Home' Greymouth Star : April 14th 2015 Contents Greymouth Star
4 - Tuesday, April 14, 2015
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uLetters to the editor
1775 - The first American society for the
abolition of slavery is organised by Benjamin
Franklin and Benjamin Rush.
1828 - The first edition of Noah Webster’s
American Dictionary Of The English
Language is published.
1865 - US President Abraham Lincoln is
shot by actor John Wilkes Booth at Ford’s
Theatre in Washington, DC, and dies the
1912 - British liner Titanic
collides with an iceberg in the
North Atlantic and begins sinking.
1939 - John Steinbeck’s novel The
Grapes of Wrath is published.
1945 - US bombers pound Tokyo
and Japan’s Imperial Palace in
World War Two.
1956 - Ampex Corp demonstrates its first
commercial videotape recorder.
1970 - United States Apollo 13 spacecraft
heads back to Earth after moon mission that
was aborted because of mechanical problems.
1981 - Columbia, America’s first operational
space shuttle, lands at Edwards Air Force Base
in California after its first test flight.
1987 - Syrian troops deploy at outskirts of
Lebanese port city of Sidon — the farthest
south they have been since Israeli invasion of
Lebanon in 1982.
1988 - Soviet Union signs accord to end its
inter vention in Afghanistan and to allow Red
Army to start troop withdrawal.
1999 - Nato mistakenly bombs a refugee convoy
heading out of Kosovo, killing 75 civilians.
uWest Coast yesteryear
uToday in history
Christian Huygens, Dutch mathematician-
scientist (1629-1695); John Gielgud, English
actor (1904-2000); Rod Steiger, US actor
(1925-2002); Loretta Lynn, US
country singer (1932-); Julie Christie,
British actress (1941-); Brad Garrett,
US actor (1960-); Robert Carlyle,
British actor (1961-); Julia Zemiro,
Australian television personality
(1967- ); Anthony Michael Hall,
US actor (1968-); Adrien Brody, US
actor (1973-); Sarah Michelle Gellar,
US actress (1977-); Abigail Breslin, US actress
“ If the end brings me out all right, what is
said against me won’t amount to anything.
If the end brings me out wrong, 10 angels
swearing I was right would make no
difference.” — Abraham Lincoln (1809-1865)
“God is our refuge and strength, a very
present help in trouble. ” — Psalm 46.1
film censorship has
had its effect on
who can and who
cannot play billiards. Last night ’s meeting of
the Greymouth Borough Council decided to
lower the age of admittance to Greymouth
billiard saloons from 18 to 16. It also provided
an attack on the old adage that fathers and
grandfathers are wont to use the phrase ‘the
good old days’. They may have been good old
days, but they must have been bad old billiard
rooms if the opinions of the councillors last
night are reliable.
The environment of the old-time billiard
hall was far different from what it is today,
according to Cr J W Greenhill, a point of view
with which Cr S J Hayden heartily concurred,
pointing out that billiard saloons today were
quiet and no liquor was allowed.
The first move was to lower the age limit
on entry to saloons from 18 to 17. This was
subsequently successfully lowered to 16. Now
the fifth former in short pants can rack his cue
with the best of them.
Women are just as vital on the national or
provincial scene as they are the oft-times of
domestic emergency. That the Greymouth
Borough Council holds this opinon, it showed
last night, when it decided on an approach to
the National Council of Women asking that at
least one member should attend a civil defence
welfare course at Lincoln College. The course
will be held later in the year and is designed
mainly for women volunteers.
The Mayor, Mr F W Baillie, said there were
as yet no women involved in the Greymouth
scheme which is still in its formative stages.
uFood for thought
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he doctors were worried.
They tried to hide it, Jordan
Turner reckons. But their
faces said it all: something
was not right. Jordan’s wife
Mel was about to give birth
to their first child.
At the end of a long night of labour,
she was “at the end of her tether”, going
in and out of consciousness, throwing up
and shaking. When Mel’s blood pressure
plummeted, an emergency C-section
was ordered. Jordan held her hand and
watched as the room filled with nurses.
Mel was fighting, not just for her baby’s
sur vival, but for her own.
It was not meant to be this hard. After
all, everything had been going so smoothly.
Jordan and Mel fell in love when they
were 16. They got hitched at 22 and were
soon ready to start a family. Three kids,
they decided, would be the right number.
Jordan wanted a son to play rugby with,
and take camping and hunting. Mel is a
nurturer. She wanted a child to encourage,
dote on and dress up. They would get their
wish: a baby boy. Their reaction, laughs
25-year-old Jordan, was, “Just jubilation,
eh. We were so stoked.”
One ultrasound changed everything.
The baby had Down syndrome, a
developmental disorder. The doctors made
reassuring noises. Not to worry, they said.
Down’s is not life threatening. Jordan
and Mel were sent home with stacks of
pamphlets, and they turned to You Tube
to answer the rest of their questions. But
the specialists had more questions of
their own. They ordered extra tests, which
revealed the baby also had a serious heart
problem; one of the biggest congenital
defects that the doctors had ever seen.
“It felt like a knockout punch,” Jordan
said. “ We spent a week crying and
wondering what to do. I was like, ‘I don’t
know whether I can go through any more
of this’. What had we got ourselves in
for? I mean, you expect your child to be
successful, beautiful and all these other
things, and then you’re told: ‘No, that ’s not
going to happen.’ We grieved, not because
we were going to have a child with a
disability. We grieved for the life that we
had thought we would have. It wouldn’t be
a three-bedroom, picket-fence fairy tale.”
Talk to the parents of special needs
kids, and you discover their stories are
woven together by common threads. The
excitement of a pregnancy is brutally
interrupted by a shock diagnosis. What
follows, they recall, is a blur of hospital
visits, hazy scans and what-ifs. What if
he cannot communicate? What if she
needs surgery? Always at the back of
their minds: what will life really look like
further down the track?
Those questions were too heavy for some
of Jordan and Mel’s friends and family.
One person said the couple was far too
young to deal with a challenge of this
magnitude. Another said they wouldn’t
have the financial means to raise a special
needs child. But Jordan and Mel had the
backing of their parents, many friends and
their church. One in 1000 New Zealand
children are born with Down syndrome,
and they knew there was support out there
for young families. The biggest test, Jordan
says, was to their relationship.
“In situations like this, a lot of guys go
into their shells. It’s all that ‘stiff upper
lip’, ‘harden up’ kind of stuff. Th at would
have been the worst thing to do. Mel and
I were both feeling intense emotions,
and we were under high pressure. We
really needed to talk to each other. There
was never a question in our minds about
whether we actually wanted this child. We
did. But there was a heck of a lot that we
needed to learn and prepare for, and the
only way we could do that was by being
there for each other.”
During 26 hours of labour, Mel lost a lot
of blood. When the baby was finally born,
he was bright purple and struggling for air.
Jordan cut the cord, and within moments
his new son was wired up with tubes
and placed in an incubator, while Jordan
attended to his exhausted wife. When
Mel finally laid her eyes on her boy he was
“ Very early on, we told people that his
name would be Liam,” she recalls. “So
he always had a name. People would
say, ‘Liam’s going to be okay ’, or ‘We’re
praying for Liam’. Six hours after he was
born, they wheeled me into his room. I
didn’t have the strength to hold him, but
I finally saw his face. I held his little hand
through the window of the incubator. I
said, ‘Yes, you’re definitely Liam. I’ve been
waiting for you for so long’. ”
Rachel Callander knows a lot about
waiting. Her daughter Evie was born with
a complex chromosomal disorder that
warped her internal organs and stunted
her growth. Evie could not walk or talk,
but before Rachel and her husband Sam
got up each morning, Evie was already
wide awake. She was excited, “ like a little
puppy”. At her own speed, Evie reached
unique milestones. She was able to reach
out and touch people’s faces. She could
hold her own bottle. She developed a
wicked, infectious giggle. And yet Rachel
believes some people simply saw Evie as a
helpless, disabled child.
“One of the first reactions was from a
close family member who said it would
have been better if Evie died. That just
broke my heart. It wouldn’t have been
better. Every day you live on this planet
is a good day. But it was hard. We were
looking at this beautiful little child and
wondered how long she’d be with us. We
decided to make Evie’s life as normal as
possible. We made her accessible to our
friends, and they got to know her. ”
Rachel is a professional photographer
who looks for beauty in ordinary
moments. Having learnt so much from
her daughter, she wanted to share it with
others. Rachel published a book called
Super Power Baby Project, a collection
of stunning portraits of children with
chromosomal disorders. Each portrait told
a unique child’s story.
“The language we use to describe
disability in our culture is unacceptable,”
she says. “ We say still describe people as
‘retarded’ or ‘abnormal’. We need to change
that. I tell people that children like Evie
have superpowers. They say, ‘ What do you
mean?’ Well, they’re inspiring change in
their communities. They have an incredible
capacity for unconditional love. They can
communicate so much without even using
words. Evie had such big eyes; she drew
people close to her and invited them to
engage with her.”
In February, New Zealand dad Samuel
Forrest caused an international media
storm when he claimed his Armenian
wife had walked out on their Down
syndrome baby. The couple had received
the diagnosis only after their baby was
born. However, scientific developments are
allowing us to learn more and more about
our babies while they are in the womb. The
ethical challenges are growing too. How
much should we know? Should a special
needs diagnosis determine whether a
pregnancy is continued or terminated?
“It ’s good that we have more information
during our pregnancies,” Rachel said,
“ but we expect everything to be perfect,
because that ’s what we think we’re entitled
to. There’s a lot of pressure on women
to be successful in every way. I feel like
there’s a real danger if we strive towards a
non-existent ideal of having these perfect
children. What do we do if they’re not
perfect? We can’t just decide they ’re not
worthy, and discard them. We are playing
God, and saying ‘this is not good enough’.
And that really scares me.”
He does not claim to be God, but in the
Waikato town of Thames, Cliff Robinson
comes pretty close. He is the devoted
father of two intellectually impaired
children. Every day, Cliff gets Marita and
Johnny dressed, then drives them 17km
to a day programme. Back home, he does
errands and washing. He grows veges
and goes fishing to save money on food.
Today, he caught a few snapper and a nice
big dogfish for tea. In the afternoon, Cliff
picks his kids up and watches them until
bedtime. They cannot be left alone. It is a
routine that is familiar to many parents,
but here is what makes Cliff ’s story
different: his kids are, in fact, adults. He’s
been their sole carer for 40 years.
“They are entirely dependent on me.
I hate to say it, but I’m nearly 80. My
biggest worry is, ‘ What happens when I
pass on?’ I dread to think how they ’ll take
it. I was updating my will this morning.
Sometimes it just hits me. They ’re going
to lose their home, their security, their
lifestyle. They lose everything, the moment
I die. I don’t have any other children;
there’s no family. There’s nothing. They’ll
have to go into care.”
In 2012, Cliff was part of a group that
took the Government to court in a high-
profile case that resulted in fairer payments
for family carers. But this has never been
just about money. Cliff has always been
determined to look after his own children.
People come up to him on the street and
congratulate him for his commitment.
Others, he says, “just don’t want to know ”.
He would love it if someone came round
and did “girly stuff ” with Marita.
But most people don’t have time for
that: “ They ’re caught up in their own
lives.” Marita is sweet and sensitive,
while Johnny can often be “fairly dark
and remote”. He is schizophrenic and
diabetic. He needs insulin four times a day,
and is on medication to suppress sexual
urges. A temper tantrum can erupt like a
volcano, even though Johnny is on strong
psychiatric drugs. His dad says, after all
these years, parenting is still tough.
“ You never get used to it as time goes
by. Never. It’s very hard to love someone
when they are screaming and cussing and
hitting you. But I’ve dealt with it. You just
learn to cope. See, I love them. I love to
cuddle them and give them kisses and tell
them how much they mean to me. My
daughter comes out in the morning and
walks into the lounge and says, ‘Oh, my
daddy, I love you.’ That means everything
in the world.”
After two weeks in neonatal care, little
Liam Turner came home with Jordan and
Mel. For the first time in months, they
were enveloped in silence and stillness.
There were no beeps or buzzers; no
nurses to check on the baby; no relatives
nearby to fuss over him. At first, all he
did was feed, sleep and wake. Soon, Liam
started smiling and using his voice. He’s
pretty cheeky. Last week, he wriggled
himself out of his pants.
Jordan believes his son will never be a
sports star, but he will lead a pretty normal
life. A major operation in January closed
two holes in Liam’s heart. He may need
more surgery, but for now, the outlook
is bright. The little guy is starting to put
on weight. Therapists and home care
nurses are helping him develop muscle
movement and motor skills. His growth
will depend on the amount of time and
care he receives. Mel’s a full-time mum.
Jordan works as a landscaper during the
day, but his favourite job begins when he
“At first, part of me just wanted to close
the curtains and get on with it. But then
I made the decision that I wouldn’t be
ashamed. Having a special needs child
is not something I want to hide. To me,
that ’s so selfish. Liam would pick up on
that. When he grows up, I want him to
know that we embraced him and loved
him from the start. Sure, there are trials
and tribulations. But after spending a few
weeks in Starship, we became so grateful.
There are many families in much more
difficult situations than ours. ”
Having more children is on the
backburner for Jordan and Mel. One day
they hope Liam will have brothers and
sisters to look out for him. But the Turners
don’t want to become overprotective
parents and, as time goes by, they ’re
learning to let go; learning to take things
day by day. Their experiences are shared by
many parents of special needs kids.
It’s funny, they say; you set out to change
your child, your child ends up changing
“ Evie has given me depth and
compassion,” Rachel Callander says. “A
greater ability to love and accept. I’m less
judgmental. I have a broader world view.
As a photographer, I see even more beauty
in the world. I’m less afraid of people, and
I can see potential in others. It’s made
my life richer. I’ve stopped writing people
off and believing they have no place in
society. Everybody can be something, and
everybody is important to somebody.”
Her daughter was important to more
than just “somebody”. Evie surprised,
delighted and challenged many people in
her hometown, Timaru, until the night
she passed away peacefully in her sleep
in 2010, aged two and a half. Evie’s death
came out of the blue, but she had sur vived
much longer than expected. In the four
years since her death, Evie has touched
many more lives. Rachel has told her story
on television and at conferences.
There is one question that follows Rachel
around: does she want to have another
The answer, she says, has to be “no”.
She carries the gene that caused Evie’s
disorder. Rachel discovered this only
after her baby was born, and no one else
in the family has had Evie’s condition. It
was hard to decide against having more
children, but Rachel is now at peace with
Every day, she wears something bright
yellow, in Evie’s memory. “ It ’s because of
the Coldplay song Yellow. My husband
Sam and I went to their concert, and they
sang the lyric: ‘Your skin and bones turn
into something beautiful’. Evie was just
skin and bone, but she was so beautiful
to us. And that ’s when it hit me. As they
sang, massive balls fell from the roof.
Sam and I looked at each other and burst
into tears. We played that song at Evie’s
funeral. Of course it was tough. Real love
is tough, and you go through fire for it.
But you come out so much stronger.”
— N Z ME-New Zealand Herald
The challenge of special needs children
PICTURE: New Zealand Herald
Jordan and Mel Turner with four-month-old Liam. Jordan believes his son will never be a sports star, but he will lead a pretty
‘Lucky’ to experience parenthood
Family is important to Ashleigh and
Peter Brown, so naturally they were
excited to be expecting their first child.
After an emergency Caesarean, the
Alexandra couple welcomed baby Riley on
February 1 at Dunedin Hospital. He was
having trouble breathing and was admitted
to the neonatal intensive care unit. Ten
hours after he was born, he started to have
That was the start of an episode in
the Browns’ lives which can only end in
Six weeks and masses of medical tests
later, their son was finally diagnosed
with Zellweger syndrome. The genetic
condition is so rare, it affects only one in
every 50,000 or 100,00 babies. There is
no treatment or cure and babies with the
condition rarely sur vive the first year.
“There’s four different parts of the
Zellweger spectrum and it depends on
the severity, how long you get with them.
We’re told by the paediatrician Riley has
the most serious, so it could be any day, “
Mrs Brown said last week.
“It doesn’t seem real. We get this perfect
wee baby, and then he gets taken away
The family has been back at home in
Alexandra for about a month and the
Browns are making most of their precious
time with their son and focusing on the
positives of their situation.
Support from family, friends and even
strangers has been “over whelming”, Mr
Brown (known as Brownie) said.
“ We’re so grateful to everyone for all
their kindness. I never imagined we’d
have to go through something like this
but seeing all the people who cared
so much — the support we’ve had is
“ We’ve had people come and mow our
lawns, deliver firewood and meals to us
and people have donated money to the
‘givealittle’ page,” he said.
Ashlee Sutherland, of Becks, is
spearheading the fundraising campaign
and set up the page, so the couple do not
have to worry about work and can spend
as much time as possible with Riley.
Ms Sutherland is a friend of the couple,
and her young son also has seizures.
Fundraising events and donations have
boosted the total to more than $5300 and
more events are planned in the coming
weeks, including a lamb drive.
“People wanted to help Ash and Brownie
somehow and this was one way they
The only medication Riley takes is for
his seizures, which can happen as often
as every 20 minutes. He sometimes stops
breathing during a seizure and the only
time the couple ever see their son cry, is in
the middle of a seizure.
He cannot swallow, so is fed milk
through a nasal tube, but apart from the
tubing, he looks like any other bonny baby.
Mrs Brown glosses over the difficulties
of their situation, the stress, worry and
lack of sleep after taking turns during the
night to watch over their son. Instead, the
couple are focusing on “making memories”
by spending time doing things with Riley,
“That saying: live every day as if it ’s
your last; I’ve always thought that was
something we should do, and now we
realise how short life can be, so we’re
doing that with Riley. We don’t make such
a big drama about things that don’t really
“ We’re lucky to experience parenthood
and we’re lucky to have so much support.”
The couple are planning a naming day
for their son over Anzac weekend as a
celebration of his life and that occasion
will be another memory to treasure, they
They both carry the recessive gene
for the condition and have a one in
four chance of any future child having
During her pregnancy, Mrs Brown was
admitted to hospital several times with
severe morning sickness and was closely
“ Riley ’s condition is not because
of anything that ’s happened during
pregnancy or anything to do with the
labour. He was born with it and he’s the
only one we know of in the country at the
“ It ’s been devastating but we’re so
thankful for all the support we’ve received
“Riley’s taught us so much and we’re
just grateful for every day we have with
A disorder resulting from a defect in
the assembly of a cell structure called the
Th e peroxisome is one of four
compartments within all human cells.
It helps the cell to break down certain
fats, produce hormones and to help the
ner vous system work properly.
Th e peroxisome has to be correctly
assembled to do its job.
Vision, hearing, liver, kidney, cartilage,
heart and muscles can all be affected.
Babies with the syndrome rarely
sur vive the first year.
— Otago Daily Times
PICTURE: Otago Daily Times
Ashleigh and Pete (Brownie) Brown, of
Alexandra, with their 10-week-old baby
son Riley who has Zellweger Syndrome.
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