Cynthia's Blog

Resiliency in Action

March 2013

Resilency in Action

Resiliency is often underestimated in those that are exposed to adverse events or loss. Yet I witness this resiliency every day as I listen to people share with me their stories and experiences of the stressors and the challenges they have in their lives.

After the Christchurch earthquakes I had more than one parent say to me, that as a parent who has had a child die, or as the parent who cares for a child living with a complex health condition; that they stand amongst the rubble of their own earthquakes. They could resonate with the people of Christchurch as they felt their own worlds had been changed forever. Their hopes and dreams had been torn down and the landscape of what they once knew was crushed and shattered.

Xmas Greetings 2012

Kia Ora Koutou,

I know that for many of us we feel the end of the year has sneaked up on us and it is difficult to believe we are signing off with Christmas wishes and that a New Year is just around the corner!

It has been another busy year for True Colours. This year we have had 109 children with serious illnesses re-ferred to the service, and supported them and their families around the impact of these illnesses; this has included many 'out of hours' home visits. In total we are currently supporting 147 families as they face the complexity that illness brings into their lives.

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 others who are on the other side of their neonatal intensive care experiences.

An aspect of the day I enjoy is the way people can come together with the variances of cultural, social, grief, health and disability differences and have fun, enjoy each other and live fully in that moment. I had a small depth of understanding as I met with each family, of the effort it may have cost them to actually leave the house.

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-minded people who are also dedicated and passionate about their work.

The Wisdom of Learning from Others - 26 June 2012

While on leave, I am taking the opportunity to attend the paediatric palliative care conference in Wales. I am looking forward to hearing from the keynote speakers on the topic, 'Science, Meaning and Morality: the Palliative Package. Professor Myra Bluebond-Langner, is one of the keynote speakers and someone I have respected for many years for her research involving children with serious illnesses.

Some of the topics explored at the conference are, 'Spirituality in children - myth or reality'; 'Children and Young People's Voices in Living and Dying - how children express their knowledge of impending death'; and 'Knowledge, Self-determination in Children', just to name a few of the sessions.

Parents the unseen heroes when caring for children with complex health needs:

31 May 2012

I want to acknowledge and applaud Cliff Robinson who has lobbied and advocated for families to be recognised financially as they care for their adult children with complex health and disability needs. In the recent media coverage (Waikato Times May 26) Cliff explained that he wanted the payments for family carers to be his legacy.

Building Resiliency in Children - 29 April 2012

Stephen Parkinson (psychotherapist/music therapist) and I met with a small group of children and their parents this week in a music therapy session.

As I watched the children engaging with the music and one little girl dancing in the session I was in awe of their resiliency. These children live with such compromised health conditions. Their parents are vigilant in their care and protection as they live with the challenge of the many barriers that they have to work with every day.

Holiday a mixed time for families - 31 January 2012

It feels good to return to True Colours after having a break for two weeks and to feel refreshed. Although the weather wasn't favourable to getting outside and doing things, it actually enforced a stop and 'rest time'.