Recovering from surgery

I haven’t posted much lately because I’ve had so much going on. After coping with my son and all the issues around his behaviour, housing and finances, I went into hospital for scheduled surgery on my foot! This was on Monday 5th September and I was due to have the other foot operated on tomorrow but due to the Queen’s sad passing and funeral it has been postponed to the 30th. I’m glad because it gives me more time to strengthen the foot that has had the operation especially as there is a recovery time of 3-6 months on average and I wasn’t keen on my surgeon’s determination to do both within a short space of time. That said, my foot is healing, but I can’t rush the process with my pre existing issues.

I’ve been feeling vulnerable but at the same time proud of how I’ve managed almost entirely alone with the aid of an electric wheelchair! For three days I couldn’t even put my heel on the floor. Plus I had a bad reaction to the codeine I was prescribed and was violently sick for 24 hours. I coped. I wish my friends had checked in more, but I’m okay.

I will write a longer post soon. I’m reading many of your blogs and getting comfort from them.

Growing and transcending

I’m aware that each time I write a truly vulnerable account of how I’m feeling about my disabled son I probably lose a few readers – understandably so because not everyone wants to read about someone’s suffering, especially those seeking a more uplifting story – so I’m drawn to say thank you to those who are drawn to read my experiences and feelings, regardless of reason. Sometimes I feel very alone and it helps to write it down and know people are reading my words, even when I am going around in circles with the same feelings and issues, or at least seem to be. I really do appreciate it.

I know in my heart that each of us is on a spiritual journey to realising our true self – our Christ self, Divine indwelling, soul – whichever term you feel most comfortable with -and we can’t drop off the path no matter what we do or feel. Sometimes life can feel completely unbearable and I think it is important to be honest about the suffering because it is the freedom of speaking the truth that ultimately saves us. As Carl Jung (I think) said, ‘suffering can’t always be worked through, only transcended.’ I cannot escape my pain. It just is. It exists in a state of consciousness that is fully human and I love and respect it. It will never leave me for it is part of me. But it is not ALL of me. And therein lies the answer.

I think it was Mother Teresa who said ‘when you know better, do better.’ We experience life in accordance with our level of consciousness, so once we grow spiritually, we experience life, and God/the Divine, from a higher state of awareness. However, growth is not a linear process, as I know all too well. I have meditated and prayed for years and feel I have a healthy relationship with my spirituality and the Divine. I am always growing and evolving and increasing my capacity for unconditional love. The difficulty is when old wounds get activated, or, as Eckhart Tolle says, the pain body, and once again I am lost in the pain of wanting what can never be. The pain body is the emotional element of the conditioned self – who we believe ourselves to be in relation to the outer world. Some people call this the ego, and indeed I have done sometimes, but I dislike the term, maybe because it reduces it to an unpleasant sounding entity rather than being part of my being which evolved to try and help me live in this world, however misguided it has been. It also seems to suggest that my emotions are ‘wrong’ on some level. My emotions over my son and wishing things were different are not ‘wrong’; they simply are. I can’t imagine anyone in my situation not feeling this way; at least, not without a huge and permanent shift in consciousness to the extent that one’s personal history just doesn’t matter any more because one abides purely in a state of love. This ideal was perfectly executed in the story of Jesus.

Regardless of what I, or anyone else, think about the whole mystery of Jesus, whether he was real, a myth, whether he was the only ‘son of God’ or pointing to the potential that exists in all of us, it highlights that Jesus was both fully human AND fully Divine. He often referred to himself as the ‘Son of Man’ i.e son of humanity, rather than God! He fully embraced his emotions, his humanness, his fear, anger, reluctance, sense of abandonment etc. He befriended the hurting, lost and broken people. He must have felt terribly alone in a world that wasn’t ready for him and did not understand him. He suffered unimaginably horribly in the hands of others, feeling betrayed and alone, all the while trusting in God’s plan for his life.

The most important part of the entire story: Jesus was not left to die; he was resurrected into his Christ self which transcended all his pain and suffering and restored him to his Divine identity. His old self had to die for the new self to be born. Whatever one believes about this, there is a lesson in letting go and having faith, that our suffering does not have to define us, even if it is part of us for a time (even a long time; indeed, some of us live with deep hurts our entire lives and only find relief on physical death). The story of Jesus has always brought me comfort because this is a man who went through the worst torture that I imagine is possible to man, all the while feeling abandoned by God, yet loving and forgiving those who inflicted such suffering on him, who then transcended it all; a personal reminder of the renewal of all life and our own eternal nature.

When I feel crucified by my personal circumstances and unable to find relief in any of my life’s blessings due to feeling consumed by wishing things had turned out differently, I remember that fighting against my suffering will not work. My suffering results from a part of me who understandably feels devastated and angry and let down by life. I also know that I carry within me some part of the Christ mystery – my Divine spark – which both encompasses and transcends this human life. It is a daily juggle, holding those aspects of my being, but maybe knowing they are there and perfectly okay, is enough.

Between acceptance and resistance

Acceptance seems like the holy grail of spirituality and I understand why; it’s opposite is resistance, and as we all know, what is the point resisting something we can’t change? It’s only going to make us suffer.

I’m not even sure it has to be one or the other, black or white. Maybe there are shades of grey whereby I’m not accepting or resisting but stuck in some limbo state in between the two.

Only that, too, equals suffering.

Today I had to go down to the local government office to sort out a financial mess on my son’s behalf. I was told my son needed to accompany me so they could see him for themselves and verify that he lacks capacity to handle his own affairs. Due to his level of need, two male carers had to escort him, so we were quite a group heading into the building. I knew my son wouldn’t cope for very long and he didn’t; he became agitated and vocal, catching the attention of everyone else in the room, until the carers took him out for a walk while I spoke to a representative. I’m relieved that he at least didn’t lay on the floor which is what happened elsewhere in public last week, and he didn’t hit anyone, which is always a massive concern when he has a meltdown. No small blessings there.

The stress of the very short visit – in total, it probably took around half an hour, most of it on my own as my son had already been taken out by the carers – left me feeling so weighed down and hopeless. It reminds me of my desperation as a young mother trying to control my son who, as a six year old, ran riot around a restaurant gabbing food off people’s plates. Those times have gone. I don’t have to – and I simply couldn’t – manage him on my own anymore, but the same stress, the same heartbreak, remains.

I wonder if anyone who does not have a severely disabled son can even imagine what it is like. Children play up, especially when they’re young, but in time you can reason with them and loosen that all-consuming hold on them as they start to grow and value their independence. I have never lost that hold on my son. He is all consuming. He is unpredictable. He is terrifying. You never know what he is going to do. The only real way I have learnt to cope is detach myself. Not in the sense I won’t do all I can for him because I will always do that – but emotionally draw back, because otherwise the pain is too much to bear.

Maybe this is what I mean about being in limbo – not quite accepting, not quite resisting. This is my life and I cannot say I accept it. I often think about how it could have been. I grieve for the child I never had and never will have now. I grieve for the child – now adult – that I do have. I can’t imagine a day where that grief stops. I long for simple conversations with my son, Facebook comments, texts – the kind of stuff most parents take for granted. I long to see my son grow up and become independent – drive a car, go to university, get married. He will never do any of those things. He doesn’t have any concept of those things. I’m the one who wants them. I’m the one who feels the loss.

Am I resisting? If so, who wouldn’t? I don’t know, there are much better parents out there than me who devote their lives 24/7 to their disabled kids because they feel that depth of unconditional love and it’s second nature. I’ve never been that person. I’ve been ill all my adult life with chronic illnesses that nearly destroyed me. I simply never had the capacity to give my son that much of myself. I did the best I could. I still don’t know if it was enough but I know it was all I had.

I guess I’m only hurting myself by constantly thinking ‘what if’? But it’s impossible to stop. Maybe my acceptance lies there, in accepting this is where I am and how I feel and that life is so plain hard because I didn’t ask for this. I don’t have to be all saintly and spiritual about it if I don’t want to be. I don’t have to pretend. I can say to God that I wish things were different. I can feel God’s love for me and for my son and remember that Jesus was crucified in the flesh and in our own unique ways so are all of us in living a human life.

Anyone who copes with similar and has found a way to cherish their relationship with their child and their life as it is, I truly admire you. I journey on.

Hamster is sick

As well as everything involving my son lately, I’ve realised my poor hamster Pumpkin is sick. I’m taking him to the vet later but I’m not sure they will be able to do anything for him.

I’m starting to think I won’t get anymore animals as the pain they cause when they die is too much for me to bear.

My dog is 12 and a half and I truly dread the day she goes.

I know it’s the cycle of life and it’s never ending but the attachment one forms to these little creatures is enough to break your heart when you can’t see or hold them anymore.

And it never gets easier. It hurts just as much with one creature as any.

I entrust my beautiful hamster’s spirit back into the comforting arms of God if it is his time. And I entrust my grief as the outpouring of love gifted by his presence.

Witnessing a seagull’s near miss

This morning I witnessed a hit and run. The victim was a seagull, but that doesn’t make it any less upsetting for me.

Thankfully the seagull flew away, stunned but seemingly unharmed.

It had been among its flock which were picking at a large animal carcass in the middle of the road. One or two cars came by and slowed down and the seagulls mostly dispersed but one or two were too obsessed with the bone to worry about the cars.

As I was watching and waiting for a moment to go into the road and remove the bone, a car drove along with no intent to slow down and very deliberately drove at the flock; most got out of the way, one did not and hit the bumper with a thud. By some miracle it then flew off.

At this point I shot into the road and moved the carcass to a safer place while the seagulls watched, no doubt wondering what I was doing with their treasure.

The incident left me shaking and upset. Is a seagull’s life worth nothing to some people? Maybe the driver decided it was the seagulls ‘fault’ for being in the road in the first place. Would he say the same about a small child?

I find the lack of basic compassion really hard to deal with. I know that’s part n parcel of living in this world. I know many people don’t have empathy for birds, especially ones they deem a nuisance, such as seagulls. I’m not ignorant of those facts. I just find it really difficult to wrap my head around the intentional desire to hurt a living being and cause it suffering and pain. We live in a hurting world, I know. Hurt people hurt people (or animals. Or birds). It’s just…very painful to witness.

Patience and compassion are two wonderful virtues that are much needed in this world. No creature is less deserving than any other. No being deserves to suffer simply for going about its business finding food. I know some really ARE a nuisance and need to be killed for our own sake, but we can kill humanely. We do not have to inflict suffering. The intention to do so says nothing about the creature and everything about the person.

God bless every creature, including humans, who suffers and/or fallen victim to any one else’s suffering. Which, lets face it, is probably most.

Silver linings

It’s been a very painful few weeks but I am very grateful for the silver linings that have emerged as a result of my son’s hospitalisation. Whilst it’s been very far from ideal, my son has been calmer than he has in a while, a combination of the right medication plus 24/7 carers who he responds well to and a room and bathroom of his own (albeit off a busy ward). I am also grateful for all the professionals who have worked so hard to find a better solution for my lovely boy while not dehumanising him for the difficulties he has that led to being in hospital in the first place. He has a new placement in the autumn but it’s still a building site, so we have to wait. In the meantime he has a temporary arrangement in his previous home with the support of 24/7 carers. He should be discharged early next week.

Other relatives sadly chose not to visit, which meant me going every other day to do his washing and bring him food (he was not eating any of the hospital food). I wish others had shown their presence to my son, but I am grateful for the opportunity to really be a mother to him for the first time in many years, probably since my health forced me to give him to his father full time. My visits were positive. We bonded for the first time in a few years. He was pleased to see me and at one point lay his legs across my lap. I can’t put in words how much this all means. It has helped heal my fragile heart from all the pain of parenting, the loss and struggle of bringing him up, the feelings of disconnection that arose from only seeing him once a week and having to get past the obstacles of his dad and grandmother who often made it hard for me to visit. Moreover, it was a relief after the pain of visiting him in the assisted living accommodation where he wanted me to leave as soon as I arrived. Now I know this wasn’t personal but a reaction to his frustration and pain at living in an environment which felt out of control and that he couldn’t cope with.

I am so grateful to God/the Divine for all these silver linings in such an awful situation. I just hope and pray that my son’s discharge goes well and he thrives during the temporary placement and when he goes to the new one in the autumn.

Small miracles

I went to see my son today, braced for another absolutely terrible time as that is how it’s been for the last few visits, but by the Grace of God or sheer luck, he was in an excellent mood – calm, relaxed and happy. I was able to enjoy my time with him and vice versa. He watched videos on his tablet and ate the chocolate I bought for him. There were no behavioural issues or stress. It was all exactly how it could have been if these issues weren’t even in the equation. For a short time I breathed easy and thanked God/the Universe for this unexpected miracle.

This is even more poignant since yesterday was a dreadful day. I spent hours on the phone trying to sort my son’s finances out only to be told he wasn’t entitled to anything (which isn’t true) and desperately trying to make sure the paperwork was being completed so that my son’s carers would be insured to drive a car to take him out. It’s all been frustratingly slow and horrendously stressful but will hopefully be sorted soon. At one point yesterday I was shaking and crying and livid with my son’s dad for the mess he has left in his absence and felt it was all simply too much for me. The last thing I felt like doing this morning was visiting my son and being punched in the arm (or worse). So to arrive and be greeted with a smiley, happy adult child, was like the greatest gift I could have been given.

I am so grateful for this and also for the care everyone is showing him. Despite his upcoming eviction notice, the professionals involved in my son’s care are pulling out all the stops to tackle his behaviour on all levels. I do feel a lot of it is being abandoned by his father who no longer visits him, as well as not being taken out in a car to a range of activities which is needed to keep him entertained and healthy. Due to his autism, my son can’t express his feelings in the way most people can. He can’t say he’s confused or sad or missing his dad. It’s got to come out in other ways and for him that’s destructive and violent behaviour. Knowing that doesn’t make it easier for the carers to deal with when they’ve got other residents to consider, but it’s certainly understandable.

Today’s miracle has given me hope. My son can still have happy, calm days. He may settle down yet and find his place in the world. Maybe everything the carers are doing will make a difference. And once he has access to his car again, he’ll be doing a lot more things that he loves. Maybe he’ll be okay. I’ll keep hoping and praying so. It’s a long hard road but today shows we may be heading in the right direction.

Reflections on childhood and God

Over this Easter I have been thinking a lot about my childhood and realising while it was painful in many ways (very dysfunctional, disjointed family and chronic bullying at school) I have a lot to be grateful for. I spent a lot of time in nature, whether it was picking blackberries down the field over the fence that backed onto the bottom of our council estate, or hiding in a makeshift ‘den’ which consisted of a tree stump surrounded by overhanging hedgerow over the fence that ran alongside our house. I spent a lot of time in nature and had freedom that many kids these days can’t even imagine.

Most of all, though, I found comfort in the Bible. I took my Good News Bible down to my den and read it there. No one forced me to read it; on the contrary, I grew interested in it myself being an avid reader of Enid Blyton books where, being the 1950’s, every child went to church and Sunday school. I decided I wanted to go and my mum, being drawn to religion herself, took me every week. It was there I bought my Bible, some workbooks, and several wonderful books by Patricia St John about children of my age who were troubled in some way before finding God and becoming Christian.

My view of God was very simple. I could talk to him daily and did through the Bible workbooks I completed in my den. He was all powerful but loving and good. I wanted to be good to please God. That was massively important to me, so much so that I completed many notebook entries simply asking God to help me to be good. My childhood inevitably tapped into this need to be good because I was the ‘good child’ for my mum whilst my sister had severe mental disturbances and caused my mum a lot of pain. I wasn’t told to be good, however, and I certainly wasn’t threatened with God’s wrath if I wasn’t. The desire to find God and do right by him belonged to me alone.

In some ways I miss the simplicity of those years. I had no doubt that God had my back. I saw him as a loving parent, someone who cared for me. Someone who was always THERE. My view of God is now much more complicated. When I pray, I no longer feel just as though I’m praying to someone outside of me, but affirming something inside. God isn’t a personal being sitting on a cloud, but an energy that exists in each one of us and the entire universe. This means the power lies within and always has done. My childhood dreams of God enabled me to tap into that power and transform myself through my faith.

What I’m missing is that certainty, that focus, that point of power. I’ve lost that innocence and now my mind questions and critics everything. It’s no longer straightforward. I have purchased a few of the Patricia St John books that I used to read to help me tap into that energy again and the part of me that knew the truth no matter what form it took. I didn’t even consider any other forms. I didn’t question it. It just was. I’m finding my way back there through meditation and – yes- prayer, but I need to be mindful that I don’t get side-tracked by critical thoughts such as ‘but God doesn’t exist outside of you.’ Says who? God is everywhere, inside and out. It doesn’t matter what term we give it – God, Divine, Energy, Source – we are all part of it. But the point of power has always been within. The difference between the child and the adult is that the former didn’t know this, but the latter does.

Fear, love, guilt: Tomorrow’s visit

I’m visiting my son again tomorrow and my anxiety about it is through the roof. I’m not scared of him, I’m scared of his suffering. I’m scared of seeing him hurting because he’s missing his dad, and not understanding the practical issues that his dad has not taken care of. He doesn’t know the details, all his knows is that his dad has not visited and that he is unable to do certain things that he used to. He doesn’t know his dad has failed him. In some ways that feels even more heartbreaking.

I’m no stranger to suffering. I watched my father die of cancer and all I felt was love. I had no fear because in that moment I allowed everything to be as it was. I felt great empathy for his pain but I was not afraid. I knew what was coming and so did he. I sat with him until the very end and surrendered to the love that was guiding his journey home.

My son’s suffering frightens me. I feel a raw, primal instinct to protect him from hurt, but I know that’s impossible. His vulnerability and lack of comprehension increases my desire to keep him safe always. I also know that my fear of his suffering is probably tied up in a large amount of guilt. It’s displaced because I’ve never let him down – I’ve always done my best for him under difficult circumstances – again, always. But somehow the guilt is still there, probably linked to my grief around parenthood in general, that I was sick and unable to be the kind of parent I wanted, and that my son, due to his needs, wasn’t able to be the child I wanted either. My self-image is clouded in guilt and sadness and a sense that I have failed.

Maybe the fear of my son’s suffering is not only because I fear the pain that comes with knowing he is hurt, but fear that it will break me as a mother because I didn’t have the relationship I wanted with him and his pain presses on that wound. His pain will force me to come face to face with myself as his parent without running from those feelings. I will have to sit with them and learn. Relationships are our greatest spiritual teachers after all. They are our mirrors, showing us where love is most needed.

Unconditional love goes beyond images and labels but leaves out nothing. It embraces fear, pain and grief. This isn’t about trying not to feel scared or pretending I don’t feel guilty. It’s allowing all those feelings to be there and giving them to the light. It’s being with the reality of the situation, which is that it is hard, and all sorts of issues are activated, including my own abandonment wounds. I can only do my best in any given moment and leave the rest to the Divine light/the universe to take care of. That’s what I’ve always done for my son and will continue to do, no matter how scared I am.

The problem of suffering

It’s the hardest thing when your child is suffering and there is no real way to help them. I don’t know how anyone can possibly make peace with that. I feel guilty for even wanting to feel at peace when I can’t help my child. Even worse is knowing my child is suffering as a result of the actions of his narcissistic father. I don’t use that word lightly. I’ve spent a good part of my life coming up against my ex husband’s self-absorption, his controlling behaviour, and total lack of empathy, and realised a long time ago that it was pointless getting frustrated and angry – he isn’t going to change because he can’t see the problem. I had to make some terrible sacrifices as a result of the situation I was in. It wasn’t easy but I did the best I could for my son and myself.

Now the staff at my son’s assisted living accommodation are experiencing what I did for years with my ex – a complete lack of responsibility and integrity, even a tendency to outright lie when it suits him. My ex is free to live the life he chooses – and he certainly does – but when it hurts our son and threatens the security of his new home environment, well that’s a whole different thing.

The staff and myself are doing all we can on a practical level to improve the situation. Unfortunately when so much depends on one person’s willingness to communicate and getting nothing, there are real limits to be faced. I have taken some action which I feel terrible about and may not even change things, but I simply could not just sit and face the helplessness.

On a spiritual level, how does one deal with situations like these? Meditate, pray? Surely the real test of any spiritual practice is when we are facing helplessness in our lives. Unfortunately when I’m distressed the very last thing I feel like doing is sitting on a meditation cushion to find peace. I’m sure I’m not the only one. My mind is thrashing around, distressed, heartbroken, angry, clawing for a solution….but there is none. Maybe the only answer is surrender. But that doesn’t help my son either. My ability to accept what IS doesn’t change his suffering. Accepting his suffering feels like the ultimate NO. But what else can be done? Seriously?

Intellectually my mind starts making a story out of this. It has to be happening for a reason. The way life turned out. The way my son is. The way my ex is. I want to create some meaning and purpose out of all of it because it’s so devastating and unbearable and not in the least bit fair. How can I make it okay somehow? The answer is I can’t. It truly is awful….and no spiritual explanation will change that, whether or not there really IS a purpose to it (which I believe there is, on some level).

I really am back to acceptance. It’s all I have. But how does one accept the unacceptable – that my child suffers at the hands of a narcissist father and that life will continue to be painful for all of us? Indeed, how does anyone accept suffering? The Ukrainians are no doubt asking the same thing. People who have lost children through war and murder and suicide. Those who have suffered in other unspeakable ways. How do we find the will to accept and move forward?

It is said that love is the only answer. I don’t love the situation of course. Not at all. But I love my son and I hope on some level that will help him. Even if doesn’t, it may help me connect to the fabric of the Universe and see the reality, which is that the Universe is bigger than all this suffering. The Divine is in the midst of it – in me, in my son, even in my ex – and thus the journey will always return us to love, and none of us are alone in what we face.