Bathing in a Rainbow

I float every week, well, why wouldn’t I?!  There it is in my front yard, the question might be why don’t I float more often, and as is so often the case these days it’s simply time.  Every week it’s a different experience, always incredible in some way, but this week it really was something extra magic.

I decided to try ‘playing’ with the lights since usually I go for absolute dark immediately.  I wasn’t at all sure how long it was going to last because I thought it would become irritating – anything but it turns out.  My lighting system has the range of rainbow colours you can choose from. Red, orange, yellow, green, blue, indigo, and violet, and white.  But you can also choose to run them on a cycle so that one colour slowly morphs into the next, and this is what I chose to do.

Usually when I close my eyes, or am in complete dark, the dark is anything but dark.  From talking to people I have discovered (this is not a very scientific statistic), that about half the population are like me, and half the population simply see ‘dark’.  I won’t say black because in our world of light pollution it’s pretty rare to be somewhere dark enough for it to be completely black under normal circumstances.  For me, when I close my eyes I see dark, but among the dark I see moving shapes in a colour I can’t describe, sort of pale, grey navy – sort of.  They swirl and morph and create new shapes and break apart, never really quite settling on anything.  A bit like a moonless night with a sheets of broken cloud, moving around but in a very non cloud like way, and the more you stay in that position the more it amps up and changes and gets sparkly bits to it.  That’s normally.

As my body settled into it’s floating mode, releasing tension and entering physical freedom, I put the lights on rotation and the colours began slowly changing through the spectrum, one becoming the next as they passed through the range of ‘new’ colours between each base colour.  It moved and swirled, and wonderfully after a few minutes I noticed the top and the sides of the float tank were not really there anymore, having become part of the swirling and merging.  It was like bathing in a rainbow. It was extraordinary.  It was incredibly relaxing, and very ‘other worldly’.

After about 20 minutes the lights turn off, I contemplated turning them back on but frankly I was too relaxed to move my hand to the button.  My whole body, my mind and my soul were somewhere else altogether. The swirling and moving in front of my eyes continued, as would be normal for me, but for the rest of the float it was even more extraordinary than ever, almost as though I could still ‘feel’ the light.

Definitely going to try that one again, I wonder if I can get out again before the week is up 😉

Angela x


Utopia Living – Alphabet Soup

W~ Wet, it’s been a feature of life lately, though today is really quite divine 🙂  I went for a walk recently out beyond the garden gate after a long period of extended rain, and was reminded about something that happens regularly after rain on my usual path, which leads to me looking a bit funny as I stride along and I do wonder what people are thinking when they see me.  You see after lots of rain the worms come out, hundreds of them, up through the grass verges, up out of peoples lawns, out from the gardens, all on to the concrete pavement.  I am amazed at some of them – even as a gardener I hardly ever see worms this long at any other time, they are fabulous creatures, sprawled all over the path, though some have already been squished, by careless feet, or bike and scooter wheels by the time I come along.  And after a day of warm and sunshine there are always some that haven’t made it back to the grass, left there on the concrete dehydrated and done in, as the moisture is slowly sucked out of them.


The thing is I can’t let myself stand on them and I walk eyes down, sometimes leaping from side to side, hopping, jumping and skipping along in a desperate attempt to give them the best shot at life.  It must look quite mad.  But I feel good about saving the worms, and I am sure it adds to my exercise.

H~ Helena – daughter divine, light of my life…. still floats twice a week, and the results are fascinating.   I am seeing a wonderful body unwinding which is very exciting.  It is not however a straightforward path, the journey is sometimes uncomfortable, and when we are going through the tough parts, though it’s nothing we haven’t faced in the past, it is never a happy experience. For the first time in a long while I can see the upward trend.  Nicholette mentioned the other day that she looked her right in the eye in response to something she’d said, and held the look – this is something that historically hasn’t happened, but that I have also recently noticed more and more, it is an exciting indication of quite a huge change in her physiology and structure.

I am coming along with the book of her life, with all that it entails personally.  This is why I haven’t continued writing about it here, and in fact I am enjoying the opportunity of writing about other things and relieving the weight of heavier topics.  It is however being a very healing process, as I minutely mentally examine all that we have been through together, and I have determined to be as honest as I can about pretty much everything, and so I have been digging up and sharing details I haven’t specifically spoken about before.

G~ Garden.  Oh dear…. this kind of relates to the Big Wet.  The garden looks sadly neglected, which to a greater extent it is.  My time is already limited, but with the extra rain it’s been nigh on impossible to get out there, so none of the last of the summer die off has been removed, the lawns are far too long, and the weeds are rife.  It has become a bit of a bug haven because of this, and that seems to please the chickens, though it is a little frustrating that they seem to prefer to jump into my vege boxes and dig up worms! Which you know I am fond of, and spend a great deal of time trying to encourage.

My main project out the front of the property got to a good place but has been in a holding pattern as I need someone to help me fix the front fence.  Plus we are waiting for our new apricot tree to be ready.  I have absolutely smothered the main area with a whole range of bulbs, the first of which, autumn crocuses, have begun to flower.  We should have an amazing display out there through multiple seasons.  I am hoping the whole area will be a huge bee attraction, and have planted feijoas, a Chinese lantern and loads of flowers to help encourage them.  The Trevatt variety apricot we have ordered is supposed to be a fabulous bee attraction also, and we are hoping its early flowering will encourage bees earlier than we usually get them.

The mighty Oak has finally lost the last of her leaves, and now I have the mighty clean up to tackle.  They are carpeting huge tracts of the garden, some can stay where they are as a lovely natural mulch, and others I will commandeer for the same job elsewhere in the garden, and the rest will have to be chopped and bagged so they break down into a useful compost addition or leaf mold at a later date.


Thanks for reading! I really appreciate your company and comments.

Angela x

My Happy Place


Utopia Living – Treading Lightly and a New Camera

The New Camera ~ Well I am not one for hanging around, and after getting confirmation that my previous camera was a dead duck (despite being only 4 years old they no longer make the parts), I braved the camera shop and came away several hundred dollars poorer, but a new and exciting tool/ toy to learn….. this weeks feature photo was my first attempt – trying it out under trying conditions.  I’m pretty pleased with the outcome! – A dark room with a bright light in the window behind 🙂 Happiness! And now I suspect it will take me another few months to learn all the ins and outs and capabilities it has. Here are a few more efforts:

Today ~ Is a glorious day! I am celebrating how delicious it is, especially so because for months it has been blowing a gale, or pouring with rain, or dull and dark and cool and dreary.  But today is glorious, the sun is shining, and it is warm and still.

Freedom Food ~ I’ve just been for a walk into town with my string bag to collect freedom food. More specifically walnuts from a tree that no one else seems to know or care about.  And here’s the thing, this tree is right behind my local supermarket.  This is the spot where the local shops keep their recycle bins, and where the local working smokers gather to fill their lungs with their daily doses, and day after day they tread fallen walnuts into the ground snapping the shells rendering them useless, and bins are dragged in and out with the same effect.  And day after day people go into the supermarket right in front and buy walnuts imported from America.  And it seems to me there is something wrong with this picture. Perhaps it wouldn’t be such a big deal if it wasn’t so common for fresh food to fall on the ground and rot whilst tree owners pay money at the local supermarket for produce grown elsewhere and take it home in a plastic bag.

Sometimes of course fruit and nuts grown at home aren’t as pretty – which couldn’t be less important to me – but seems to bother people.  At the very least (or perhaps first on the list) excess food should be gathered and distributed, we all know there are plenty of people who could do with it.

ITreadLightly: The name my good friend Elisa has given to her new facebook page – you should take a look, it’s cool.  There are a growing number of people posting little videos of how they tread lightly in some way.  Of course treading lightly isn’t just doing one thing – it’s doing everything that you can to ease the pressure on the planet and the people around you.  I know I already try pretty hard, but it does prompt me to think again about whether or not I am doing all that I can.

Plastic is a particular bug bear, and I avoid it as best I can, but it does sneak in.  Still, I make it my mission on every outing to return with no more plastic than I left home carrying.  I use simple old fashioned soap (works perfectly well) instead of body wash (totally unnecessary) and have had the added advantage of being able to support small local soap makers who use sustainable ingredients, and they are always gorgeous….. and aren’t wrapped in plastic 😉  I have joined the small but growing community of people who no longer shampoo or condition their hair…. and despite previous preconceived ideas my hair is not a greasy dirty mess, but is actually cleaner and healthier than it has ever been, and has more body and control than I have ever experienced. I don’t do nothing of course, but aluminium free baking soda is a boon and after floating nothing beats aloe vera gel for breaking down the residue that sticks to the hair.

I recycle as much as is humanly possible but do try to avoid bringing it onto the property in the first place. I drive only when I have to – walking as much as possible….. and well the list goes on! Oh and guys if you are squeamish about ‘female’ things skip to the next paragraph…. ladies, I’ve been using a menstrual cup for nearly 20 years (I’m on my second one) and it’s bloomin’ brilliant, huge saving for my pocket… and the planet, and quite frankly it does a better job. Awesome.

Rubbish ~ I’m one of those people who pick up rubbish when I go for walks.  Sometimes there is so much I simply can’t carry any more.  Sometimes I remember to tie a collection bag around my wrist – but often enough I find a plastic supermarket bag floating around.  Anything recyclable goes in the nearest recycle bin that someone has left out on the street or just inside their driveway.  I unfailing notice the same thing every time. ALL rubbish is junk wrapper, or booze cans/ bottles.  And it’s all junk.  Seems pretty clear that the people who are happy to treat their bodies like junk yards are happy to do the same to their environment.  And people who are happy to treat their bodies like that are not the best people to rely on for making good choices about wrapping, so it seems to me that something needs to be done higher up the scale with the people who make this stuff to start with. Just saying.

Kindness ~ The single most important thing at Utopia.

Helena ~ I am boldly stepping into the space I have promised certain people for a number of years, and finally writing the story into a book. 🙂

Thanks for being with me.

Angela x

Utopia Living

The Weather~I don’t remember another year/ season where the weather has made such an impact on me! From November last year when the wind started and didn’t stop throughout the summer growing season through to a sudden and definite decent into an early cool and very wet autumn from day one in March. Vain hopes of an Indian summer in March/ April are well and truly over. We’ve had the heating on most mornings, and once again the garden is neglected.

Talking of the poor garden – it is currently under a veritable blanket of oak leaves – none of which I have done anything about this year, so that like snow fall you forget where the edges of things begin and end… a bit like being in the float tank really!  Happily it’s not bothering me too much. Which is unusual because normally I’d be comfortably bugged by the outside mess.

Chickentopia~Ethyl chicken winged her way to chicken heaven this week.  I feel pretty blue about that. Turns out all her little idiosyncrasies were due to Marek’s disease – which she must have had from her brood mother well before she came to life in Utopia.  And so her legs finally collapsed under her and she lived her last week in a box which I moved around the garden to follow the sun. I’m sure there are many who think we are slightly wobbly in the mental stakes but mother and I decided she should see out her last 24hours in a comfy warm box in the sun-room surrounded by hay and covered in a blanket.  Our poor little clucky crew are having a weird experience of life with this crazy weather, it must feel extremely overwhelming for them!  Their home garden is right underneath the mighty oak so you can imagine what it’s looking like at the moment!


Footprints~You’ll have to imagine all this though as I am currently ‘without camera’ – something I am finding ridiculously hard to deal with! Along with the response from the techy I had to take it to – which was “oh this is pretty old now and you can’t get the parts anymore so if anything needs replacing you’re out of luck” – my camera is no more than 4 years old!!!! This is one of the things about modern life that unhappily exercises my mind.  My lovely dad was a photographer – he had some really very impressive cameras – good old manual operation film cameras that you had to learn to drive, (like manual versus automatic cars) a real skill to use but produced supreme photos and were still working just fine long after he was no longer able to operate them…. Of course now film is hard to come by and the processing even more so, as well as the cost of printing which is just plain rude.

I like to leave a small footprint on the earth, so the throw-away commercial society we have created does upset my balance…. I am unashamedly bugged to heck about having to buy new tech…. phones, laptops, cameras, washing machines, fridges ….. well before they should have to be replaced simply because the companies who make them have chosen to design a new look with slightly different parts – I want to be a conscious consumer, I try to be a conscious consumer…. So I get more than a little bugged by having to ditch otherwise perfectly good and buy new…. Not to mention (except that I am about to) the fact that I have a relationship with my camera …. Ok that sounds a bit weird, but bear with me! – It feels like an extension of my hands now, I worked with her until we developed a flow and ease and now I can flick between functions with ease – and take pictures I am happy with.

Friends~I am blessed with some truly incredible friends – beautiful, strong, wonderful people.  I was out at dinner recently (yes actually beyond the garden gate!) – with six gorgeous, diverse wonderful women who inspire, warm, and fulfill me. Every topic of conversation was on the table, it was diverse and loud and enormous fun, and at an old favourite restaurant which makes for extra relaxation and much less control of raucous laughter because you kind of forget where you are at times like that! Yes we were that table of women at a restaurant who disturb the peace.

But here’s how I lucky I really am – right at the end of the night the stone fell out of my ring – I didn’t see it go but I was suddenly aware that the grip was empty…. And in that moment I mentioned it we all dropped to the floor and crawled around looking for it, seven women crawling around under tables around chairs, even in the bathroom, and into the kitchen to search through the serviettes that had been removed from the table – phone flashlights out… all searching for a green stone on a green tone carpet…… the only other table still occupied (we are always the last to leave) – were two young male tourists (I’m guessing English second language European of some description) and I reckon we gave them a tale to dine out on for a good long while – though I am sure they must have thought they had stepped into the twilight zone! My two most tenacious friends (Lisa and Mel) put in a dedicated amount of work and whilst bemused staff were trying to get rid of us, chairs on tables shutters down and the closed sign on the door they refused to leave until Eagle Eyes Mel spied it smack bang in the middle of the search area. 🙂

Floating Helena~Back to Utopia, inside the oak leaf carpeted garden zone and pod within a pod. Helena. My dream. My Angel. The meaning of my life and the reason I breathe. Now, at 23 years old, is for the first time in her life growing out of clothes before she wears them out. Helena adores her floats. Freed for a short time from the prison of gravity and rigidity, she is leaving tiny little pieces of that rigidity behind bit by bit with each experience. And as she does she opens up to a whole new world of possibilities….


Helena – Stepping into my big girl shoes

This featured pic of Helena is one of my all time favourites.  It was taken at 8months – in one of the beautiful moments when she wasn’t either screaming, seizuring, or sleeping and I could finally see the edges of a promise of better things, and a joyous realisation that it really wasn’t going to be like this forever.


Around this time we had a visit from someone from the epilepsy foundation. And though there was nothing they could help us with directly, that visit sparked a chain of events that changed our lives forever.  She suggested we visit an osteopath – well, not just any osteopath but a particular one, with a very interesting son. And so I phoned and arranged and we went. And he told me some amazing things about his son’s development and loaned me a book, and by the time I was half way through that book I knew what I had to do.  It’s a funny thing that kind of knowing. All the way through this journey with Helena I have known what to do, how long to carry on, and when to stop, and when to seek help when I am stuck.

This is when I really learned about hope. You can’t travel this path and stay in one piece without it. Hope is an anchor, a rock, a place where dreams are reality and anything is possible. Hope is survival, and comfort and strength. For me it was the source of positivity, purpose, and direction.  Hope is good, always. I certainly knew about it when it left me….. but that doesn’t happen until much later in the story…..

Hope is also a thing that many people will try to take from you. Mostly well meaning people of course, just misguided.  I remember receiving a three page letter from another parent telling me I should just leave Helena to enjoy her childhood…..  I still have no insights into how his mind worked, he was someone who had briefly visited (I don’t remember why) and had formed an opinion of our lives that he felt he needed to share….. what kind of childhood she could have had?  Since then I have learned that the world is overflowing with people who believe they have all the answers to caring for a child who is ‘other’, despite no personal experience, extraordinary.

The majority of people around us though have always been positive and supportive, and through all this we have met (and continue to meet) the very best kind of people – it’s an honour. Perhaps in part because I was so chronically tired all the time I didn’t have energy to be swayed. I knew what was right for us and so that is what I did.

So ~ blessed, wonderful, powerful hope was my driving force, and before I had read half that book (What To Do About Your Brain Injured Child by Glenn Doman) I was making phone calls and decisions about where to, and how to.

Back then Glenn Doman still ran the Institutes For The Achievement of Human Potential in Philadelphia, but also at that point there was a satellite clinic in Melbourne called The Australian College For The Development of Human Potential (ACDHP), and so that is where we went…. It ought to have been an easy journey, just a hop across the ditch – a 4 hour flight to our Australian neighbours.  But nothing was, nor ever has been, easy with Helena. Even driving to the local shops sent her into paroxysms.  By the time we arrived anywhere she was a screaming, raging, mass of fist beating back-arching demon child. So a trip to Melbourne which included multiple long car journeys a 4 hour flight and a week long stay in unfamiliar territory wasn’t plain sailing.

I vividly remember the teary rigid mess she was when we arrived at the airport… a car trip which included multiple bodily functions of the ikkyest variety…. And a subsequent plane trip which resulted in a dehydrated, rigid, seizuring baby. Such Fun.

Arrival in Melbourne was then followed by an hour and a half taxi ride to the suburb Healesville where the Institute was…. It was almost comical… our poor taxi driver. I don’t think anyone could have been prepared for what he went through. Helena of course started screaming the moment we got in the taxi – and she screamed non-stop for the entire journey. Our driver, a recent Egyptian immigrant, had the thickest glasses I have ever seen – which he used for both looking at the road and reading the map close up… and they were definitely NOT bi-focal. And he looked at the map a good deal because he really didn’t know where he was going…. so he stopped and started, and Helena screamed and he got more and more agitated and kept saying “she doesn’t like my car” – “she doesn’t like my driving”, which was kind of sweet… or I would have thought so if I had been more confident he knew what he was doing…. Or been just a little unsure that he wasn’t going to suddenly decide it was all too hard and drop us half way.  In the end it was just as well we had a recovery day after arriving before our first day of our week long clinic.

My wonderful mum, always there with us to help and support….and my amazing dad holding the fort at home.  Here we learned the full extent of Helena’s injury.  Was I just numb? Was it prolonged shock? Was I already solidly under the influence of Grand Hope? Was I just too tired to take it in? Sometimes when it comes to it, when you hear ‘big things’ they go into a place in your mind and heart and soul, and are instantly wrapped in cotton, boxed up and locked away deep in storage….. it softens the blow. Some things have stayed like that, gently covered year after year by layer upon layer until they are buried so deep in my soul it would need to split in half to release them…. I can feel some of the edges of those layers fluttering as I go through this process, and I am fighting the urge to back away and leave well alone.

At ACDHP we learned that Helena had a profound, diffuse, bilateral mid-brain injury with some pons and some cortex involvement. We learned that she was functionally blind, deaf, insensate in some areas of her body and hypersensitive in other areas. We learned that she was operating at 21% of where she should be, and we learned that that was very bad indeed for someone only 15months old.

So where to from here? – This was when I truly put on my big girl shoes and after that mind numbing first week I flew home and took responsibility….. Which I will begin to tell in next weeks post.

Again, so many thanks for ongoing gorgeous comments from everyone – and for sharing this journey with us.

Angela xxx

Me and My Girl…



The Week That Was – 8,9,10,11,12….

 Best Laid Plans ~ Of course at the beginning of the year I was going to write The Week That Was every week, and at the end of the year have 52 neat little stories…. And then Helena’s story loomed large and I knew I needed to write that as well – and well, something has to give sometimes! So here is an update on Utopia living 🙂 ….. 12 weeks into the year already, and 4 weeks behind!

Main Project Update ~ So not finished yet – but well on the way!:

Featuring feijoas, a small cypress, LOTS of bulbs, some random hedging plants, 4 cubic metres of soil, and a Chinese lantern… as a start.  And now I have to fix the fence, and do a little more planting, especially another fruit tree once the Autumn is in full swing 🙂

Harvest ~ The harvest this season has been a bit of a sad affair. Even though we have at least 4 varieties of strawberry with 4 different ripening stages we’ve not had more than a smattering to top our breakfasts.  The latest variety was kindest to us, but a funny thing has happened there this year.  If I didn’t know where snails came from I could be forgiven for believing that snails were created inside strawberries…. like pearls in shellfish. I don’t know whether it was one incredibly industrious mother snail (I only found one) – or a series of them visiting the strawberry patch on a roster – but 90% of those delicious little packets of red red juicy divine had been semi hollowed out by the teeniest tiniest little snail~lets I have ever seen. However frustrating for us, I couldn’t help but think how utterly marvellous to be born inside a strawberry!

The neighbours ‘triffod’ grapevine, if you remember from one of my previous posts, was left to trail all over one corner of the garden, because I found these for the first time:

And just the other day the reward has begun to be reaped….


As predicted, now that the raspberries, strawberries, and blueberries have all done their dash it’s time for the cranberries to come on line and we’ve had an early handful already.  The New Zealand cranberry is quite divine.  Ours don’t grow as big as they promised – but that’s because I don’t thin them out, but prefer to go for quantity.  They have a delicious aromatic taste, so much flavour packed into such a tiny little bundle. YUM!

Our very young apple and pear trees are mostly done – though one late ripening apple still has half a dozen offerings growing nicely. The feijoa trees are smothered with tiny fruits – and I am hoping like heck that they have not suffered in the same way as much of the garden from the excessive wind we’ve experienced.

It started blowing in November and I kid you not when I say that it did not stop until end of February, and much of the time it was gale force, and very dry. No matter how much watering I attempted I couldn’t get enough on to save many of the plants.

March is usually one of the nicest months, regardless of how the rest of the season has been…. but this year from day one it started raining and got cold.  Autumn struck right on cue!

Old Man Oak ~ We are blessed with the most beautiful oak tree on the property frontage. Planted over 80 years ago, it’s the first tree in the district to lose it’s leaves, and the first to gain them again in the Spring.  Thousands of leaves fall like snow, and create a red brown carpet over the entire garden… and pavement…and gutter…. so whilst the rest of trees in the street look like late summer and the cicadas are happily chirruping, our old oak is a bit of a sad affair.  I have given up trying to remove the leaves from the garden, and I silently apologise to the neighbours who are likewise swamped by them. I do love the tree though – and in Spring when the rest of the district is still looking twiggy and dead we are the first to welcome that divine pale green, fresh spring glow 🙂

Caroline ~ So much love for Caroline’s work.  Creating the gorgeous designs inside and out of our Utopia cabin, we welcomed her back to bring new life to a sad corner on the house:


Feathered Bundles Of Joy ~ Y’all know how much I love our chickens! Happily, Poppy is  finally over the idea of nesting…. broody no more, though she still isn’t laying, she is joyously flying out of the coop of a morning with the others.

There was going to be an amusing story about Ethyl, but it’s looking like a sad story instead…. Ethyl is our special girl. She’s always been a bit different – not a problem in itself of course, as ‘different’ tends to thrive here at Utopia.

Ethyl has recently been walking up and down, and up and down along the shelf in the coop trying to work out how to get down in the mornings in a fairly amusing fashion, clip clopping along, almost diving off and then turning around again and walking back to the other side before trying again.  I found this highly amusing, unless I was in a hurry in which case I would lift her down and onto the ground with the others where she would eat a hearty breakfast, and then she started losing….leaves I was going to say, but it’s feathers I mean 😉 – feathers, and looking a little worse for wear…. not too ragged though and still fussing about and pecking around the garden in happy fashion, until a couple of mornings ago when I discovered her on the floor in the corner of the coop unable to walk with her legs off to the side……

Well, I am used to disability, Helena of course, but for some reason I always end up with some sort of disabled animal, my previous cat had a brain injury and used to walk with his head on the side and jump sideways instead of straight up.

There have been times in my life where it seems I have been living in a non-species specific cottage hospital.  In any case I am not one to say ‘well that’s it for her then’ and do the thing many people would do.  Currently she is happy, perky, and doesn’t appear to be in any pain, so is sitting in a straw filled box with some water and food pecking distance away and we move her to be with the others, depending on the weather….. you wouldn’t read about it!…. oh hang on, you are…..

Helena ~ Thank you to everyone who has been reading my Helena blog, and to everyone who has messaged me with encouragement. You all give me the strength to carry on, it is incredibly moving how much so many of you want to hear this story, so episode 3 coming tomorrow. Thank you.

Angela xx









Helena – Onwards and Onwards…

Firstly apologies to the email followers who received multiple repeats of all my previous posts this week! A glitch in the system – should be good from now on 🙂

What an overwhelming response to my first Helena blog. I appreciate you all enormously.

I did think that this post might be a little easier – but perhaps that’s expecting too much just yet. After all, even now – 23 years later, I’m still  unable to look through her first photo album for long without feeling teary.

Despite the beginning – despite the seemingly obvious severity of the situation I still had no idea how dire things were. It was a slow, slow dawning just how stuffed up things had become. This was temporary – things would get better, it’s just a rough start, just a delay before proper life starts.  Even the labels you attract in those early days help to ‘soften the blow’ Developmental Delay …. such a gentle label – it means that things are going to get better right? This is a rough start, but it won’t last – ‘delay’ means things will happen, just slower. It’s a terrible label.

And then life goes on one day at a time and instead of getting better by degrees they get worse.

There’s a strange thing that happens at the beginning. The room empties, people don’t visit, they leave you to get on with it perhaps thinking along the lines of ‘she’ll come out when she’s ready’ ‘I don’t want to get in the way’… I don’t know. So you are left, very alone to put these odd pieces together into some kind of pattern and make some sort of life.  Never have I needed an instructional manual more than at that point.

There was of course nothing anyone could say.  Perhaps I could have been told that all would be well. That somehow it would be ok – even if it wasn’t the way it was supposed to be.  But when it comes down to it you can’t know that it’s going to be ok – because often it is not.  Even now I could no more tell a new mum faced with this situation that things will come right, than anyone could have told me back then.

Days followed days and became weeks which followed weeks which became months which followed months and eventually the first birthday loomed. I spent most of that first year in a state of shock, falling from day to day living on my nerves. The advancement of the first birthday drew an unexpected line in the sand as I stepped out of shock and into the grief cycle, where I still am to one degree or another….although ‘cycle’ is a terrible term for the process. ‘Cycle’ gives you a satisfying feeling that you will step neatly from one space to the next and come out the other end having been through the ringer but then you’re better. This is a load of rot of course. Grief is more like being in a tumble dryer, randomly thrown from place to place with no idea where you are going to fall let alone any idea when it will stop so you can open the door and step out into the world seemingly normal for a while…. it think makes you an exhausting person to live with. I certainly found myself exhausting to live with.

Helena, as I was later to learn, was functionally blind, deaf, insensate in some areas and hyper-sensitive in other areas of her body. She had no spacial awareness which meant that internally her experience of the world was like that feeling you get when you’ve drunk way too much and the room is spinning, which was why she had woken and screamed whenever I had moved her from an upright position to a prone position… even asleep it was so impacting she couldn’t be moved. It’s no wonder she screamed.  Then at 5months old when she started having seizures she was assaulted with a whole new range of neurological horrors. Mostly in those days the seizures brought new demons – the look of fear on her face was soul destroying.

The upside of grief is that certain stages of it can give you drive, and focus. Anger can sometimes be a very useful state…. otherwise you are at a loss in a sea of desperation and despair…. apparently I have drive and focus in abundance – and so out the other side of the first year I found the first steps to the next piece of this crazy puzzle. I can’t say for a moment that the path we chose made life easier – because it didn’t. I can’t say that I got more sleep, or stopped being sad and tired and scared and and angry and hurt…. because that would be a different world.

I did have to step into my big girl shoes, and take on an enormous amount of responsibility.  Even though it was a course of action that didn’t ultimately lead to where I expected and hoped to go – it changed our lives forever…… And it had the happy little side-effect of making Helena so tired she fell asleep… a lot…. which was lovely and quiet 🙂

No, it wasn’t an easy path – but it was a path and it was the best one I could find, and I have no regrets.

Thank you all again for your beautiful responses to last weeks post. I appreciate you for being with me on this journey.

Angela XOXOX