One Mother’s Journey
by Heather Bruce – written 2001
Reflections on Skye’s Life
Kathryn Skye was born 15 years ago, my third child. Whilst pregnant, I wondered at the lack of connection I felt towards the growing baby. I knew I my body was pregnant, yet it felt like nobody was at home/ there was an empty shell/ no sense of connection. At birth, she didn’t look at us, and gradually withdrew as the days went on, culminating in her becoming comatose, fitting and nearly dying at two weeks of age.
A month long horror stretch in hospital was spent awaiting the outcome of the disease process, and then the results of brain scans. The medical staff initially said she’d either die, or be massively brain injured. So they rallied with all the trappings of medical inventiveness and through heroic measures she lived to be pronounced massively brain injured as though death were the worst outcome.
How Did that Feel?
I’d finally got my much-awaited daughter, after a difficult pregnancy and birth in the midst of a floundering marriage. Her first two weeks were very traumatic, as I knew, both as a practised mother and trained therapist, that something untoward was happening. The eventual hospitalisation was a relief from the previous lonely, horrifying period of knowing, waiting, yet not getting medical recognition, or assistance. On receiving her prognosis, I assumed that the doctors were wrong, and that one day my perfect daughter would wake up, smile and get on with her life.
Throughout my professional life, I’d had patients who’d visited all the possibilities within the entire medical framework, and who had finally tried and found relief within an alternative model. I knew that the doctors were correct within their framework but that other ones existed. “Nothing can be done” was translated in my brain into “nothing medical (current mainstream orthodox) can be imagined/achieved. As a teacher and practitioner of natural interventions, I had ten years experience of working with medically ‘hopeless’ cases.
I assumed that this was yet another one that would blossom under a change of perspective. Once she was discharged from hospital, I commenced my own therapy program. A cranial chiropractor worked to return my daughter’s head to a more normal shape, as the disease process had resulted in immense amounts of pressure being exerted at different points on her skull, leading to an unusual head shape.
Whilst this did not seem to bother the procession of medical staff, I reasoned that structure would govern function, and her basic template was well distorted. If nothing else, she would be experiencing massive pressure/aching, and this, surely was an obvious place to start corrections back towards ‘normal’.
This incidentally also corrected the projectile vomiting and assisted in the gradual awakening of her senses.
Her head growth tailed off alarmingly, her fontanels fusing shut by six months, rather than six years of age. Her brain injury had suspended normal brain development, which in turn usually stimulates the cranial expansion, we expect of babies. I would guess later that the medical rationale behind not warning me of this was that as she was not expected to live, and that I needed no extra worries before they possibly materialised.
This may be fine, in a model that can at best monitor such changes.
Very disastrous, if /as I had other tools that may have greatly altered this outcome.
Throughout the entire process of being Skye’s mother, I did notice a huge cone of silence that pervaded all range of therapeutic interventions – as though all assumed that extra possible information would ‘blow’ the maternal fuses. As though they only saw me as a hapless/helpless victim to this process, rather than a very active co-creator.
Her prognosis of blindness,
deafness,
massive epilepsy,
massive cerebral palsy &
profound intellectual impairment
appeared to unfold as the weeks progressed.
She responded to nothing, gradually becoming more slug-like, not participating in life, avoiding sleep and succumbing to many varied and obscure diseases. I ran my usual programme, assuming that every problem had a solution and that with creative thinking and appropriate attention she would heal and life would get back to normal.
What if it had been a Broken Leg, not Brain?
An un-set broken leg, as was the case prior to recent medical knowledge, would have resulted as its best outcome, a bit of a limp. Some other more likely/possible outcomes would have been death from infection, or at least, massive pain and disfigurement. With no ongoing treatment once the brain-destroying virus was supposedly inactivated, it occurred to me that Skye’s broken brain was also being left to chance/God, just as the medieval broken leg would have been.
Had she sustained massive burns or facial disfigurement, no effort in this ‘now’ would have been spared. But, it was her central computer, the brain, that had suffered a massive insult – and there she was with an appalling prognosis and I was supposed to just take her home and get on with my life.
Switching Gears
I was supposed “to live each day as it came”, and to “not expect anything of her”. Looking back, nearly fifteen years later, I can see that these words could have been listened to, and responded to very differently.
I could have heard “Live each moment as though it were the only one to ever be’, and to be in that moment in with a sense of rapture, wide eyed innocence at the pleasure of sharing that moment with the soul of another”. I could have also heard “Accept no limitations, for her, and with her/of life”.
My automatic Fix-it” light seems to have gone off, and no effort was too much. I chose to put my heart and soul into her rehabilitation. To those outside my framework, I may have appeared like a woman possessed. I knew that each day she didn’t progress she was falling further behind. Thank goodness for this man (Glenn Doman). Life began with an introductory version of the Doman style neurological redevelopment programme, embellished with chiropractic, naturopathic, Reiki and other natural therapeutic interventions. Skye began improving immediately, on the system of patterning and sensory enrichment. The concepts of frequency, duration and intensity ruled my life.
Volunteer’s perspective (a must read)
Concurrently I attended all standard services available to her and often visited paediatric specialists. All service providers used the medical model – her brain was ‘not fixable’ and that the various deviations, like the strabismus, (eye squint) might be separately managed.
The basic premise of the Doman programme was that in an undifferentiated baby brain, the damaged cells may well be inoperable, but their neighbours may be switched on, and with constant attention, may well spark off an alternative, parallel developmental path. For me, her eyes had a normal inner programme, as had the muscles surrounding them, prior to the brain injury, so it was logical to adjust the brain injury, and the resultant symptoms of this would settle.
What did need attention was the central computer that was giving out crazy signals.
As the medical model at this point in time seems to accept no way of adjusting the software glitches, (wiring and energy charges), the hardware (physical framework) is focused upon, and adulterated. Personally not having the benefit of a rigid theoretical limited framework, I set about exercising what I thought to be common sense – look to what was causing the deviation from “normal” development, and adjust that back.
I regarded the medical model as being very limiting, and by Skye’s second year, only listened to the Melbourne based Doman therapists and to the German cell therapy professor, both who operated within paradigms that allowed the unfolding of normal, which was what I was aiming for. Although, no doubt, to the medically orientated onlookers, I was ‘clutching at straws’, and ‘chasing “false hope” ’.
To me, Skye had to be pointed in the right direction, rather than left to meander through the fog of damaged wiring, on every level.
As with patients and students, I outlined a multi-disciplinary approach, and undertook to undo any obstacle that seemed to be “a problem”.
Her progress was my life, as any parent feels of a badly burnt or leukaemic child. I lived and breathed her reality.
II had assumed that by age three years, I’d have her ‘normal’ and worked towards that as my goal. It was far enough away to be possible yet a reachable distance from the present. Initially, her gross motor capabilities and sensory awakening led me to assume I was on target.
What About Her Agenda?
From Skye’s babyhood, I had wondered if she were also autistic. By her second year she was obviously totally in her own world. I’d grown used to the constant screaming, the terror, the fighting off sleep and the necessity to stand and rock and under no circumstances be allowed to sit and rest, day and night. She spent any ‘spare’ time jiggling up and down on her feet or masturbating on the floor, staring blandly into space. We did not exist, she inhabited a terror space: she would not sleep, eat or “poo”. A win was getting ONE happening
The autistic horrors we could not imagine became her major handicap. She could now see, hear, walk and move normally, thanks to the neurological development programme, my single-mindedness and application, a rigid diet and vitamin and herbal supplementation programs. But, she was not in our world. Her parallel existence was all pervasive, and she could not escape from it. When the ‘autistic’ behaviours/personal coping mechanisms got too extreme, she tried to get us to strangle her. She was doing it tough.
All volunteer activities were halted, as how to explain this to the relevant child care authorities? Various attempts were made to deal with her increasingly ‘psychotic’ behaviour. A metaphysical counselor, energy workers and integrative kineiologists were all kept busy.
Our reasonable third dimensional ‘reality’ did not encompass hers. I sought the assistance of those who could step beyond this ‘now’ and be in another ‘here’ with her. I had learnt to recognise the energy shifts, the astral distortions that only she experienced as being far more ‘real’ than what we do. She often looked as though she were standing at the gates of hell, and her abject terror was no doubt totally appropriate in her world.. However, it was not so for the onlookers. We only ever physically inhabited her space.
Who was to say that she was ‘wrong’?
This is all that obviously existed for her. We could all regard ourselves as being exceptionally fortunate that we do/did not share what she lived through as normal.What would I wish someone to assist me, if I were similarly stuck? Would it be appropriate to walk away as it were too hard? Be expected to be placated by “It’s nothing really?” Lovingly supporting her was patently not sufficient.
Time passed.
In desperation I re-instigated the brain re-patterning, reasoning that as she was already screaming most of the time, we might as well at least, by performing a therapeutic act, turn a ‘negative’ into a ‘positive’. If nothing else, there’d be another two adults in the house in shifts, to hold her and try to distract her, and relate with her brothers whilst I got housework and cooking done between therapy sessions. The screaming stopped. The 15 five minute patterns daily had the expected result of calming her and also bringing her back into a semblance of our reality.
I then gave us both a holiday, going home to Christchurch, thinking it would be my goodbye present to her, as I realised that an essential part of me had been broken, and could no longer keep this all together.
The plan to foster her out/give her away on my Brisbane return never eventuated. With her usual sense of timing, once I had confronted and made peace with that which I had resisted most, and done everything to avoid, she changed. It could be argued that she came out of autism enough for my maternal bonding to take over. She finally understood enough to stop fighting life. I still couldn’t bath her, cut her fingernails, or brush her hair without her massive panic reactions, but at least she was showed a touch of patience at my ministrations. She understood the need to use adult’s hands to do things for her and that somehow the noises coming from our mouths were important.
What to do next? My husband had gone to Perth, I had no family support, there were three children totally dependent on me, one of whom screamed much of most nights. She required me to hold her, even when attending to my own toileting needs, to walk rocking her all night; she seemed ‘possessed’ quite often and was incapable of basic understanding. In addition, sometimes she went into shutdown mode, stopping all ‘poohing’ , eating and actively trying to die.
During one such episode, whilst hospitalised, she caught systemic golden staph and appeared to progress from a strep throat to rheumatic heart disease, with all the resultant organ damage. After a week’s hospitalisation, once she could retain water again, I had her discharged knowing we both had a better chance outside the medical framework. Return to ‘health’ took nine months – a resource intensive learning experience for me.
- She would not eat.
- She was totally withdrawn, and looked as though she would die.
- Her skin sloughed off in layers,
- her hair fell out,
- she ripped at herself, screamed psychotically,
- required nightly 50-60 km drives to try to calm her.
There was no communication, just a hit and miss affair of attempting to moderate her hell. Here I realised that she/something else was in control on another level.
Gradually the realisation dawned that she was not going to ever become ‘normal’. She had her own schedule, and lived in a reality that was totally terrifying a lot of the time.
Even if I could just get the three basic physical processes (eat, sleep, poo) working concurrently she would at least be healthy and happy enough, and that would be infinitely better than where she was presently.
The goal –posts had moved!
The nightmare continued. She had patches of normal sleep and ones of extreme psychosis and spent most waking hours of continual screaming nightly over the summer months. The lunar changes created major sleep disturbances. Sleep was something that had been fought against from birth, and it was our personal nightly reality to enter a twilight world of non sleep, where she screamed if I did not walk and rock her, hour after night after week after month after year.
Looking back over the process of the first seven and a half years of her life, I could see that prior to the autistic self emerging, I was hopefully confid ent of a ‘full’ recovery.Her frank psychotic bouts and her many apparently self-induced near-death experiences enforced upon me a depth of compassion, understanding, humility and sense of self responsibility that only lurked as potentials before her appearance.
As her mother, I could see that on one level, Skye lived a charmed life. She lived totally in this “now” moment. This meant also that she was stuck within it, it being almost impossible to distract her, if she was upset, her reality was impenetrable. She gradually learnt to mould those around her so within her perception, she could live more safely/less panicked. She manipulated to get what she appeared to want, as, for us, the consequences of crossing her will were too awful to live with.
She seemed content in her coping mechanisms; she enjoyed school, the people assembled about her to assist us, and thus, most of her life. Perhaps it was better that her mental/emotional development was restricted. She seemed to sometimes live in a much happier place than we do. She appeared to live for the moment and, on a ‘good’ day, gave great joy to others. She was a gorgeous little kid, often full of life, allowing us to live for the moment with her. ~
Time shifted. There came another point when I knew that the call to get on with my independent life was deafening me. The cry from the depths of myself to find a solution to the merging of her reality to mine, to create a separation so I could go on with the life I knew I had come to live, resounded throughout me. I asked for help, on a level I had not accessed before.
Being the magnificent manifester that I am, within a week, was given a very creative solution.
Yet another being was conceived.
Whatever to do?
This reluctant mother was to do it all over again, now with no Dad at all. The choice to not abort was made. Help had been asked for. Who was I to reject it, even if it did not look overly ‘helpful’ in this moment? had now to face the future. I could no longer live in the ever present “now” with her. Eventually the decision was made to completely uproot all, leave an almost finished uni degree, all career paths crashing shut behind me, venturing forth into another land, with another maternal chapter awaiting.
Deciding to not abort was more an issue of self preservation. By now, Skye was spending all month either recovering from, or building up to a massive epileptic fit, culminating in her eventual loss of consciousness, and probable further brain destruction each time. The horror of watching the previously personable imp dissolve back into the screaming, withdrawn distraction we had both emerged from, led to many discussions with self over the viability of assisting her death during one of these sessions.
As it was this “I” that had enforced her being here, was it also up to this “I” to assist her demise? I was allowed, and encouraged to end it all for my much loved dog. Emotionally, I did not think that I could cope with the deterioration I saw for my precious child, in addition to facing the deliberate death of that one I had now growing within me. Although its presence was not wanted, it might hold the very key I had asked for.
His eventual arrival allowed me to let her go to those who now live her reality with her. His presence created the impetus for his father and I to allow the relating we had had as a screen for his need to be with her, to end. To polarise his and my lives, the shared son eventually going to live his father’s reality, to have nothing, in this present, to do with his mother. His mother ending up childless.. Seen from an onlooker’ eyes, this is no doubt a different form of mothering.
Time passed
The question could be asked:
- Why do “bad” things happen to “good” people?
- Was any of this “Bad”?
- What would have been a ‘Good’ ending – not that it is in any way ‘over’ yet, for any of us?
Skye’s story inspired many others to search further within themselves, and on into the outer worlds for answers for their own questions.
Her living has enriched many others’ lives. Her existence in the lives of her two older brothers has created two men whose concepts of living are well to the left of those who live the myriad versions of ‘normal’. Her mother is a far more compassionate, less judgmental being than the one who birthed Skye. Her step father has lived far deeper, and explored more of himself than he otherwise could have, with his precious more ‘normal’ son.
NOW
People ask me how is she?
On the level they ask for resolution,
I can not give it.
An unfinished story, as we all are.
A work in progress.
In this now, as mother and daughter, we are physically separate.
But, can we ever be? Are any of us really ever alone? Her essence is as real to me writing this, as are the memories held within, and between, when I speak with her brothers, and in the photo albums. We may both not be living out the standard script, yet we never ever did, and maybe never ever intended to. This is a story of the continuum we all travel. I was more privileged than most, as I got to explore under the story line. I got to see exposed and to undo much of my personalised cage of beliefs. I also got to experience the true connection between beings, once fear is released.
