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.