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 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.

A journey through raw grief to a kind of acceptance

Today was exceptionally painful for me. I wondered whether to even write about it but then I thought, well, it’s real life. Maybe someone will relate directly or even indirectly on some level because fundamentally we are all struggling with similar things – life’s choices, painful emotions, finding peace and acceptance in the muddiest and some of the least talked about issues to grapple with.

My adult son has severe autism and learning difficulties and has recently moved into an assisted living unit where he has support from carers 24/7. I visited him today and it did not go well. He hasn’t lived with me for a few years due to my own declining health and lack of ability to manage him but I have always visited even when it has been hard. He had lived with his father and stepmother but due to various issues they felt he was better placed in a structured environment where he could be given the support he needs. And indeed, he seems to be happy and thriving so far.

My pain is, and has always been, personal. When I got there my son smiled and seemed happy to see me, but soon became very stressed, and I was faced with the familiar challenge of feeling unable to connect with him. I forgot to bring his ipod for him to watch Thomas Tank videos on, and while I said he could use my phone, he was upset by this. He spent most of my visit biting his hands in anger, picking hairs off his clothes, not knowing where he wanted to be. I suggested we sit in the summerhouse, and he organised the trains that I’d brought for him, but he was soon bored by this and wanted to go back inside. I tried to talk to him, show him photos and videos, tell him things, connect with him – he just wasn’t interested. This scenario is far from new but today felt much more raw and painful as it was the first time I’d visited him in his new home and I hadn’t seen him for longer than normal. I had expectations of the visit. I felt good about going to see him as I’d heard good reports from the staff and his paternal grandmother. I wanted to feel he was pleased to see me. I wanted him to enjoy my visit. Instead, I felt like I was making him more stressed and unhappy. He didn’t seem to want me there. I left after an hour feeling deeply sad.

I’m recovering from a bad virus (the second in as many weeks) so I went to bed and sobbed. I felt so useless as a parent. I felt like I’d offered nothing of value. I longed for a connection with my only child and felt none. This struggle has been there for so many years. While many parents of autistic people find ways to reach their children, I never have. It’s not through lack of trying although in all honesty I’ve wanted him to enter my world rather than vice versa. The pain of bringing him games or dressing up clothes that he didn’t want has never gone away. As a small child he was happier playing with the bathroom taps or light switches. Not ideal. I tried to reach him but I had so little energy myself dealing with a chronic illness which eventually led to hospitalisation. He eventually lived with his ADHD father and life was easier but there’s always this sorrow that I don’t know will ever leave me.

I talk about acceptance a lot and I know that the ultimate acceptance is love – loving someone for who they are. This means accepting the child he wasn’t and the adult he isn’t and loving him for who he is no matter what. Even when he was a young child I knew this, at least in theory, and tried hard to do so. Of course I have always loved him as he is my child, but putting acceptance into practice has felt a whole different ball game. My son arrived tied up in my hopes and dreams of being the mother I never had and the need to experience a kind of childhood through my son which never materialised. Grief is multi-faceted and complex; it isn’t just one thing, but a whole kaleidoscope of emotions.

My son doesn’t exist to satisfy my need to feel loved or valued or connected. I have had to find those things elsewhere, including within myself. He could never give me the acknowledgement or validation that I craved. He couldn’t show me I was doing okay. In fact, he brought me to my knees many times, believing that I had messed everything up, got it all wrong, failed so utterly and completely. That has been my journey. It continues to be. I have no idea whether this was all meant to happen, was planned in some way, or whether it just randomly happened that evening in 2000 when I took his father back despite my better judgement. Life has a funny way of turning out. All I can do is surrender to it, trust it somehow, and believe in the perfection in this moment. And indeed, love is thinking about what my son needs now in this moment and being present to him, even when it’s different to how I wish it was.

While I was crying earlier the New World Symphony (Largo) theme suddenly started playing in my head, which many will know in the UK as the music from the Hovis bread advert. I have taken comfort in the lyrics which were created to fit the beautiful and haunting melody. My son is now in his new home and this is about me finding my journey home to myself, which ultimately, of course, is all we can ever do.

Going home, going home
I am going home
Quiet like, some still day
I am going home

It's not far, just close by
Through an open door
Work all done, care laid by
Never fear no more

Mother's there expecting me
Father's waiting too
Lots of faces gathered there
All the friends I knew

I'm just going home

No more fear, no more pain
No more stumbling by the way
No more longing for the day
Going to run no more

Morning star light the way
Restless dreams all gone
Shadows gone, break of day
Real life has begun

There's no break, there's no end
Just living on
Wide awake, with a smile
Going on and on, going on and on

Going home, going home
I am going home
Shadows gone, break of day
Real life has begun

I'm just going home

Being the awareness that holds it all

Yesterday was not a good day. Some heavy emotions had hold of me and all I could do was let them have their way. Sometimes distraction works but this time it didn’t, and I felt intuitively that I needed to be with what was happening, that it was not an episode of depression that I could pull myself out of with some uplifting words or music. It was grief determined to be acknowledged and heard.

The challenge was letting the emotions be without identifying with them. I was tempted to revert to familiar narratives such as ‘my life is pointless’ ‘my opinion isn’t worth much’ and ‘this is all hopeless.’ They took me further into the cycle of pain until I realised what was happening and re-centred myself in the present moment. Because the key to healing is being fully with what is happening, accepting and being compassionate towards it, but not losing oneself in it.

I don’t reject those narratives because I understand why I’m experiencing them, I just don’t lose myself in them. My wounded inner child felt pointless, worthless and hopeless for many years. Unfortunately, she has had many reasons to feel like that. She has a voice that demands to be heard. She is part of me, but I am not her. This means I can learn to integrate her within me as I offer myself a loving space; embracing everything and rejecting nothing. Eckhart Tolle calls this the awareness or presence but it may just as well be seen as the Divine within, the Higher Self, or the Soul.

Emotions are energy that is moving through us for a reason – to make us aware, to wake us up, to transform us. They are meant to be felt and embraced as the messengers they are. But they are not who WE are. Like our thoughts, they exist for a time, then they move on. My challenge is to let them be without losing myself in the story around them and believing the story again. It FELT true once, but that doesn’t make it true then or now. Anchoring myself in the present, in my body, I can feel that truth and become the awareness that holds all of it.

Family, being triggered and grief

Ram Das once said ‘If you think you’re enlightened, spend a week with your family.’ Now, I don’t think I’m enlightened at all, very far from it, and I’d be suspicious of anyone who said they were. But I have worked hard on my spiritual awareness and can access a certain level of inner peace when I keep my focus on being in the present moment and responding from love rather than the less conscious and wounded part of my personality. However, Ram Das was right on point by saying that it’s our family who trigger us the most.

Even after all these years (I’m in my 40s) the essence of my struggle lies in not being able to let go of the wish my family were different and the need to belong to some sort of family unit. Even as an adult this need has been denied me for so many reasons. I try to see the positives; I am free to live my own life in the way I choose now and I don’t have to answer to anyone. But somehow this need survives and at times it is all pervasive. Christmas stirred it all up of course but the reason I am writing this is not even about Christmas, it is due to the realisation that deep down I still carry hope and expectations that my family will change and so many unconscious wishes still underlie my (albeit limited) relationship with them.

I know that how they were and are with me is not personal. There’s some sort of comfort in that. Most relatives don’t even know me as a person so it couldn’t be personal. A baby came into the family at a certain time and it happened to be me. Their lack of interest wasn’t a reflection on me but what was happening in their life at the time. For years I blamed myself because, well, as a kid you always think it’s your fault. And if it’s your fault you can potentially fix yourself. There is a lot of grief in realising there’s nothing you could have done because the problem lies elsewhere. It’s freeing, for sure, but devastating all at once.

It’s so hard to break free from longing for a ‘proper’ (I hesitate to use the word ‘normal’) relationship with my family. I get on well (on a surface level) with my mother, so it’s not even the lack of a parent, albeit we don’t have a deep relationship; it’s more the longing for a sense of belonging because growing up that just wasn’t there. My family was divided in ways that I can’t begin to write about despite living in the same household. There were secrets and rules, family members I could talk to and those I couldn’t. Nothing was ever said, only implied. Mental health issues were rife. I wasn’t brought up, I pretty much did it all myself. I was so withdrawn at school that I had very few friends and was bullied. I turned to God so I never felt truly alone even though I was terribly lonely in my family.

I’ve moved on. I’ve had loads of therapy. I’ve come to terms with so much of it. And yet…there is a part of me who can’t let go, who is still crying out for external acceptance and belonging, to know I am valued as a family member. I’m still seeking their approval even now. I’m glad I have realised this so I can grieve for what never was and won’t be. I don’t need anyone’s approval any more other than my own, it’s just so sad for my inner child who longed for it when she should have been given it. I know I’m far from alone on this healing journey. I’m grateful for that knowledge. That and my spirituality gives me strength.

Thinking of those who are struggling with similar issues around families. I hear and feel you. You’re not alone!