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 ……

❤️