Gratitude

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

She is my Treasure, my Heart, my Love. 

And I’m so grateful to be her mum.  

❤️

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

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

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

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

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

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

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

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

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