Monthly Archives: September 2019

A Mother’s Reflection

Reflection by Natasha Mills – bereaved mother of Leroy

I was very skeptical about attending the Bereaved Parents’ Weekend when I first heard about it. My initial reaction was “no way, that’s not for me”. A year or more later the opportunity popped up again and my husband and I found out a bit more about the weekend and decided to go.

I am so glad we went. Attending the Bereaved Parents’ Weekend has been one of the most powerful, healing and nurturing things I have done since our beloved son Leroy died in 2012. The space Very Special Kids create for parents is incredibly safe and supportive. It’s hard to put into words, the love, respect and support, that parents give to one another during the weekend.

Some parents talk and share a lot, some parents talk very little, but there is never any pressure to talk. Everyone is respected, listened to and honoured. Meeting and getting to know other bereaved parents (and their children) is very humbling and a deeply moving experience. Grief can be a lonely isolating road to navigate and both my husband and I really appreciated being in this space with other people who just ‘get it’.

One of the things I really love about the weekend, is that we have time – our conversations are not rushed. During the weekend we have time to talk about our children, to acknowledge our feelings, to let deep emotions, thoughts and memories rise to the surface, in a totally safe and supported environment. There are no interruptions or jobs to do, no tasks or responsibilities of everyday life to distract us.

There is also time for reflection, healing and fun. I really enjoy the workshops and art therapy offered during the weekends, as well as the massage and yoga session. There are lots of opportunities for casual conversations over meals, as well as free time to spend walking, on your own, or with others. VSK seem to always create a perfect mix of structured and casual activities during the weekend.

I have been to several weekends with my husband and on my own and I have found each weekend to be very healing, nourishing and rejuvenating experience, where I feel totally nurtured and taken care of. I cannot thank VSK and its staff and volunteers enough, for the absolute gift of the Bereaved Parents’ Weekend.

Pictured are parents who attended the Bereaved Parents’ Weekend, with photos and mementos of their children.

Mittagundi Adolescent Camp

An adolescent sibling supported by Very Special Kids reflects on their unique experience at Mittagundi.

For one amazing week, sixteen adolescents got to experience the Mittagundi Winter Program. The journey started with a six hour bus ride up to Mittagundi, which took us through rolling hills, rural farmland and mountainous outback Australia. After arriving at the farm we met the lovely Mittagundi staff and were given a tour of the four hundred acre site.

For the next three days, we were given opportunities to get an authentic taste of farm life. We took part in farm work such as bushwhacking, woodchopping, tending to the livestock, milking the cows and I can’t forget putting on an apron and cooking up delicious farm tucker for everyone to enjoy! There is satisfaction felt when completing farm tasks – a sense of self-accomplishment and connection to nature, not always able to be felt in the everyday suburban world.

On the third afternoon of camp, we packed our bags with our snow and ski gear, and the next morning departed Mittagundi for the six kilometre trek to the campsite. The time spent in the snow was truly magical; the sight of the immense star filled sky was breathtaking. The warmth brought by much needed hot cocoa and the conversations and laughter shared with new and old friends, made the cold bite appear to disappear.

The  next day, we were given the opportunity to ski in gorgeous snow laden hills. This was most definitely an experience I won’t forget any time soon. After a much talked about snowball fight, hot dinner and a good night’s rest, we were ready for the next morning’s journey back to the farm, where our anticipated and oh so delicious roast dinner awaited us.

The coming together of the VSK and Mittagundi communities created a safe and supportive environment, where we were able to push our personal limits for both physical and mental growth. For me the most memorable part of the camp, was the roaring campfire over which we shared the tradition of trading spooky and scary stories.

On the final day of camp, we said our thank yous and last goodbyes to the brilliant Mittagundi staff, and left with treasured memories, newly learnt skills, newly made friendships, and as new members of the Mittagundi family. For this happy camper, Mittagundi was a refreshing interval from the everyday demands of the world. Thank you to VSK and the Mittagundi staff for making this such an amazing experience.

Life moments with Nick

Our very own Child Life Therapist, Shari Manley, creates moments that can make a day special.

Nick is well known for his wide smile and positive energy. He enjoys movement and music and brings joy to the Hospice when he is free to explore items and instruments that make sound. He has a natural rhythm and is often observed swaying from side to side, his arms moving to an internal beat, his head and shoulders finding a tempo that reflects his mood. Nick is a canvas of energy and emotion, his impact on the hospice and the people in it is profound.

On this day, I introduced some World Music and African drumming songs to the group, I was inspired by another young man who loves to bang and tap, often objects in his environment, today it was the large drums I had borrowed from Pip, the Music Therapist. The music was fast paced, the beat steady and both boys seemed to enjoy listening to the sounds. I observed closely to detect signs of distress or distaste, there weren’t any and so we continued. The music changed to a salsa, it wasn’t loud but atmospherically drifted into the space. Without hesitation I started to move my feet (I love salsa dancing!) and they boys started to move their bodies. Lauren, the volunteer working alongside me, also started to move, she grabbed a drum and kept the beat.

Soon enough we were joined by Isabel, a carer at the hospice, who’s background is Columbian, she started to move and talk about the importance of salsa dancing in her culture. I watched Nick’s smile grow wider and wider, his signature sway making bigger and bigger circles. I offered him a maraca and the orchestra grew. In the next moment, Belinda our physiotherapist joined us. She did not hesitate to move towards Nick and ask if he wanted to stand. Nick’s expressive body indicated that he did. With care and strength Belinda raised Nick from his chair. He was standing. Nick’s smile grew even wider, his arms and upper body continued to sway and soon we were all dancing.

The room was full of joy in that moment, it lasted but a few minutes but the effects lingered throughout the day as we discovered the possibilities of working together from shared interests and collaborative goals.

Meet our Family Support Practitioners: Angela Flood

Tell us about what you do at VSK

Family Support Practitioner – providing emotional support, counselling and advocacy to Very Special Kids families in many different ways

What’s unique about your role?

As an FSP, I am privileged to be able to work with families from the point of diagnosis through to ongoing bereavement support – the longevity of the role means we sometimes have relationships with families that continue for years and years – the length and breadth of the role from counselling to advocacy to practical support and group programs, we get to dabble in everything

What do you love about your role?

I love the diversity of the role and that every day is different and that after nearly 14 years I still learn something new every day. I love the perspective I gain from connecting with families who are coping with some of the most challenging circumstances possible.

What does a usual day look like?

There is no real typical day as each day is different. Most days I will spend some time on the road visiting a family (sometimes more than one family) for emotional support or counselling, spend several hours on the phone to other families, perhaps attend a professionals case meeting, write a support letter or two, and work on allocated programs or community education projects.

What’s something that other health professionals might not know about your role?

We are sometimes a jack of all trades – some families really need and want formal counselling whilst others really want you to connect with them in a more casual way and help them negotiate a very confusing and overwhelming service system. I am a big believer in responding individually to what each family may need rather than a one size fits all approach.

What is it that gets you out of bed every morning to come to work?

The families – and the hope that maybe somehow I can make even the smallest of differences by just being there for families when they are struggling or in need of a listening ear.

What’s been a highlight during your time at VSK?

After 13 years there are probably too many highlights to mention, but barely a day goes by that I don’t learn something new or am inspired by a Very Special Kids family. Watching the connection created between bereaved siblings when they were given the opportunity to participate in a therapeutic group was inspiring. Bearing witness to the hope that families find amongst life’s most challenging experiences never grows old and is always a highlight.

What’s your top tip to those who have had a tough time or day?

In general to those not living the life of a Very Special Kids family, my advice is ‘life can sometimes be tough, but maintain perspective, things could be a lot worse, and tomorrow is a new day’

To the Very Special Kids families I support my top tip is, ‘one minute, one hour, one day at a time and be kind to yourself’

Tell us a bit about yourself

I was born in Geelong, but spent my younger years in small towns such as Rokewood, Beeac and Colac, before completing my schooling in Ballarat. I have two beautiful girls and a very supportive husband. In my spare time I love to read and I really enjoy taking photos. My first job was as a Coles check out operator and as a youngster I did quite well as a long distance runner.

Melbourne Cup Carnival Pin & Win ambassador line-up announced to help Very Special Kids

(Pictured is seven-year-old Very Special Kid, Ace, who helped us launch our Pin & Win campaign)

Australian actress and director Rachel Griffiths will join a stellar Pin & Win ambassador line-up, it’s been announced today.

Griffiths joins former Miss Universe Australia Olivia Molly Rogers, TV personality Tim Robards, model Kirsten Stanley, Network 10’s Caty Price and Roz Kelly, designer Lisa Leverington, celebrity stylist Suzy Eskander, TV personality Lorinska Merrington, fashion blogger Jess Dempsey, AFL legend Chris Judd and TV chef and presenter Shane Delia as Pin & Win ambassadors for Very Special Kids.

Very Special Kids is Victoria Racing Club’s (VRC) 2019 Pin & Win charity partner, marking the first time the two have partnered.

Very Special Kids provides vital services for children with life-limiting illnesses and is set to rebuild its children’s hospice next year. All proceeds raised from the sale of Lexus Melbourne Cup souvenir pins will go towards vital services for the 900 Victorian families it supports and a much-needed rebuild of its children’s hospice in Malvern.

Very Special Kid’s Chief Executive Officer Michael Wasley said he was excited to have the support of some of Australia’s well-known faces and is looking forward to raising as much money as possible for Very Special Kids.

“We are an almost 80 per cent self-funded charity so to be able to partner with Victoria Racing Club at a time when donations are especially vital is just incredible. We are equally thrilled to also now have the support of a wonderful group of ambassadors,” he said.

Chris Judd said, “I was keen to support Very Special Kids and the Pin & Win campaign because of the incredible work they do in supporting children and their families during times when their children are facing serious ill health. I’m incredibly lucky to have four kids, I can only imagine just how terrifying and sad it would be to find yourself in a situation where your child has such concerns surrounding their health. Any person that takes a minute to analyse the work Very Special Kids do, would find it easy to understand why the work they do is so important.”

Pin & Win is the VRC’s flagship annual charity fundraiser and since 1995 has given charities the platform to raise more than $5.7 million through the sale of Lexus Melbourne Cup souvenir pins, helping to change lives and support the community.

Very Special Kids is the 15th charity partner of the VRC.

VRC Chief Executive Officer Neil Wilson said the Club was delighted to work alongside Very Special Kids, and the newly announced ambassadors.

“The VRC is proud to partner with Very Special Kids, and support their important work caring for children with life-limiting conditions and their families. It’s wonderful that so many prominent faces are backing the initiative, and we look forward to working with them throughout the Pin & Win campaign. I encourage everyone who enjoys the Melbourne Cup Carnival to purchase a pin to support Very Special Kids.”

Pins are available at Flemington race days, and from the VRC and Very Special Kids‘ websites.