Perverse as it seems now – the very best advice ever given to me regarding Skye was from the hospital: had I heard it from my heart, not my head . . the growth of a mother . . through the getting of wisdom.
- Learn to live each day at a time
- Never expect anything of her
- Learn to love her
On top of the prognosis, at the time, this sounded obscene – do nothing and nothing will happen – as nothing can happen. In hindsight, the only way Kathryn (called Skye then) has come forward is through my acceptance of her wholeness as a person, her completeness as she is, and loving her being.
Wanting her to change and/or be different is a world away from needing her to be so.
On stumbling across the …Option message http://www.option.org/about_us/atca.php and the work they did with their autistic son. I felt utterly bewildered – how could I lovingly accept that my daughter couldn’t develop past the … slug she was? What an uncaring, no good mother I’d be if I let her stay in the mess she was in. I didn’t realise that it was up to me to change my perception of it all.
A temporary situation, of learning and growth, to be handled with spiritual elegance. Read more here
A golden opportunity to learn unconditional loving, to live totally for another to carry poverty to its ultimate – reshape a child’s future by giving it everything, sparing nothing, giving beyond everything any expert had to say. Indeed, totally disregarding ‘experts’ I decided neurologists, paediatricians, physiotherapists, occupational therapists, speech therapists, special aid teachers, psychologists, psychiatrists – everyone was being trained to see what couldn’t happen.
They could label, then having a label, move on. I alone lived the reality of a massively brain injured baby. They saw her for a few minutes to take measurements and observe her total lack of response, then they’d go onto their next reality.
If I saw Skye as a massively brain injured baby, she obligingly played the part. She could breastfeed and dirty nappies. Sleeping came very hard for her and judging by the distorted shape of her head, she probably was in a lot of pain. The drugs, both anti-convulsive and viral suppressant, had an unknown effect on her. She didn’t want to be here and made her opposition to anything and everything obvious – either by active rebellion or passive withdrawal from all contact.
We heard the labels given to her
We ran them through our conscious thoughts, probably every time we saw her. Occasionally when I got caught up in a moment of fun or spontaneity – she became my daughter and we played however that was.
From there through all her ‘dying swan’ acts – I loved and supported her.
Always wanting more was not accepting what I had – what a conundrum!!!
Finding Option changed my world – and hers.
Live each moment as that is all there is.
Feel the shift.
Love
Let go of the outcome: sit back live each breath – in love
