Robert Jordan in The Fires of Heaven paints a wonderful picture of resilience – “The oak fought the wind and was broken, the willow bent when it must and survived.” This picture suggests a dynamic relationship of reciprocity between resilience and flexibility. The ability to bend and flex when engulfed by a storm, could mean the difference between endurance and destruction.
While there is an unspoken expectation for a building to be able to weather an onslaught of nature that is unexpected, fierce and sometimes cruel, what happens when we as humans are faced with a destructive force of nature that is beyond our control?
Whether a building or human being is confronted by catastrophe, there is one defining characteristic of resilience that seems to be consistent – resilience is evident when we are confronted with significant trauma and stress. Resilience is hard to assess when things are going well. It’s easier to measure it when we experience things we wish hadn’t happened. Resilience determines how quickly we get back to our “steady state” after the air has been knocked out of us, when we must push through life circumstances that challenge our very being. (Buckwalter, 2011).
But how does a parent find their ‘steady state’ after being told their child will die from an incurable disease? How does a mother push through the challenge of wondering which breath will be her child’s last? How does a family ‘bend without breaking’ when both parents provide 24 hour care for their dying child while still working and looking after the other siblings? These are the challenges faced by approximately 3700 Queensland children and their families affected by life limiting conditions.
Queensland Kids is an incorporated charity founded to support these children and their families. Our vision is to build ‘Hummingbird House’, the only specialised respite and hospice facility in Queensland for families impacted by a child’s life limiting illness. The establishment of Hummingbird House will provide a home away from home option where families can access respite and end of life care when home or hospital care can no longer meet their needs.
Take a moment to imagine the unthinkable… your child is dying. As a parent, your instinctive reaction is to fight for your child’s survival; to resist destruction and defend this precious life until the very end. But when medical science and a devastating diagnosis confirm that defeat is inevitable, your next best hope is to maintain your child’s life for as long as possible… to squeeze every ounce of living from every moment available to you. For the children and their families faced with this tragic reality, they must find a balance between resistance and resilience; the fine line between the bending and the breaking; the hope that human resilience will provide them with moments of joy and profound connection in the midst of their natural resistance as they fight a losing battle.
Fostering resilience
When a family is grounded in the stark reality of a life limiting diagnosis, their daily life revolves around countless therapies, medications, surgical interventions, hospital visits, social and emotional isolation and the ever present grieving for what should or could have been. Yet they must still find ways to live ‘well’ within the confines of the diagnosis. This is when a place like Hummingbird House will help foster their resilience and help them find their ‘steady state’. Within a respite and hospice facility like Hummingbird House, the sick child is cared for by trained medical staff while their parents and siblings are given the opportunity to have a much needed break. The family will have the time and space to rest, and reconnect with each other and do things they could not normally do due to the care restrictions of the dying child.
Hummingbird House will become a place of connection and understanding. Families will find a community that understands the critical care needs of their sick child while also understanding the complex layers of pressures that can engulf a parent, a sibling, a grandparent or close friend affected by the child’s diagnosis. And all the while, Hummingbird House will focus on enhancing the quality of life for the child until the end of their life and provide bereavement support to those affected. The care and connection provided through Hummingbird House will be an active and total approach to care, embracing physical, emotional social and spiritual elements.
Hummingbird House will be home away from home with a resilient form that echoes the resilience it nurtures and finds within its occupants. It will be a dynamic facility that provides a safe place where resistance melds into resilience and creates beauty out of devastation, where ordinary people achieve extraordinary things in the face of immeasurable loss.
Paul and Gabrielle Quilliam are the cofounders of Queensland Kids: a charity with the vision of creating an innovative and sustainable children’s respite and hospice facility addressing a significant gap in Queensland’s paediatric health landscape. By establishing Hummingbird House, Queensland Kids will deliver a supportive home away from home in Queensland for families impacted by a child’s terminal illness. With children’s hospices only operating in Sydney and Melbourne, Paul and Gabrielle have been working with key stakeholders over the last two years to ensure Queensland families are the direct beneficiaries of similar services in Queensland. Hummingbird House will be the third children’s hospice in Australia.
You can watch Two Journey’s, One Need – a short YouTube documentary on the need for Hummingbird House to be established in Queensland.
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