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.

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.

Only love is real

A few days ago I was crying hard when I had an epiphany. I realised with utter certainty that my entire life has been preparing me for what I’m currently going through – a shedding of the old me; a peeling away of the layers of conditioned self that I have wrapped around myself for comfort and familiarity; a removing of the desires that keep me entrenched in this way of being.

Suffering breaks our heart open, if we let it. It makes us realise that we were never in control and never will be. That is an illusion. There is the conditioned self and there is the soul who expresses through the personality structure as love itself. My conditioned self is falling away, bit by bit. It isn’t needed anymore. Everything it wrapped its identity up in is disappearing. Only love is left. Only love is real.

Mother’s Day for the unacknowledged

It’s Mother’s Day today in the UK. As many of you know, my son has severe autism and is non-verbal apart from the occasional word. He is now 20 so for many years I have come to terms with the fact he will never say ‘I love you’ or ‘Happy Mother’s Day’ or even have any concept of the latter. Today is all about acknowledging mothers…which makes it incredibly painful when your child does not give much back. It is the ultimate journey towards unconditional love because loving a profoundly learning disabled child is not a two way street in the conventional sense. On rare and brief occasions my son has shown love towards me, such as putting his hands on my face, but not for many years. I have no idea whether I have done right by him but try to trust that like any well intended parent I did the best I could, even though the fruits of those intentions are not obvious in ways they might be for others.

I’m not going to deny that today is very hard. But I know it’s hard for many people for a whole host of reasons. I am thinking of all the mothers who don’t experience the joy of being acknowledged on Mother’s Day….and sometimes any other day. Those whose child/ren are sick, profoundly disabled, mentally unwell, estranged, or have passed away. Mothers who can’t have children. Mothers who might have been. Children who have lost mothers. Mothers who have lost children. There are many ways to feel loss on Mother’s Day in particular. I am holding everyone who struggles in my heart today ❤️

The unconditional love in my grief

I seem to be shedding bucket loads of grief at the moment. I’m in a kind of transition period where I’m integrating my past with my present and acknowledging where I have been stuck and releasing those old energies. That said, I’m not sure the grief will ever fully leave me. I suspect I will reach a point where I can accept my son for the way he is and not feel so sad and angry for how life could have been for both of us. However, I’m not sure I will completely stop looking at other people’s children with envy and disappointment. Maybe I’m selling myself short though. It’s possible I will one day truly take in the knowledge that I was never meant to have a typical child or be a typical parent. And my child was never meant to be anyone other than who he is. I thought I’d accepted those things years ago but although I understood them logically and thought okay Universe, this is my lot, I never took them in and felt them in my heart. That’s not unusual for me because I was very dissociated from my emotions as a child. I’m also highly likely on the autistic spectrum myself, a fact that seems even more likely the more I think about how I was back then and how I am now.

I visited my son at his assisted living accommodation yesterday, not for the first time, but the visit went badly again. He didn’t want me there. He started off very calm and I felt massively relieved, but very quickly he started telling me to go with the word ‘bye’. He repeated it over and over while I tried to tell him I wasn’t going yet, that I was there to spend time with him. He became so distressed that in the end I had to leave, even though it was half an hour before I was due to be picked up, since I don’t drive. I realised that although it was difficult for me practically and emotionally, this was about my son and he clearly didn’t want me to visit. I had to accept that. It’s probably one of the most painful things I’ve ever had to do. The staff at the home gave me a card and some flowers for Mother’s Day from my son, which was incredibly kind, and it was hard holding back the tears enough for them to think I was absolutely fine about my son not wanting me there, that I was only thinking of him.

I went to lunch with a friend straight afterwards which with hindsight wasn’t the best idea, either physically or emotionally. I was shattered. I’d spent every bit of energy I had on the half an hour visit with my son. My friend isn’t the the empathetic sort and hasn’t seen my son in many years. He doesn’t even know how severely autistic he is now. I wanted to get home and cry, which I eventually did. I’m not ashamed to say that I wanted to get a bottle of something – maybe for comfort, dissociation, I don’t know – but I didn’t in the end. I kept reminding myself how crap I would feel the following day, how anxious and depressed I’d be, feelings that I’m struggling with anyway, never mind with alcohol in my bloodstream. There is a better way and that is knowing grief is beyond awful, but it doesn’t last forever. The light will come and illuminate my path and understanding that this was meant to be exactly as it is. But in the meantime it’s excruciating.

On a practical level, I’ve decided to keep my son’s visits very short and as much to a regular schedule as possible so he knows when to expect me. I’ll make clear when I arrive that I’m not going to stay long but want to see him to make sure he’s okay, and to let him know that I’m always here for him. Beyond that, if he wants me to go, I will go. The focus has to be on him and his needs. Then in time if he wants me to stay, I will. I have to tap into my unconditional love for him that expects nothing but gives the best I have.

Last night I had a very deep dream that I was climbing along a thin bridge made of rope on my hands and knees. There was only a small barrier on the right side and nothing at all on my left. I was terrified of falling off and disappearing into the abyss, but I kept going. I felt I was travelling upward and it was really tough but I was determined to keep going. At some point the bridge disappeared entirely and I found myself floating in a beautiful blue ocean in complete peace. I had no worries anymore – I was light and free. Such dreams give me hope that I’m heading in the right direction and my struggle doesn’t mean I’ve gone wrong – life was never meant to be easy for anyone. I don’t understand why and never will. But like Matt Kahn once said ‘in a world of questions, love is the only answer.’ So love it is. Love for my son and -I hope- love for me too.

From confusion/judgement to love and compassion

I’ve been feeling quite confused and preoccupied lately following my son’s move into assisted living and my own up and down experience with the emotions of dating. I haven’t reached any real conclusions about the latter, only that I find it hard to trust my emotions, maybe because I’m aware that emotions are temporary and not truly who I am. Even so, I wish they would provide me with some consistency and less like I’m completely insane. I went to bed last night feeling very low and genuinely wondering if there was something wrong with me. Yep – it always seems to boil down to that. Maybe because the root of all this pain is feeling disconnected from my soul and from God/the Universe. I thought my dating experience was a way to share my soul and give love but maybe subconsciously I HAVE been trying to fill a gap that historically I’ve filled with spiritual practices such as meditation. Maybe none of this will ever make sense until I make connecting with my soul a priority again. I haven’t stopped meditating but my energy has been elsewhere, seeking experiences that will never make me whole.

I don’t know how relevant this is but it FEELS so. Last night I had a dream that I was adopting an African child of about five years old. She was absolutely beautiful – very long, wiry, black hair. I was aware she was called Shia. I carried her on my hip. Then I went to see her biological parents who were giving her up for adoption. I referred to them as ‘Mummy’ and ‘Daddy’ for Shia’s benefit. Then I looked at the parents with love and compassion and said ‘I know you don’t want her but there’s no judgement. I completely understand.’ My thoughts turned to my own son and my struggles to raise him, and I truly did.

The dream felt very comforting on my waking and I wanted to explore it further. I feel it relates to my feeling very bad about myself last night, that there’s something inherently wrong with me and my emotions. This may have been projected onto the parents in the dream who felt wrong for giving up their little girl. Maybe I need my own love and compassion and assurance that no one is judging me. My ego feels judged. That is a powerful thought. Judged by whom? Or maybe it is guilt at feeling disconnected from my own light. Interestingly, the little girl may represent my wounded inner child who is looking for safety and love and acceptance – again from my own being. No one else can give that to her, at least, not in a way that assures permanence. The parents rejected her, representing those part of myself that are rejecting my innocence, as well as the literal context of feeling guilty about my autistic son. Finally, I looked up the name Shia and it means ‘God is salvation.’ This reinforces the whole meaning of the dream – and I use the word ‘whole’ with intent – as it’s all about listening to my soul, loving the aspects of myself that are wounded and scared, and bringing it all to the light of awareness and compassion to become whole. This is our salvation.

Someone once said to me – a Jehovah’s Witness no less, but then I don’t discount anyone’s beliefs if they resonate with me on a deeper level – ‘Put God first, then everything else will fall into place.’ I’ve never forgotten it because I recognise the truth in it. Humans have human experiences and there’s nothing wrong with that – it’s what we’re here to do. But losing contact with our soul is a recipe for suffering and leads to a dish of emptiness and misery. I know now that I feel judged when I have lost my connection with my inner being. No one is judging me; I’m doing that to myself, only turning it into guilt and shame. This is as old as time. It’s the fall of Adam and Eve. The way forward is to recognise it and pour our compassion on it. In my dream I even used the words ‘there is no judgement.’ What a relief to hear! We judge ourselves because we know deep down we’re not embracing the perfect, beautiful, holy beings that we truly are.

While I’m not in that place yet, I believe that bringing myself back to a place of deep spiritual connection will bring some clarity to the situations I’m struggling with. I won’t be throwing myself into dating longing for it to bring me answers, or for my emotions to suddenly make some kind of sense. I will know intuitively what I need to do and what is right for us both. And likewise, seeing my son from a place of connection and wholeness will mean not desperately seeking something from him that can never be and feeling upset when he can’t give it. I need to get out of my own way. I need space to find myself again.