Monthly Archives: September 2023

A walk to remember

On Sunday 10 September, our very special community came together to participate in A Walk to Remember.

This event was centred around community, connection, legacy and paying tribute to the beautiful children and young people who live on in our memories.

We are so grateful to all who attended and contributed to this special event in Malvern and Castlemaine. One mum, Jodie, shared a beautiful reflection of this special day.

*Jodie’s family have beautiful memories of Mylah.*

While we talk about and remember Mylah, every single day, it’s always nice to be asked about her, and speak freely about her, with people who just truly understand, and don’t get uncomfortable with the uncomfortable topic/s, specifically baby and child loss.

That’s why we are always so incredibly grateful for the organisations who take the time to acknowledge our loss and give us the opportunity to include and remember Mylah in celebrations.

Today we attended Very Special Kids event, A Walk To Remember, held at the Buda Historic Home & Garden in Castlemaine. A wonderful opportunity to join fellow bereaved families in remembering and honouring our children who have sadly died too soon.

Constantly aware of creating meaningful memories and connections with our babies (children), today we got to create a beautiful craft piece, complete with a crochet item generously donated.

Flynn and Addi (Mylah’s siblings) had a wonderful time creating such a beautiful memory, which now proudly hangs on our special Mylah’s memory shelf.

How a volunteer made Bibi’s hospital visit fun

Visiting the hospital can be an anxious and stressful experience. If you are a parent of a child or young person with a life-limiting condition, the hospital can also become an unwanted second home.

Five-year-old Bibi and her mum Bronwyn are very familiar with this routine. Every three months, they attend the Neuromuscular Clinic at Royal Children’s Hospital. A visit to the clinic can last four to five hours, in which time Bibi will see up to five specialists in no apparent order or specific time slot.

“It’s very hard to entertain a five-year-old in a small space and help them to be patient under circumstances like this,” shares Bronwyn. “If you leave the waiting room to get food or go to the toilet or just to go for a short walk, you can miss appointments and prolong the day.”

This is where Very Special Kids’ hospital volunteer program can step in. Designated volunteers visit the hospital to provide a helping hand to very special kids and their families.

“It was a huge relief to have a volunteer there to play with Bibi. It helped to change her experience of RCH from a medicalised and negative experience to a fun and positive one!”
Bibi’s mum, Bronwyn

According to her mum, Bibi was enamoured with her ‘special friend’ Danielle. They enjoyed a range of activities together, including art, craft, drawing and reading storybooks, as well as a visit to the outdoor playground.

Not only did this have a tremendous impact on Bibi, but it also helped her mum Bronwyn. Thanks to Danielle’s assistance Bronwyn could see Bibi’s geneticist by herself, she had the time to ask questions and have more of a frank discussion about Bibi’s condition.

Speaking of her own experience, volunteer Danielle shares, “I value the opportunity to bring a small piece of the Very Special Kids team to families at a time when kids are potentially disconnected from all their other networks.”

“I get to not only play and connect with the kids, but also chat with parents, grandparents and carers.”

After spending time with Danielle, Bibi is less hesitant to visit RCH for upcoming appointments. Her mum Bronwyn plans to reach out to Very Special Kids, as soon as she knows her next appointment date so they can have more volunteer support in future.

Very Special Kids have a team of trained volunteers, who are rostered to visit the children in our care during their stay at The Royal Children’s Hospital and Monash Children’s Hospital.

If you are a Very Special Kids family, and would like to have a volunteer visit you or your child during their hospital stay, please express your interest here.

Navigating life after death – one mum’s reflection

Interview by Pauline (Kelly’s family support practitioner)

Kelly is a bereaved parent supported by Very Special Kids. She has worked hard to understand her grief and reach a place of acceptance in her life. After losing a teenage daughter in tragic circumstances, and a baby daughter to illness, Kelly is now embracing a new sense of self. She likes and respects this emerging woman of creativity and self-assuredness, and so do I!

Kelly, what have you learnt about yourself?

On my journey of grief, I have learnt to enjoy life, smile, and completely love again, without fear. It is a place I never thought I would or could reach. To continue living and making memories for others and myself, is a blessing born from tears, fears, and a broken heart.

Who is Kelly now?

I feel proud, strong, and courageous. I enjoy all that life still has for me to experience. I love being with my family, my grandchildren, and my adorable dogs and their pups. But I am also reclaiming my personal time using art, and story through art. This is my peaceful and healing space. Reflecting on my grief has helped me to rediscover who I am and re-connected me to my cultural family roots.

Is there a flipside to pain and vulnerability?

I have experienced unexpected moments of self-pride as well as many tearful moments of doubt. I have allowed myself to feel what has been true to me. The pain and sadness, self-discovery and re-growth, have all been a difficult part of my grieving journey. I have lost two daughters and have finally learnt to give myself permission to do what is right for me. I will forever remember my angel children as a part of my living existence. I accept this life with love, and a right to feel sadness, whilst also smiling and experiencing joy. I can do both at the same time.

What do you want other bereaved parents to know?

I remind myself, and my family that we all deserve to be happy. We deserve to have loving and supportive networks. And we deserve to feel safe to express our feelings. I allowed myself to feel the deepest of pain and now allow myself to feel the deepest of love and complete happiness. We all deserve true happiness and to live for ourselves, without fear of rediscovering or reinventing who we are.

Very Special Kids provides holistic palliative care for families at all stages of their journey – through life, death and bereavement. Counselling is an opportunity to express your feelings, thoughts, hopes and fears in a safe, non-judgmental environment. Learn more about the counselling services we provide to Very Special Kids’ families here.