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.

Reflections on childhood and God

Over this Easter I have been thinking a lot about my childhood and realising while it was painful in many ways (very dysfunctional, disjointed family and chronic bullying at school) I have a lot to be grateful for. I spent a lot of time in nature, whether it was picking blackberries down the field over the fence that backed onto the bottom of our council estate, or hiding in a makeshift ‘den’ which consisted of a tree stump surrounded by overhanging hedgerow over the fence that ran alongside our house. I spent a lot of time in nature and had freedom that many kids these days can’t even imagine.

Most of all, though, I found comfort in the Bible. I took my Good News Bible down to my den and read it there. No one forced me to read it; on the contrary, I grew interested in it myself being an avid reader of Enid Blyton books where, being the 1950’s, every child went to church and Sunday school. I decided I wanted to go and my mum, being drawn to religion herself, took me every week. It was there I bought my Bible, some workbooks, and several wonderful books by Patricia St John about children of my age who were troubled in some way before finding God and becoming Christian.

My view of God was very simple. I could talk to him daily and did through the Bible workbooks I completed in my den. He was all powerful but loving and good. I wanted to be good to please God. That was massively important to me, so much so that I completed many notebook entries simply asking God to help me to be good. My childhood inevitably tapped into this need to be good because I was the ‘good child’ for my mum whilst my sister had severe mental disturbances and caused my mum a lot of pain. I wasn’t told to be good, however, and I certainly wasn’t threatened with God’s wrath if I wasn’t. The desire to find God and do right by him belonged to me alone.

In some ways I miss the simplicity of those years. I had no doubt that God had my back. I saw him as a loving parent, someone who cared for me. Someone who was always THERE. My view of God is now much more complicated. When I pray, I no longer feel just as though I’m praying to someone outside of me, but affirming something inside. God isn’t a personal being sitting on a cloud, but an energy that exists in each one of us and the entire universe. This means the power lies within and always has done. My childhood dreams of God enabled me to tap into that power and transform myself through my faith.

What I’m missing is that certainty, that focus, that point of power. I’ve lost that innocence and now my mind questions and critics everything. It’s no longer straightforward. I have purchased a few of the Patricia St John books that I used to read to help me tap into that energy again and the part of me that knew the truth no matter what form it took. I didn’t even consider any other forms. I didn’t question it. It just was. I’m finding my way back there through meditation and – yes- prayer, but I need to be mindful that I don’t get side-tracked by critical thoughts such as ‘but God doesn’t exist outside of you.’ Says who? God is everywhere, inside and out. It doesn’t matter what term we give it – God, Divine, Energy, Source – we are all part of it. But the point of power has always been within. The difference between the child and the adult is that the former didn’t know this, but the latter does.

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.

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.

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

Trials of dating, self-awareness, autism

I’ve been in a strange place lately. Despite intending to make my life more simple, I’ve ended up making it far more complicated. I’ve been dating someone and the first two dates seemed to go really well – he’s kind, caring, spiritually minded, accepting of my illness – but the third date fell rather flat. I no longer felt attracted to him. And it’s left me wondering whether it’s me and I’m incapable of investing in anyone on a consistent basis. I’ve had fairly few relationships in my life and the ones I have had lacked emotional connection due to my upbringing. I have spent years working on myself emotionally and spiritually and have also been on my own a long while. All this leads me to wonder whether I’m too introverted and self-aware to enjoy someone’s company for any length of time. That the problem isn’t the guy, or indeed any guy I’ve dated in the past, but with me.

I know the advice generally goes: be happy with/love yourself. And I get that, I truly do. I have lived alone for a very long time (17 years in fact, a long time for someone in my early 40’s) and my last relationship was 7 years ago. I still hold the notion that it’s possible to experience spiritual loneliness where you crave companionship whilst feeling happy with yourself. I suppose I just don’t know what I’m actually looking for because no one is going to want to talk spirituality 24/7 and I become bored with everyday conversation. And yet, how can I ever engage with someone if I don’t meet them where they are?

I actually wonder if I’m on the autism spectrum as well. This is a legit question because my son is severely autistic and my dad and uncle both exhibited traits. It would explain a lot; my social anxiety, my difficulties talking unless I really HAVE to or if it’s about something deep, my introversion, my high sensitivity and tendency towards over stimulation. None of those things alone would mean much, but together with my family history they point to a very real possibility of autism and it would explain why I feel such an outsider in more ways than one. But if that’s the case, how will I ever know what I truly want? Because I do get lonely sometimes. And I miss physical intimacy. Casual meet ups are not an option for me due to my illness and other factors. So I just don’t know what the answer is.

I’m probably going to meet up with the guy again because I don’t think three dates is enough to decide whether a relationship is right. But I’m mindful of hurting his feelings too. Other people seem to be clear what they know and feel and want. Despite my self-awareness, I don’t think I am. Maybe the world of relationships is just too alien to me.

Inflammation and mind/body connection

The humble tomato and myself are not friends.

I always suspected that I didn’t get along great with tomato based meals, but hadn’t had one in quite some time…until last night.

I had an especially nice spaghetti bolognaise using a recipe I found online. I have to say, I can’t remember ever enjoying it more.

A few hours later I was in bed when the restless legs started. I couldn’t keep them still. I was trying to meditate to a mantra as I often do before bed but the tingling and clawing sensations in my lower legs got so bad I was thrashing around for ages trying to get comfortable,

Eventually they did calm down and I was able to sleep. I woke up in the night with a blocked up nose. I didn’t think too much of it in my sleepy state, but when I woke in the morning and the sneezing became uncontrollable, I realised it was part of the inflammatory response. Sure enough, my legs ached painfully, my heart pounded, and I felt generally weak and unwell.

As I tried to begin my day despite feeling dreadful, I became aware of a horrible feeling of anxiety flooding my system – that fight-or-flight that so many of us are familiar with. It wasn’t the result of feeling bad, as I often feel bad, it was part and parcel of the inflammatory response. I had an intense need to cry, so I did for a time, even though I knew it was due to the tomatoes and that staying away from them for so long and then re-introducing a meal heavy in them had freaked my system out and made me feel physically and mentally unwell.

Tomatoes – nightshades – are high in natural toxins – and for so many people they worsen existing conditions. That doesn’t mean they’re not good foods with many health benefits because they are of course. But for those of us with auto-immune or other long term conditions, they can exacerbate symptoms dreadfully. Potatoes are also nightshades and I do have to be careful with those, but they don’t produce such an extreme reaction. Chilli peppers are another and I tend to avoid those, not being a fan of spicy foods generally.

It was a lesson for me not only in knowing I must never eat tomatoes if I want to avoid unnecessary inflammation, but in observing my physical and mental symptoms as the witness rather than getting caught up in identifying with them. I can see my body doing its thing and it’s incredibly frustrating and annoying, but that’s all it is. I’m not actually anxious, my body is on the attack due to the tomatoes. It feels threatened so of course it’s producing adrenaline.

Knowing all this means I can accept and let it go rather than adding another layer of suffering and mind-identification to the whole experience. And I can grow more and more knowledgeable about what to put into my body.

Being with the body

My health hasn’t been the greatest lately. I have to keep reminding myself to stay centred in the present moment and not get caught up in thoughts about past or future. Not easy to do especially when anxiety takes over, but I am learning more and more than the state of my physical body influences my mental health as much as the opposite: there is no separation. For instance, I have problems with my adrenal glands. They don’t produce enough cortisol so I struggle to manage stress and my body tries to over-compensate with flooding with adrenaline. This creates anxiety because my body is literally gearing up to fight. It also has the effect of intense crying; I suspect this is to release the energy associated with the release of adrenaline.

But I’m okay. In the moment I’m okay. This moment is all there is and I am connected to Spirit. I know that my soul is whole and free even if my fragmented mind and struggling body can’t always realise it. There has been a lot of stress in my life lately – my dog having a stroke, my mother being involved in a car accident, the pain of Christmas, and plain overdoing it to try and manage those emotions. Now is the time to bring everything home to the now and trust in life and in myself.

To anyone having a bad time with health or otherwise, I feel you. It’s a long hard journey, especially when well meaning people ask whether you’ve tried this or that and you’ve literally tried everything, so it brings you down. But this is your personal journey, as it is mine, and all we can really do is listen to our bodies and let them be our messengers. The body is in the present moment; it reflects what we think and feel. Our job is to notice and be with what is happening. If the body is saying it is under attack/threat, we can feel compassion for that state of being or at least accept it. Not resisting it, not pretending it’s not happening, but being fully with it. It’s really not easy, it’s painful and frustrating and devastating, but this is what I feel brings the greatest peace.