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.”