she and I are so exhausted from battling, and I stroke her hair just as I did when she was a baby, as she slowly drifts off to sleep. Sometimes the illness not letting her rest but I fight with it more in stroking hair until she falls asleep and is free in her dreams. I just feel so lucky and grateful that she is still in this world. Grateful  that she is my daughter. Grateful that she is here and not there. So damn Lucky and Grateful. And so very grateful for her night time peace. 

There are many many many moments in every day when this illness feels completely insurmountable. Feeling the constant pressure in helping her to keep raising her weight as the illness tells me “look at me. I’m so fat”. As I look at her and see a fragile and tiny figure who looks so sad against pictures of healthy versions of her looking so happy. This illness really is a monster that destroys a person and their life in every possible way. They call it the loneliest illness. Trapped inside a bully. Taking away so many things that we are told to do when we feel down or stressed or anxious. Trying to find other replacements or distractions as much as possible. But the illness never resting until it gets it’s own way. Until it completely destroys every part of her life. It doesn’t give a shit as long as it is in control. It’s aggression in that is gradually getting less as weight increases but it  still comes out at some point during the day. Seeing her hitting her head is heartbreaking as I grab her hands . I’ve had to properly toughen up. Sometimes I have to take a moment to cry on my own. They told me this stage would be brutal. It really is. In hospital they would Medicate and put her in a decompression room until more docile and easier to control. But releasing this rage in a safe place feels hard but necessary. I would not wish for her to be alone and scared  in that. We find our way through these difficult moments and then after I hold her tight in cuddling her, stroking her hair and reminding her how much she is loved. They also say that it can destroy your relationship. But I can separate her from the illness. And nothing will ever destroy my feelings of love for her. No matter what the illness throws at me. I think I’ve felt it’s very worst now.  

Finding some support in an expert therapist doctor with lots of experience in trauma and eating disorders and the various specialist therapies to deal with that. It was a battle to get her there. I’m hoping it will help. Again I can only try. Researching for a while to find her and luck in her being near to offer face to face. Feeling confident from our conversations in her knowing what she is doing in this with all her psychological experience and knowledge that matched her credentials. Needing to feel that she is in really safe hands. But providing her with autonomy and a safe and confidential place to share what she is going through. There is still such a long way to go but every little step forward matters. This was an enormously brave step for her. I find focussing on those individual steps the best way to deal with this. Not thinking about what others are doing or what the world looks like beyond. Just keeping my eyes on what’s right there in front of me. My thoughts are very small and that helps to keep me up. But I love hearing about the things that are making my closest people happy. That also keeps me up. There is no time or room to be down. And I have so much to feel grateful for. Especially those  moments when she feels at peace and we are able to share little moments of beautiful. Little moments that are like snippets of a life we once had. A candle lit each night at dinner that reminds me of my faith in her and us. As I go to bed remembering why I will get up again tomorrow and keep getting up every morning and fighting for her all over again. 

Because she is completely worth it. Completely!!! Nothing in life or this world being worth more to me. 

She is my Treasure, my Heart, my Love. 

And I’m so grateful to be her mum.  

❤️

“Let the beauty of what you love be what you do” .. Rumi 

We fight, even against insurmountable odds, because sometimes we win….Billy Parish

Courage is finding the inner strength and bravery required when confronting danger, difficulty, or opposition. Courage is the energy current behind all great actions and the spark that ignites the initial baby steps of growth. It resides deep within each of us, ready to be accessed in those moments when you need to forge ahead or break through seemingly insurmountable barriers. It is the intangible force that propels you forward on your journey… Cherie Carter-Scott

And whenever you encounter a problem, no matter how insurmountable it might seem, there is one simple response that should be ingrained in your behavior: Never give up…. Stedman Graham

The best way to move a mountain is one stone at a time. Nothing is insurmountable if you take one step before you take the next…. Debbie Shapiro

There is no failure except in no longer trying … Chris Bradford

its not in my nature to go down without a fight even when things seem insurmountable …Suzanne Collins

“About the only value the story of my life may have is to show that one can, even without any particular gifts, overcome obstacles that seem insurmountable if one is willing to face the fact that they must be overcome … Eleanor Roosevelt

Faith

For the second week my daughter gained 0.4 kg. That’s 0.8 kg now in total. It doesn’t sound a lot but it means everything when I think back over the past 2 weeks and how much we have had to fight for that. When you have to really “fight” for anything the levels of gratitude increase in a way that “easy” just doesn’t achieve. The more I fight for someone I love, the more tired I get, but the more grateful I become. 

When I think about what that last chapter looked and felt like and how hard I found it, it now feels  like child’s play in comparison to what this is and what my daughter is going through and what that also looks like for us as parents. There is nothing worse in life in seeing your child unwell. Any anger or bad feeling towards anything or anyone that has hurt me in different ways through the years has just fallen away, faded and disappeared. Just left with a small feeling of disappointment  and some sadness. Because none of it matters anymore. I have lived and learnt as they say. Any version of “bitterness” being replaced every day by more and more compassion and care and love. And strength to fight what does matter. So that I can feel the peacefulness of basic existence within a tornado. Allowing any other feeling beyond sadness to just drift away and be replaced by every positive and hopeful and beautiful version in this quest to help my daughter do the same. 

Watching a person I love suffer so much and have to really battle every day can’t help but humble me. Completely. Her young strength being such an inspiration to me. It leaves me in awe. I wish I could take it all the pain away from her but instead I have to watch her battle and try to be a soldier in that with her. 

Every time one of those very close few give me a little shout out in sending some love or a hello I’m out here, or an image or just a few words of positive thoughts it really helps and is appreciated so deeply by me. Mainly invisible other than those tiny moments of connection. Needing to be ”more” as I build my strength back up each day. Finding it mainly from within but with no human contact beyond home, local shopkeepers, NHS staff and the short walk I took with L in between a meal the other day, those messages provide a boost in just being thought of and cared about. And not alone. Needing it more than they realise in some moments in not having energy or time for absolutely anything else beyond. Other than journaling in order to keep myself together. 

14 days ago being told my daughter needed to be hospitalised. Her physical condition being very serious and life threatening. A bed waiting for her 4 days later and a mental health assessment under the mental health act being  invoked at her refusal. I can’t even describe what her devastation looked or felt like. A complete melt down of such epic proportions when we got home  that I wondered how we would even make it through that night. The previously hopeful but very ill person taken to the darkest of places just like that. Her distress was like nothing I’ve ever seen in her. Like a regressed and scared child. 

“Please don’t let them take me away from here. I will be all alone again.”

My despair in that moment was like nothing I had ever felt before as I was left wondering what the hell to do in hearing her for the first time ever in her life saying she no longer wanted to be in this world if they put her there. A thought that had never entered her head before that moment. If this illness does not kill you from starvation it has the ability to take you by suicide. The trauma of that moment leaving her at her lowest ebb. Her weight so low that they felt they had no choice. At the top of their list of critical patients. There is a long list for those beds and a group of experts decided she needed one.My heart dropped to the floor in trying to figure out what to do. Physical against mental health. The pressure in working out what was best. All those previous challenges and sadness paling in comparison. 

All night I sat alone with it. Her ambivalence to the seriousness of her condition giving them no alternative. Seeing her changed as a person in that one moment. The trauma of that one statement affecting her so badly that she could not cope. Never had I felt so helpless in being able to help other than holding her in my arms as she shook with shock. To see someone so distraught and scared. And yet somehow in between it I made her have her dinner. Not giving up. I don’t even know how in amongst the chaos and distress and devastation. But just for a moment she sat at the table with us and ate it. Completely numb.But I was left with a feeling that if I was able to still help her to eat in that most distressing of moments then I could do it beyond. Knowing that I had to fight even harder for her. To find everything I had to help her find hers. Everything!And next to me her dad who finally got it too. Completely distraught too but he finally got it. 

As I sat on my own in the early hours going back and forth in what was best, all my instincts told me that it was the wrong decision. Despite my huge concerns for her physical wellbeing. Absolutely emaciated.Trying to be completely rational in such an emotional moment. But I know her in a way they don’t. And seen her mental health improve in being home over those couple of weeks. Little by little signing up gradually for what was required. Baby steps in feeling trust and finding strength and courage. Shattered from her battle in getting home. Worn out in what she had put herself through. Not quite ready to battle again. Just needing some real love and care and not feeling alone. My conflict in knowing that environment would feel catastrophic for her at this point. I could picture her response and saw her spiralling downwards. Knowing that she would be completely lost there without any trust or anyone there who loved  her and would hold her hand all the way through it. Never letting go until she was ready.Knowing that here I could still see her behind this illness. But what if I’m wrong? Ringing the clinic to talk things through before I made a decision.

As I walked into my room where she had climbed into my bed I told her “I will fight for you to stay here but you have to help me. Whatever it takes. You have to trust me in doing what is best for you.” It was a moment of promise that I hoped I would not live to regret. Putting myself between an illness and those trying to help and putting my neck on the line in doing what I felt was best. But requiring proof. That proof being weight gain. Without it I did not have a leg to stand on. 

And so a four day pressurised battle commenced in trying to raise her weight. To provide some proof that she could remain in our care. To keep her where she felt safe while continuing to access their expertise. In readiness of the assessment that would take matters out of our hands. When I call it a battle it is not an exaggeration. This enemy may be invisible but it is so forceful. You would think that the shock would kick her into action. Perhaps on day 1. But then the real battle commenced that was weighted down by the pressure and the despair of everything being taken from her leaving  her with no motivation to care. “What’s the point?”. “You are the point” I told her “ because you mean everything to us”.

A continual and relentless patience and kindness and gentleness to quieten an illness whilst standing firmly in my endeavour as the illness tried to manipulate its source. It is a master of manipulation. But I know how it operates now. But at this stage so much worse. But I am prepared for its worst. Allowing a couple of moments of pleasure to remind her in what she was fighting for. A life beyond. If they had seen me allow her to go to a wedding party that she had looked forward to I think they may have had me committed too. But just for a second it provided a moment of normal. Music, laughter, friendship, fireworks. A brief moment to hold on to. A reminder of what life can be. But now having to work much harder for it. Her previously easy life as a child being replaced by a version where those things come at a higher price. The next day being hell. A moment of thinking I had made a mistake. This illness is cunning but I’ve got its number and tough love brought into play. Not a version that comes naturally for me but at this stage is completely required as I became the enemy. The enemy of this illness. So be it. Don’t mess with me. When I’m fighting  for someone I love I can scrap it out too. And I have no patience or care for this illness. Show me your worst. I’m seeing it. A different kind of strength required in those moments when she is lost behind an illness that is the ultimate bully. I call her illness Putin. No care for a human life and wreaking chaos and devastation and distress  in the pursuit of power and control. 

I said a prayer one  morning in that first week. In desperate moments we turn to a higher being in looking for strength. My Gran always had that faith. I think I lost mine somewhere along the way despite being the little girl at school who used to put their hand up when they asked who wanted to be a nun when they grew up. What did I know other than I just wanted to be a good girl. Because I was just very loving and I liked the fact that Jesus was so kind and always helped others. I liked the stories like The Good Samaritan or Feeding  the 5000. I liked the candles flickering in church. I liked the feeling that I was not alone. That there was someone who was watching over me and having a guardian angel who kept me safe. That those I loved and lost went to a better place and were watching over me from heaven. It turns out I wasn’t really made of the stuff required in being a nun. Not selfless and pure to be a symbol of virtue. I think I liked fun, boys adventures and dancing too much. Not really made for the life of duty in a man made church that can often seem as corrupt and judgemental as the rest of it. All that money held in those places could feed the entire world and yet it is kept in vaults of gold. But the simple element of what any religion is, Is the Love part. “Love thy neighbour”. The bit where everyone matters. Rich or poor. No matter who you are  or where you come from. In Gods eyes they told me, everyone has value. Yes I can sign up to that. That’s the part of my religious upbringing that I have taken along the road with me. That’s the bit I can relate and attach to. Feeling the human and spiritual element as opposed to all the rules or ceremony. “Let he without sin cast the first stone”. Struggled a lot in that in that last chapter and from early life. But I try to remember that in moments I feel angry. Who or what can I lash out at in my anger in this illness,  knowing that I have made many mistakes and got things wrong and am just as flawed a human as the next. Feels good just to know that. Never pretended to be perfect. But I do try to do what feels “right” to me. I really try. And yet this morning I turned to a higher being for a moment as I started to cry and ask for help. Just sitting on my settee. To ask for strength. Calling out to the unknown to ask for something more . I feel my strength inside but in those difficult moments it dips. Because this illness is completely relentless. And I see and feel her pain all day every day and try to take that away from her. Looking for more strength so that I am ready and prepared and able. 

Because I always wanted to be a mum. Always!It was the happiest moment of my whole life when she arrived in this world. And I absolutely accept and hold with complete commitment my duty and also my gift of love and care for her. And that care is as hard as it can possibly be right now. Pushing me to the very Limits in what love and care look like including the tough version. Trying to help someone who is so consumed by an illness that they don’t want to be helped. And taking the hits literally in that, when rationality is completely lost and this illness  employs every element of its darkness to bully. Like a leech on a beautiful person and sucking the life out of her. “Leave her alone” I scream out inside me. My hatred of this illness motivating me even more as it creates a living hell. But our faith In her is stronger. So much stronger than it could ever be. And it is our faith in her that keeps us going. In the moments that this illness comes flying at me with such full rage as I push back at it in helping her to eat, which sometimes requires her dad to restrain her from hurting me or herself. But I still see her. I still feel my love for her. It can fight with that but it won’t win. My love for her is far too strong. Or when biscuits are thrown across the room as I quietly pick them up before she reappears and picks up a dustpan and brush to help, or she smashes up pictures of her grandad in such anger which then subsides and turns into distress and shared tears with her dad. Finally able to share in the grief that has been bottled up inside and has hurt them both in ways that they have struggled to express openly. But seeing their complete and utter distress as they are able to cry together in what has been taken from them in such a horrible way. Loss and Grief is such a lonely place. But in those moments it is shared with someone who feels it in the same way and  it provides a warmth that can’t be found anywhere else beyond. Not in the same way. Will that help?  I wonder. Please let it help in a journey that requires letting go of that grief. That bottled up grief shown in rage that has hurt them both and is being felt like a tidal wave together. Like being back in that moment a year ago when it was missed. When it was all held and pushed down inside. Hoping that in being able to go through this process together that it will unlock the shackles that tie her to the comfort of something that only wishes to hurt her. 

But it is so strong. It will not let go without a fight. Like a darkness that invades and consumes her and holds her like a prisoner as she talks of feeling trapped. Feeling like I need an army to fight it. But instead each morning I wake up to do battle until I reach the end of the day completely exhausted. Sleep being my favourite part of each day. A small measure of peace. This route being so hard and fraught with dangers. But hospital is the last resort. They know how hard this is but we have to try. Because getting through this together feels so important in what she is feeling. Leaving her alone somewhere would be repeating history. She needs to see and feel us fighting for her in the way she does for others. To not feel abandoned in her moment of need. To feel our strength in reclaiming that feeling of safety and comfort in a way that she experienced as a child. To not run from what is difficult. Both of us standing solidly ready to do battle with this illness each day in whatever it throws at us and whatever it takes. In moments it feels completely in charge and I doubt myself, until all of a sudden a small victory appears and it feels like a sign to keep pushing forward. 

I’ve never been a person with huge self belief. But I do believe in some things very deeply. Those values that I hold so close and dear. They seem old fashioned to many, but not to me. And in more recent times have made my life so hard. But what is the point of having them if they are just thrown away when the going gets tough. They have certainly been shaken. I’m not a person who has been very vocal in life in disagreeing. Generally keeping it to myself. My blog an anonymous place to share what I care about and sometimes vent what makes me angry or sad. It often feels pointless in vocalising it. In disagreeing with the many or those with power and influence. It can just lead to conflict that I don’t like or leaving me feeling like less when others retaliate and flex their muscles or raise their voices. And in this world the majority always rules. If everyone is singing from the same sheet and you disagree, well who will believe you  or stand in your corner, unless you flex your muscles or raise your voice. But then I would just end up becoming part of the majority. It’s not my way. I don’t wish to have power over others. But I guess some of that anger and frustration has to be put somewhere and in moments I put mine here. I suppose everyone has different versions of letting their shadow loose. Like horror films which some people really love. But I don’t  like them. They just scare me and I don’t get any joy from watching others murder or torture people even if it is just pretend. I’ve never really got that. More a Human story, romcom, superhero, adventure or fantasy girl. But amongst the shadows It’s amazing what you also find in yourself when it really matters. Especially in this moment. I’m having to dig deep for anything and everything that feels helpful. 

Like that day just over a week ago now when faced with medical experts who were all singing from the same hymn sheet, I did very vocally put my point across. Completely trusting in their expertise when it comes to the physical health of my daughter. Absolutely and completely. I’m all ears and learning and trying. Really trying. And knowing that the specialists in hospital know what they are doing in relation to this illness. But in a rare moment of critical importance I stood up to be counted in what I know. In knowing who I am as a person, who I am as a mum, who P is as a person, who P is as a dad and who my daughter is behind this  illness  and all the barriers and the protection that is currently in place when she is around those experts. In knowing what feels important to her, what are her triggers, what works and what doesn’t, what she needs and what she wants. What will help and what will hinder. And what will feel damaging for her in relation to her mental health. Because I know a lot of what sits inside of her quiet and vulnerable exterior. The things she shares. Her hopes, her fears, her struggles and her joys. But most of all what this bubble provides and always did provide as she was growing up that can’t be replicated in an institution, alongside what can be replicated outside of the institution and brought into this bubble. And despite the conflicts that come with any difficult decisions of this magnitude I trusted in my gut. I believed in it. My instincts as a mum and in all the information I have taken in over the past six years both in theoretical learning but more so in all those different experiences. Some related, some not but relevant. And also what I’ve learnt through a lifetime of being with her and what this has looked like over the past year. With an understanding of what is not said, what is not shared, what is not expressed. Our connection has never felt so important as it is right now. That trust showing its value in a way I wish it didn’t have to but makes me so grateful and proud that we have it. I wonder how others cope if they don’t have that same line of communication beyond the illness. If prior to that they were also in conflict. It’s the snippets of her that I keep hold of as we tread water, as she reaches out to me too. Thank God for that. And knowing that in all those really difficult, scary and heart breaking moments that the different version appears, that it is an illness that morphes into a visible version that shows itself when its control is threatened. Not wishing that power to be taken away. Because it is the love and calmness that  helps her to climb back over it and allows her to resurface again. But that trust also brings its own pressure. The pressure to deliver on that trust never feeling so heavy or full of responsibility as when I walked into that room.As she looked at me with scared eyes of a child who needed  me to be “more”. Never had I felt so prepared to stand up and be counted, or so confident and articulate in putting my most rational and thought out, points of view forward, or so assertively challenging  someone who on paper is so much more knowledgeable and expert than me. Who did I think I was?! I was a mum who loves her daughter more than life itself. And in that role, nothing stops me from fighting for her. In hearing what she tells me she needs and what I believe to be right for her. This wasn’t about ego. This was about trying to do the right thing by her. To stand in her corner, to stand up for her in a moment when she couldn’t for herself until suddenly she did. As she found her voice and articulated how she feels and what helps her. What she needs. What is working and what makes it harder. Feeling like she was fighting two battles. One with the illness and one with those trying to help. I couldn’t have felt prouder of her in that moment in revealing who she is behind the illness. I saw the doctors surprise and change in assumption that led to a change of plan as the bed was cancelled. Getting the best version for both her physical and mental wellbeing in a holistic approach was the aim. Knowing that both need to be tackled but in putting one first it completely jeopardised  the other. Oh the continual conflict in trying to work out what is best for her. This being a decision that is challenged by mself every single day. This isn’t about being right or knowing best. It is about trying to get the best version for her. Not just right now but also long term. For her life right now and beyond. Not accepting the package deal but wanting the bespoke option and asking for it. I promised that I would fight for her and I did. And then so did she. Pick your battles they say. We picked a moment when it really mattered. When the odds were stacked against us and somehow we needed our voices to be heard. Despite knowing that we were the David’s. Goliath being so much stronger and more powerful than us. Or so it seemed. But sometimes strength and courage shows itself in strange ways. Putting yourself on the line knowing that you have to deliver on it. Failure not being an option. Whatever it takes. Come what may. As we walked out of that room in having a concrete decision overturned because of thoughts shared and the results of a weeks  complete and utter hard work and effort and battle scars, we were able to secure a version that my daughter felt more safe and comfortable in. Where she could begin to sign up for what needs to be done. But of course the illness hasn’t vanished. It wishes us to fail. and it tries its hardest in that every single day. But for a brief moment I felt like I was able to protect her from a version that was feeling like another trauma in the making and in that I believe had the absolute potential to damage her longer term. And she was able to be seen beyond the monster of an illness that everyone is seeing and is talking about. They saw and heard her. They saw that there was more that they previously could not see. I believed in her and now they are trying to. I heard the Doctor congratulate her on expressing herself. That very thing showing that she is not completely lost behind this illness but battling in her own quiet way and sharing what those battles look like. And how she requires time and belief that she can overcome them without being put in a place where she will be  forced or pressured and left feeling alone again. That this version is slower but possible. That she has the people around her that have the influence and the strength she needs to fight harder for herself. I knowing how hard this battle will be and I’m feeling it every day but if we are all in it fully that the love that is shared will pull us through. I believe and have faith in it. It sounds so woolly to many when I say how powerful love is. But I believe in it. Truly believe in it. Because I see the difference it is making. Much slower, much harder and oh so very painful, but it is happening. But will it be enough? I don’t know. We can only try, try and try harder. When I’m in it I’m completely in it. No half measures with me. I’m scared but I hide it behind gentle strength. 

To see her complete relief as we drove home and then later feel all the last seven days of held anger through her tears was something I won’t forget. In the same way as the desperate distress of the week before. She is tired. Worn out. But I realised how strong she is. Something she can’t see but I know what it took for her to keep  going, what it took for her to get to here and what she has lost over the past week that has felt devastating. Watching her life disintegrate in a second. On a whole other level to my version previously. Commenting on the journey there in feeling like she was going to a funeral or her trial. Feeling like it was the end for her. Her feelings of complete hopelessness that hadn’t existed until that Thursday. What a distressing thing to feel in her. In a single moment her mental health plummeted as she felt ambushed. I felt it too. It wasn’t their intention. Just doing their job In trying to keep her safe and help her. How could they know. They aren’t mind readers. it’s impact making the job more difficult but it also provided the reason to fight harder. Like a doubled edged sword. Feeling my own relief in being able to stop something that didn’t feel right. 

Perhaps if I had never experienced the past six years I wouldn’t have known. Perhaps I would have just gone along with what I was told without questioning or challenging it. But this new version of me who has battled, threw away that armour and went in as me. A me that feels that “Together” we can be that more. A more in the safety of this bubble with all the extra support surrounding us. We can’t do it on our own. Absolutely we can’t. Looking for that help wherever I can find it. There are some amazingly kind and knowledgable people out there. But the value of love, safety, calm, patience, understanding, learning, evolving, trust and complete dedication showed themselves in their most powerful form in that moment. Standing up for what felt right in that moment, despite all my reservations and conflicts. Hoping it was the right decision. Looking for strength and faith in it being the right one. Will we succeed beyond? I have to believe that we will. I have faith that we will. I have to have faith in us and the people who are continuing to support us. It’s a long journey to better. In this decision I don’t know for sure. I will be the first to put my hands up if not and follow their version. But feeling that the risk in this version is so much less in damaging her long term than the other. Needing more time to prove our versions worth. Needing more time to get those extra supports in place. More time for her to feel the effects of being loved and safe and not alone in it. More time to cement the food plan. Just more time. I can take the hits. All of them. Tiny and feeble battle scars from an illness that doesn’t like us because we are being stronger and wishing to get her to better places and because I know that she loves us more and she knows that she is loved beyond measure. We can provide more comfort than this illness ever could. Until she realises her own courage, her own strength, her own qualities that have kept her going and are fighting back. Until she is able to see all the amazing things that she is made of and feels their incredible worth. It’s not the stuff for the faint hearted. It’s not the insipid version that we cling to. It is standing up in the crowd and saying “I’m made of more. My kind of more”. And the path to that is never going to be easy. But she is on it and we are walking either side. Like three musketeers. All for one and one for all. With a team of experts supporting us.

One week later behind  the calm I was continuing to work fast and furiously in taking care of all practicalities. Like a proper little housewife and SOME!. The illness fighting even more brutally for control because of weight gain but I feeling just as relentless. Completely exhausted every night as sleep prepares me for the onslaught of a new day. But those small victories also providing more strength and motivation to get her to a place where she can rest for a moment. Her exhaustion in battling making me battle even  harder. We are not through the worst yet. It will only get harder. Until a day will come when she starts to hear her own voice more fully again. That internal battle so evident right now as she screams out in pain and anguish.  But every meal will quieten its grip.

As my daughter took a slow and gentle walk to the forest with her dad I felt the therapeutic importance in her just being able to have that very simple freedom. A place where in the past we have played and laughed, but over the past two weeks we have picked flowers for the dinner table, a place where we have sat to eat a snack to make it a little less painful and forced, a place where she has gone to sit to find her calm in those moments before having to fight harder, or we have sat quietly together holding hands as I tell her “everything will be ok. You are not alone”. As she came back smiling from their walk I knew it wouldn’t last long with Dinner approaching and preparing for the inevitable battle in what that looks like but knowing that smile would come again, even if in little moments in between. Or just some peace in snuggles while  watching a film, or tired moments stroking hair. And reminders of a life to come in the chats in the forest and garden of what has been shared in the past and all the hopeful things to come. They can be limitless. But for now it is one meal at a time, one moment at a time, one day at a time as we keep working hard and battling and trying. Having faith that one day, the time comes that she will be well again and we are able to take our own individual  paths in life in what we love. Paths that the other musketeers will encourage and be proud of. Paths that are shared and celebrated together. I believe in it and I believe in us. Never believed in anything more. And in the moments I falter I look for strength anywhere I can find it and remind myself of my own strength in trying to do what needs to be done in a place that feels safe . 

A place that required me to stand up and say “There’s no place like home.”

❤️

Invisible Forest Garden Bubble

There is a place. Invisible to the outside world. Revealed just for a moment. Tucked away behind a beautiful, lush and green forest where magic carries through the trees and in the breeze straight to our bubble. This bubble being a place where the most beautiful and kind and loving young ladybird  of so much substance and courage, lives. 

But right now a ladybird who is extremely ill. Life threateningly. The Doctor trying not to scare her or us but reminding us of the seriousness of her current condition. If her weight drops again by next Thursday she will be hospitalised. Her body can no longer take any more. She will just collapse. Three weeks ago I waited every day for that call that every parent dreads as I had to watch her playing Russian roulette with herself every day in not eating but dancing all day. The pressure on her heart at this point is immense. Every day from far away encouraging her to eat something as her body went into starvation mode in wishing to binge and restrict. Binge and restrict. One evening talking her back to her home by phone as she sat alone in the park with wrappers of chocolate and biscuits and cakes around her, and being unable to get up and walk home. Her body reacting to being overloaded. Hiding my panic in her being like that alone in the dark on her own and providing soft and gentle and calming words as I felt the relief in her opening her front door. The longest and most agonising week as I cried myself to sleep each night. Wanting to just get her but having to respect her wishes. As I counted down the days for her to come home knowing that the NHS team were waiting patiently and ready for her. Their patience from not wanting her to walk away from treatment completely which was still a massive possibility. Our patience paying of in getting her there and putting her straight into the intensive care treatment programme. The relief for me in not having to carry all of the responsibility of what is so serious all by myself. They could feel my complete relief as I cried. The nicest kindest people ever. I’m so grateful for them.They also hidden away in a small underfunded place without mod cons. But they make up for completely in who they are and what they do and how. 

Re-eating syndrome is as dangerous as starving yourself. It’s why when they found the captives of those Nazi concentration camps they had to be careful in how they brought them back to a healthy place. People look at someone like my girl and assume that she is making a choice. No one would choose this. Or being  selfish, attention seeking, vain. There are starving people out there in the world and you can have what you want. How stupid are you. I’ve seen the mean images, the things that people write that ridicule and laugh at people like my daughter. Making them feel even less. So that what? They can feel like more. What a sad and horrible way to feel like more. If the same was done to cancer patients there would be outrage. Because the physical consequences of this are very similar. I know because I have taken care of both now. Both versions being equally awful but in different ways. This version feeling so much harder for me to support because it’s my child and so very complicated to treat.  The unkindness of others that is made from ignorance and creates the stigma just says so much more about who those people are than people like my daughter. In fact when I think how truly kind  and caring and sensitive she has been ever since she was a little girl I realise that her beautiful qualities will always make her more vulnerable but also make her so much more. Others seeing them as weaknesses. A person  that you can walk over. But she still loves and cares about others even when she is struggling. It tells me everything about what sits at her core and how amazingly beautiful that is. And if anyone tries to walk over her, well you’ll have to come through me first. As my strength has risen from the very depths of who I am. A force field that is so strong that it comes from only one place. True and Pure Love. Do your worst. It just disintegrates on contact.  Because from the moment she arrived in this world she has had the kind of qualities that elevate her to a place of such deep inner beauty that others can only imagine. She is the person who made me “more”. She is the person who inspires me to be “more”. More and better for her, especially right now. Because in all her love and care, she deserves the best version of that too. As I try my very hardest to be all that she needs. And in all her humility she calls me “her rock”. She is “my treasure”. Finding my own version of real and complete humility in this. There is nothing I would not do for her. I’d give my life if I could. The world beyond vanishing as I concentrate fully on her. Because right now she is the beautiful person trapped inside an illness that is like a monster that wants to annihilate her. An illness that was triggered by painful events and because she loves and cares so very much has now become  like a trauma bond for her. It is a horrible illness that initially provided some control at the beginning of the pandemic and then became the comfort in losing her grandad through a very slow and painful death. Someone who was a significant person in her life. Someone she loved and cared about so much. He would  hate to see this happening to her. A beautiful  and happy bubble of childhood, burst through so much loss and difficulty. It was her way of coping. But where some might comfort eat some icecream during a difficult time or others lose a bit of weight during a stressful time, this version goes beyond that. Because it is already in her. Genes that make her more susceptible to respond in that way. Having the ability to take complete control of her. It is a mental illness. And despite how often I hear about how caring we are now in those who have  mental health  illnesses there is also this ignorance too in people who made it through the pandemic unscathed and think “well I had to go through that too and I’m ok. Why can’t you do the same. Why are you so weak? She is not weak. Not by any stretch. As I watch her  battle every day  like a tiny warrior. The pain so very visible on her face as I often stroke it away as she lays her head on me. Knowing inside her there is a major battle   being fought all alone. You are not alone I remind her.

We are all made differently and highly sensitive people take in so much and really feel it, along with peoples circumstances being very different. We don’t know what other people have or are going through in their lives. This life can be tough and harsh at the best of times. Humans can be pretty selfish and mean to each other. But if you are going through any difficulties, losses, challenges or traumas it can very easily have an effect on you mentally. Just like falling over and cutting your knee. Left unnoticed and without antiseptic it can soon become completely infected leaving you lying in hospital with sepsis. It’s just harder to see it when it sits inside. And what we can’t see or understand we fear. Because if it happened to them perhaps it could happen to me. I certainly know how much that chapter affected my mental health in having to deal with so many big life changing difficulties that individually would be classed as traumas. And only a few really understood what was happening for me even in when I was sitting in a room each week full of people training to be counsellors. Some of which were also unkind. 

I’ve seen a lot as I’ve watched the news in who and how and where kindness is given more freely and where it isn’t in the same way. Any kindness being a wonderful thing especially with so much suffering in this world. Who couldn’t be disgusted by the completely devastation that is happening to normal people in their normal lives.  But I see the difference in how we respond. Always being the “good guys” whilst forgetting our very own war criminal in Tony Blair.  Did the  lives of those people and their children have less value because they were not like us. Just like the differences in how we are responding to refuges or the sickening version of our policy to ship those people off to Rwanda. I still see it even in this bubble and even if I don’t have anything to give to others battles beyond, right now I still care. Sending it out into the universe. The “R” word featuring very heavily in what I’m seeing. Despite all our surface chat of equality and inclusivity. This feels as institutional as it comes.  I guess for me in mentioning it, it is something beyond my own sadness to place the anger. No room for anger in this bubble but I am certainly feeling the sadness. Getting to know the pain very well. Sadness in what is happening for my girl and sadness in a world made of greed and power and money and never run by anyone that you could ever trust as far as you could throw them. They can’t even follow their own rules. And little people’s lives having no value. No wonder I find myself creating protection in a forest garden bubble despite knowing that entitled people could just come along at any moment and destroy it. Just because they can. But finding my faith in humanity in the little people in seeing and feeling all the love and kindness and bravery of others. The rest just feels meaningless and empty. The pursuit of happiness against my pursuit for peace and love.

Peace and love existing in the forest garden where  she often sits wrapped up with a hot water bottle trying to keep warm. Her body being so thin that she is very high risk of everything and anything going wrong. From brittle bones, to failure of every vital organ including her heart which is monitored. Two weeks ago we had nothing. No support at all. A very sick daughter who wouldn’t accept any help. Three months spent gently and patiently trying to cajole her to reach out for help. Her age meaning that it can’t be enforced. A visit to A&E being the turning point as she saw their shock. But still not enough to really make her see the seriousness despite having tests all day and then wanting to keep her in. She refused. But it was enough to finally put that hand out as I sat on her bed with her as she made that desperately needed call. Getting cut off halfway through. My desperation inside being calmness beyond  as I encouraged her to press send again as she looked to walk away. This time success. Helping her to complete the formalities in order to be assessed. At which point she jumped straight to the top of the list in her condition now being so high risk. And then followed by the subsequent quiet battle in negotiation as she refused to start until she completed and came home at Easter. As I at home was sick with worry and regularly talking with the clinic in how we could get her there without scaring her away. Her previous experience privately being a complete disaster in the end. In its uncaring and military way that provided very little  care beyond being weighed, berated by the psychiatrist for not following the brutal plan, and an online therapist she could not relate to. She was completely lost in it and had no trust in anyone there. Control and command tactics that left her wanting to find her own control even more. Pushing her further down the rabbit hole. Losing her own identity behind an illness. Not seen as real person just another anorexic. Proof to me in that moment that money doesn’t always mean the best. It makes me angry in just how poor that version was. Regaining some weight for a moment, all of which was done at home, but not addressing the illness in any real way or enabling us to support her more fully. Just floundering in a world that is more complicated that just eating. Money for old rope that will see patients back time and time again. It just left her without any trust in anything or anyone beyond those that love her. And doing the necessary just to escape from it and continue with her course. My hidden desperation feeling off the scale in seeing her deteriorate again.  But this illness is also very resistant to being helped so being supported in the right way is the most important thing. And being seen as a person beyond the illness is the most important part. Because that is the person who is trapped inside this monster. Pulling her back out and helping her to quieten the dangerous voice  in what is powerful and influential.  To send it back into the deepest and darkest recesses of her mind. Because that is where it belongs. It has no value. It is just a shadow that wants to control her. But she is the light. A beautiful a shining version. I’ve learnt a lot in a year. Reading about it is one thing. Living it is another. You can’t fight darkness with darkness. You fight it with Love. The most powerful weapon. Along with all those other sensitive qualities that are seen as weak but when up against darkness are more kick ass. Pulling her away from the comfort of something that wishes to destroy her to the comfort of life, family and friends that wish her to be happy and healthy and be whoever she wishes to be. Where she is enough. People that love and care about her. Anything less isn’t good enough for her. Anyone that has the ability to leave her feeling less or in fact has left me feeling the same has been removed. We don’t need that. We deserve better. Because we are “more”. It’s just others more looks different to ours. Let them revel in their own greatness. In the end as Batman once said “It’s not who we underneath it’s what we do that defines us” And that doing is happening very quietly and invisibly and undercover. This is the real and deep version of love and care where you care so much that you would do absolutely anything. Not needing admiration. Not feeling resentful. Just doing. Motivated and inspired by her. Because when you really love, then people really matter. It’s not just about “me”. I think I got confused in all that talk of self love and knowing your worth. Because people always matter to me and I’ve felt that in every version of true care ever given. Often laughed at, or taken for granted or just thrown away. But I know what is given. Because I feel it. 

As she sits in the garden her tiny hands are always so blue where her blood struggles to circulate to them through those thinly fragile and weak arms that remind her of the person she cherished so very dearly. She always feels cold. But those cold hands  always signifying the warmest and purest of hearts. And here in the forest garden being newly created in a safe and protected bubble, there is the provision of calmness and peacefulness of mind and body on days where the sun shines in. Captured and held in all its powerful force in this sun trap where it’s heat is able to intensify. Where layers can be removed without fear of coldness or judgements of others. A comfort that is continuously given in every moment of every day in order to help break this trauma. As she sits there often feeling so alone. Can you imagine that?! A kind a loving young ladybird who is so ill having to feel so alone in that. For risk of being ridiculed and laughed at. For fear of her illness and the vulnerability of it being used against her by the unkindness of others. In a time when she really needs the love and care of others even more. The heart break of seeing a ladybird who was once so full of life. A crowd that vanishes. Just those true friends that don’t know, dont ask, but miss her and check that she is ok. Those friends feeling like real favs of mine. Especially one who she trusted enough to finally confide in and who is being like a sister to her. Very similar in their ways of being. 

No artificiality allowed  in this bubble. A forest garden it shall be in all its colours and filled with fairies and lights. And at some point her favourite, a cherry blossom tree, and lots of colour from beautiful flowers and cushions. The unmanicured lawn remaining as opposed to replacing it with a synthetic version as is often preferred now. Less work I hear. But how will the daisy’s and dandelions grow and wither and grow again without an earthiness beneath. Preferring the imperfect but beautiful version in all its flaws. This version feeling a mixture of fantasy and very real. What is this life without both. But perfection not something that is required by me. I only need the Ladybird to be well and her again. Everything being renovated and mended and brought back to life with lots of effort without lots of new. Just a tired patio that has aged with time and tiny and playful footsteps. Awaiting a new platform in time to come that will be in keeping with this natural feel. The kindness of P’s cousin who wishes to lay it in order to help make this bubble a more lovely safe haven. Feeling the love of these few who really care about us. 

The backdrop of the newly rejuvenated deep autumnal red fence that has been work in progress since last year and I finally finished in the week. The day after the anniversary. It provides the barrier between calmness and the world beyond. A colour that is seen so vividly and without flaw in this bubble. A reminder in its deep and very visible colour that love is completely present here. A natural love that is so in keeping with the most beautiful and natural elements of the world that lies beyond. A colour that is loved so much by this young ladybird. Knowing that if it starts to fade it can always be replenished. There is always extra on standby that doesn’t need to be found outside. A supply that is always to be found just by looking inside. Red is always a colour that is found within but for me is made to be given out. That same red seen on the walls of the small child’s house with it led freshly painted white door with a small heart opening. And above it the pure white of a permanently snow covered rooftop and windows. A house filled with so many different and beautiful colours of only partially used pots of paints that will be reopened when the time is right. Alongside childhood memories of games and other things of many purposes. Some of which have been forgotten. Outside a little buzzing bee and ladybird stand side by side. Yellow and black against Red and Black. Stripes and Spots. And yet in all their differences they are a perfect match. The bees purpose in buzzing around busily for the hive whilst the universally beloved, harmless and graceful ladybird rests. The bee only stinging others when necessary in protecting. But it is always the bee that dies from that sting. The ladybird also being a protector and a survivor. How colourless this world would be without this ladybird. This forest garden bubble would lose its magic without her beauty. I need her to survive. She has to survive. This busy bee dropping every other task beyond. Work, People, Life. Her only purpose right now in doing whatever it takes to help keep her in the world. Not wishing to take a single risk in knowing how very fragile she is. But sometimes having to watch and wait in moments as the ladybird risks it all. Those moments feeling  unbearable. How the bee has and is worrying. Both having the ability to fly with delicate wings but right now just swaying together in the gentle breeze. Perhaps they fly when no one is looking in their dreams.  

And at the far end only slightly visible where the bubble ends a beautiful autumnal gold fence. The gateway to the world beyond. An invisible gate right now. Its openness to all, being heavily restricted by an increased force field in access to just the very few. A more visible version to come at a later date in creating those boundaries. Again it will be the deep red colour of the backdrop. Always opening outwards to others who really care and anyone in need of help. But a little more discerning in who can come in. I have been reminded in how easily  bubbles can be burst. A garden looking and feeling imperfect but  magical. Because magical isn’t supposed to be perfect. It is all the  imperfections that make it feel more natural. That’s where the sparkle lives. This busy bee finally having  and really feeling the support of the intensive care treatment team that is now helping to keep this ladybird in the world too and teaching us in how to deliver the same treatment in this forest garden bubble. Such very early days. Only two weeks in but everything being thrown at her such is the seriousness of her condition now. We are very lucky and very grateful. Unfortunately until you reach such a point it is very difficult to get such help. The private version not even coming close to what these most genuine of carers are giving. She’s not seen as just another ladybird. They see and hear all the variations in her spots. And that is what is creating her trust in them. That and a relatability in coffee shop style. Treading carefully and slowly but with an awareness that progress is rapidly required. And many a wounded healer to be found amongst them. You can hear and feel their wisdom and care in knowing exactly what it looks and feels like beyond all the theory. Yes it does look very different doesn’t it. No overnight quick fix. This will take time. Priority right now. Just keeping her in it. And then one stepping stone at a time. 

This bubble a place where the quality of strength  looks very different to the “more” that is seen as strength in the world beyond. Quiet, gentleness, patience, calmness, understanding, time care, Love being all the things that feel like “more” and make the difference. All the things that always existed in that bubble before. All the things that were always there but for a brief moment were left feeling like they were “less”. How little now I take in others judgements or comparisons of my garden with theirs. Just because theirs is bigger, things grow more quickly, with more expensive and new stuff that looks so sparkly. But it’s not how it looks that counts. Its the intention that sits behind its purpose and the feeling it creates. People will always be the best and most  important ingredients  of my garden surrounded by all the other natural things. The sky the clouds the tree the flowers. The other stuff is just the sparkle on top. I can live without that stuff. The crowd can’t be seen from here. And feeling “less” is not an option. Just those few who care and look in unobtrusively and offer their hands. Less is often so much more I have found. Self sufficient my whole life and surviving so much. Living on my own from when I was 16 years old and having to pay for it. I was just a scared kid really but I managed. Never needing a life jacket but it sure is nice when someone puts our a genuinely caring hand … but because they want to not because they want to be like or admired. Because they genuinely care. Otherwise it means very little.

i am giving both of my hands to her in constant care and attention. Even though in little moments she hides her illness behind layers in trying to find normality and purpose. Leaving me holding my breath till she returns. It is still hard for her to accept just how poorly she is and often if feels like a game of chess. Only it isn’t a game and the risks are so high right now. I am very aware of that but also have finally accepted what this is and what that means for me too. Being her full time carer because she needs it and because I love her and want to. I can’t quite explain exactly what that looks in this version but like being a full time mum and taking care of all the basics in every way. As though she were young again. Being on demand in providing the constant safety and comfort until she feels able to give it to herself in a healthier way. Like going through the journey to independence again. Little by little. on step at a time. It obviously feels hard in some moments. Trying to maintain all the best qualities and getting tired and feeling the frustration in moments. And then seeing P find a job that is everything he loves. I have to remind myself in who I am. Because I don’t want to resent others. I don’t resent it. I’m actually really happy for him. He’s been through a lot and deserves something good. But in the odd tired moment I am reminded of a life I once built and was lost. But then remembering that I only really wanted to help others and in that meet my own potential. Maybe that is what I’m doing right now. It feels like “more” to me and her. Especially when the thought of her being hospitalised feels completely scary in knowing the effect that would have on her mental health. Needing to be able to do what  they would do because her body can take no more. Like any mum I am willing to sacrifice my life for hers in a heartbeat. I can’t physically but I can in giving every part of me, my time and my effort to her. Of course it can feel so lonely in lots of moments. But I do also know how to be alone and ok in it. Using all the good stuff that I had started giving out to others again, for her again instead. She needs it the most and has it for as long as she needs it. I hope for her, that at some point she doesn’t. This isn’t the sort of life that a person like her deserves. Starting from scratch in helping her to reclaim  all the parts of herself that she has lost so she can one day live some dreams again. And always holding a feeling that perhaps a moment might come again for me at some point. I believe it will. I have faith in both of us.

And that is being helped in the faith of those who love us and buoy up my faith, those newly founds NHS specials who are supporting us with much care and kindness,  and all those that show their care in trusting in my ability to hold both of her hands while we tread water together. The majority of care sitting with me every day but P trying harder to help now and learning more and just being protective of her. And also of me even if often it feels like I have another kid to look after. He is seeing more in how tiring and intensive it. I realise why I like being a kid so much. Because when it comes to the practicality’s of family, I’ve always been the grown up.But in the end it wouldn’t matter what I did or how much I had of my own. Because without her there is no world for me. Because there is no “more” than her. And it is her “more that” I have faith in. That and Love.

So we disappear again into the invisible forest garden bubble, where the work required continues ……

❤️