Wednesday, 9 December 2015

Today I Said Hello To Fear & Invited In The Sunshine.

After the difficulties of the last few days I went to see my therapist this morning. He has been working with a technique called IEMT (About IEMT) I will leave you to read the exact details, but essentially the technique disrupts the way the mind perceives trauma. Today I felt that I needed to work on the trauma that had re-triggered at the weekend. At the beginning of the session I got in touch with the feeling of the trauma and I felt I was at a nine (ten being the worst symptom) so pretty high. The sessions always start with visualising a safe place which you return to at the end of the treatment. In my mind I had to replay the trauma and when ready to open my eyes I watch a series of finger movements without moving my head, while the therapist uses a series of words. After the first round of the therapy I got my nine down to a six, we then repeated the process and got my six down to a four. One part of the trauma still felt very vivid and so we repeated the treatment and this time I got my feelings down to a one. I felt so much calmer, no longer in my usual fight and flight mode, which normally can happen for days  after reliving a trauma. My therapist then asked me to recount the incident when Ethan stopped breathing and I was able to do so calmly without tensing up my body and feeling fear. The effect of IEMT takes my traumas and changes them from a High Definition colour image to me being the observer of an old black and white movie, and my recall happens in seconds rather than me playing it over in my mind for minutes at a time. The effect is probably not the same for everyone but this is the best explanation I can give for my own personal experience.
It is fair to say I have spent hundreds of pounds that I can't easily afford on Counsellors and Psychotherapy in the past. They wasted hours of time putting me back in my traumas, triggering them over and over again. I have felt completely stuck until now. My therapist gave me such a simple explanation: if we keep working with the mind then traumas will continue to be triggered, but by reducing those traumas to just little movies in my mind I finally have the space to get in touch with my feelings and the spaces in my body where they have been hiding.
The intensity of my physical pain is no coincidence. Even my own GP suggested that my traumas were causing much of my muscle pain, but his answer was to continue to treat with pain killers. I am aware that after my sessions with my therapist my muscle spasms have greatly reduced.
Today at the end of our session we worked on a visualisation technique where I got in touch with where fear was in my body. Right in the centre of my chest was the sharp, black shape of Fear. My initial sensations were of great discomfort as if the pressure of fear was weighing my body down. Then my therapist got fear to wave at me with a silly voice and I laughed. Fear didn't seem so scary. Fear was just trying to tell me that my mind had been so busy playing and replaying the traumas that I hadn't had a chance to talk to my fear and tell it that everything was now Okay. Of course this makes total sense. I have largely been stuck on autopilot as a Carer for the last five years with one trauma layered on top of the next. Even when my daughter came home from hospital we didn't get the happy ending, I became a nurse and a mother. Repeated stays in hospital, my daughter Blue Lighted to hospital twice in 24 hours one week. Life has been shaky for a long time so I never really had a chance to connect with the feeling of fear from a safe place.
But today I was in a safe, calm space created by my therapist, I worked with positive thoughts to remind fear that life can be happy, the sun can fill my heart and we can be free from trauma. Fear began to lose its strength and grip on my chest, it softened and shrank and the tightness in my chest was replaced by warmth, love and happiness.
So my fear just needed to be heard, but I was unable to hear it because of the constant waves of trauma in my mind. Tears rolled down my face during the session as I felt a great sense of peace. Fear and I were friends, it was no longer an overwhelming force ripping through my body.
My homework is to continue to cultivate peace and to give fear the space to be understood. This is a remarkable journey, and I feel an immense amount of gratitude to the Universe for holding me together until this point in my life where I am able to finally let go.
My job as a Carer is for life, I am resigned to that fact, but to continue to be the best Carer, Mother and Partner I can be, its time to let go of the past, time to build a better present and a better future.
Today the sun is shining for the first time in days and it is dancing on the wall in front of my desk as I type. I feel its warmth on my skin and its presence in my heart.

Namo Amida Butsu

Tuesday, 8 December 2015

What Happens When We Invite Fear In?


Yesterday was not a good day. Fear arrived uninvited. I was aware of a build up of anxiety across the day that had begun before I had even woken. Of course my fear actually crept in through the back door on Friday and just waited for an opportunity to burst its way in and go ‘Surprise’.
On Friday we had an appointment with a new ‘expert team’, this time neuro-psychology. Whilst I knew they would ask a few questions I hadn’t prepared myself for the depth of the questions. When asked if anything significantly traumatic had happened in the first five years of my child’s life fear woke up and found an excuse to carve its way through my heart and mind once again.
I have Post Traumatic Stress Disorder from the premature birth of my twins and the events that occurred in the first three years of their little lives. I never know what will be the trigger, some days I can recount things without a flash back at other times a memory and anxiety is triggered that plays out its full force of terror a couple of days later.
I thought I would be fine as I explained that my had stopped breathing while I was breast-feeding him. I spat the first couple of sentences out OK, then I looked towards my husband to describe how he had given mouth to mouth resuscitation while I was talking to the emergency services operator. And that was it I felt my voice crack!
Most of the time I recount this story without my husband there, so I guess my mind has become selective in what it sees as safe sharing. But on this day my husband was there, and I couldn’t miss him out, how could I, he is a bit of a hero in our house. He kept my son alive for an anxious 15 minutes while we waited for the ambulance crew. 
Ethan a few hours before he went in to respiratory arrest.
 It is hard not to remember the scene. It was almost midnight when I tried to settle my son down to sleep. He had been agitated for much of the evening, but hadn’t seemed unwell. I tried to feed him lying next to me, rather than sitting up; this in itself is a safe posture. The room was dimly lit to create some calm in the hope my son might fall back to sleep. I was aware after a couple of minutes that he had stopped suckling and in my head I thought at last he had fallen asleep. Then a split second later I realized I couldn’t hear the sound of his breath. I picked him up and there was an absent stare. At that point I screamed for help, and when my husband switched on the main light it was obvious by the greyish blue complexion that my son in that moment was going to die if one of us didn’t start CPR. My husband grabbed him quicker than I could catch a breath and put this fragile rag of a body on the floor to begin chest compressions. I dialed 999, and I remember at that point feeling so completely out of control. All I could do was listen to the words of the emergency services operator and relay them back to my husband and listen again. Meantime I see the light in my little boy’s eyes come and go. At one-point blood seeps from his mouth and we both panic. I tell the phone operator what is happening and she says to carry on. ‘Whatever you do, don’t stop’, she said. Chest compressions followed by breaths, chest compressions followed by breaths. The light of his eyes would come and go, a signal he was holding on in there.
Once the ambulance crew arrived they looked in shock at the tiny body in front of them. They had never worked on a baby so small. My sons soft clothes were cut from his body and chest pads applied to shock his heart. We wait anxiously to know if his heart will start beating. In that moment I prepared my self for the loss. What if it was too late? The next few minutes were a blur. My husband raced off in the ambulance with my son, while I attempted to put a bag together of things I might need should we make it through the night.
As I got in the car I looked over at a neighbours house where the light was on. She waved at me, her face could see the terror on mine, and in that moment I envied her the safety of her home and her four healthy children.
On the way to the hospital my husband called me to say that Ethan had started crying in the back of the ambulance, he was alive. I am not sure how I drove to the hospital much of the next few hours remains a blur, we tried to catch a little bit of sleep, in between times I attempted to express breast milk. Stress and breastfeeding are not a good combination; no milk would come from my exhausted body.
In Britain, tea becomes the stable medicine when in a state of shock. So at 6.30am I made a cup of tea and put two sugars in. I made two difficult phone calls, one to my Buddhist temple to ask if they would pray in morning service for my son. The next call was to my mother and father, I wondered how much their fragile ageing bodies could take. They had already endured months without their grandchildren, and while their granddaughter remained critically ill on a neo-natal unit in Leicester their grandson was now seriously ill. I sipped my tea and tried to put on a positive voice. ‘I will call when there is more news, try not to worry’, I said.
As I walked on to the High Dependency Unit I could hear the crash alarm. It had become an all too familiar sound. Cup of tea in hand I turned the corner to my son’s bed only to discover it was my son crashing! I hand grabbed my as I started to bend forward to the floor. All I could hear myself say was this couldn’t be happening. But it did happen, and as I watched a tube being put down my son’s throat I had to prepare myself once again for the beginning of the end. Unable to keep an intubated child on the ward my son was transferred to the intensive care unit of the same hospital my daughter was in. I walked exhausted between buildings for three days, my daughter ventilated and critically ill, and my son this same. Over the course of those three days I was aware that both my babies could of died just three months after they were born.
But the world turned in our favour and both the children started to improve. My son spent a month in hospital my daughter another eleven. 
Intensive Care after respiratory arrest.

When you are faced with relentless trauma for months on end, the brain chooses to block it and hide it because there is no time to process it before the next trauma occurs. Over the last two years my brain has chosen to relive those traumas again. Fear rushes in the moment I try to figure out what happened to our lives. Yesterday I was stuck in the memory of my son without his breath. In the present moment my son was baking cookies with me and arguing with his sister. But my head was stuck in the trauma. My body began to lock up. First the muscles of my neck, then my shoulders and finally by 5pm my lower back had decide to give up too. Then there was the stomach pain and the tightness of my solar plexus. There came a point where I couldn’t take it any longer. Fear had me in a vice like grip, so while my husband made a cup of tea and sat with the kids I went to my bedroom to scream and cry.
At the moment that we feel intense fear from trauma, we try and hide from it, like choosing to bake with the kids (big mistake) or running to my bedroom as a place of safety where I could scream and cry without the kids seeing the mess I am in. Both of these might seem like a good way to push through the fear, but actually they are not. Even after I had screamed and cried I felt no better. What I really should have done at that point is meditated on my hearts experience. I am sure if I had caught fear as it first appeared then I would have had enough clarity of thought to meditate but yesterday was long past a friendly chat with fear. 

Ajahn Amaro in his article on fear suggests that there are two ways to meditate on fear; the first is to wait until it appears, and the second is to invite it in.  "Fear is not the enemy – it’s natures protector; it only becomes troublesome when it oversteps its bounds. In order to deal with fear we must take a fundamentally noncontentious attitude toward it, so it’s held not as ‘My big fear problem’ but rather ‘Here is fear that has come to visit’. Once we take this attitude, we can begin to work with fear".

Today I feel the fall out from my trauma symptoms yesterday. In the middle of the night I was woken by nightmares, and the familiar hot sweats that fear creates. This morning I felt as if I could barely see or speak. I feel on the outside looking in again. I think it is a sort of protective mechanism, disengage with the world around you because it’s all just too much. I feel the guilt of my behavior yesterday. I was not a nice person to live with. But this afternoon I found Ajahn’s meditation on ‘Inviting Fear ’ and I thought now the worst of the fall out was over maybe it’s time to say hello to fear on my terms.

I centred myself with my breath on my heart space, as it is here that we need to feel safe and strong. I then recalled my difficult memory of the awful evening when I nearly lost my son. I got in touch with where my fear was, sitting in my solar plexus. Using the breath I came to a place of acceptance that the feeling was there. I allowed the scene to run in my mind and to begin with it felt uncomfortably close but as I used my breath and came to a place of acceptance the memory sat further away at a more comfortable distance. Every time the fear came closer I used my breath as a point of focus and imagined the fear like a wave washing over me rather than it holding my heart in its vice like grip.  Using the breath I was able to focus the heart on remaining empty of fear. It is important to focus the hearts attention on the emptiness and let it know the cycle of fear has ended.

The more I practice this meditation the greater awareness my heart will have of fear when it comes knocking at my door. Rather than letting it creep right in I can stop it in its tracks and remind myself that while fear can make a lot of noise I don’t have to panic. The feeling of fear is not pleasant but it is only a feeling and with the support of meditation I can get in touch with the Buddha at my heart. From this foundation I can approach my fear from a place of wisdom, kindness, and sensitivity rather than filling myself with pain, guilt and misery. 

Feeling blessed that he was able to stay with us.
 
(Much gratitude to Ajahn Amaro for his article Inviting Fear published by Tricycle in the E-book enititled ‘Fear’. Available by subscribing  to Tricycle at http://www.tricycle.com/wisdom-collection/teachings/tricycle-teachings-fear


Wednesday, 18 November 2015

Yesterday was World Prematurity Day, How Could I Forget......time to reflect

So yesterday the 17th November was World Prematurity Day, lots of pictures floating around on Social Media of tiny babies cuddled up to their mummies looking cute. That's fine, I am sure for some people having a child born two or three weeks early, that is what they get. And I am sure that to you the reader who has never had a premature child, those photographs look beautiful, and you haven't really given any thought to the life beyond that picture. But the cute incubator shot is not the reality for those of us whose children are born in the 23-26 week gestation bracket.
The truth is its hell! And I am going to show it to you, and please don't look away.
I will give you the fluffy cute picture first, or maybe I should finish with that to numb your pain from the reality of premature birth. Sorry no, I will lead with the fluffy picture, otherwise you won't really take in the rest of what I am saying.

Grace in a rare moment of wellness, breathing on her own without additional help.


I absolutely wish that my experience of having my twins at 26 weeks had been as beautiful as the picture above all the time. The sad reality is that is wasn't. I couldn't hold my beautiful little girl for the first three weeks of her life. That is something you never get over. I didn't get to smell her, I didn't get to kiss her new born flesh. I didn't get to hold her and make her feel secure. By the time she was 3-months old I had held her only a dozen times. She was so sick most of the time that she could barely stand to be touched in her incubator. People don't tell you that because of the hourly blood tests, invasive injections and tubes down their throats, they can't bare even the tough of someone who loves them.
Recovering from her first major operation at just four weeks old. She should still be safe in the womb but instead is fighting a life-threatening infection.
In the picture above Grace is recovering from her first major operation at just four weeks old. She should be safe in the womb as she is the equivalent roughly of 30 weeks gestation in this picture but due to her low birth weight of just 1lb 14oz she is instead fighting the deadly Necrotizing Entercolitis (NEC). It attacks the bowel of low birth babies and the survival rate is pitiful. We spent the best part of the first 12 weeks of Grace's life not knowing if she would live or die. Her veins were shot to pieces from cannula's and long line's in her arms for intravenous feeding so a Central line was installed in her chest. It is visible in this picture above. Its an invasive procedure but a life saving one which allowed Grace to be fed intravenously for the first three years of her life. YES! I did say three years!!
Grace went on to have another bowel operation at 5 months to remove further bowel that had been attacked by NEC. Grace finally came home 14 months after her birth. Today I am her full-time Carer and the bond of Mother and Daughter is slowly growing, damaged by the months of her being in hospital and my inability to hold her while she was a tiny baby.

Twin brother Ethan. Suffered a massive Stroke at some point before birth. The bruising on his head is from an attempted forceps delivery.

Grace's twin brother didn't fair much better. A blood clot in his brain blocked a major blood vessel in the left frontal lobe starving him of Oxygen. On day two we were told the worst, he may be physically disabled, he might be deaf or he might be blind. These are not words you want to hear. I will never forget that moment when everything that felt safe and beautiful in my life came crashing down. Thankfully he is not severely disabled but he is a five year old boy with a neurological disability and I am not just his Mum but also his full-time Carer.

I know most people think that the effects of premature birth leave you the moment your children come home but the reality for those of us with children born very premature is that our lives will never be the same again. Often our children are left with disabilities that mean we don't just become Mothers and Fathers, but also Carers. We don't get to go back to our old lives, our old careers and the people we once were. The effects of early birth last a life time for both the parents and the children.

I didn't post this yesterday, not because I didn't care or because I had forgotten, but because I spent most of my day at a hospital appointment with my daughter World Prematurity Day probably past most people by because they were busy with life, because there are other things in the world to worry about right now.  I understand that this world I have lived in means very little to you, unless of course you are reading this and have lived it too! But the next time you see one of those fluffy pictures promoting World Prematurity Day, take time to remember those of us who have been through the worst of it. Take time to think about the parents in countries without suitable neonatal care that have to watch their babies die. Think about the parents out there who are juggling one child in hospital and three at home. If you know someone who has a child on a neonatal unit right now, give them a call, offer help, cook them a meal, help them with their home life. Often people feel afraid and don't know what to say, some people are too scared to send a congratulations on the birth of your child card. Send it, because we are proud of our babies. Whether you send one or not won't change if a babies die or live. You won't be tempting fate.  Do just about anything you can to let them know they are not in this alone.

Time moves on, my premature twins are now five, they go to a Special Education School, they have a challenging time, life will never be easy, but there is lots of love and lots of laughter in our house. Each child has a memory box containing the little hats and first vests and breathing masks they wore. They look in disbelief when I tell them they were only the size of my hand when they were born.  What ever hardships they endure in life their little boxes will remind them of their struggle to be here and I hope give them courage to move forward with life. If you can survive a premature birth, then you can survive just about anything life throws at you. And I think most parents of premature children would say the same thing about themselves. Our experience has made us in some ways harder, but it has also opened up a vein of love and compassion that we never new existed and it has shown us that nothing in life can be taken for granted.

I hope that on next years World Prematurity Day you will stop and take a minute to breathe in and connect with the many mothers and fathers and children who are touched by prematurity and in breathing out send them your love. Through a conscious awareness of all others sufferings we can change the energy of a situation. Lets change how the world sees premature birth and get people talking about how we can all help our family members, friends and loved ones through such difficult times.

#Worldprematurityday








Wednesday, 4 November 2015

No Space For Blame

The problem with our lives is that we become too comfortable in our own skin. Our feet ground us to the floor from the moment we begin to walk. Our steps feel secure and purposeful, they take us in the direction we want them to go in. Life generally stays like that for quite sometime until some disaster strikes. Our body might physically fail us, causing disease or impairment, or we might encounter some emotional suffering, the loss of a partner or child for example. It doesn't really matter what the loss is, it is just the fact that it is something that sweeps us off our feet. When we try to get back up and walk again, the landscape that we once knew has changed. Our feet don't seem to grip the floor beneath us as well as they did. We try to dig our toes in, yet still we cannot feel the earth as before. In our search for security and happiness we look for answers to our suffering and this is when the problem arises of placing the blame on ourselves or others for what has happened to us. 
Sometimes I feel as though I am in somebody else's body it doesn't feel like mine anymore. Pregnancy changes your feet, my old shoes don't feel the same post-pregnancy, my feet are much wider having carried the burden of twins. New shoes are better, new shoes aren't moulded to the body of the person I once was. I look at myself in the mirror and while my appearance is familiar I see that the emotional strain of the last few years has taken its toll on my smile. When I look in a full length mirror there is the unmissable C-section scar, an emergency cut through my flesh carried out without any regard for what I would look like once all sewn back up. When friends have shown me their scars, they have been neatly cut and sewn back up again. I have scar envy, my is not neat, it is a harsh reminder of the fear and danger that surrounded the need to cut me open. It is a reminder of the damage to my sons brain as he was trapped in my pelvis. Too much time was taken by the doctors in an attempt to push him out. I look at my scar and feel the guilt, 'What if we had got him out sooner?'. I spent the first two years of my son's life dishing out the blame. I blamed myself, I blamed the doctor, I blamed just about everyone one and everything, and blame turned to anger. This is not a healthy situation to be in and a 'self' that I do not like. The feeling of not having the ground beneath my feet in the same way as it was before has brought with it a lot of fear and anxiety that I am trying to overcome the best way that I can. I have begun to understand that things are no longer black and white or right and wrong, they are just what they are.
My son and daughter were both born in to this world with disabilities, this is neither right nor wrong, it is just life. If I sit for a second with the feeling that it is wrong then that is when bitterness and anger rise, that is the moment when I make the rest of the world my enemy, and I am not going to do that. If we live with the idea that something is either right or wrong then that is simply a way to trick the mind in to believing that this suffering is just a one off, and the rest of our lives will be comfortable, safe, and secure when of course it is not. The sense of security in our health, love, work etc is a delusion. The ground beneath our feet is never secure, our bodies don't last forever, lovers leave, jobs finish. Accept that change is part of life and very quickly the world becomes a more peaceful place. 
We have to be willing to be compassionate to ourselves, to understand that we are only an ordinary human being. We must accept ourselves 'Just As We Are' even the parts of ourselves we don't like. How do we get to this state?  For me it's a combination of things, writing and reflecting on what I have been through, meditation and my chanting practice as a Pureland Buddhist. Calling out to Amida Buddha brings to the forefront of my mind the fact that I am just an ordinary being and that Amida accepts me just as I am. 
The chanting or 'Nembutsu' helps to bring a greater awareness of my fragility, I am more emotionally and spiritually awake with nembutsu than at any other time. The process softens the heart, and allows me to sit with what I am feeling without being full of anxiety or fear of the parts of me that I am not comfortable with. Connecting with Amida through Nembutsu, lets me know its all okay. 
Through my practice my mind set has slowly begun to change. The child in me that used to always see things as right or wrong is beginning to understand that life is made up of so much more. I no longer have to take the blame when there is none to take. I can choose to walk a different path. I choose the Middle Way. 
Bad things happen in life, I could not protect my son in the time around his birth, and to take the blame for that would not be healthy for him or me, yet there were times early on when I felt like I had failed him. My stupid body had failed him. Thousands of women give birth everyday, with no problems, I don't know anyone like me. But the truth is that today like every other day there will be one woman who is going through what I went through, I feel that, and I am filled with compassion for myself and every other woman who will go through the same emotional and physical trauma that I went through. 
Parents of disabled children often feel a sense of guilt and blame even if they are not consciously aware of it. The result of taking the blame is that you then spend all your energy trying to some how put it right. The reality is however that this only leads to a constant craving and hunger for something that doesn't exist - a more 'normal' life. By walking the Middle Way, I choose not to be right and not to be wrong, blame will not suffocate me, in the same way that it did before.
The middle way means not holding on to any version of yourself so tightly that you can't keep your heart open to the possibility of something else. Being grounded and secure in yourself doesn't come from being either right or wrong. It comes from feeling comfortable sitting in the space between those directions, with our hearts open. It is only in this open space that we can begin to communicate sincerely with both ourselves and others. Follow the Middle Way and be Just As You Are. 



Wednesday, 30 September 2015

Learning to live with our Scars

Yesterday I spoke to a close friend about my scars, the emotional kind. I don't really do that very often because not many people have the strength to hold that kind of emotional depth. It is painful for me to speak of and I can sense the intensity of emotion in the person I am telling it to. I am grateful that this person can hold the weight of my pain, even if just for a few moments. The fact that someone hears me and doesn't try to 'fix' things is all that I needed. He didn't tell me that everything will be alright, because like me he knows that our emotional and physical suffering never really goes away. We can't escape it, we just have to find ways to live with it. 
Of course in the process of our conversation I realised that I had been trying to 'fix' it. My way to fix things was quite typical of anyone feeling hurt. I was pleasure seeking and looking for distractions, my answer was to put myself in the 'doing' role. I have to be doing, rather than being, which is quite laughable as I have spent many years teaching meditation, telling people to find more time to 'be' rather than 'doing'. 
The problem of course is that when you have post-traumatic stress disorder, or have been through any personal trauma for that matter, the process of just 'being' is pretty over whelming. You are never really sure what will pop out of the box. But as a Carer I realise that I can't keep 'doing' for forever, I am already exhausted from my daily caring routine, and sooner or later I will collapse if I don't give myself permission to just 'be'. The day after my twins were born I was faced with the prospect of being a parent to one disabled child, it was only a few months and a few surgeries and life threatening infections later that I was dealt the blow of two chidren with disabilities. I was thrown in to the role of new mum, trying to be the best parent I could in exceptional circumstances, and that role of mum soon became nurse and once home the new label of Carer. 
There was no time to say goodbye to my oldself, and I won't lie I grieve for the person I once was every day and for the person I thought I was going to be. My faith as a Buddhist tells me that everything is impermanent, change is okay, it normal, but tell that to me 'ego' self who had all these great plans, hopes and dreams. I find my faith and my practice of Nembutsu, 'calling out to Amida Buddha' a great comfort. When I feel helpless I call out 'Namo Amida Butsu' and that process helps me to release something of my grasping self, the part of me that holds on to those mental and physical scars as if they were a punishment. I am starting to begin to change my relationship with those scars, it is a slow process, but if I focus more on the present moment and less on the scars of the past then there is an oppportunity for those scars to start healing. 
My daughter taught me that lesson today while I was applying cream to the scars on her torso. As I swept my fingers across the skin I felt the jagged edges of where a scalpel once carved through her tiny body in order to save her life. I find it an uncomfortable reminder of what we once lived through. I had hoped as she grew that some how the scars would fade or become smaller but alas they have not. Today she looked down at her scars as I applied the cream and I explained to her how she got them. 'You were very poorly when you were a baby and a doctor had to cut open your tummy and take out the piece that was poorly. You were sick for a very long time'. She looked at me with those big brown eyes and her beautiful smile and said 'I am a big girl now Mummy'.
In that moment she was present with now, the scars didn't matter, she is here, she is happy, and she is alive. The past does not matter to her; at least not yet, as she is still only five, but for now the scars can be allowed to fade, their rough edges can become a little rounder and softer. 
I think if she can look past her own scars, then it is about time I did the same with my own. 





Friday, 11 September 2015

Over Coming our Obstacles

As a Carer there are times when you feel like there is no ground beneath your feet. This should not be surprising because after all, in our role as a Carer we realise impermanence is everywhere, the health of the person we care for can change by the hour or the minute. One routine that worked a month ago, might change the next, due to circumstances or failing health. While the person we care for relies upon routine, with the inevitable change, comes increased stress on you as the Carer and increased upset for the person you are caring for. This week has been the first week back at school for my twins, while the classroom has stayed the same, that's about it. A different teacher, new coat pegs, different tables at lunch time, a new bus and bus drivers to get use to. For a child with brain damage who struggles to map in his mind his surroundings, this new experience is torture.
None of us like change, but for most of us we find a way to cope. But for children and adults with learning difficulties and for those with physical disabilities, routine is a way of feeling grounded and secure. When something disrupts our routine we inevitably see it as an obstacle, we can feel a physical change in our bodies, and mental confusion can arise. But what if we didn't see it that way? As a Carer the world feels permanently full of obstacles and sometimes they are too big to climb over or I don't have the strength to move them out of the way. 
It is at times like these I often reflect on my reaction to these obstacles. As a Buddhist I have been trying to learn from my experiences and draw on the teachings of the Buddha to help me face these difficult times. With my children and their differing needs I feel that I am constantly faced with new challenges. Most of you will know that sinking feeling when you try and get help, and following an assessment the door is shut in your face once more. I am aware that this festers in me, I feel so angry that there are so many obstacles, so many struggles to get my children the help they need. At the back of my mind I know that I will not be here forever, and when I am gone who will carry the sword and go on fighting for them. 
Recently I have been reading about the story of the Buddha's enlightenment. On that night when he sat under the tree and was faced with many challenges and distractions, Mara tried to tempt the Buddha with obstacles that could distract him from the path to enlightenment. The Buddha showed great strength and turned the arrows of his enemies in to flowers. He showed that the obstacles we face are not our enemies, but rather our friends. Yes I did say friends! I know that is hard to take in, but we learn the most from the knives that cut us the deepest. If we see the obstacles as our enemies, then we also see the world around them in this negative light and we become stuck. I for one do not want to spend the rest of my life stuck! 
So I am taking on board this lesson from the Dharma teachings. 
So when Social Services, the NHS, or which ever service it may be, shut the door again, I won't let myself dig a big hole of anger and bitterness. It is about how I choose to perceive things, and I am tired of feeling worn down, if I don't make friends with the situation then I am at War with myself. 
I have felt like I have been in battle for a long time, and my children are only five, this cannot continue, I will get Carer burn out! It is time for a change. 
The only enemy we really have is the one within ourselves that says they don't like things as they are now. That longing for a life that is more peaceful, secure, happy, a life that feels like an impossible dream. But the reality is that even if your child or partner wasn't disabled, if you weren't a Carer, life would still have challenges, just different ones. Obstacles are there to teach us something, rather than getting angry and wasting energy trying to climb over them, it is better to stand back and find a way to transform them. We can blow down the wall of defeat, with compassion for ourselves and others. 
Rather than getting caught up with a wave of negative emotions we have the choice to sit with the feeling, and let it pass rather than giving it the energy to become a self inflicted wound of anger and blame. At those times when we feel the worst of our negative emotions; rather than supporting the theory that we are in some way to blame for our situation, we instead need to give ourselves some loving kindness. When some things are out of our control we have to learn to accept the changing nature of life and by transforming our obstacles in to flowers we can make our world just a little bit more bearable.



Tuesday, 23 June 2015

A Letter to myself as a new mum from the carer I am now

Mother and Daughter June 2010
Dear Me
I look at that positive smile and I know you are putting on your 'brave face'. Behind that mask you are really scared of what is going on. I can't tell you not to be scared because it is that fear that will both drive you mad and motivate you to get up in the morning. I can't tell you that it will all be over soon because it takes 14 months to get your beautiful daughter home. I can't tell you that this picture will be one of many of you holding your daughter as she gets well because it won't be. She becomes so sick that you only get to hold her 10 times in 3 months. 

I can't tell you that there will be lots of support and help from friends and family, because there won't be. Sorry kid you really are on your own. The reality is that people don't like to suffer, let alone take on board someone elses suffering, and they are too afraid to come to the hospital so don't bank on an army of visitors. You will be lucky if you get a dozen all year, and most will only visit once because seeing a child with a tube hanging out of its nose is too unbearable, although some how it's ok for you to bare that pain alone. 

You will experience a pain in your heart like no other, most of the time it will feel like there is a knife in there that someone forgot to take out. It will take you 2 years to realise that knife is your grief and anger knotted together, and it takes you another year to let go of it. Occasionally it will try and knot itself back up again but you find that your Buddhist Faith helps you to gather yourself together and learn the art of letting go. 

You will learn to adjust to a world that is not your norm, you adapt and find a new 'normal'. Life as it was tears you apart the second you try and grasp some of it back so don't try. Just be present with the day to day, and a new stronger you will emerge that sees the world with a different eye. 
You will learn to be a nurse, a paramedic, a doctor, a teacher, a physio, a therapist, social worker and lawyer, and ultimately a Carer. As for being a MUM, that role has to take second place to the role of caregiver. 

Ok so I am not selling this am I, sorry to put it bluntly, it's a job for life with shit pay, loads of unpaid overtime, and no holiday. Unless you put a gun to your head or somebody elses you won't get any respite either as you will be deemed able to cope until you collaspe. 

Are there any positives? Absolutely! You learn to choose your friends more wisely, you learn that the words 'If there is anything I can do' actually translate as "I am only being polite please don't call me". You learn that there is an army of amazing parents just like you who also feel that same guilt, grief and exhaustion. And while your caring roles might bring different challenges you understand each other in a way that nobody else can. 

You learn to pick your head up off the floor and stand up for your rights and those of your children, and this is an ongoing challenge.  Not a naturally positive and confident person you learn that with everything that you have been through life is too short and it is important to seize the moment when ever a beautiful one arises. 

You learn that disability does not mean inability, it just means learning how to do something a different way. It won't be easy and there will be times when you fall in to a heap of tears, but there will be amazing little miracles every day. Your children will show you the world in a way that you could never have imagined. And remember that doctor on day two that said your son might not walk and talk and might be deaf or blind. Here is the good news... they got it wrong. Infact by age five he can't stop talking. Yes his brain is a little different, there are challenges, I can't hide that from you. In five years time in June 2015 you will have made it over the first hurdle, you are now accepting that your life is that of a Carer, a little of the old you is still there, but you will learn to like the new you a whole lot better. 

love, and great strength, from me to me. 
and prayers, lots of prayers. 

Namo Quan Shi Yin Bosat

Kusuma

Friday, 12 June 2015

Who Cares for the Carer?

  If you have stumbled upon this via the title you are either A) a frustrated, worn out carer like me looking for some words of comfort to let you know you are not alone or b) You are a new mum to a child with a disability and like me you are still getting your head around what that really means or C) You know someone who is a carer of a disabled child and you want to try and find a way to support them and understand their world. I really hope there are lots of C) reading this because you have no idea how alone, tired, and desolate your Carer friend feels and if you can take time to give them your compassion, not sympathy, then it really will be much appreciated. 
The title of this blog is The Compassionate Carer, not because I think I am a Compassionate Carer at all. It is because I am trying to learn how to become one. As I write this I have been a Carer for five years. Now I feel the tears well up because I never think 'Oh I have been a mum for five years!' No, that never has time to enter my head. I knew my fate the day after my twins were born when myself and my husband were ushered in to a cosy room with flowers on the wall. I renamed it 'The Bad News Room' nobody ever takes you in to a room like that to give you good news. The words 'Your Son has had a Stroke in the Womb, which has left him with Brain Damage'. I remember shaking as I tried to take in the news and the blur of the other words 'he might not walk or talk, we just don't know what disability he might have'. 
As I allowed my self to come to terms with this news we then found ourselves a week later in a different neo-natal unit with twin 2, my daughter; sitting once more in another room with a comfy sofa and flowers on the wall, I braced myself for the worst. 'Your daughter has contracted necrotising entercolitis, its pretty bad, we are not sure if she will survive the next 48 hrs'. By a complete miracle she makes it through, but two bowel surgeries later she is left with short bowel disease and the need to be fed her milk via a gastrostomy tube and intravenously fed Parental Nutrition. Add into the mix the discovery of a genetic condition and here I am five years later a mother and a Carer for disabled twins. 
I am like thousands of other Carers; we often have no compassion for ourselves, we don't give ourselves the space to sit with our suffering and what has happened to us. We don't praise ourselves for the things we do well for the person we care for, when we want time for ourselves we think we are being selfish. The identities we once had are gone, we become angry at what we have lost, we grieve for the person we were and the person we will never be again. 
My faith a Pureland Buddhist has helped me a lot.  With faith in Amida Buddha I have been able to find light in the darkest of days. My intention in this blog is from time to time to draw on my experiences as a Buddhist, along with my life as a Carer to share my thoughts and feelings on how we can as Carers learn to bring compassion to ourselves as well as to those we Care for. 
If you are already a Carer then me posing the question Who Cares for the Carer? will no doubt have you laughing, because you and I both know the answer is 'No One'. So if we don't look after ourselves, if we don't give ourselves a little bit of compassion then nobody else will. 
Gautama Buddha said “If your compassion does not include yourself, it is incomplete.” 
I am doing my best day be day to work on that one!

Thanks for stopping by and sharing the journey on the road to Self Compassion.


#whocaresforthecarer