A dream of my son

Many years ago when my son was 9 years old I had a dream that I have never forgotten. He was talking to someone about me and told them his mother was beautiful and still a teenager. (My son has been more or less non verbal since birth.) I was so excited (within the dream) about this that I started telling a group of people that my son had actually talked to me! I told them ‘it was real, it wasn’t a dream, I’d know if it was a dream’ Then a powerful wind started to blow me off my chair and I held onto a person next to me as the energy swept me almost completely into the air. At this point I woke up to the sensation of energy pouring down my head and arms like water. I had been attuned to reiki a couple of years earlier and believed that was what it was.

I’ve had many amazing dreams in my life but this one really stands out. I’ve never had one like it before or since. My son has never talked and most likely never will, beyond a few words. I’ve grieved a true connection with him my entire life. Around the time when he was 9 years old, I was profoundly depressed, so some may say the dream was wish fulfilment, something I desperately wanted so I concocted in my mind in the form of a dream. But I knew it wasn’t. There was something sublime about it, reinforced by Divine energy surrounding me both in the dream and on waking. I think it was showing me that this life has a purpose, as painful as the situation is.

I wasn’t a teenager when I had my son, never mind when he was 9! But I think the dream meant that developmentally I was still learning, still growing, still evolving. I was a soul on a journey and I was nowhere near maturity, but I was developing in my own time and way. It’s interesting that my dream refers to the notion of dreams and reality – what are they? I remember feeling so strange in the dream as the energy began to lift me up, as if it none of it was real – but what? Did I mean my dream reality or the waking world? Is there even a distinction? I said ‘I don’t feel real’ right before I re-joined the world of the awake – did I simply know I was dreaming, or did it point to something more profound: that none of this is real but the expression of Divine energy? Even my son talking in the dream may not have been real but another expression of the energy manifesting in a form I wished to see, needed to see. In that sense, maybe it actually was wish-fulfilment, but for a deeper purpose; to enable me to remember what life really is and connect with it, allow myself to immerse in it, know myself as it.

As I look about me, I am often filled with such intense grief that I have not had the opportunity to connect with my child in the way I always wished, and now, at age 43 with a chronic illness, the odds are that I never will. It is easy for another to say ‘make the best of life as it is’ but far harder to do, especially when I have craved connection all my life. In some respects I don’t even want another child, I don’t have the energy for it anymore, but I wish life had been different. Sometimes this wish consumes me. I will never be a grandmother, nor get to share memories with my son, look at photographs. Little things like that hurt massively.

It is a complicated grief because my son hasn’t left this Earth, he is very much alive. Yet I still feel the loss of him immensely. I feel the loss of everything we didn’t have and never will. I miss what could have been. What does one even do with this? It’s not something that goes away. So I remember the dream that brought me some level of comfort. Hearing him talk within it is something I can never forget. I am so grateful for that. And he acknowledged me; he said I was beautiful. That touches my heart. I doubt I will have another dream like it but I pray it stays with me and I will understand it’s true meaning for my life.

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.

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.

My suffering and the story of Jesus

The story of Jesus reminds me that suffering doesn’t have to separate us from God or mean that we have failed, it brings God to us, right here, right now, suffering with us and for us and AS us.

I haven’t posted for some weeks because I’ve had so much going on, some good, some bad, mainly bad. I went abroad for a few days to Turkey, something I’d wanted to do in many years but been too unwell. It wasn’t easy but with special assistance booked and a mobility scooter hired I managed it and feel very happy that I did.

Unfortunately, I knew in advance it was a risky time to go away with everything going on with my son but it was booked ages ago and the only time my friend and her family could make it, so I took the chance. The last night there I heard that my son had been hospitalised due to unmanageable behaviour and his grandmother was no longer capable of having him. The previous assisted living staff did all they could but are no longer involved. My son remains in hospital. There is now a new care agency supporting him there, but no accommodation for him to be moved into. There is no medical need for him to be in hospital and no clinical need for mental health sectioning. Whilst the professionals involved are trying hard to find accommodation, there is nothing.

I can’t put into words the pain of thinking of my son in hospital and exactly what happened when he got there. Sometimes pain is beyond anything I could say. All I can do is have faith that something will work out for him. He DOES have a placement to go to in the autumn but it’s currently a building site and won’t be ready until September at least. This is something to be thankful for despite the wait. The problem is finding somewhere for him in the meantime.

For a lot of my life I’ve believed that suffering separates us from God/The Divine – that if I’m experiencing ‘negative’ emotions, something is wrong and I’m not feeling God’s peace. It is true that when we become still, we feel the peace that passes understanding – that goes beyond the mind. We leave behind our troublesome thoughts and experience what is always present. But God is there in the suffering too. Regardless of what one believes about the story of Jesus – fact, fiction or myth – its point is that God isn’t apart from this world, he entered into it willingly, showing us that through his creation we are all part of him and never alone.

The symbolism of the cross and the entire crucifixion is the state of being crucified between Heaven and Earth – not fully human or Divine, but a bit of both – and existing in that space, neither here nor there. It’s a tough place to be once one fully realises it. I feel lost in this world, devastated by my suffering, my son’s suffering – neither of us belonging here or anywhere; myself longing for my spiritual home to the point nothing motivates me here but the need to become fully immersed in God. This is why the religion of my childhood – Christianity – draws me in – its a faith of love and suffering and promise of resurrection – what some may call a new state of consciousness, a living with Christ, in whatever form that takes.

I’m holding onto that faith. Right now it’s all I can do.

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.

Keeping the faith

Not for the first time I feel like Job in the Bible asking ‘why’ in the midst of despair.

Some time ago I mentioned to a therapist that I often wondered ‘why me?’ during my painful struggles and she said that when she said the same many years ago people in her circle used to respond ‘why not you?’ There is a bitter truth in that. We cry out from the depths of our hearts. Our pain feels so deeply personal. So much so that God/the Universe must have done this to us. Like Job, we feel wronged. We know we’ve always tried our best, or even if we haven’t, we’ve made up for it somehow. So why did this terrible event/situation/tragedy occur? No one has or ever will have an answer to that beyond that suffering is a given and no one is spared. It’s just that some people seem destined to suffer much more or less and the only way forward is to somehow trust that it’s all unfolding how it’s meant to be because otherwise it would be different than it is.

Yesterday I heard that my son is being evicted from his residential home. I knew how much the staff were struggling with him but somehow I never thought this would actually be the outcome. I feel bone-crushingly sad. I have no idea where he will go now. It could have been such a lovely home for him. Those are the words I seem to constantly repeat in relation to my son: could have been. I pulled out all the stops to try and make things easier for him so that his behaviour may improve but it hasn’t worked. I know there is a lot of hurt in those words. I feel affronted that none of it made any difference. It’s a deep-seated wound that nothing I’ve done has made a difference to my son but I know that isn’t true. It springs from my sadness that I wish life had been different for both of us. And I know if I hadn’t become so sick/hospitalised and that if my ex wasn’t the way he is, things certainly would be very different now.

And therein lies my struggle. It drags me down like a lead weight until I feel I have no strength to fight. Giving in feels too much, too painful. So I frantically search for a way out, considering all the addictive tendencies I’ve had in the past as a way to escape unbearable feelings, but not able to bring myself to go there because I’m too aware, too conscious of my actions and their consequences now. I’m left with raw pain that isn’t going anywhere anytime soon. I can’t cry either so I’m just staring listlessly into space and waiting for someone to ring me – my son’s social worker, the home, a family member – so I don’t feel so desperately alone with it all. At the moment it seems the social worker will call tomorrow. I don’t yet know the way forward.

I’m remembering a scene from the movie ‘The Shack’ (wonderful movie, btw) where the guy is in a boat which is breaking up, a metaphor for his terrible pain and struggle over the abduction and murder of his young daughter, and Jesus walks up to the boat, on the water, telling him to ‘have faith’ and ‘look at me’ because each time the guy focused on his suffering, the boat broke apart more and water poured in. Eventually, the guy found his faith and climbed out of the boat onto the water with Jesus, finding himself able to walk back to the shore. This is a natural re-telling of the Bible story where Jesus told his disciples to have faith. I don’t believe the walking on water was literal, although who knows it may have been, but a metaphor for our ability to overcome our emotional pain when we keep the faith in something bigger than ourselves, whether that’s God, the Universe, or our own soul/higher/Christ self.

The Bible is all about faith in the midst of terrible suffering, as well as the human need to cry out and ask ‘why’ when we are hurting. Whilst there’s never any clear answers to why we suffer, what’s certain is no one is alone, and while life is desperately hard sometimes, with faith we find the strength to keep moving forward.

Acceptance in the midst of it all

I was talking to someone about acceptance. She asked how I was doing with accepting my son the way he is.

I replied that maybe I was a little further along, but that in all honesty, I wasn’t sure I’d ever stop wishing things were different.

This was the same day I found out that my son had punched a carer in the ribs, forcing her to go to A+E due to swelling.

On reflection, there are many layers of acceptance. If I can’t accept my son the way he is without sadness and longing for things to be different, THAT is where acceptance lies: in my longing, in my heartbreak, in the sitting with my son feeling helpless that there’s no way to reach him, in the knowing that even as his mother I am so very limited. Acceptance happens through each moment. It might look and feel different on any given day. It’s not somewhere in the illusionary future, but right here, in the midst of it all -the entire diabolical mess.

Learning what love REALLY is

After a full night of dreams I woke up with the well-known song ‘I want to know what love is’ by Foreigner playing in my mind (lyrics after text). As is often the case when this happens, I can’t think of more apt words to describe my situation right now.

I went to see my son yesterday. As much as I tried to tell myself not to push anything on him, not even in my attempt to connect with him, I did just that: I tried to show him a photo on my phone and asked him who it was. He refused to look and chucked any name back at me. I insisted that he looked properly and he flipped out and punched me on the arm.

It’s a familiar story: I try to connect with him in any possible way, he doesn’t want to, he gets upset, I retreat. It’s been this way for as long as I can remember. The difference is that now I’m really trying to put him first and not force on him my desire to connect with him. I’m trying to stay in a place of unconditional love and think of his needs, not my own.

It was never going to be easy. I look at him and long to reach him in some way. Maybe I do, just not in the way I wanted. Life has brought me to a place where I have to set aside my own grief, abandonment, unmet expectations, and think about what is right for him. Some parents seem to do this automatically but I never have; it’s something I have to learn, over and over again. And I admit, I don’t really know how.

That’s where the song comes in: I want to know what love is. Yes, I truly want to know. How do I love my son in the way HE needs, not in the way I want to love him? How do I let go of everything I wished for – all the unfulfilled pain of my upbringing and need for a family – and be in the moment with my son, having no expectations?

It’s a sacred journey. It really is. It’s a stripping bare of everything I thought I was, wanted to be, longed to have. I don’t know how to do it. Maybe the love is surrendering to not knowing. For all my spiritual knowledge, my son is my greatest teacher.

In a dream last night I was saying ‘I’m sorry’ over and over again like a mantra. I can’t remember the context but it felt deeply spiritual. I think it was coming from the part of me who knows as a human being I’ll never get it exactly right. Psychoanalyst Winnicott described the ‘good enough mother’ and that is important for me to remember. Love and compassion starts with myself. I’m not perfect and I’m doing my best. Maybe the willingness to love my son unconditionally despite the difficulties is enough.

I want to know what love is by Foreigner

I’ve gotta take a little time
A little time to think things over
I better read between the lines
In case I need it when I’m older

This mountain, I must climb
Feels like a world upon my shoulders
Through the clouds, I see love shine
Keeps me warm as life grows colder

In my life, there’s been heartache and pain
I don’t know if I can face it again
Can’t stop now, I’ve traveled so far
To change this lonely life

I wanna know what love is
I want you to show me
I wanna feel what love is
I know you can show me (hey)

Gotta take a little time
Little time to look around me
I’ve got nowhere left to hide
Looks like love has finally found me

In my life, there’s been heartache and pain
I don’t know if I can face it again
Can’t stop now, I’ve traveled so far
To change this lonely life

I wanna know what love is
I want you to show me
I wanna feel what love is
I know you can show me

I wanna know what love is (I wanna know)
I want you to show me (I wanna feel)
I wanna feel what love is (I know, I know, and I know)
I know you can show me
Let’s talk about love

I wanna know what love is
(Love that you feel inside)
I want you to show me
(I’m feeling so much love)
I wanna feel what love is
(And you know, you just can’t hide)
I know you can show me

Oh, I wanna know what love is
(Let’s talk about love)
I know you can show me
(I wanna feel)
I wanna feel what love is
(And you know you just can’t hide)
I know you can show me
I wanna feel what love is (oh, I wanna know)
I want you to show me

Songwriters: Jones Lesly, Jones Michael Leslie
For non-commercial use only.
Data From: Musixmatch

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.