A Volunteer’s Perspective

A couple of weeks ago on a walk in my neighbourhood I walked past a house I had walked past many times.

This particular day I noticed a sign on the nature strip advertising acupuncture with Heather Bruce. I stopped and stared and my mind went careering back 23 years; Heather & Skye!

Excitedly I opened the gate into a lovely peaceful garden; into a main reception room & there was Heather on the phone. I wondered if she would remember me – she did, although a little stunned to see someone from 23 years ago standing there!

I caught up on all the news of Skye, Josh & Sean, relationships, marriages & another child, Ryan.

Heather told me she was still trying to write a book about Skye & would I like to contribute a piece on working with Skye & how that impacted/benefited my life.

I first met Heather & Keith in 1985 at a work Xmas function. Keith & my husband Jim worked together. From memory I was, I think, about 4 months pregnant with my third child. Joel. Heather & Keith were about to be pregnant.

Joel was born in May 1986 & in November Jim came home from work to tell me that Skye had been born. My delight at the news was tempered when I learned that Skye had contracted encephalitis in utero (later found to be toxoplasmosis) & was born to become massively brain injured. We wondered how they would cope. All the usual platitudes seemed inadequate. What do you say…..sorry?

A birth is supposed to be a joyous occasion; we assumed for Heather & Keith joyous wasn’t an emotion they were feeling.

As Heather & I had only met the once nearly a year previously we weren’t close & didn’t socialize. We had updates on Skye from Keith but couldn’t know of the trauma & anguish of her first few months.

At the time of Skye’s birth in November, Joel was six months old. His sisters Jemma & Zoe were 6 & 2 ½. Life was really full & busy as it always is with young children.

However there had been a huge trauma surrounding Joel’s birth in May which Jim & I were still trying to deal with.

I had a complete ante partum rupture of the placenta at 35 weeks resulting in an emergency caesarean . I went into cardiac arrest, then under anaesthetic  for the caesar.  Joel was born blue & floppy with an apgar score of zero & zero.

I was taken to intensive care in an induced coma & Joel to the neonatal intensive care unit. My kidneys were failing & Joel wasn’t breathing. My poor husband; he didn’t know where he was supposed to be – with me or Joel so he raced between the pair of us.

Two weeks later we both left the hospital to come home. Joel’s lungs were now working, his jaundice under control, and was strong enough to breastfeed. I had recovered after numerous blood transfusions & very good care from the intensive care staff at the Mater.

I was told that Joel was extremely lucky                  not to have suffered any brain bleeds during his traumatic birth even though he was without oxygen for approximately four minutes. To be on the safe side he would be monitored closely by a paediatrician for the next five years. His brain scan had shown a couple of grey areas which was thought may hinder his fine & gross motor skills.

We accepted this diagnosis without question as that was really good news. In reality we should have had a baby with severe cerebral palsy. Neither Jim nor I had any knowledge of alternate medicine; we had been brought up to believe that the doctors knew best – who were we to question?

Joel’s progress was slower than the girls had been, but still within normal range. Whereas the girls were both walking at about 10 months & speaking quite clearly at 12 months, Joel didn’t walk until well after his first birthday & his speech wasn’t as fluent. Quite normal I was told for boys but Jim & I still worried.

A year or so later Jim came home from work to tell me that Heather was looking for volunteers to help with Skye’s therapies.

There is a paragraph in Heather’s manuscript describing the reasons why people came to help. This sentence I read several times….”Maybe someone whose child was miraculously NOT brain injured against all odds, & in an exercise of gratitude that she were not me”

I don’t remember having this conscious thought when I decided to volunteer to help Heather help Skye. Reading this sentence 20 some years later, it leaps out at me from the page. Heather is talking about me & yes that is exactly the reason I chose to volunteer.

Zoe was now at kindy so every Tuesday & Thursday mornings I would drive over to The Gap from Daisy Hill with Joel.

Apart from the knowledge of Skye’s brain damage & updates from Keith nothing prepared me for the reality of Skye. Nothing prepared me for Heather’s zeal, fierceness to get Skye well & conversely the utter exhaustion & grieving for a “normal” life. This WAS Heather & Keith & Sean and Josh & Skye’s normal life.

So I learnt with others how to pattern, mask & send Skye crawling through tunnels of boxes, to give her light therapy & the occasional trips to shopping centres at Toowong & Mitchelton. We fed Skye her lunch of mashed avocados laced with cocktails of crushed vitamins & herbs while Heather washed clothes or took Josh to preschool, shopped or tried to have a much needed rest.

Some days Skye would accept us & our sometimes clumsy ministrations with reasonably good grace. She would potter about amongst her toys with the mask hanging from the elastic tape over her ears, covering her nose & mouth to facilitate better oxygen uptake to the brain. She would be having her own conversations in her own language which to us was tuneless noises & squeals. The pottering didn’t last long as every 20 minutes or so we had to put her back on the table for patterning, and how she resented the interruption!

Initially Skye’s resistance & anger on her bad days were confronting for all new volunteers. The maternal instinct to stop what we were doing & cuddle & soothe the hurt away was overwhelming. The non-response to us turning up each day, saying hello, trying to interact was also out of our comfort zone & knowledge of 2 year olds. Skye was in her own world & we weren’t particularly interesting to her.

While all the therapy was going on Joel thought that Heather’s living room was his own personal play room! He had numerous new toys to play with – all for Skye’s stimulation but he reaped the benefits. He would crawl through the tunnel of boxes with Skye & play with her toys not in the least perturbed that Skye wasn’t interacting with him.

I remember an outing to Toowong Shopping Village. I had Zoe & Joel with me & we took Skye out for the morning. We were in the lift as I was too scared to manage my two & Skye in the pusher on the escalators. I noticed that Joel bent down & gently straightened the mask elastic which I hadn’t quite put on properly as Skye was reluctant to have it on. The elastic was over her ear & her ear was bent. Joel put the elastic behind her ear as he’s seen being done many times. Wow…

I also remember the stares – what was this kid, obviously brain injured doing with a plastic mask over her face? How cruel this “mother” was repeatedly putting the mask on as Skye repeatedly tore it off! Before I met Skye that person staring & thinking those things could possibly have been me!

Another memory is of Skye, obviously hungry & wanting her lunch pushing an old milk crate used for storing toys into the kitchen & up against the bench. She knew Heather had her bowl on the bench with her banana “cocktail” & was determined to get it. She climbed up & astonished us all when we realized the thought processes she’d used to do this “simple” task.

One day while Joel & Skye were crawling through the boxes Heather asked me how Joel was progressing & were we noticing any improvement in his motor skills. All the “playing” he was doing was enriching him, although I don’t think I thought that way at the time. Through Heather I was introduced to alternative medicine & therapies. I could see the improvement in Skye, but not necessarily in Joel. Of course by then Heather knew about Joel’s traumatic birth & “unknown” grey areas on his brain scan. She gave me a book written by Glen Doman, a brain injury expert whose therapies we were using with Skye. I was hooked….what an amazing man. Heather said to me “don’t just accept Joel may have developmental problems, do something positive.”  Heather is a hard person to say no to!

For the next few months I created myriad flash cards & words on cardboard in red texta to the exact specifications in Doman’s book. Every night I spent measuring, cutting & colouring in. I also borrowed some cards from Heather with red dots on them in seemingly random order from which Joel could ascertain whether there were 46 dots or 66 dots just by looking.

I used these flash cards every day, sometimes 3 times a day. Sometimes Joel wasn’t interested so they were put away; other times we could get through all of them.

By the time Joel was 2 years old his fine & gross motor skills were better than average. He was also able to pick out one flash card from many on request, His speech improved. When he was 3 years old I found him sitting on Zoe’s bed reading her 1st grade reader. I assumed he had remembered the words from when Zoe & I had read together each night. Just to trick him I turned 2 pages at once, thinking he wouldn’t realize & he turned the pages back to where he was up to. I asked him to tell me what a random word was & he did! I sat with him while he read the whole book!

Heather & Skye opened up a world for us that we didn’t know existed & for that we’re grateful.

As Skye grew older she became more withdrawn & slipped further into her autistic world. Heather made the decision to stop the volunteers from coming as Skye was becoming too difficult to handle.

I went back to my life hearing from Heather occasionally re Skye’s progress. Heather had been determined that Skye would go to preschool & was still working towards that goal.

Over the ensuing years we lost touch, moved houses & countries & I always wondered whether Skye did get to go to school (she did!). Somehow whenever November came around I would remember her birth & quietly say to myself “gosh Skye’s 10 now….or 15”

Somewhere I have a black & white photo of Skye taken by our local newspaper at our house, jumping on our trampoline. Her mouth is wide open showing those pearly whites. Of Skye I remember beautiful soft brown curls (her mother’s hair), dark eyes & those wonderful teeth. Heather used to dry brush Skye’s gums to increase the blood supply so she would have more chance of being able to use her mouth properly for speaking and eating. I remember her twirling to her inner music, squealing with delight on our trampoline or with displeasure at being patterned.

Fast forward 23 years & by accident or design Heather & I are now living in the same suburb. As I sit writing this I think about what Heather & Skye taught us.

  • That there are always alternatives;
  • be aware of self;
  • to listen & learn;
  • never accept without questioning;
  • to be compassionate & tolerant.

So there isn’t the fairy tale “happy ending” that Heather wanted for Skye but Skye is well loved & looked after by her foster family in NZ. Heather fought tooth & nail for that progress & Skye is all she can be because her mother chose to fight for her. She didn’t just accept.

Heather says she has become a better person because of Skye & I’m sure whoever touched Skye’s life, however briefly, feels the same.