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 ……