34

IS LIFE really
LIKE A BOX OF
chocolates?
words: angela cushnie images: supplied

“Where ignorance is bliss, ‘tis folly to be wise.”

This simple phrase was originally penned in 1742 by English poet Thomas Gray. In his
moving poem, Ode on a Distant Prospect of Eton College, Gray talks of the paradise of
not knowing suffering, pain, sorrow or grief.Whilst it may sound mystical, the meaning is
anything but - ignorance is bliss because if you don’t know something, it can’t hurt you.

GRIEF COMES IN ALL SHAPES AND SIZES and can
become a focal element in our lives. While it affects everyone
in different ways, one common theme is that many of us are ill-
equipped to cope with this difficult emotion. On the whole we
are not taught how to prepare for grief and therefore struggle to
communicate our feelings to family, friends or even ourselves.
Through my recent training as a Support Parent for an
organisation called Parent to Parent, I have learnt a great deal
about the many faces of grief and the importance of seeking
support and developing resilience.
Whether you have lost a loved one, had your heart broken,
nursed a sick friend or find yourself growing old and grieving
the loss of your youth, the grieving process is complex, stressful
and confusing.
For those who have not experienced a significant loss, this
is where empathy comes in. Even though it’s a natural instinct
 “Challenges must not beat you, instead use them to
make you and those around you stronger!”

for most people, we do need to be cautious when it comes to believed it was a blip on the radar and we would be back home
making a hasty judgement on a situation we are not familiar in Ashburton the following day. Again this was not to be.
with. This example was shared with me recently. “But he died Phil and I welcomed Mitchell into this world at 11.15pm
eight years ago, she will be right again by now surely”. If only it on December 9th. His due date was March 25th the following
was that simple. year but we figured he was keen to get his wish list in to Santa
Empathy is essentially about compassion, understanding and score some presents under the tree, an eagerness that has
and the acceptance of others. We live in a world that is quick to certainly not changed!
judge, categorise or even discriminate when ideally we would The numbers speak for themselves - 24 weeks gestation
be better to foster a culture of understanding through simply or 16 weeks premature and weighing 1lb 10oz (770gms).
asking questions or taking time out to listen. Statistically Mitchell was given a 50% chance of survival and
A little over six years ago I was blissfully unaware that I too even less hope of leading a ‘normal’ life, attending a normal
was guilty of glossing over the feelings of others. This quickly school and getting a normal job. This was big picture stuff and
changed when I discovered what it meant to have my world for us the only thing that mattered was that he was our first
tipped upside down and I began a journey into the unknown. son, perfectly formed, and had a big battle ahead.
Until then my life had been relatively routine and my only Initially Mitchell was fighting fit and showed a resolve that
knowledge of the medical world was an occasional trip to the surprised and impressed us all. We learnt later this is referred
GP and the delivery of my beautiful daughter Lauren 10 years to as the honeymoon period.
ago. It is here I would like to acknowledge the many parents
who were not as fortunate as us. The four months we spent
THE JOURNEY in Christchurch Women’s served as a stark reminder of how
fragile life can be and of the hardship some families endure in
Let me start by saying we have a happy, bright and
the pursuit of becoming parents. Hand on heart I commend
affectionate six year old son called Mitchell. Ours is a blended
their courage!
family with his sisters Lauren (16) and Jess (14) attending
Breaking our news to family and friends was a surreal
Ashburton College. Mitchell attends a close knit country
experience. The standard response was, “are you joking?” Its
school in Mid Canterbury, has a great group of friends and a
ironic how frequently this is our initial reaction to shock and
‘cool’ teacher who pretty much had him sussed from day one.
bad news. Or was it bad news? People were not sure whether
Our journey began on December 7th, 2003 when I went
to congratulate or commiserate and to be honest, neither were
from textbook pregnancy to worried mum, suspecting things
we in those very early stages.
weren’t quite right. This quickly progressed to a precautionary
visit to Christchurch Women’s where things looked destined to
settle down. This was not to be the case.
The following night I went into labour which, to our
relief, was stopped thanks to the help of some hasty medical
intervention. The subsequent 24 hours were a combination of
shock, resting, scans, paediatricians, nurses, and a tour of the
Neonatal Intensive Care Unit (NICU). It was rather alarming
and the first time my husband, Phil, or I had seen an ‘extreme
preterm’ baby. Little did we know NICU would soon become
our second home.
To complement our guided tour we were handed an
information booklet for ‘Parents and Prospective Parents of
Premature Babies Less Than 28 Weeks Gestation’. This listed
some of the likely outcomes for extreme prematurity, graphed
the survival rate from delivery to discharge and gave a frank
insight into the associated problems that might affect our Above: At nine days old Mitchell is having a kangaroo with
baby’s chances of survival. All these daunting facts and figures his mum. In the early days my wedding band slipped freely
meant very little to us and seemed irrelevant as we firmly onto his arm.

A very proud big sister - Lauren aged 10 having her first
cuddle of Mitchell aged 60 days.
On day six Lauren wrote a prayer in Mitchell’s diary...
Prayer for Mitchell
“Dear God, please let Mitchell grow big and
strong, to be healthy and well. Let him be with us
for the rest of our lives. Let us help him with his
problems and he will get through them.”
Amen
SEEKING SUPPORT
Our support network was a key part of coping with day
to day realities. As husband and wife, Phil and I were in the
front seat heading on a journey, which I likened to a detour
on the main highway of life. We were not sure how long that
detour would last and we had absolutely no control over our
destination. I found this difficult as I prided myself on being
organised and structured in my personal and business life.
These days I am inclined to let things evolve naturally and I
now see this as a great asset.
Joining us on our expedition were Mitchell’s sisters,
grandparents, great grandparents, aunties, uncles, friends and
members of the wider Eiffelton community. We were very
aware of how fortunate we were to have such a caring and
generous cross section of people behind us all the way.
Something I have since learnt through my training at
Parent to Parent is that the individuals you may seek support
from, such as close family members, are themselves struggling
and therefore less able to offer the strength and guidance you
seek. For me, the most instrumental support depended on
a persons own experience with a life versus death situation
because rather than showing empathy, they actually ‘got it’.
Phil on the other hand found strength from within and his
ability to remain positive did not waver. He had full faith in
his son!
The comfort of Mitchell’s great grandparents was somewhat
unique - now there is a practical generation. My grandparents
lived in Christchurch at the time and were no-nonsense
and stoic in their approach, exactly what we needed. Phil’s
grandmother waited until Mitchell was out of intensive care
before she popped the mandatory $50 cheque in the post,
stating quite simply, ‘he looks like he is here to stay’. Although
these wonderful folk have all since passed on, they relished
the time they had with Mitchell as they watched him tackle
each new hurdle with gusto. They took great pride in bragging
about their very clever great grandson sharing weights, dates
and photographs.
RESILIENCE
Although figures vary slightly, and as with many things in
the medical world it is difficult to pin down an exact percentage,
it is thought that annually less than 0.5% babies born before
25 weeks gestation survive. This is where a feeling of isolation
crept in and resilience started to build.
We had four months in Christchurch Women’s Hospital
(the old one) and during that time we were introduced to
medical terminology that required six years at medical school
to interpret. As much as we tried to keep on top of things
it mostly went over our heads and we felt that we were the
only family in the world facing such a daunting and unknown
future.
Although the medical help was superb, and Mitchell got the
very best care possible, as parents we were unsure of our role,
striving to remain positive and struggling to eke out some sort
of routine or normality. There was a social worker available,
however if like us, you are not used to reaching out for help,
this simply felt like just another task.
What we did seek comfort in was a journal. We tracked
each precious day, wrote down our thoughts and invited others
to do the same. This quickly turned into a cherished account
of the highs and lows we were all to endure over this time. The
first 38 days were the most stressful and in general, went a little
something like this:
Day one: Shocked and exhausted parents but settled child.
Day two: Pretty much a matter of x-rays, grainy liver, brain
scans, monitors, long lines, oxygen saturation, medications,
transfusions, infection, blood pressure … moment by
moment, one day at a time, and the list goes on!
Day four: Just dawned on me I’ve got a son.
Day seven: “The physical problems I can handle, it is the
constant not knowing that is mental torture.”
Above: The three wise advisors - affectionately named because of their passion, knowledge and commitment. Carol Bartle
is now a world renowned lactation consultant, Marion Cross was a senior NICU nurse and our lifeline in the early days and
Carole Spencer is a one in a million lady, dedicated to her role as a research nurse specialist at Christchurch Women’s and
responsible for cuddles when we were not able to be with Mitchell. Right: 11 Months - to determine Mitchell’s seizure type an
Electroencephalography (EEG) recorded the electrical activity within the brain and tracked the spontaneous electrical activity
over a short period.

Day eight: Mum is feeling a bit fragile so dad has the first
hold (kangaroo). The benefits of skin to skin contact are too
great to quantify.
Day twelve: Developed an infection, back on the ventilator
and having a rough time. So called ‘honeymoon’ period is
officially over.
Day seventeen: Weight now 900gms which is good but talk of
heart surgery, not so good.
Day twenty one: No improvement, in fact taking a few
backward steps. Started on a frightening medication called
Pancuronium which is a paralysing drug administered to
stop Mitchell fighting his ventilator. He looks so vulnerable.
Day twenty three: Mitchell has a battle on his hands. Phil
likens it to the domino effect where one falls and triggers yet
another. The stress levels are through the roof and all we can
do is watch, wait and pray.
Day twenty four: Chronic lung disease. Not sure what that is
but does not sound ideal.
“Bye little Mitch, I am off to Australia for three weeks. I will
miss you. By the way your hair is sticking up,” from your big
sister Lauren.
Day twenty six: A breakthrough finally and encouraging news
thanks to some “aggressive” intervention by his paediatric
consultant.
Day twenty eight: Heart surgery. Went well but in for a rocky
few days recovering. So tiny to have endured so much. Having
0.5ml of milk every two hours.
Day thirty five: Mitchell joined the 1kg club and has increased
to 2ml of milk hourly.
Day thirty eight: Off that scary ventilator. Initially you
spluttered like an old Morris Minor but breathing on your
own! Time to start a new chapter in your book.
Day fifty six: “Yeah. We tried breast feeding for the first time.
The eight weeks of expressing have paid off and although the
suck, swallow, breathe combination is a whole new concept
for you wee man, you are a natural”.
Day one hundred and six (March 24): The day before
Mitchell’s official due date and good news/bad news. We can
take him home but he has to come back for another operation
in four days.
Day one hundred and nine: At home finally. Father and son
on the couch watching the Highlanders play the Crusaders in
the Super 12. Mum’s team won 46-29.”
From the moment we got him home Mitchell didn’t look
back. He put on weight and was a happy, healthy wee boy, which
sadly was not to last. At 11 months an aggressive seizure type
called infantile spasms took hold and we were very reluctantly
thrown back into the hospital environment, concerned for
38
Mitchell’s wellbeing and getting a crash course in neurological
jargon, MRI’s, EEG’s and even more frightening medications.
For me this was a personal low and my biggest hurdle as I
watched my happy smiling infant vanish before my eyes.
When we eventually got the seizures under control they had
left their mark developmentally. We sought the help of expert
therapists at the Champion Centre in Christchurch for over
two years and then opted to work with a team at Ashburton
Hospital’s Children’s Development Services. We are forever
grateful to the fantastic people we came in contact with as they
have played a significant role in shaping Mitchell’s future.
(Actual size) Mitchell Alexander Cushnie,
It was a roller coaster ride with numerous operations, 16.12.03, Age 7 days.
medical interventions and tough decisions to make along the
way. While the list is too great to detail, it is also irrelevant.
who had already endured so much. I guess my advice is to
Over the past six years Mitchell has shaped our family and
acknowledge what you are not familiar with, be slow to judge
taught us a great deal about patience and endurance.
and put yourself in the shoes of others.
As Mitchell thrives in his school environment it is time for
CEREBRAL PALSY me to take a big step back and assess “where to from here?”
The major consequence of Mitchell’s prematurity was a He receives tremendous support from family, friends and the
diagnosis of cerebral palsy (CP) when he was three. This is a wider community and has a fantastic team of medical and
physical impairment that affects the development of movement educational professionals working with him who are equally as
and varies considerably with no two people affected in exactly thrilled with his academic progress and physical determination
the same way. While Mitchell’s disability is considered mild, as we are.
it has required a great deal of intervention and manufactured Our goal of nurturing an independent child who is capable
help to achieve what would usually be considered predictable of making the most of life is well on track and I am now
milestones for a child. The nature of CP means there are no focusing on my training with Parent to Parent. Already I have
black and white answers which is an ongoing frustration for us. learnt a great deal about how I can best help other families as
I am sharing our story in the hope it gives others an insight well as put into perspective what was essentially a rather manic
into the challenges some families endure. It is common for period in our lives.
parents of special needs children to worry their child will not A man I admire recently told me “there is no point querying
be included. A scenario I found hard to comprehend was an whether life has been unjust; you simply have to deal with what
eight year old boy with special needs being the only one out you have. Whether you are regarded as successful or wealthy, at
of the whole class not invited to a birthday party. This was the end of the day what matters most are the happiness, health
such a simple thing yet had a demoralising impact on a family and wellbeing of your children”.

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special needs through support and provision of information.
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