This past Saturday and Sunday Very Special Kids held a Bereaved Sibling Weekend, designed to inspire expression and connection.

The event was held at our base in Malvern, and turned out to be a wonderful weekend, thanks to the dedication of our Family Support Practitioners and volunteers.

On the Saturday, 20 bereaved siblings came together to enjoy a range of activities including an awesome music therapy session with our resident music therapist Michelle which culminated in some lovely heartfelt verses written by the kids, as well as a moving rendition of ‘Count on me’.

After a lovely pizza lunch, the kids enjoyed spending time thinking and talking about their likes and feelings, as well as creating an amazing rainbow and some clouds for our Remembrance Day in October.

On Sunday 10 families returned to enjoy a day of family togetherness by participating in a meaningful family discussion, and an amazing art therapy session where families had the opportunity to create family shields on canvases.

They also had the opportunity for some family photos in the Photo booth, face painting with the amazing Fairy Mary who donated her time and energy, warming sausages donated by Glenferrie Meats and the most wonderful dessert bar organised kindly by the Cake Angels.

Many of the families who attended gave great feedback and explained that they really enjoyed and valued the opportunity to connect with each other in a safe and nurturing space.

Thank you to our Family Support Practitioners Angela and Puchi for ensuring such a great event, and to everyone who attended.

In the Hume region a Postcard Project has been run as a therapeutic activity for bereaved families in their own homes.

Families who have participated in the project have found it to be extremely moving to create postcards containing messages to their very special child. Filled with love and longing, the cards shared emotions through pictures and words, with participants agreeing the process was powerful and helpful.

“The postcard activity was a lovely thing to do with our girls as they love craft and it got them talking about their sister who had died and her favourite things” said a bereaved mother supported by Very Special Kids.

“It also created and built a trusting relationship with both our Family Support Practitioner and family volunteer who helped out on the day. We found talking about our child and sharing memories to be very helpful. It was a lovely family project to do.”

When asked what it was like for the family to sit down and create a message to their child who had died another mother said, “Writing the message was pretty tough in the beginning. For me, I was looking at it as if I had one chance to send him a card, what would I put on it? Would I get it right? With the support of our Family Support Practitioner and given the time we all needed, we could work our way through that and clear our minds to write a beautiful message to our son. It gave us the opportunity to sit as a family and reflect on our son’s life. We cried a little and also smiled”.

You can view completed postcards here.

Although Very Special Kids Hospice is located in Malvern, it is committed to providing family support across Victoria through offices in several regional areas, with Family Support Practitioners.

The Family Support Team work closely with families to understand their needs and offer appropriate support, such as counselling and advocacy.

Last weekend a Ten Pin Bowls Family Day was hosted in the Hume region, thanks to our Family Support Practitioner Jenni Coldwell.

Seven families attended the event in total and all participants reported a great fun day with one mum sending an email the next day with the following:

 “Hi Jenni, I just wanted to thank you very much for organising the day yesterday. Our family had a lovely afternoon and it was great to see some of the other families there too. We really appreciate the time and thought you contribute and the effort of organising these events. As the boys went to bed last night, Harry asked if he could raise some money for Very Special Kids…..so hopefully we’ll come up with some ideas and be able to give back in some way.”

The assistance of link volunteer Kirstin Street, her partner Harley and event volunteer Ian Coldwell ensured the smooth running of the event. Having Kirstin, Harley and Ian there made an enormous difference to families and their hard work on the day contributed to the success of the event.

Thanks to the team at Shepparton Ten Pin Bowls Centre and manager Melissa Thomson for making it all possible.

In addition to supporting families on an individual basis, team members in regional offices coordinate local programs and events like this regularly. This provides families with the opportunity to meet each other, share information and experiences and enjoy some time out together.

To find out more about our regional services click here.

Our Family Support Team is a very important part of what Very Special Kids does and without them there would be a large gap in the services that we offer. Not only are our team specialised in counselling families who have a child with a life threatening illness, but they also support those who are bereaved too. One of our Family Support Practitioners wrote a piece about what it’s like working as a social worker, and provides insight into the amazing role.

“Very Special Kids provides holistic family centred care to more than 900 families across Victoria with ongoing support from diagnosis all the way through to recovery or bereavement. I have been a part of the family support team at Very Special Kids in my capacity as a social worker for almost six years now.  I think of myself as a co-creator, building authentic support relationships with families in an effort to provide choice at all stages of care. Very Special Kids provides a unique level of intervention that values continuity of care and longevity of support. Integral to this process is understanding the family as a system and favouring a flexible model of care rather than adopting a one size fits all approach. 

There is so much I value about working this way. Looking through the lens of a social worker allows me to think systemically, to consider the impact of environmental factors and past losses on families. My role is forever changing and is largely shaped by the alchemy of the people that I support, they are without a doubt my greatest teachers. In this way, what comes to me as seed moves on as blossom. We are bound together by kindness and generosity. For this reason, the family support role at Very Special Kids is hard to define. It means different things to different people and demands different things from me every day as a result.

We live in a culture that has been largely unwilling to accept the fact that sadly children do die and that we have an obligation as a community to adopt a village mindedness when it comes to caring for these children and their families. We must all bear witness and without a doubt providing families with choice at end of life lays at the heart of this commitment. Whether that’s helping families remain at home, in hospital or in the care of our hospice at Very Special Kids, we have an obligation to listen deeply, to educate and to co-create accordingly. 

I have been in the profound with families as they navigate the terrain of death and the oceanic tidal waves of their grief. At Very Special Kids we stay involved indefinitely after the death of a child and this continuum of care offers me privileged insight into the lessons grief teaches us about what it means to be human. It’s my job to lean in and listen. To welcome mystery and to be curious. My experience in paediatric palliative care has left an indelible mark on my soul, the work has polished and weathered me. I have learnt to allow whatever aspect of myself is needed to come forward. To dance with uncertainty means I must continue to cultivate the not knowing mind, offering a loop by which families can come into my calm t’s not so much where I can take the work, but more a question of where the work can take me. Simply put, being with the dying inspires me to live well.”

-Jessica Birnbaum, Very Special Kids