Monthly Archives: July 2019

Looking out the window – an insight into being a bereaved sibling

By ‘The Classified Group’ – Brooklyn, Mackenzie, Aubrey, Ruby, Henry, Daniel and Chloe

What we’d like you to know:

Being a bereaved sibling is hard, devastating and it can feel really unfair.
It can make you feel really different to those around you and others think that it is weird. You do wonder sometimes ‘why did it happen to me’ and it can make you feel sad and lonely.
When my sibling was sick there was a lot of confusion and sometimes I did not know what was happening.
Sometimes people or friends even think we use it to gain attention, this is really offensive.
Sometimes people think that you are weak because it is hard, but they don’t realise how strong we are.
It feels good to not be the only one and having a sibling die is different to the death of someone else. For example a grandparent dying is sad, but you don’t spend so much time with them and you also have several grandparents. A sibling dying is less common and this leads to feeling lonely, as others don’t understand.
On the positive side, being a bereaved sibling makes you better at understanding and caring for others. It makes you grow up a little faster and become more mature and make great older siblings.
It can be hard to explain feelings to an adult, because they don’t understand.
Sometimes we don’t talk to parents, because we feel a need to protect them.

What bereaved siblings need from other kids and adults:

Information. We need to know what has happened and/or what is happening.
We need other people to know what has happened in our world. For example teachers knowing we are a bereaved sibling and because sometimes we may need some support.
Sometimes we need a hug.
Sometimes we need some space to talk with a parent, friend or teacher.
We need some alone time. Or if we feel overwhelmed we need some time out.
Sometimes we need our pet for comfort.
Access to counselling at school or the ‘calm bay’ – calming toys to access if feeling sad at school – is really helpful. It is good to be able to leave the room if we are feeling sad at school. Changes at school can be very stressful for bereaved kids – including substitute teachers who don’t know our story.
Being able to draw or just play with toys can be helpful too.
We need support and respect.

VSK has helped by having sibling days. These allow us opportunities to connect with other kids who understand.

Daniel’s Story

Being a bereaved sibling…

Being a twin, it is heartbreaking to have your twin brother pass away, but you still have to move on with life. It may be hard sometimes but you have to make the most of it – of life, the world, the memories that you have.

I remember…

I remember when me and Peter, we loved these icy poles called Kanga Pops and me and Peter got into the freezer one day and ate the whole 5 packs together! And Mum found us and busted us eating the Kanga Pops! On the bright side we got to eat all the Kanga Pops and not get in trouble. It was FUN!!!

Interesting facts about my twin brother Peter…

Favourite food: macaroni and cheese and pineapple and bacon pizza
Favourite animal: Elephant
Favourite drink: Babychino
Favourite movie: Polar Express, The Pirates, Happy Feet and the Lego Movie
Favourite colour: Blue
Favourite song: Jesus loves me
Favourite cake: chocolate cake
Favourite dessert: rainbow ice-cream
Peter loved balloons and jumping castles

I recommend…

Watching the film ‘Wonder’ because the story shows how to be kind, caring and non-judgemental of others.

What has helped me…

Stress balls
Friends
Family
Watching ‘Heaven is for Real’

I feel that…

I have had to grow up quickly because of my experience.
I find it hard to relate to kids my own age because of my experience and enjoy talking with older kids.

Remembering Crystal

Crystal Lee

(28/7/1999 to 14/1/2019)

This photo below was taken at Crystal’s Year 12 retreat in February of 2018. It depicts Crystal’s gorgeous personality, full of fun and laughter, and also the gorgeous inner child that she was. This photo is my absolute favourite, and I cherish it.

Part of the retreat required the students to write a letter to themselves about what they wanted to achieve during the year. Crystal wrote, “I would love to still be alive to graduate Year 12”.

Well, that she did, and she looked beautiful and she was so proud.

Crystal passed away 8 weeks after graduating.

We all miss her so very much, and we are keeping her memory alive by the foundation Crystal wanted to be her legacy- The Crystal Lee Foundation: caring for young people who are facing the end of their life.

‘If I die, please don’t cry. Look at the sky and say goodbye.’

💜💜💜💜💜💜💜💜💜

Dads go kart adventure

By Simon Djurdjevic

The fathers from twenty six Very Special Kids families took part in the Dad’s Go-Kart Day which was generously funded by Men of Malvern, a charity who support the health and welfare of men. Many of the fathers were new to VSK and most had not met each other previously. After registering and safety briefings they formed three groups that took turns roaring around on the track in the go-karts.

The smiles and laughs of participants as they left the track after racing respectfully were encouraging to see as each group became more familiar with each other. They had time to mingle, open conversations about the racing and inevitably discuss their involvement with Very Special Kids over a shared lunch.

As one father explained “these events have always appealed to myself and people I know as they allow dads to open up a bit to others in a similar situation, something most Dads don’t do very well. It also helps having some competition to get the conversations started too.”

After the racing was done and the top three were applauded off the podium, many of the men stayed around afterwards. Despite the barriers men often face in seeking support it was incredibly heartening to see them building connections and forming a support network with the each other.

“How do you find the time?” – Being a Family Support Volunteer

By Meg Wimmers

“How do you find the time?” This is the first question I get asked each time I tell someone I volunteer for Very Special Kids. Being a mum to two kids under the age of five and working four days a week, I did wonder that myself. But I found that when it came to doing something that I truly cherished, I found the time.

The reason I started volunteering for Very Special Kids could be seen as selfish, in a way. I was looking into a possible career change and my resume really needed a tick in the ‘volunteer experience’ box. I was pointed in the direction of Very Special Kids because of the reputation of their volunteer training program. I walked away from the information evening feeling excited about trying something new. The training sounded intensive but the philosophy and vision of Very Special Kids struck home.

The training program prepares you for the role and all the possible situations you may face. After I completed the program I understood more about my own capabilities and I knew I’d have continual supervision and support in my role. It also taught me some valuable life lessons. One that I value most is the ability to understand the enormity and importance of grief and how it can have such a diverse effect on different people.

I was assigned my family, the Whitnells, and met with Mei, my family support supervisor, who gave me the rundown of my role among them. I was there to support the two older boys, Tye and Axel, whose younger brother, Jett, has a life-threatening condition. The boys are very active, very different to one another and very competitive. I left the meeting feeling nervous and unsure if the boys would benefit from my support.

I remembering knocking on the door for my first solo visit and heard one of the boys yell with excitement “Meg’s here!”. My uncertainty vanished instantly. In my time with the Whitnells we play games, we bake, we draw, we kick the footy and for the whole time I’m there the boys get my undivided attention.

By spending time with the older boys I’m not only giving them some extra attention, I’m also able to give their parents the chance to focus on their own needs. Supporting families like the Whitnells can take so many different forms, and I’m so proud of the small part I can play in easing their unique circumstances.

The Whitnells have a very full schedule running a household with 3 boys. For a few hours on a Sunday, that schedule for Tye and Axel is focused entirely on play. It’s challenging and rewarding, and I can now say I’m a master of gracefully accepting defeat when playing games against 7 and 9 year old boys.

Meet the Whitnells, the face of this year’s Piggy Bank Appeal

At their 13 week scan Kristy and Damian Whitnell discovered their unborn son, Jett, was missing his fibula bone. At 16 weeks, a chromosome test reported that otherwise, Jett was fine. At 32 weeks, the doctors discovered a number of other concerning abnormalities in the pregnancy. At 34 weeks a geneticist said Jett might not make it.

On the 26^th of August 2014 Jett was born at Monash hospital. He didn’t leave the hospital for two months.

Jett, who is now four years old, has a gene mutation known as KCNQ2 which causes a condition known as epileptic encephalopathy. This means that he suffers from severe and frequent seizures, sometimes as many as 20 times in a single day. But this is only one element of Jett’s entire condition, which lacks a coverall diagnosis.

“It’s a constant battle, his seizures are never under control”, says Kristy. “We have appointments all the time at the hospital. Whether it be neurology about his seizures, whether its orthopaedics about his bones, whether it’s the rehab team about his muscles.”

A referral from one of the Whitnell’s many doctor’s appointments at Monash led them to reach out to Very Special Kids.

The family describe their first visit to the hospice as “a bit overwhelming” when it came to the level of care the hospice staff provided. “I was amazed by the level of detail they went to so that they understood Jett and what makes him unique and what he likes to do and how he likes to go to bed at night”.

When Jett visits the hospice he loves to participate in music therapy, banging out a tune on the tambourine or the maracas with assistance from the devoted hospice staff. He’s always keen for a good cuddle and a nice relaxing bath.

The rest of the family rely on Very Special Kids services to get them through as well. Kristy and Damian have spent time in the family accommodation while Jett receives specialised care next door in the hospice. This means the medical staff can focus on Jett’s treatments and the Whitnells can focus on being a family. Jett’s brothers Tye, 9, and Axel, 7, love participating in the sibling program and rave about how much of a ball they have while meeting kids who are experiencing similar challenges.

The family is visited regularly by Meg, one of our family support volunteers. Meg usually spends time racing or drawing with the kids, which takes the pressure off Kristy and Damian and allows them to give Jett the attention he requires.

Jett’s lack of an umbrella diagnosis makes it difficult for his family to anticipate the best option for his treatment.

“We try to weigh things up. Like do we get his hips fixed because they’re dislocated, or do we not do that because the surgery could cause him more pain”, Kristy says. “There is no answer and there is no path to follow in terms of what we need to do. For us it’s all about making Jett as comfortable as possible.”

That’s what Very Special Kids is here to do. To support not only Jett, but the entire Whitnell family through circumstances that would be impossible to get through alone.

We did it!

Together, with our very special supporters, we have raised crucial funds for the 2018/2019 Financial Year to ensure we can continue to provide free of charge respite, family support and end of life care for terminally sick children all across Victoria.

We could not exist without all of these amazing people and we are so grateful for everything that they make possible.

Please watch our very special message to our supporters below, to see the impact their support makes on the lives of children and families in need.