A walk to remember
September 27, 2023
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.
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
September 26, 2023
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.
Luca’s story
September 15, 2023
Eight-year-old Luca is known by many nicknames. From cuddly koala to cookie monster, his cheeky personality always shines through! You might not know from his charming grin, but Luca has experienced countless hurdles in his short life.
At only three weeks old Luca turned blue. By the time he reached emergency he was limp and unresponsive and was rushed to the resuscitation area by a team of doctors.
Luca’s parents, Nadja and Marc, spent the next five nights with their little boy in the newborn intensive care unit.
“We hoped it was just a one-off thing,” shares Nadja. “But along the way, everything that would be a little problem on a normal kid, would just end up being huge for Luca.”
By Christmas time, Luca was regressing even further. He experienced non-stop seizures, couldn’t cry or laugh and slept 17+ hours a day. Doctors told his family to prepare for the worst.
“Every morning, I’d go to his room and check if he was still alive. There were a lot of tears at that time, and so much was unknown,” shares Nadja.
Marc continues, “No one could give us any kind of timeline. We started speaking to palliative care and preparing for all the kinds of things you would normally do towards the end of someone’s life.”
This is when Marc and Nadja first learnt about Very Special Kids House, a place that could provide Luca and his family a much-needed break
Recalling their initial hesitation Nadja shares, “When it’s your child, you want to be very careful who you’re trusting them to, especially when they have a disability.
Once we knew it was a safe place for Luca, Very Special Kids was amazing. You just feel such a big weight off your shoulders… like you can breathe easier.
On an average hospice stay, Luca will spend quality time with highly trained nurses and therapists.
His favourite activities include zipping around in his wheelchair, crawling through the multi-sensory room and splashing in the bath.
Another firm favourite is art therapy. Nadja laughs,
“He’s not afraid to get his hands dirty! He likes the colours, texture and it seems to make him happy. It’s also so special to see his artwork when we pick him up.”
It also offers Nadja, Marc and Luca’s big sister Lilijana an opportunity for some much-needed respite.
“When I pick up Luca from Very Special Kids, I know he’s had a great time and I just give him so much extra love because I’ve had that time to breathe.”
“It also gives Lili that one-on-one time with us, without us having to worry Luca is okay.”
To this day, Luca hasn’t been given an official diagnosis. While his condition is stable, every day can be unknown for his family.
Very Special Kids has stood by the side of countless children and families as they navigate life and death with childhood life-limiting illness. Thanks to the support of our generous community, children like Luca can experience the best quality of life – no matter how long or short their life may be.
Speaking to their own experience, Marc shares, “We feel better about using the services if we know we’ve helped them survive. It’s nice to be able to give back.”
Nadja adds, “The best way to support families like ours is to support those who support us. We are very lucky to have Luca, and we’re very lucky to have Very Special Kids in our life.”
Navigating life after death – one mum’s reflection
September 8, 2023
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.
A very special family open day
August 29, 2023
Written by volunteer, Georgie Johnstone
Sunday 6 August. For many Melburnians, another cold, dreary morning, but for Very Special Kids families, staff and a few lucky volunteers, it was a very special occasion indeed – the first chance for families to experience the new Very Special Kids House.
As families entered, any initial apprehension quickly turned to amazement and appreciation for the hard work over the last few years, spearheaded by Sister Margaret and CEO Michael Wasley.
Guiding families around was such an honour. Faces old and new took in the new fish tank, the dedicated adolescent room and the 360-degree outdoor area festooned with colourful birds. The new soft play area, music/art space and ever popular, upgraded sensory room got an absolute workout.
Accommodation was explored, from the abundance of storage space, the thoughtful concealment of medical equipment, alongside hoist tracks ensuring access throughout.
One child wouldn’t leave until they’d thoroughly checked out every room before picking the “best” one for their future stay! The highlight for many was the balmy hydrotherapy pool, with physio Belinda welcoming in families who queued up like entering an exclusive club!
But more than the state-of-the-art facilities, it was the vibrancy and warmth bought to Very Special Kids House by those present. It was Kirsty, the Hospice Manager and her wonderful team creating the space and time to connect with families, answer as many questions as they needed, and the disbelief in parents’ eyes when they heard “Yes, this is free”.
It was family members who reminisced on times both happy and sad spent at the old hospice, and the bittersweet emotions for those who didn’t have the opportunity to. But most of all it was the energy of the kids, doing laps around Sister Margaret in their wheelchairs, pounding the drumskins without a care in the world, full of joy, smiles and laughter.
As families, staff and volunteers make the jump into full operations over the next few weeks, it is this energy and compassion we all bring which will make Very Special Kids House, truly a home away from home.
Leave a gift to Very Special Kids
August 25, 2023
For over 33 years, Very Special Kids has been providing holistic palliative care for children and young people, and tailored support for their families. This includes respite in Victoria’s only children’s hospice, trained volunteer support in the home and hospital, bereavement support, and sibling programs for families at the most difficult of times.
This work is made possible through generous gifts in Will. Every gift, no matter what the size, makes an incredible difference.
It is a thoughtful way to continue your legacy and make a difference for children and young people with life-limiting conditions for generations to come.
How to write a Will online
- Fill out online: Follow step-by-step guide to write your will in under 20 minutes with either of our online Will partners: Gathered Here and Safewill
- Print your Will: Download for free and print a copy
- Sign and witness: Sign and witness to complete your legally valid Will
Unlimited Free Will offer. Access to free and unlimited updates of your Will for life.
50% discount offer. Each Will reviewed by an Australian Solicitor.
Frequently asked questions
Why is it important to have a Will?
Writing a Will today is one of the most important ways you can protect your family, appoint guardians for your children and set out how you want to divide your estate and leave gifts to charities that mean the most to you. Our online Will-writing partners, Gathered Here and Safewill, provide a quick and cost-effective service to allow you to complete your Will online in the comfort of your home, in as little as 20 minutes.
Are online Wills valid and legally binding?
Yes. Provided that you meet the usual requirements for creating a Will (namely, you have testamentary capacity and are of sound mind, are over the age of 18, make the Will voluntarily, and follow the required signing and witnessing formalities), a Will made online will be legally valid and binding. Reference: Gathered Here.
How do I plan my Estate involving children with high care needs?
Ensuring children with special needs are well looked after requires careful planning and the right advice. Raising children is challenging at the best of times, but for parents of children with special needs it can bring additional concerns, such as who will take care of my child after I am gone and how will they cope financially? Click here for a helpful article published by Australian Executor Trustees, with further information to help get started.
Other questions?
For further information, visit Gathered Here or Safewill.
‘Funeral tips for kids’ written by a bereaved sibling
August 7, 2023
Every year, ‘Dying to Know Day’ encourages conversation and community actions around death, dying and bereavement.
Talking about death and dying can be tough. But keeping communication channels open can often help things seem less scary.
We are honoured to share some thoughtful funeral tips that were written by very special sibling Aria after she attended her brother Valentino’s funeral.
She specifically wanted to share these tips to help other kids know what to expect when attending the funeral of their brother or sister.
Aria is now nine years old and is a proud member of Very Special Kids’ first Child Advisory Group – a youth led initiative that provides siblings aged between eight and 13 years old a chance to share their thoughts and ideas with Very Special Kids.
Funeral tips for kids, written by Aria
I am seven years old and when I was six, I went to my brother’s funeral. I had never been to a funeral before. I thought I knew what to expect but there were lots of things I did not know about funerals. I want to help other kids prepare for a funeral.
Here are some things I would like to tell you about going to a funeral for your brother or sister:
- You might cry or you might not cry, but expect to see other people crying
- You might see a lot of photos of your person, and these might make you cry
- You might have to listen to lots of different people talking
- You might see a coffin. You might see the coffin be carried or rolled on a special trolley. You might see the coffin being put into the back of a special car for coffins
- After a funeral, you might meet together with family and friends and have something to eat, and you can play with your family and friends
- You might feel many things at the funeral – sad, upset, angry, curious, interested, unsure, happy and many, many more
Things I would like to tell their grownups:
- Please tell kids before they go to a funeral all the things they might see and hear and do and expect
- Please tell kids about how their person died
- Please know that sometimes siblings think it is their fault their person has died
- Please think about the kids at funerals and make the funeral of their person ‘kid friendly’
- Please ask kids if they want to help with funeral preparations – we have lots of ideas and like to be involved
- Please show kids the slide show of photos of their brother or sister before the funeral so they know what to expect
As a children’s palliative care organisation, Very Special Kids works to make the world a better, more supportive and knowledgeable place for families who are suffering through the death of a child or young person.
To learn more about our bereavement support services please click here.
