Respite a real relief

Respite a real relief

Rainbow Place is the only child-focused hospice service in New Zealand.

Our priority is to improve the quality of life for children living with a life limiting illness and support their parents, caregivers and whānau as they undertake this journey.

It is a service that provides parents with additional clinical and emotional support by a caring team of professionals dedicated to the needs of their child - whether that be in their home, in hospital, or at Hospice Waikato.

A big part of this service is respite care, which provides families with time off from the taxing healthcare routines, the sleepless nights and the emotional stress associated with caring for a child with a life limiting illness.

Respite provides parents with time to relax and recharge and to do all of the things that seem near impossible when providing around-the-clock care. It gives them the opportunity to catch up on sleep, focus on their other children, and to experience what many of us consider to be normal, every-day events.

However, as appealing as that may sound, the thought of leaving your child, whose complex care regimes are your ultimate priority, can be incredibly difficult to do. This is the case for Hannah, whose son, Talyn, was referred to Rainbow Place to help manage his needs and to offer his family additional support.

Talyn has been diagnosed with KAT6A syndrome, an extremely rare neurodevelopmental disorder, and intestinal dismobility which causes severe pain, nausea and discomfort if not properly managed. This, paired with a vision impairment, requires his parents to be constantly vigilant and to configure their lives around his needs.

“When Talyn first had respite it was a very anxious time for our family. My ‘mummy brain’ was in full force and I couldn’t stop thinking about all the things I would usually be doing for him. Entrusting Talyn’s comprehensive care to someone else wasn’t easy for me,” says Hannah. “I had a lot of reservations at first, but Talyn has since been in for respite six times and now I am able to relax knowing I can leave him where he will be safe and receive excellent care,” she says.

Respite gives family members the opportunity to take time to focus on their own wellbeing while their child is being cared for by nurses, healthcare assistants, play coordinators and volunteers. For Hannah, this time means painting, exercising and giving her two other sons her undivided attention.

“Talyn loves respite because he likes meeting new people - he loves the attention he gets and knowing that everyone is there just for him,” she says.

The Rainbow Place team is dedicated to ensuring that Talyn receives the care he requires to live his best life, and that his family never feel alone on their journey. “Accepting that we are on the paediatric palliative care journey is tough, but the Rainbow Place team have always gone over and above for our family.”

“To have this kind of support is a real blessing,” says Hannah.

- Rachael Bish,
Hospice Waikato

How you can help
Imagine how much it would mean to a family to have just one night where they aren’t having to manage complex healthcare regimes or worry about whether their child is experiencing pain or discomfort. Can you help us provide these families with ‘a night off’ by contributing towards the cost of our respite services? Please donate today.

Pictured: Talyn with Rainbow Place Volunteer Play Coordinator, Angelique.