2020 writings

For the one who prided herself on getting where she intended – a letting go of the outcome. For the one who joked that she could cope under wet cement – a giving up. Even Heather couldn’t fix it. Heather always demanded more from life than she was given. Giving up, giving in. Not an option. If there was a problem, then by definition there was a solution. No such thing as ‘can’t’. Certainly not accepting: “Go home and wait for your newborn baby to die.” I didn’t – and she didn’t.Blind, deaf, severe cerebral palsy, epilepsy, profound intellectual impairment. “Expect nothing.” “Learn to love her.” “Take each day at a time.” All code for ‘she can’t live’, ‘she won’t live’.

And so began the battle to keep her alive, to pare back the handicaps, to give her what I regarded as her birthright – her humanity. It took eight years of our lives. A battle was waged. Not on the obvious front, although that was also a battle, often daily, a war of wills – hers and mine, mine and her father’s, living and of dying.

There were other children in this story, her brothers. There was a mother’s interrupted life in this story, the mother rendered childless in her devotion.


Warning – evocative.
The open wound
The daughter who is not
The one who is instead also needs her mum.
Even more than.
Yet . . .
How dare I not share this mother’s journey?
You may need to know . .
You may know another who does..
I did.
We persevere.
Life moves forwards.
Light – sun it up
Turn on YOUR heart light . .

Letting Go . .
Written 19 years ago . . . self to that self.. .
For the one who prided herself on always getting where she had intended, on being able to pull anything out of anywhere – a letting go of the outcome. For the one who joked that she could cope under wet cement – a giving up. Handing over to the ones who guided both of us from beyond this now. Imagine . . .. Even Heather could not *fix* it. She was one who always demanded more from life than was given. She never thought of giving up/in. If a situation presented itself, then by definition, there was a solution – just hidden in this present way of looking at it. Never listening to “No”. Not accepting: “Go home and wait for your newborn to die”.
I as that Heather didn’t – and she didn’t. The battle to keep her alive, to pare back the handicaps, to give her what I regarded as her birth right – her humanity – took eight years. During that time, a battle was waged. Not on the obvious front, although that was also a battle, often daily, of wills – hers and mine, mine and her father’s, of living and of dying . . . .
Finally the realisation that I was not living out the script that all others, as I had also done, assume to be living within. The rules that may have been partially working, no longer applied. To exit this chapter of my life, I had to work out the new set. How to do this, as a suburban mum, in a standard difficult domestic relationship, well entrenched in the mechanisms of daily living and raising children?
Once these were discovered, the game got simpler. Not easier. Not more comfortable/ palatable or as one would script for self, but more workable. Not as others were living. Outside the box of ‘normal’. My own personal matrix.
A major war within me. The letting go of beliefs, of limitations, of desire, of wantings and of knowings: to where I could, just be her mother. Not her advocate, her healer, her co-ordinator of volunteers, therapies and supplements, her brain injury therapist, her support network/major carer, or a consciousness/ fund raiser, but just as her mum. When this finally happened, at the point where the inner mother recognised that she was past it, where she had to quit, where there was no possibility of playing the game as it had been, (and she would give two weeks as a present to be in the present with Skye) – magic movement.
Before this (nearly four years on), maybe being her Mum needed all those hats. Being the mother of a vastly brain injured autistic baby hell-bent on dying from every obscure virus, is not fun. Like Lindy Chamberlain, getting on with the ‘now’ that presented itself. Falling in a heap/ processing inner grief was not going to get Skye better. Was not going to keep her brothers’ lives together. Was not going to co-ordinate the programme, volunteers, or find further answers. Was not going to keep me well and sane enough to keep breast feeding and orchestrating the whole show.
Another major battle – Skye’s will (formidable) pitted against mine (redoubtable). Gradually, the dawning within me, that changes I made created ripples in the fabric of our lives, impacting somehow upon her, thus the ease of eventually knowing that the way to change a situation was to find out what I resisted the most, and to do that/let it happen. Every time I did, major shifts occurred in the area and towards where I had tried to force them. The shortcut. The energy that holds it all in place is always why the ’it’ is happening at all. Focus on the glue, not the bricks.– not moving the actual, but discovering the virtual, that it was set up to break through.
Daily skirmishes – Just as a newfound activity/tiny movement forward was achieved, and I expected/ assumed it, it would be lost. Nothing certain. No points of comfort. Goal-posts in constant motion. Leaving me to explore living in this now moment, as though it were the only one. (Which in fact, it always is).
The moment I realised that how I was dictated how she was, when I realised that I had the power within me to change the outcome of my life, by altering how I felt about/related to/with her, she altered. All I had to do was focus upon my own inner chaos, and transmute this.
Not so simple with a screaming sleep/resistant/needing to be cuddled/rocked baby who would only sleep in the car, and awaken to scream again, night after week after month after year. Not so simple with the one who would catch interesting diseases and nearly die from them. Not easy when so slug-like, defying all images of normality. How does one parent a vegetable? One who recognises mothering attempts with monumental indifference? Who purposely screens out the world, to the extent of controlling the rate of pupil dilatation? Who can hold onto poo for a week, refusing to let it go even when suppositories are used?
Also not so simple with a husband who was locked within his own personal horror of having less (far so) than perfect invade his life. To lose a daughter, and to gain a catastrophe. To lose a wife and to gain an apparently obsessed witch. To have no-one to be there for him. To have to be there for others. To be expected to actually put himself out, to move off the comfortable middle-class orderly base, and extend himself. He had not signed up for this when agreeing to another child.
Where were the friends/relations? Deserted the ship as though this would also wear off onto their own lives.
Life went on. People arrived. Help poured in from the local community. I learnt how to receive. I saw that they came to give, not to me, but to themselves – they all had a story, they all needed to be there. That we were in fact, giving to them, by being receptive. By allowing their gift of themselves. This lessened somewhat the guilt in having up to 50 people scheduled to be in the house, to help, every week. I couldn’t do it/have done it without them.
Maybe it was their sister across the other side of the world, that had a child similarly disabled, on a similar programme, and not being able to help her, needed to help us, as a thank-you to all the others helping her nephew. Maybe an agoraphobic person found us as a safe haven to begin her reentry into the world. Maybe the sister of a damaged sibling, who if born now, may have become more functional with assistance. Maybe someone whose child was miraculously NOT brain injured, against all odds, and in an exercise in gratitude that she were not me – they all came, and all grew.

Time passed.

A gradual and unrelenting sense of urgency began to fuel existence. Originally I felt that it to be the panicked undercurrent of “what if ‘s. . .”The hurry was not that the brain’s developmental timetable running out, but a stemmed from a very different pressure, as that mother was tuned into more than the apparent story-line. She was vaguely aware of the impending major life chapter.

Some wonder why Skye started to be called Kathryn. Those who were in her life at the time, just knew that she was different. Just as I, the mother, knew that there was a fundamental shift in myself, to the point that I was able to continue, whereas the previous one had been saying “Goodbye” to her daughter in the only way she could – by finally being there for her, as a mother.
And in that time of just being there, outside therapizing, just being in the now moment, a shift was allowed to happen. When the desired outcome of ‘Skye better at any cost ’was released, when it was OK for her and I to exist as two units, joined as we were by the bridge I had built, and she had allowed, when there was only us in this world, when later wasn’t a factor, magic happened.
But then, it was a phenomenal shift for her mother to let it go. To accept that maybe this was what Skye was here to do/be. That she (Skye) had achieved far more than she had intended, in this now. That it was time for her to return to wherever she (as a spark of consciousness) had come from. That there was a huge change about to happen.
And so it was.
The new one sat on her sleeping mother’s lap, and gently prised open her eyelids. To gain entry into the world of being that she (as Skye) had refused well in the dance of eye contact avoidance that only another parent of an autistic baby may recognise. This was a defining moment this mother’s life. My daughter wanted “IN”. The very first real tottering step towards life.
Not knowing it at the time. I was also not the one I had been. The new ‘me’ had all the energy in the world. And this was focused in a totally different way..
Life continued. Skye, the raging, withdrawn, highly damaged autistic monster was not there. Who was in her place showed signs of wanting me/us. She started to use our hands as tools. She cried when left alone. She NEEDED. I called her now by her given first name. She had finally crossed the bridge that separated her inner hell to our outer one. Not easier, just different.

Life moved on.
Some wonder why she is not living with me – not even in the same country.
I may even share with them that I do not know how she is, and have no intentions of finding out. Why would I revisit that which I can not change? Why would I cause further trauma to either of us? We both recognise the other. This is not a Hollywood ending. Not in this present now.

Sometimes, the veneer crumbles.

There we all are, in the kitchen of the new house, everything as it should be, the tea prepared, the table set, the very picture of a happy, stable family evening. The four daughters living as the centre of each’s own reality – all wanting and receiving the validation of their own preciousness. One says – “that’s right – Kathryn will be 14 this year” . . . Her cousin Anna does share the birthday – so she may have more of a reason to be reminded of her existence than her sisters.
The offspring of the visiting aunt, the missing beautiful adolescent cousin. The unmentionable odd one. The daughter I did/do not have. The daughter she never could be, has not been even allowed to grace her mother’s fantasies- so deeply entrenched is the inner censure motion to avoid the pain of loss of what had been a lifelong yearning – to have a daughter /an apprentice? Across time . . . .
So never there. . to further cushion the grieving mother, the inner curtain, to never imagine what it would be like to have conversations with that one, to share the girl years, to watch the unfolding of the bud into the rose she would have become. . . . The actual daughter becoming maybe the master/guru of the one who seemed to all on this plane, to be the mother.
Anna’s innocent comment, a decade later, in the very country, where the swap occurred. The mother traveling though the very area, another version of the daughter and herself journeyed together; the mother too exhausted to continue the plan of rescue, of bridging/bringing her out of the hell she fell into within herself. Both of them. The mother giving them together a farewell present, a time of sharing being, without the desired outcome of improvement, of attempting to catch the others up – – a time of just being together in each other’s space. No frenetic programmes, volunteers and therapies – just one with the other.
That memory opened through the years, as though it were yesterday, superimposed upon the cousins’ countenances. Always the mother saddled with the ghost of the one that was, the joy of being totally connected – as few ever experience in even their most intimate connections, – a soul bond that transcended all barriers. Now bereft, the daughter gone to care, the mother supposed to forget, and get on with the present/ . . until some innocuous remark, some stray sentimental phrase/song on the radio, a chance glance of another to her own child – all setting off the inner land-mines.
All prompt her back to this now, with the raw-ness of a new wound, uncovered, as though it were all just yesterday – and where is the etheric gauze and healing ointments? Where are the comforting arms, the soothing voices, as the lost edges flail about seeking the other ??
The floodgates opening at the most unlikely triggers, in the middle of a remarkably able professional and creative life – others forgetting that this one has a past. But at times, there is no future, no present – just the past – still able to be unwrapped and paraded forth.. Unlike another mother whose child may have died, this one lingers in limbo. The forgetting of the heroic measures undertaken to bring that child into this world, to attempt to help her make sense of the world that existed secondarily to the main event in her autistic world.
Others see the mother with her different busy hats on. The rest of the world does its dance to its own tune, oblivious to the inner torment of the unfinished project – not terminated by death, but by circumstance, and an inner recognition of enough being enough, however unpalatable the severance and the consequential inner and outer judgements.
Would I have done it differently? Do I regret the experience? Do “bad” things happen to “good” people?
Was this a ‘bad’ thing? Was I a ‘good’ person? Would the being that came through as Skye been able to move to where she could without the one who was there for her? Did both of them know the consequences of their scheme? I remember saying to those who were very upset about Skye/Kathryn, that how did they know that she wasn’t an aspect of Buddha gaining experience?
Here, in this now, we have one piece of the puzzle of our lives, and the light may not even be shining upon it. How can we judge any of this as other than an adventure in form?