My brain feels so fragmented being constantly divided between watching my daughter and trying to let my own focus unfurl to a depth at which I can see and think clearly… Peace and Quiet hasn’t existed in my world for a loooong time… But I manage to get pieces of quiet from time to time when i can let my sympathetic nervous system out of it’s overdrive state and give my brain and body a short service (as in how you service your car so it doesn’t get run down and fall into disrepair).
My favourite way of doing this is to catch the morning or afternoon sun somewhere… preferably on my own or with someone who can attain a similar state and isn’t going to talk my ear off and prevent my mental detox from happening…. I close my eyes and let my eyeballs roll up a little, and, facing the sun gently, just feeling it’s warmth sensation on my face, and relaxing for a few minutes/ breaths… and then take the awareness inside my eyes and up into the head cavity. It’s like I’m softly looking into the centre of my brain and through my forehead at the same time. I am aware of different areas of my brain and kind of feel the middle/centre gently and without effort…. So I have awareness on my breath… just of the rise and fall of the breath, the sensation inside my head cavity, and the feeling of warmth on my skin.
Someone said that the mind can focus on a maximum of three things at a time, so holding this attention gently… chemicals and chain reactions start to happen and my nervous system gradually shifts into a parasympathetic state. I can actually feel when it clicks over and my brain starts releasing serotonin. OMG, it feels so good and like little bubbles are gradually releasing the crinkles of my brow. That’s the only way I can explain it. I also experience a sense of releasing and lightness …like bubbles of champagne escaping through the top of my head… and being drawn into divine connection with my Source/God. From this state i can be in a state of bliss for several minutes or even hours… sometimes I can lay all day in this state… It’s so healing.
Sunshine is an important element in getting the endorphins to start releasing for me. And if i “try” or make any effort… it doesn’t work. I just have to release and surrender. That’s all there is…. It takes time, rather like defragmenting a computer… My mind automatically starts to unravel things, let’s go of what it needs to, and begins to feel soothed. After some time I then start seeing possible solutions or sometimes have flashes of inspiration seemingly out of nowhere…. anxiety lowers and I can FEEL the world around me again.
I haven’t had a lot of time to do this lately. My ears are full; my mind is in ultra-dense compaction mode, my eyes feel like deep circles of space and time skims their edges sharply overhanging a dense glare. I can just never seem to get my energy back and firing no matter how long I sleep or close them for… It would be so simple if i could just take myself off somewhere and not listen to my daughter constantly echolating. If I could just focus on what “I” need, for a little while… my own divine source, my connection with my God… gee my life would be that much more liveable and I could have a much nicer and brighter outlook than what I have when I’m a moody grumped-up terd-ball of mental and attention-fatigue… in a state of constant alert – always anticipating the next onslaught… approaching a state of dysfunction and emotional blankness. How to continue in this delirium?
Breathe. Just Breathe…
Even just a little bit.
The outside world is secondary. Just focus on primary… That’s me. I have been trying to get clear; trying to express my vision. “Trying” to explain my plan to numerous agencies – “Trying” to make it some kind of readable presentation that I can hand to people. It hasn’t “happened”…. I sink under the waves again… Hoping I can come up for air again and give it another go…
This Vision is multi-layered and hard for me to put into a logical sequence… I can express through pictures and mind maps but when I try to sit down to write, so many aspects seem to overlap and amongst LIFE happening and building a house, and, even though I’ve been able to take time out from Freyr and develop myself while living overseas, having time to sit and “study” still evades me.
It takes me some time to sink into a state of deeper concentration where I can see the whole picture and address “chunks”… It’s like I’m writing a novel or essay… and then I am invariably interrupted… by my daughter’s needs (like now… she’s grabbing food and making a mess everywhere) and before that she was sitting rocking – shaking our bus -making her usual echolations and gutteral/grunting sounds. I just seem to have these windows between 3 and 5am to utilise – which I Can when I can sit somewhere on my computer and not wake Freyr or other people in the bus/household… But it needs to have input from others and to be co-evolved at some level if it’s going to be relevant to people other than just myself – and it’s nature is about living IN-COMMUNITY… I need to facilitate a space and time where parents/carers can come together and DISCUSS this stuff (without having to turn around every second/few minutes to check what’s going on with their ‘kid’).
It feels like it’s been SO LONG that I have been “trying” to express this vision. Without Time, the most valuable commodity; without Support – I just Can’t do it. I would like to receive input from others, find other families with a similar vision and have the TIME to envisage a way of living where as parents/carers, we can have the necessary time to regain our mental health by not being in a constant state of overdrive… to be able to enjoy peace of mind and be able to lean on others for support. Just to take some time out for half an hour to have a break and go for a walk or just lie in silence and RESTORE internally.
Just yesterday i felt incredibly angry and resentful towards Freyr and felt like I was going to lose my shit for a few minutes. Today there’s a slow-boil happening… like every time she sniffs the snot back up her nose (even though I’ve wiped it 5-6 times already today)… I feel a small rasp on my nerves. It’s unnatural to be living in a situation like this and, there’s no way I can endure this for very long no matter what enlightened plane I sit on in the morning… well actually I didn’t get to sit on that plane today …
Right now i want to go back to Bali and leave Freyr with our carer and go somewhere very very quiet for a few days and not have to deal with all this stress and responsibility for “trying” to plan her life ahead; just go and be alive and be able to do and share in my life and freaking Have a life!!! This state of sitting waiting for a government agency to give me information or determine how my daughter can or is going to live her future life does not sit well with me AT ALL.
I want to enjoy being around people again! I want to enjoy being able to have a normal conversation that just flows like a stream and doesn’t have to go anywhere… I want to just co-exist with other people and be part of my daughter’s life without having to be on constant alert looking after her. I’m exhausted! But tomorrow I’ll fight again.
2 September 2019
I wrote this post after 2 weeks of being in Australia with my daughter unsupported… living in our bus…. I edited out the rambles and can see so clearly the effect of the stress of looking after my daughter has on me.
I am so privileged to have been able to live in Indonesia and afford a full-time carer to help me for the past 3 years so I can focus on my own work and study and also take a break when I need to: When you know help is coming (it was still one week away at the time of writing until we returned to Bali) it’s maybe easier to disassociate from the stress being experienced… When one knows that soon there will be air – that my carer will be there and that I can go for a walk alone in the morning and feel normalised and refreshed… still praying to God, every moment to help me to stay sane in the meantime… – It’s bearable. But otherwise I can not sustain her constant need for attention. It’s like the “normal” toddler stage extended over 18 years and counting… and add height and weight to that.
I am currently planning to facilitate a get-together/retreat for families along the lines of a “respite village” where there will be care and activities for kids hosted by staff and volunteers, as well as family activities and time for parents/carers to regenerate and then also discuss our Visions together. This will be in workshop format. I am thinking to make this retreat available in Lombok because the costs will be lower all-round and it’s a great location for retreat time/holiday plus I’m building networks for enabling PWD to be involved in local community activities and organic farming, eco-activities and skill workshops (simple way of fostering community involvement) as a way of building relationships with people who may support a future part-time of full-time living village with supported accommodation.
Please email me if you’re interested and would like to receive updates and further information at firstname.lastname@example.org or there is a contact form in the bottom navigation bar you can use to message me. I would like to connect with other families interested in co-creating this and potentially an organisation to come on board in a supporting role … creating this at a grass roots level is the most important thing and that bureaucracy doesn’t “take over” is very important to me.
As parents/carers I believe we can be empowered to find the right CARE for our PWD while freeing up ourselves to be able to participate in community life and contribute in ways that we cannot when we are in a state of perpetual exhaustion. I believe that we deserve to have enriching lives and that we can make meaningful contribution and enrich each other’s lives – just through having the freedom to find our gifts and share them in a community environment. “Special kids” are the only people in the world who allow us to truly be ourselves and when the right conditions are established, I believe we will all be able to shine much much brighter and step into a way of living in integrity and freedom that few have known – but have had glimpses of. I believe we are being drawn together to create this vision for the betterment of humanity and to enact global peace and sustainability at a local level (and step of the path of catastrophe which the world seems set on). We are the change-makers and special kids are here with an amazing purpose to see the world make this shift. As parents of special children, we have mostly already sacrificed “ourselves” and our lives are devoted to finding the best solution of care for our child/children when we are no longer alive/able to care for them. We don’t have the same “pettyness” as has brought down “normal” communities. We have a united common interest in the future lives of our kids that we are committed to.
That is how I know this will work.
Coming from the attitude of – not “what can I get” but “what can I give”… this is the essential step for human evolution. This is why we are here and our kids are here. So let’s join together in these exciting times of change. Because we CAN do it; and it WILL work and it’s in our nature and common unity, co-munity and humanity to work this way. Let’s remember who we are and come together again.
In Jesus name.