Two Perspectives on the Volunteer Sibling Program

When a child has a life-limiting condition, we often forget about the stress this can place on the whole family, specifically siblings.  

One volunteer and one parent share their insights on the Sibling Support Program, and what they have learnt in the process. Bernadette didn’t know what to expect when she decided to enlist the help of Very Special Kids volunteer, Susie in 2019. Here are their stories and reflection on the program. 

A parent’s perspective 

Written by Bernadette 

When Very Special Kids first suggested a friend for my second daughter, I was hesitant at first because I thought to myself, my terminally-ill child is the one that needs help and support. But I just didn’t realise how challenging it was for my children to see their older sister getting so much ‘attention’ from doctors, therapists, and volunteers.  

 I realised after Susie joined our life that my second child was yearning to be treated equally to her big sister, and Susie was the person that made her feel so very special. Jessie looks forward to Susie coming every week. Even though Susie is a neurophysio she is very focused with her attention when she visits to be on Jessie.  

Jessie is beaming after every visit. I really could not have been more grateful to see my middle child (who is often forgotten amongst the medical appointments and emergencies) sparkle after getting such special one-on-one attention from someone who comes just to visit her. Thank you so much for introducing Susie to our family. 

Being a volunteer 

Written by fellow volunteer Louise who interviewed Susie 

“Someone just there for her.” Mum’s statement ended the doubts Susie had and most family volunteers have about whether they are doing enough. Were the visits fun for the sibling?  Answer yes. It made the sibling feel special and important. Her sister had many appointments, her sibling had Susie – coming just to see her.  

As a family volunteer, Susie had expected to utilise her background as a physio. Wrong. The critical skills turned out to be listening, chatting, navigating the slippery slide and swings at the local park, and reading her young friend’s choice of book. The story of the wolf who had a duck and rabbit in its stomach who liked to dance and partake in candlelight dinners was on repeat loan from the library. 

The greatest challenge and most nerve-wracking moment came with the discovery on the way home from the park one day that Dolly had lost her green shorts. As all parents and carers know, this is a crisis. A happy ending seemed unlikely. There was quite a bit of real estate to be forensically examined. Reassurances from Susie that it would all be okay didn’t change the distress on the young face looking back at her. Susie tried a different tack. “No one would steal Dolly’s green shorts” This turned out to be prophetic. The pants were found, crisis averted. 

Susie adds, “The most rewarding aspect of volunteering with Bernadette’s family is the laughter we all enjoy when we are playing, chasing statues and being silly when we all read stories together piled on the couch. I leave with a smile on my face and from what Bernadette tells me, Jessie is smiling too!” 

COVID-19 stopped the visits until life moved to Zoom. Who knew you could have so much fun playing hide and seek on Zoom. The gap in visits hadn’t dulled the ready laughter or love of a chat.