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.

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.

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

Finding who I Am in the struggle

I intend to always be honest in this blog about my struggles. And life can be a struggle. I often feel that I’m in a dark night of the soul experience with a genuine glimpse of the light ahead but with a little way from fully embracing my existence as a spiritual being.

My life has been about loss. I grew up in a dysfunctional family where secrets and divisions were the norm, as were isolation and loneliness. I turned to God as a coping mechanism and thereby started my spiritual path where I never felt truly alone in the world, even though I very much did in my family.

As an adult I married young in the hope of creating the family unit I had always craved. Unfortunately my ex husband was also a product of his own wounded upbringing (as are so many of us) and our marriage was painful and abusive. We had our son very early on and loved him dearly but by the time he was three he had a diagnosis of autism and learning difficulties, which would turn out to be severe.

I loved being a parent in so many ways, but it was desperately hard. I had already fallen very unwell at university in my teens, and my health deteriorated as I tried to cope with my son’s challenging behaviour and hyperactivity. Our marriage ended as I realised I simply couldn’t stay with someone who treated me as if I was worthless. It was the first sign that I was starting to respect who I am, despite everything.

Life as a single mum with severe health issues and an autistic child was very tough and lonely. I fell into a deep depression. I felt fluey and weak all the time. I tried my very best for my son and was grateful for support from a very good social worker (yes, there are such things!) but my ex lacked empathy and understanding. He had our son at weekends but turned up and brought him back to his own timetable. He couldn’t see things from anyone else’s viewpoint.

To cut a long story short, my health got worse and worse, both physically and mentally. I was housebound. Carers came to take my son out to activities that I couldn’t manage. I tried to give my son a good life. On the few times I managed to take him out, such as for a meal, it was a disaster. He ran around the restaurant grabbing food off people’s plates as I desperately tried to control him. People looked at me as if I was scum. I went home crying my heart out. This wasn’t what I signed up for. I’d envisaged being the mother I’d never had and setting the boundaries I’d never experienced. An autistic child wasn’t part of the deal.

When my son was 10 I ended up in hospital with my POTS and from that point on my ex took over. And when I say took over, I mean took over. He dictated when I could have him and for how long, and as I was so unwell and completely within his control, I agreed to anything to see my son. Eventually he stopped me seeing him completely. It went to court and from 2015 onwards I began to see him at a set time at his mother’s house. Finally, for the first time in my life, I had some sense of peace. I could see him for a length of time I could manage, with the support of someone else, and away from dealing with my ex.

Now to the present day. After a brief period of my son coming to my home and myself trying to manage but realising for many reasons that it was not safe to do so, my son has been moved into accommodation with several other young autistic men who are supported to achieve the independence they can but with the aid of 24/7 carers. I can visit him without answering to anyone else. I do not see my ex anymore.

It has been a long hard road. I am still unwell but since 2015 my health has started to pick up. I am still picking up the pieces mentally as well. I drew on my spiritually for the many years I was caring for my son and sick, but I always hoped it would make things better, which it never did (false assumption on my part). However, it gave me strength and without it I know I would not have survived. I trusted that there was some purpose in my experiences even though I couldn’t understand it. I knew my son was teaching me so much about love and I knew that some day it would all make sense.

My life is peaceful now. I live alone, I am starting my own business, I am improving health-wise, I have good friends, my dog, and I have proper access to my son. But I am still sifting through my life and wondering what the hell happened and how I move forward. There has been SO much loss. But maybe it was to prepare me for the realisation that who I am is so, so much more than all of that and I cannot rely on external circumstances to provide the validation or love I crave.

I believe this part of my journey is about continuing to grieve the losses, especially of a family life, both as a child and a parent, because I wanted both so badly. But also to let go and surrender to the light of who I really am. I can’t bypass my pain or my life to date – nor should I want to – it all happened. My son is a beautiful soul who helped me trust in my own worth rather than relying on acknowledgment from him that I was doing okay.

Maybe my journey has always been about trust, no matter what is taken away. And that I’m strong and resilient. Despite everything I have myself, and my own love.