Skye’s Story

This story is about NOT limiting the outcome. It is about working outside our personal and cultural restraints, and of allowing the path of another, under some guidance, and with apparently unlimited unseen assistance, to unfold. It can be an inspiration for those who face hopelessness either personally, or within their professional life, and choose to cast it aside.

After ten years of dispensing health care and advice, the birth of my third child presented me with not the planned motherhood and opportunity to write acupuncture texts, but a plunge into the ranks of health care consumers. My precious newborn, although discharged from hospital, as a well baby, plummeted into illness, seizures and eventually coma. She was finally diagnosed as having had toxoplasmosis, contracted in utero, and as a consequence, very nearly died.

Her medical prognosis was blindness, deafness, massive cerebral palsy, massive epilepsy and profound intellectual impairment. She was expected to die soon. Her medical treatment was to be symptom management, and her expected quality of life was left to chance. I was advised to “wait and see”, “learn to live each day at a time”, and to “never expect anything of her”.

A child massively burnt is not saved from infection, given comfort drugs, and then left ‘half finished’ with scars to randomly affect functionality and life. Years of reconstructive surgery and on going support are now considered mandatory. We all expect this opportunity, as a right, for massive medical intervention – improved quality of life will be provided at all costs. This is what living in a first world country, in the twentieth/twenty first centuries allows us surely?

Any set of parents not giving their child the enhanced opportunity to be as comfortable and ‘normal’ as possible would be considered negligent, and would possibly be relieved of their parental duties – choosing to NOT avail self and child to be medically rescued would be considered unthinkable for any caring parent. . . . . BUT what does a caring parent do when the medical knowledge is not there yet? Too early for answers? No answers?

I was One of These

At present, those with wounds within the brain are left to chance, once survival is assured, and symptom management is in place. As a natural healer/alternative therapist, I saw my daughter’s condition as entirely worthy of intervention; even ‘fixable’; utilizing my personal belief that anything is possible. I knew that the body was able to heal itself, given the right circumstances.

I personally did not hold the expectation that the medical “experts” could help in any way. I was thus not bound into the medical belief system that the doctors and specialists based their prognoses (expectations of futures) upon. Within their framework, there was no hope – no answers, no solutions – she would never experience the world as we did, she would never be ‘normal’, or pass for ‘normal’ at a glance, probably not even live past a few weeks or months.

Given that degree of handicap and limitation, (their concept of reality for both me and her), why would I include them in my life/world view? (Anything is possible, that the body/ soul have an infinite capacity for self healing).

To really deal with the issues as they arise.
To live in the moment as it presents itself.
As if it stood by itself, without a past, or a future.
The infinite now.
To live as though there was always JUST this moment.
No predictions of less than.
No horror memories of how it has been.
No worries of what could be awaiting the next morning.
Just being the best possible in every NOW as it unfolds.
As though everything was absolutely perfect, and wonderful.
Hence being.

Living outside the guilt and shame of the past,
the worry anguish and
fears for the future,
of just being present.
Now is where the future is seeded.
Now is where the next second bases its existence and form,
and from where, onwards, we choose our NEXT future in every NOW moment.

We ARE in charge of our lives.

This is not to ignore the feelings and emotions we feel now, it is to work with them, now, not to carry them forward for later. To question the belief structure that allows us to judge these feelings and emotions, and energy patterns as “good” or “bad”, and react accordingly, hence limiting the outcome of our ongoing reality.

As a practitioner, I saw patients coming in with ‘hopeless’ problems. M.S., M.E, HIV, cancer – all supposed death sentences. I had always seen these as opportunities for massive change. Not by the medical specialists, as a work of ‘fixing’, but by the person themselves, who without changing who they were substantially, would ‘succumb’ to termination of the life they thought they were previously entitled to.

When a disease of magnitude is diagnosed, the possibly previously lived life full of busy relative trivia, and likely quiet desperation gets replaced by a medically directed panic – end of horizon coming up !!!!!!!. Healing from such a diagnosis can be a co operative experience by those who have the information, wisdom, belief and motivation, to aid the individual to move past where they personally ‘grew’ ‘the problem’.

The cancer inside a person may have been lovingly seeded and nourished on all levels (not necessarily conscious) of that person, to then push that person to a different point of ‘reality’. To a different set of boundaries. To where fear, terror and confusion can give rise to acceptance; rather than self bone pointing; to pleadingly groveling before a god of choice – medical or religious; promising to plea bargain out of the dilemma; or an understanding of the wakeup call, the appropriateness of a change in life course.

The perception of the experience to a large extent determining the outcome of the experience. Whether even if it is seen as a ‘good’ thing.
(Is dying before ‘old age’ catches up with us, such a ‘bad’ thing?
Are we so sure that living in this realm is better, or preferable to other possibly parallel adventures?
Skye’s presence was like a cancer.
We as a family could have done the equivalent to that which is usually done to unwanted body growths. We could have (as was encouraged decades ago) forgotten that she had ever existed. She could have been left at the hospital. Or, we could have taken her home, and, faced with the apparent futility of anything BUT physical existence, we could have played the martyr role well, awaiting her supposedly quick exit.

Alternatively, we could have attempted to “fix” the cancer, by focusing on her, and her solely, ignoring the environment from whence she sprang, lovingly nourished into being – her family. We could also choose to focus more broadly, on the entire situation – lovingly accepting all of the challenge, working simultaneously on acknowledging and yet altering her reality – by changing how she perceived the world, and all those in it. AT THE SAME TIME acknowledging our own personal parts within it, engaging in our own reactions, and life processes concurrently, thus allowing the chance of movement for her.

As a parent, I desperately wanted the perfect daughter I’d imagined that I was growing inside me to emerge and bloom from where she was currently, to become what I perceived to be “healed” and “whole”. It was/ is not in my script to revel in being an object of pity, playing the part of the victim, accepting apparent helplessness and despair.

As a practitioner, I wanted to be able to ‘fix’ my daughter, to be SEPERATE and outside the process, beyond the ‘icky’ stuff, the feelings, the hope/ despair/ elation/ depression/ exhaustion/ illness/ alternative agendas, and my personal desire for a specific outcome (healed and whole, as I perceived them to be). I found that I could not do this.

I found that the bonding to that little person was on more levels than usual. I faced a duality. Stepping outside the ‘real’ world, and into one of inner healing. Of becoming like a bridge for one person to live through, and learn to experience the world as we knew it.

My ability to achieve this was largely attributable to my inner beliefs, and the framework that I had worked through as an acupuncturist experiencing, not just intellectualizing, a separate knowledge base. Seeing the obvious more gross, material level that we in this realm choose to believe is ‘reality’, and the other component that was within that which used to be called healing – the shamanistic/wise woman aspect.

Beyond the ‘medical’ and into the more resonant/vibrational realms of reasons for and behind the physical realties.

I had years before witnessed the power of the belief systems that hold us trapped in physical misery. A young man came to see if I could assist with the phenomenal muscle spasms that had plagued him since he had broken his back (in three places) many years before. These spasms were strong enough to throw him out of bed – so he had to sleep on the floor as a precaution.

As acupuncture treatment began he soon started experiencing pins and needles in his toes. As these had not been there before, I realised (in my framework that anything is possible, given the right conditions), that it may be possible to return normal circulation, and hence normal function.

I attempted to get rid of the ‘wind’ that was so evident, as unwanted movement. I also decided that the obstructions in the Du Mai, the spinal meridian of energy, and that with some peripheral tidying up, walking was likely. One day, soon after the commencement of MY intended outcome, he in sitting in his wheelchair, thought to move his leg, extending it from hanging down to straight out in front of him. His parents and counselors stopped him from coming as he was, in their opinion, being given “false hope”.

The issue of ‘false hope’ is one that is based on a concept of limitation, where the current conceptions of likely and the known are taken as being all the parameters possible. Where hope, (a belief in the possibility of more than what you currently have accessible), is deemed to be ‘false’. It is dependent only on the ‘reality’ that is current for the players. Five decades ago the concept of giving a person another’s heart would have been far fletched – a century before that, probably a travesty against God and before that; an ideal reason for being burnt at the stake.

So too, with my daughter; with her supposedly irreparably broken brain. I realised that I was in the wrong time zone – with a set of ‘realities’ that are determined by the medical blinkers. The medical version of her prognosis (future) was based on the current and accepted medical understanding, centred upon limiting ‘reality’ to that which is explainable WITHIN the model.

That which seems too ‘far out’ of the model is deemed not just improbable based not only on THE KNOWN MEDICAL REALITY, but extended to hold true across ALL realities.

I had concurrently, within the first year of Skye’s life, the experience of working with a newborn, dying of supposedly untreatable leukemia. Her father knew Skye’s father, and my husband decided that I was also able to help his friend’s very ill baby. This child was awaiting death. Her death certificate had been prepared, was in her folder, accidentally seen by her father on one crisis medical visit – just lacking the final signature and date.

She was given no opportunity to combat the disease process, and was expected to die within a few weeks after birth. This prognosis did not take into consideration one father’s determination to save his child. It also failed to account for the possibility of healing. True healing. And to get there, this child DID very nearly die.

I originally took on the case thinking that I could possibly make her last few days more comfortable. I told her father that I wanted to see her twice daily, EVERY day, for as long as it took. I then asked around, and found a number of healers who were willing to do distant healing, supply homeopathic nutrients, and Reiki. I commenced seeing my little patient, and her dad, as asked. Gradually it became apparent that my acupuncture, moxa, and infant Chinese massage were benefiting her cause. It also became apparent that the disease process was continuing.

At one point, she almost bled to death, and yet still lived.
We continued doing what I assumed was comfort treatment.
The parents were not able to confront the obvious.

Eventually, after dramatically nearly bleeding out, and a couple of days of not eating, she seemed so terminal that her parents finally asked the appropriate baby death support team to visit. They discussed the placement of her grave, the type of service, music to be played etc. From that moment, she began to drink from some of the bottles offered. I had expected to see her about to expire, but overnight, she had been given a different script through their changes in perception. It was as though their wishes and personal trauma moved sideways, and she now had a choice. She seemed to choose life, and she had rallied. I then needed to further convince her father, to go in to bat for her.

Had she been a dog, we would have been expected to put her out of her misery a long time before. As she had now expressed her wish to continue, in the act of accepting food, it was probably our next move to get a blood transfusion done – she had nearly hemorrhaged out a few days before, and was the colour of alabaster. I felt that it was more than optimistic to expect her body to fight the ‘incurable’ disease process, with very little blood on board, and more practical to not expect her body to replenish this AS WELL with its epic fight for existence.

The hospital staff were understandably not keen to prolong what they saw as the agony of waiting. She did however eventually get the transfusion. She started to look slightly better. The immense abdominal swelling as the liver and spleen encroached on her lung capacity was then cause for alarm. Yet again the intense counseling of the father to go into fight for his child. The hospital, after much prompting, started a small dose of steroids as an anti inflammatory (also anti swelling) measure.

Gradually this apparently hopeless, and doomed-to-die patient turned a corner. She was missed by the hospital, who wondered what was going on. (They did not know about the twice daily 50 km round trips she took to see me for acupuncture, and her dad to get positivity and hope infusions). Eventually she was taken in for tests, where it was discovered that only half of her blood cells were normal.
Yet another major debriefing.

Hadn’t we started with none?

Wasn’t it being just a bit premature to be pronouncing failure, when we had not finished a process that was supposedly impossible? Were we not better to just keep going? Eventually there were bone marrow tests, with the pronouncement that she was now ‘well enough’ for the highly toxic, invasive, and previously totally dangerous (given her age, still developing brain, etc) chemotherapy to begin.

All natural therapies that had rescued her from her certain death sentence were to cease, and as an edict from the child’s mother, (who had been present for none of her healing sessions with me), if the father did not like this, he could leave home, as the medical and hence legal heavy weights were on ‘her’ side. She was started on chemotherapy – something her then-on-holiday specialist decreed that should NEVER happen, even if it had alone in a million chance – which he considered it did not – of working – as her quickly developing brain would be irreparably damaged through these noxious poisons and their fight with her cancer.

How did a group of medically untrained natural healers go in and rescue where impossible lay?
Is there room for the concept of healing for more than our bones and flesh, drugs and surgery?
I have had occasion to wonder why it is that the movement, and possible fluidity of the boundaries of ‘reality’ causes such denouncement and ridicule from those who are educated to ‘know better’. Does being ‘real’, (knowing better), mean that they have had it proved to them that the box called the modality/ science/ set of facts is immutable?

There my much wanted daughter was, stuck in a well body with a ravaged brain – its wiring in tatters. They had missed a crucial point – it was a baby brain – hence a quickly developing one. Why was no one interested in attempting to get some, if not all of the apparently dormant brain cells that we never use – and are there apparently as ‘spares’ – up and running the show in lieu of their dead and hence useless neighbours? A term ‘collateral sprouting’ was bandied about. As an infant’s brain had suffered this astonishing insult, it potentially had the tools to recover – we when little are incomplete – this is why our heads grow so much from birth. I could see why I needed help to ‘fix’ her broken brain – but I seemed to be in the wrong century – much like a compound fracture in medieval times probably killed the sufferer – whereas now, it is a routine panel beating job at the emergency department of any hospital.

Hence, I received counseling from a psychiatrist, who gave me the ‘good’ news that though I was not clinically depressed, that I could do with weekly chats to relieve myself of the inadequacies I perceived to be within my own teenage year’s relationship with both parents.

My daughter had been through a medical catastrophe. She was left as human garbage. She could not get past ‘Go’ in the game of life.

She was unlikely to survive, much less live in a world that would accept her, and here he was waffling about a world long gone (my adolescence) – when I had a window of opportunity (her baby brain developing) that everyone was ignoring.

I searched for another framework that allowed some likelihood of rehabilitation for her vastly damaged brain, hence rescuing her, and my futures

I found programmes and instigated vast changes in our lives to accommodate the extreme busyness that was now to be part of it all. Life continued. All the while, the dream, some would say, the obsession was to end up with the one I thought that I was ‘supposed’ to have had. Nothing spared. I also realised that if I found myself in a similar situation, I would be appreciative of someone intervening on my behalf. I also knew that if anything happened to either of my sons, I would also have rallied, in the event of medical inertia, to the cause. After all, that was what I was employed professionally to do for others.

Hence, sidelined for eight years, that is what I did – went where no one else seemed either interested, or willing – into the realms of very different. Along the way, she tried so hard to die. Why didn’t I ‘let’ her die? No guarantee that each was not just going to leave her with less than what she already had to work with. Death was the easy option. But, it didn’t seem to be hers. Just trauma, terror and more pain. One horrendous illness after the other. Her immune system was so compromised that she caught viruses that I did not know existed.

She screamed through sleep cycles. Refused to sleep. Living was a horror for her. I gradually realised that she was remarkably autistic. A dreadful handicap, without her accompanying massive brain injury. Hence NO bonding. No positive feedback. Why did I keep going? Because I knew that her hell was worse than mine. I knew of options, she didn’t. I had choices. She didn’t. I could walk off, and she was stuck where she was. No prospect of a life past that which I would not ever wish for myself. I wouldn’t want to be left there. Thus I saw no other path.

My then husband wondered if she actually wanted us to leave her in the state she found herself. I argued that if this was the case, she would have chosen any other mother. Not the one she had, as I was a fairly independent thinker. I was unlikely to accept a judge’s decision that I personally thought unhelpful. I had the philosophy that ‘problems’ are there to allow us to grow past where we were at their inception. Hence, grow – we, or at least, I would – and did.

As an acupuncturist, I had been aware enough to teach all my students that when a person walks in for assistance, what ‘hurts’ is rarely the core issue. The physical aches tend to give us valid cause to ask for help. Thus, so too, as acupuncturists, the constitutional kidney jing, liver yin, and spleen yang deficiencies, poor blood and energy production and circulation, and “phlegm misting the consciousness”, are all screens that we as therapists/ acupuncturists may play with, rather than seeing beyond.
Just like the medical system of logic, labeling and going to war with, rather than acknowledging, understanding, and encouraging ‘normal’ to return. All of the above is just showing HOW the system is manifesting its disorder. By seeing the symptoms, and attempting to alleviate just these, to see the underlying acupuncture energy imbalances, and try to remedy these, is to similarly miss the point.

Why is the system not healing itself, as an automatic event?
Why did it go off in this direction in the first place?

Does it have a reason, an agenda, to be uncovered, an as yet healing that requires attention? That possibly once that is acknowledged, removed, transmuted, or otherwise dealt with, the apparent front for it, can dissipate. Hence the possible reason why some things never seem to get better – we are looking at the result, and trying to rid the body of its reaction, rather than the origin of ‘the problem.’

In fact, seeing ‘the problem’ as needing fixing, rather than it being the beacon to alert us to follow back along the path we could be lead down, to find the ACTUAL imbalance is the real balance. That what we see as the problem is really the answer to something else.

So – why did the soul who chose to be here in my life, as ‘Skye’ manifest the experience? Was it to teach me to go beyond what had been my previous limits? Was it to teach me that I, as an ego driven personality was not in charge? Was it to allow me to finally break through a vast array of issues that had held me stagnant in my life? Was it to allow the changes wrought in me to totally alter how I was as a person, a mother, a teacher and a therapist? It did all of these.

Was it just her story?
It touched the lives of her older brothers.
They had a major role in her rehabilitation.

Sean – more as a co worker, part of the therapy team, a stand in adult, a mother’s helper extraordinaire – Josh as a brother – the sort who trips you up, hassles you and generally is more real, than those who see you as ‘damaged’. She was his little sister. The only baby he knew. It was often Josh who just knew what it was she was saying, or wanting. Both were called to service, and ‘grew up’ to become much wiser people than they would have otherwise been. Both who were invaluable for me – they grounded me in the routines of being a mum.

Through all of the intense life and near death dramas we got to experience, I learnt to step back. To be guided not by wanting to rescue, but by acknowledging another’s process. To work with only the physical, the obvious, would have been unlikely, as being an acupuncturist, I knew in the depths of my being, that the ‘real’ world is at best only half of the story. Just like with the ‘dying’ baby. When a change was made, somewhere, somehow, the virtual could be played out, and then it possibly no longer needed to be in real time/actual. In Skye’s case, the constant battle to Not Be. (Here). My constant battle to make her more than she was.

I learnt to allow/accept the incredible shifts that needed to happen in order for me to go on to the next step. I learnt that everything we do as therapists is band-aiding. Regardless of the apparent causes on this plane; the real reason; the learning required; the acceptance and the understanding seem to have to come through our time in the fires of our lives. The more it hurts, the more we don’t want to stay there, and the more the trauma we experience could be seen to be related to how much resistance we have in discarding that which has not been helpful to date, and our ability to take on a different set of ‘rules’ in the game of life.

What I learnt was that the play, the game we see as life, can be vastly altered backstage. In me changing who and what I was, she was granted the space to reassess. As surely as the nearly dead baby was ‘rescued’ by eventual parental acceptance of the apparently inevitability of it all. Just as the young chap who had, until I offered an alternative, thought of himself as ALWAYS AND FOREVER a paraplegic.
Skye showed me how to transcend my own handicaps (belief systems). Her labels (blindness, deafness, cerebral palsy, brain injury, profound intellectual impairment, epilepsy, autism) were matched by my own – pride, ego, independence, lack of faith in universal providence, and general ignorance in thinking that I was in charge). As I worked through mine, hers dissolved.

Was this a ‘placebo’ effect in some way? Was it that when I saw her differently, that gave her permission to give it a go? At times, it seemed so. Or was it that as she changed, I could? Ultimately who cares? If the desired result is achieved because someone believed it to be so, and it was, is this not then healing? That it is not affected in the orthodox manner is hardly a worry for the recipient. To the observer, who may feel unsafe if the world is not always following ‘the rules’.

After all, this is all ‘anecdotal’. Where are the double blind trials? Maybe all a case of misdiagnosis – not really that brain injured, spinally severed, or near death from supposedly terminal leukemia. In Skye’s case – not really cortically blind, as she is now seeing well enough to pick little bits off the floor. Not really THAT damaged, as how could she possibly now have THAT much function?

At some point into her ‘rescue’ mission, I realised that my original time span of three years was not going to be met. I was living a different life; not necessarily always pleasant, calm or peaceful.

Not ‘normal’ in three years.
The dawning of the realisation that possibly never ‘normal’.
The acceptance of her perfection, as my perfect daughter.
Not like anyone else’s, as I was not anyone else.

Skye often went on what I called her ‘integrative holidays from life”. Meaning – she is taking time out to decide whether to keep on going, or to opt out. Usually she did this in a dramatic way. Stopping eating altogether – for days, weeks. Radically ill. On drips in hospital. In hibernation mode. Very difficult to stand by as a mother, holding a desired outcome of well and normal.

At these times, I learnt to stop trying to rescue, and to ‘fix’ – to (just) hold the space and allow whatever would happen to unfold. There is a test for one’s personality/ego.

To let go of any outcome – to allow the Highest Good of All Concerned

After each of these, she was different. When I, and my wants got out of the way, she had space to reconsider options. Her irises gradually went from black, through very dark brown, to where I could see the immense number of nerve rings. The naturopathic concepts of going back through ‘disease’ seemed to be so by watching the progression in her eyes. She very gradually became less autistic – very obviously so after I started her on Chinese herbs, in adult doses.

GRADUALLY AN AWAKENING – as I ‘got with the programme’ she could change
The very slow “unmisting of her consciousness”.
A spark of someone present in her eyes. Slowly more than blankness in her face. An occasional reprieve from the chaos and the horror of the unusual that had reframed our new parameters of ‘normal’.

I learnt to watch her suffering, her misery, her frustration, her anger, her terror, her withdrawal, and her incredibly tentative glimpses of reaching out, of opening her barriers, her attempts enough to try again . . . . at her speed. It was her journey. Her path.

I had no idea what it was that she had to shift through, before she could get to where everyone else took as a right, as a part of being human. I did find that I could guide, I could support, but that I could not force the process. Where I wanted her to go, what I wanted her to be was not necessarily where she WAS to be.

I could then draw a parallel in my old life as a teacher and practitioner of acupuncture. I learnt through my life, that the easiest path is often the one that looked the hardest.

That that which I resisted the most usually ended up being
the answer to many apparent problems.

That by stopping and seeing everything which I would expend the greatest amount of energy avoiding, was often the short cut to EVERYTHING else..

So when people walk in my door wanting me to rid them of some pesky problem, to ‘fix’ something that feels uncomfortable, I often wonder if they really know just what it is that they may also move, if they allow themselves the space, like I learnt to do with Skye.

To see that more is often achieved by allowing the dis-ease, the discomfort and the pain attached to a belief system, to remain, and to let go of the belief system. To work on the ‘self’ that allows the ‘problem’ to be there, rather than be forever distracted by the results of self eating, drinking, being who self thinks self is.

What is so dreadful about having a massively brain injured daughter?

Seeing her as such, not as the whole spirit, who has come here to grow, to teach through example, and through the richness of experience that would have otherwise passed me by.

What is so terrible about being in the spot you currently wish you weren’t in?

Seeing it as awful, dreadful, and languishing in the experience, instead of looking at it from a different angle, and cleaning out all those corners that you have hidden from yourself. Even if they are not the ‘right’ ones to sort out the current situation, they won’t be there to be triggered into action another day, by another incident.

Gathering together people with like belief systems to shore up your position is not likely to do more than make you feel more vindicated in where you stand, and less able to move out of where it is that you are stuck in. ‘Friends’ all feel comfy as they do not challenge the bits of you that keep you stuck.

Having Skye in my life touched all those who experienced us. Even if for no other reason, than a guilty gratitude that it was me walking this path, and not them. Their children were (to date) ‘OK’. Little did anyone know, that it was me that felt so very grateful, that I had been given the opportunity to see beyond ‘normal’, and out into the beyond.

Time passes. Skye changed and became Kathryn. She is at point of writing, a few weeks off being twenty years old. She is herself. We in our culture seem only to focus on what makes money, what looks good, and what is comfortable to cope with. Kathryn falls outside all of these parameters. She is however, as source of joy to those who work in the area of ‘disabilities’. Her tentative and trusting forays into communication touch all. She is far more than special and her ongoing contribution will always be measured within the currency of the heart.