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The power of words balanced with the power of action and timing

Today as I sat beside a ‘mum’ holding her baby in a hospital ward, she thanked me for my support. Surprised, I said I felt I had done so little for her and her baby. As she wiped away her tears, she proceeded to tell me of the day I had walked into her baby’s hospital room.  How I had assessed the situation, and brought in the help required in an acute situation which had had a domino effect in her baby’s care and ultimately her own well being.  Her baby was now recovering and ...

Hadleigh’s Story | Medically Fragile Child

When Hadleigh was born three months early we had no real idea what life was going to be like. Everyone told us stories of their uncle’s next-door neighbour who grew to six foot six and could count and spell by their first birthday.  We expected a couple of months in the NICU, learning to breathe, feeding, growing.  We certainly didnt expect a world of pain, hospitals and a relentless battle to enable our boy to grow and keep him comfortable. From day three, Hadleigh declared himself ...

Dave’s Cycle Tour

2nd March – 13th March 2018 Dave Clay has been enjoying cycling for 25 years. On the 2nd March 2018 he embarks on his most important ride to date, covering nearly 900km through the wider Waikato area, helping to raise money for True Colours. Dave and wife Louise, are the grandparents of Hadleigh Clay, a young boy supported by True Colours, and the ride is their way of giving something back for the support that True Colours has shown their grandson and extended family....

Fundraiser – Karena Swims for True Colours

8th April 2018 Karena is a mum of 3 gorgeous children, 10, 8 & 4. Here is her story : After Mr 4 was born we were introduced to the medical world. Dominic spent over half his first year in and out of hospital. When Dom was 2 years old we moved to Hamilton, and we were told about True Colours Children’s Health Trust, which started a new journey of encouragement and support. True Colours have been there for appointments, given me a shoulder to cry on and supported me in a huge way. Karena has de...

Kerr & Ladbrook True Colours Long Lunch 2017

We had a wonderful day of fine dining, fashion, entertainment and racing as we celebrated Melbourne Cup in style for 2017. We couldn’t put on this event without the amazing support of our community. We are blessed to be surrounded by organisations and individuals who embrace our vision and choose to support this event year after year.  A massive thank you to everyone that contributed to the day, to the sponsors for the event, our auction prizes and mystery envelope prizes.  Also...

Will I survive this?

Will I survive….I am asked this question many times by the parents I support at True Colours.  Parents who have just been told their child has a serious health condition, that will take them on a hugely different life path; parents who are exhausted by the relentless complex care their child requires; or those parents who have had their precious child pass away. Each time I hear this question, I have a visceral body response that causes my breath to catch as I consider the depth of p...

The Foot Family | Walking alongside parents

It’s a simple wish as a parent, to have happy healthy children.  However for some parents this wish sadly doesn’t come true.   For some they will receive the devastating news that their child has a serious health condition.  The world as they once knew it changes forever. Priscilla and Michael, parents of a five year old child began this intense and emotional journey when their daughter Briana was born.  They realised something was not right.  They suddenly foun...

Celebrating 13 years of supporting families in the Waikato

 seems hard to believe that 13 years ago True Colours was being birthed!  As I reflect back on that time, I remember the passion and commitment I had to care for children with serious health issues that at the time did not fit within Hospice criteria. It was a huge move for me to step out from Hospice Waikato.  It had been a significant part of my life and I believed in the Hospice vision and philosophy, and still do.   However, it became very apparent that many families...

Children’s Day 2017

Today is Children’s Day, a date made with the intention to enable us to stop and reflect on what our children mean to us.  A day to celebrate each one of them, whether that is the children we have, those who may no longer be with us, and those children we may have yearned for and yet not been able to have. All children deserve to be celebrated regardless of their situation. Sadly, too often we hear in the media the shocking news of children being hurt or intentionally killed.  We hea...

Letting go of fear

Katie Duncan is an amazing young woman who has worked hard to be at the top of her sporting career in the Football Ferns.  For 10 years she has played for the Ferns and is heading off to play at the Rio Olympics.  Katie knows what it is like to push through personal challenges and to live beyond tragedy; however, getting her head shaved on Wednesday is taking all of her courage.  Katie has realised that while she is used to pushing herself hard, and driven with a passion to do wel...

Connie and Alex | Severe Gastric Reflux

At 37 weeks, Alex arrived happy and healthy at Waikato Hospital.  But just hours after they were transferred to River Ridge East Birth Centre, Alex developed breathing problems and was admitted to Waikato Hospital’s Newborn(neonatal) Intensive Care Unit(NCIU) for two weeks.“In NICU he would feed and had low blood sugar so they gave him formula via a nasogastric tube (NGT),” Connie says.  “I was trying to breastfeed too but he had a bad tongue tie which hadn’t been picked up. ...

Family Fun Day at Lake Karapiro

Thanks to the wonderful team behind JusCoz , the families we support got to experience a great day out at Lake Karapiro on the 27th February 2016. Here’s a little glimpse into our day: I SEE the generous spirit of two men and their extended families as they want nothing more than to make children happy. I SEE the joy on the face of a child. A smile as the spray of the water hits their face. The excited clapping as they fly over a wave. I SEE peoples different types of ‘normal�...

National Children’s Day 2016 – celebrating children

It is National Children’s Day on 6th March, a day to take the time to celebrate our children. Although every day we love them, nurture them and care for them, it is also good to stop and celebrate them! “Children are like buds in a garden and they should be carefully and lovingly nurtured” I am also mindful of those children who are no longer with us, who for some reason, through ill health or an accident are not present with us today. I want to honour them and celebrate their lives also, ...

The Face of Courage

As I look into her six year old eyes, I am struck by the openness and trust that I see.  As she stares back at me she is working hard with her respirations as she fights yet another chest infection.  This is the third one in quick succession and her parents are exhausted.  She is weary as she draws air in with her chest rising and falling rapidly.  The oxygen has eased some of the respiratory distress and all is being done by both health professionals and her family to keep h...

The Shadow Health Care

While writing my PhD, I have immersed myself in the various models of care for children who have serious health conditions. Shuster and colleagues (2011) published an article titled ‘Children with health issues: The Future of Children’. They believe the care that parents provide to their children with serious health conditions, in their homes; can be termed ‘the shadow health care’, without which the formal child health care system would be unable to function. This article depicts what h...

Resiliency in the face of life itself

The year is drawing to a close and there have been significant, profound and challenging times for many. There have been moments of sheer beauty, excruciating pain, the birth of new relationships, and closing of others; and the end of the year is often time for reflection. True Colours has had its own rebirthing of a rebrand this year and we are now known as the True Colours Children’s Health Trust. While the heart of the work remains the same, the logo and butterfly has evolved into the next ...

Resiliency in Evidence

Resiliency in Evidence Yesterday, True Colours held its annual family picnic day for the families that we support; the whole aim being to have some ‘simple’ fun and relaxation… and the sun shone for us this year! There were a number of families who attended, from all walks of life. Some children who are recovering well from their illnesses, others who live courageously with their chronic and life-limiting illnesses, families who are grieving and are walking the bereavement journey and...

The importance of hearing from children, young people and their families

After returning from leave and getting back into my work commitments it is well and truly time to reconnect with my blog! The last time I wrote I was about to attend the Paediatric Palliative Care (PPC) conference in Wales. I found the conference to be inspiring and it refuelled my passion in regards to providing a model of care that supports children and families living with serious illness. It was great to meet the international leaders in PPC. And of course it is always good to meet with like...

New Zealand Loss and Grief Awareness Week

 am writing this to you in Grief Awareness Week. Grief affects us all in life in many different ways. However, the families that are supported by True Colours Children’s Health Trust know and understand the harsh reality of what it is like to live with this journey of grief.  I want to pay tribute to you at this time of national grief awareness.  From the time of a diagnosis or when news was told to you that things were not going to be as you imagined, there is a grief process t...

Family Fun Day with Northern Districts Cricket

A day of fun, relaxation and a bit of friendly competition was had on Sunday 22 March at Seddon Park when families of True Colours Children’s Health Trust met members from the SKYCITY Northern Knights and Northern Spirit cricket teams. Balls were hit, bats were swung and games were played on a Family Fun Day in glorious sunshine. Peter Roach, CEO, Northern District Cricket Association, said ‘hosting our True Colours’ families at Seddon Park meant we could truly open up our ‘home’ and w...

Parenting a child with a health condition

Today, the 1st of March is a day to celebrate our children nationally. There are so many things to celebrate as we reflect on our children and grandchildren and what they bring into our lives.  For most of us, there is nothing more special than when a baby has been born and as we watch them grow and develop in their lives. Becoming a parent brings a number of different adjustments to the world as we saw it. It is a time of mixed emotions and a challenge as our lives change and we adjus...

Christmas Greetings to you all

It has been some time since I have taken the time to write a blog.  I am again surprised that the end of the year has ‘snuck up’ on us again so quickly.  As I reflect on the year, it has been a busy one.  With 152 new families referred to the service this year, it has been a busy time. It was great to welcome Mary Orpin to the team early in the year to pick up some of my client work, enabling me time to grow the organisation, but of course continuing to support families as wel...

Waikato Businesses Sweat It Out To Raise Money For True Colours Children’s Health Trust

LesMillsChequeWaikato businesses have been put through their paces in a gruelling military-style bootcamp to raise money for True Colours. Eight teams took part in the month-long bootcamp, organised by Les Mills, to help fundraise for the charity, which provides a free integrated model of care to children and their families living with a serious or life-threatening illness. The teams of five from BNZ, Hamilton City Council, Heathcotes, Les Mills (three teams) and Tainui (two teams) raised over $...

Aligning Business With Charity

2014 is a year of celebration for True Colours Children’s Health Trust as the charity marks 10 years in operation. Its role is a crucial one yet its only source of funding is financial support from the community. Why is it important for businesses to support such organisations? On the evening of Wednesday 9 July, True Colours Children’s Health Trust celebrated their 10th anniversary in the beautiful surroundings of Ingham Prestige’s showrooms. This was a night to honour and thank those in ...

Reflections on the tenth anniversary of True Colours

As I reflect on the last 10 years there are so many memories that come flooding into my mind. These reflections are of gorgeous, amazing children who prove time and again the resilience and courage it takes to live life to the full, regardless of the challenges of health and disability conditions. Some of those lives have been too short… and their touch on our lives has left imprints on our souls and minds. They will be remembered always. My thoughts turn to the families who love and care...