Hindsight – a bucket list

What I would do differently if I were to do it all over again with what I know in hindsight?

In looking back over this after writing it – it does look like I am beating myself up – so taking the lens of maternal guilt away – these are the things that I could have done better.

I have no idea whether saving Kathryn Skye was what I was ‘supposed’ to do – but in so doing I have changed a vast number of people’s lives and she and her presence has given meaning to far more than I will ever know of.

1) – During pregnancy I would have paid attention to my own incredible ill health.  Lack of Iodine, Zinc, Magnesium all played their part in this saga of my not knowing and decades on starting a wish list of what I could have done (in hindsight) so much better ..

The massive upper respiratory infection (toxoplasmotic infection) that was so unlike anything else I had ever had would have been fixed had I been looking after me. I was not.  As a ‘good’ mum I was focused on the children.  Look after your own mask first they say on planes. . ..

Vitamin C in therapeutic doses – at least 10 grams spread over the day would possibly with the addition of Zinc – as it is so deficient in the soil and Selenium – ditto – and Vit D – and Iodine (I did not know I was so thyroid challenged) would all have meant my immune system would have had some help.  Magnesium would have helped all the uterine cramps and insomnia and allowed maternal coping.

Of course had I been happy in my marriage and had we been relating well the underlying inner distress would possibly have meant healing may have been able to happen.

2) – When Skye was vomiting milk from her nose and when she was not well and discharged at 5 days old as a well baby – when she so patently was not – I could have demanded care – but was more interested in getting home to look after the boys better than was happening with me not being there.

As she fell into the huge hole of neurological disintegration I could have demanded care – but my then husband made such a deal of having a paediatrician and his not even thinking the problem was bad enough to even warrant talking with me – let alone seeing her.

Me not just walking into the hospital and demanding care was the major stumbling block.  As she became more and more dysfunctional and harder to keep awake (going into a coma) and harder to breastfeed, I just tried harder . .. ..

3) – When she was in intensive care and dying – I could have stopped keeping her here. I saved her  from dying actually many times. That would have been easier and for her – ???who knows – better???

4) – Starting a not good enough neurological rehabilitation programme and not being satisfied, I could have possibly searched harder to find more on what else – as the year lost whilst we did some and not all of the programme was a waste . . . time spent investigating what mainstream could offer was another waste of Skye’s developmental stages.

5) – When I found Kenja – I could have gone against everything Keith wanted and gone to Sydney to do the course as Skye was the most present ever when they worked with her.

6) – Finding Reiki was a Godsend – and possibly I could have found them earlier?  Also it would have been far more useful had I been attuned to Reiki when pregnant or at any time prior to her birth – as I could have had the tools – my own healing hands – in all the time she was screaming and I was holding her.

7) – Not getting involved with parent support group politics,  Far more egos involved there and not nearly enough thoughtful questioning and therapeutic intention.

8) – Getting Keith to leave earlier . . . It meant I was finally actually doing what I had been – doing it all myself – but without the brake – as he was so very good at passively obstructing the process.

9) – Not getting her vaccinated for MMR A parent’s dilemma. http://www.youtube.com/watch?v=d40suCKnjbI http://vaccinationdilemma.com/ This was the beginning of a huge period of trying to save her and maternal exhaustion as I battled to keep her alive and sane for over a year.   She was never as good as she had been prior to the vaccination.

10) – Finding Melatonin – I would have had a far easier life had someone suggested that as a highly autistic person she had wonky brain chemistry – her inability to sleep was devastating to both of us.  I did not get her started on this till she was 19 years old. . . an incredible journey of maternal devotion . . . and then picked up and followed on by Patricia.  Kathryn’s sleeping then meant she was far calmer in the day and a little more likely to pay attention and not go into self harm and abject distress.

11) – Only being one woman, replete in inner resources, but few outer ones.  I did all as I could as quickly and as courageously as I could.

Wearing out is what all humans do at some point. The fact that when accidentally pregnant at the end of a relationship and having a child who looked like being about to die – as she was at 7 1/ years old – meant that the ensuing unwanted pregnancy and much loved baby took over and Kathryn was let behind to apparently fend for herself in another chapter of this mother’s journey.

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Best Advice Ever

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.

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!!!

Now at 27 years old – she is astutely walking her own path.  Being her own person. Able to as she is loved and accepted. She knows when she is.  She knows when she is being judged. She acts accordingly. Acceptance meets acceptance. Love meets love. Whilst with me – and she knows who I am although it may be months or years between meetings – she was attentive and treated me as her mum – as much as she could.

Sprinkling her with my amazing clearing Aura Soma bottles, and possibly as we were in a very safe setting, she was no doubt having all her inner ducks lined up – and she did one thing she had not done before, or since . . . we could say as a totally unexpected birthday gift for her mum.   Autism is surely about having splinter skills!!!

The mother of a ’special’ kid’s heart gets a workout.

Let go of the outcome and sit back and love.

 

 

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Kathryn -Our Waimarie Runner

Kathryn attended the Waimarie Adult Learning Centre at New Plymouth Girls’ High School for two days a week in 2008. The Unit has traditionally catered for students with severe physical disabilities and in 2007 we enrolled our first student who was mobile.

It was with enthusiasm that we met Kathryn who was not only mobile, but a very athletic young women who loved being on the move. She offered a new energy to the Unit and a program was created to balance the release of this power along side her learning program. Staff were encouraged to engage in a vigorous fitness training program so they could keep up with her on her daily jogs.

Two instances come to mind that provided great humor to all. The school sports days are for all to test their physical prowess or just join in the atmosphere of fun and challenges between the house teams.

We arrived at the large sports venue and maneuvered our five students in wheelchairs towards the grandstand that sat all the waiting teams and spectators. Amongst the hundreds of heads surging in the same direction, the staff lost sight of Kathryn. Anxious staff frantically scanned the mob and covered any possible exit. Suddenly the speaker system blared out “Would that young woman please get off the track.”

Kathryn had leapt over a large fence and was happily jogging down the centre lane towards the finish line leaving the man with the starter gun and row of prime athletes lined up in their starting blocks for the 100 meter sprint looking a tad frustrated. Kathryn had her chance later in the day when she jogged around the arena and gained house points in the 5OO metre fun run.
In term three the school participates in a Fun Run where all students can walk or run a course measuring 5km. Again mufti is allowed and everyone races to the second hand shops to buy their new outfit in their house colours of course.

It was the first time in the Units 13 year history that one of our students could run the course. It was an delight to run alongside Kathryn and hear all the encouraging cheers of support from her peers and staff stationed along the course. Kathryn has a beautiful fast running style which one can liken to a panther in full flight.

The only reason we did not rank in the top times was her great desire to gather treasures on the way. The course was set beside a small river with trees banking it, so a large pile of sticks, leaves and the odd ice cream stick were scooped up on the way. One staff person of my age era likened her to the children’s Sunday Stories favourite “Diana and the Golden Apples.”

For those not brought up in NZ here is what we listened to as kids growing up on a Sunday morning – in stead of the very questionable video music the kids do now . . .
******** http://www.dailymotion.com/video/xnm13_diana-and-the-golden-apples_fun

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Kathryn (orginally known as Skye for first 4 years) being different . .

From a friend in retrospect . ..

Prior to Kathryn, Heather already had 2 children;

My memories are of Heather looking after me – especially cooking. Her energy and interest in life. Her drive and intelligence. Me at times feeling discombobulated in big city Brisbane and with study (she was my main acupuncture lecturer when Josh (3 years older than Skye) was just a baby). She feeding me and that was what I needed. Practical mothering care. Where did she find the energy?

Skye born and had high fever, convulsions. Me thinking – let her go – the work and commitment involved in keeping her – Was it kind particularly as she fought so hard to go and would have a life with considerable brain damage? You don’t say no to Heather easily and many of us roped into Skye’s treatment (and we wanted to) cross crawling to develop the brain. Three of us at a time moving her head, moving her arms and legs as if she was crawling. Her lying on her front, screaming and I found that hard to do.

Hard on a marriage and Heather and Keith separated.

Years later when Skye was nearly 4 Heather and her friend, Jane; and Skye were on a trip and I was living in Queenstown by then. I blithely said I would take care of Skye/ Kathryn while Heather had a day off and went on a tourist trip for 12 hours. I took Skye/Kathryn down to the lake for a walk and began to realize then perhaps this was not going to be an easy day. I learned the hard way what severe autism was.

There was someone home but the lights were very different to anything I had ever encountered with anyone before. There was NO response to anything I said, signed, led. She had heaps of energy so I just let her run about safely. Heather had left instructions as to her feeding and supplements, pull up changing which was easily accomplished as far as I recall.

Later in the day, before Heather arrived back, I had Kathryn inside and she was becoming fractious and bored. I tried the usual things; was she hungry? I tried reading a story. Nothing. NO response just continued noise and moving around. How about the TV? Again nothing. It was as if she couldn’t see it in the same way the cat or a dog doesn’t despite being in front of it. NOTHING would entertain her or engage her. I was totally at sea as I had had no experience of a person this different from normal. The whirling around the room and noise increased. Even I could realise she was very agitated and bored. Because it is over 15 years ago, I cannot remember why I did not let her be outside again. Perhaps it was dark, or I was afraid she would run away. It was so hard to see her this distraught. I was getting exhausted and distraught myself and felt like I could have thrown her out the window. She was a beautiful child: the only physical sign of her disability a small head.

I was SO very pleased to see Heather and from what I remember so was Kathryn.

I have only seen her once since then about two years later in Christchurch when I visited Heather. Heather did an amazing job with her and I respected her decision to have give her up. I am very glad Kathryn has such a loving and caring family to take care of her.

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Kathryn’s angel speaks – from another mother’s heart

Patricia and her extended family (whanau) have embraced her as their own.
She is blessed to have them.
They feel blessed to have her.

Written four years ago ..

“There are many special people who touch our lives in a certain kind
of way and have known them we will never be the same again
Having first met Kathryn in 1998 has truly been a blessing – I did not
know that at first but after almost ten years together I do know that
Kathryn has truly changed not only who I am but how I look at people
with any sort of disability, that change has been passed on to my two
sons and my extended family.

‘Kathryn has taught me to be grateful for who I am and this I have
passed on to my sons and nieces, she has taught me that all people
need love and nurture and a safe place to call home.

‘I have been told so many times that I must have so many patience to
look after someone like Kath but I think that’s one of the qualities that
Kath has taught me, she has taught me to be a much calmer person
I wasn’t so sure about taking the job to do Home Support for
Kathryn, after meeting her I thought I could not handle or even cope
caring for a person with a disability let alone a person with such
challenging destructive behaviors but a ‘little voice’ kept nagging me
to take up the challenge and I have never regreted taking up that
challenge.

‘I remember thinking there is this little girl who needs me and honestly
speaking I needed her – times were very difficult at the beginning
because I think Kathryn was testing her boundaries and were getting
to know each other, I also think most of the early behaviour was
issues around Kath’s own securities.

‘Although Kathryn has her disabilities we have found she is smarter
than we all think she is – first Kathryn came to realise I was there for
the long haul and knowing she was been given
stability, structure,attention,
security, trust and loads of love and attention she started to pay
attention to things and people around her.

‘At that time my two boys Nathan who is 23 now and Daniel who is 21
grew up with Kathryn, I remember Nathan having lots of time for Kath
but Daniel I think was a bit jealous of Kath and Kath knew that and
used to in her own way wind Daniel up,there were many times Kath
would go out of way to make lots of noise while Daniel was watching
TV or playing video games, she enjoyed annoying him.

‘We as a family would get so excited when Kathryn would show off
things we thought she was not capable of like the very first time she
did up her seat belt and, when she switched on the light or closed the
doors or took her plate to the sink after dinner one night or putting her
dirty clothes in her own washing basket and when she finally showed
us after months of teaching her how to sit properly on a chair and
how to sleep in bed these were all such big achievements for Kath and
caused a lot of excitement in our house.

‘There was this special moment once at school when Nathan and I
went to Kathryn’s school concert – this was almost 2 years after Kath
came to live with us – Kathryn was wondering around the school yard
picking up things as she does, somehow she noticed me or recognized
my voice and came straight towards me pushing herself on my lap to
sit and giving me a cuddle and kind of a kiss on my cheek, this lasted
maybe a minute but the memory and the feelings have lasted forever finally
Kath and I made a connection and it was real – I remember
telling every body who would listen and how good I was feeling.

‘Taking Kathryn to Fiji was a mission so we thought – she loved it and
behaved so well,even I was surprised at the way she interacted with
people around her and how she was so calm and settled.

‘Again at my dads funeral Kath showed us that she knew what was
going – she seem to put on her best behavior knowing what I was
going through at that time.

‘There are so many changes we have seen in Kathryn in the years
that I have cared for her – she has grown into a beautiful young women
but yet still in a mind of a child.

‘Kathryn is a lot of hard work and commitment but life without her – my
life would be empty, I love watching her smile and feeling happy and
all the energy she seem to have, I love her beautiful hair and wish I
could have her beautiful slim figure.

‘I love you Kathryn and may God Bless you and always keep you
smiling.”

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Kathryn is a much loved person

Several years ago I thought it time to put Kathryn’s story up on line for those who may have been her volunteer – some would have been touched and wondered what happened next . . I asked about, and received various responses – some of them are below.

I feel this one gives the depth of heart felt connection she inspires.

Kathryn is our Waimarie Runner

Kathryn attended the Waimarie Adult Learning Centre at New Plymouth Girls’ High School for two days a week in 2008. The Unit has traditionally catered for students with severe physical disabilities and in 2007 we enrolled our first student who was mobile.

It was with enthusiasm that we met Kathryn who was not only mobile, but a very athletic young women who loved being on the move. She offered a new energy to the Unit and a program was created to balance the release of this power along side her learning program. Staff were encouraged to engage in a vigorous fitness training program so they could keep up with her on her daily jogs.

Two instances come to mind that provided great humor to all. The school sports days are for all to test their physical prowess or just join in the atmosphere of fun and challenges between the house teams. We arrived at the large sports venue and maneuvered our five students in wheelchairs towards the grandstand that sat all the waiting teams and spectators. Amongst the hundreds of heads surging in the same direction, the staff lost sight of Kathryn. Anxious staff frantically scanned the mob and covered any possible exit. Suddenly the speaker system blared out “Would that young woman please get off the track.” Kathryn had leapt over a large fence and was happily jogging down the centre lane towards the finish line leaving the man with the starter gun and row of prime athletes lined up in their starting blocks for the 100 meter sprint looking a tad frustrated. Kathryn had her chance later in the day when she jogged around the arena and gained house points in the 5OO metre fun run.

In term three the school participates in a Fun Run where all students can walk or run a course measuring 5km. Again mufti is allowed and everyone races to the second hand shops to buy their new outfit in their house colours of course. It was the first time in the Units 13 year history that one of our students could run the course. It was an delight to run alongside Kathryn and hear all the encouraging cheers of support from her peers and staff stationed along the course.

Kathryn has a beautiful fast running style which one can liken to a panther in full flight. The only reason we did not rank in the top times was her great desire to gather treasures on the way. The course was set beside a small river with trees banking it, so a large pile of sticks, leaves and the odd ice cream stick were scooped up on the way. One staff person of my age era likened her to the children’s Sunday Stories favourite “Diana and the Golden Apples.”

For those not brought up in NZ here is what we listened to as kids growing up on a Sunday morning.

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What started me on my journey?

Being a mum , I discovered just how much was sacrificed for me. We all live and breathe every tiny hiccup for the baby we make. Nothing is as important as their very . ..

Not understood till we get there ourselves

After 35 years of dispensing health care and advice, I now understand that I do it all through my mother’s heart. As a mother I  .  . . bring my needs and hopes and aspirations into all my tending those who wish to make their own babies, or who are struggling with some parenting issues. We all tend, care for and empathise with.  Some more than others.

My own personal mother’s heart was stimulated when I got a puppy at age 19. He became an extension of myself, raised with positive reinforcement and only acknowledged when he did what I wanted.  He grew to be a very amazing animal, who just knew what to do, before being prompted.  I thought at that tender age that that was the best training I could have had to be a mum.

Not that I was ever to be one, as I never wanted to inflict on another what my mother had unwittingly done to me.  She did her best –we all do . . .

Maybe we are always to be doing what we are  . .and when we try so very hard to fight it – life just gets more tricky at ensuring we still get to experience what it is that we need . Along came my first contraceptive error – there IS no such thing as  a ‘safe’ time in the cycle . . when someone is coming, they arrive as best they can in whatever window that appears . . in this case  a day 25 conception after a definite ovulation on day 14 in a very regular cycle. No such thing as a ‘fertile’ time – there are fertile couples . .

Eventually another son followed – after the life diversion of my studying to become a healer 6 weeks after becoming a mum. This was after becoming a problem solving natural therapist who things through things very differently than what we had been taught – I then designed and delivered acupuncture courses – arrived son two. Then daughter – massively brain injured – I know now – a simple case of not knowing how to nourish myself and my baby – and a life crossroads, and  a health disaster that spun decades whilst I attempted – as we all do – to correct living in this century and with the fads we all believe will assist us.

Son four arrived again, in contraceptive haze – so at 39 I found myself as a single mother . .

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