Monthly Archives: December 2017

Holidays after Hamish

A reflection by Simone and Tony Hayes, parents supported by Very Special Kids.

Our first holiday after Hamish died was over Easter, camping with our extended family. It was hard, really hard, and Hamish’s birthday also fell on that weekend; it added extra pain, but at the same time, we were glad to be away and away from our house. Camping is our ‘safe place’.

We relax the moment we pull into the park, and it was the same that first Easter. We didn’t mind being upset around everyone, because we all felt the same. Knowing that Hamish was missing didn’t stop us from going away and being with family made it okay.

We loved every individual that was away with us and they loved us. It was not uncommon to be greeted every morning with hugs and kisses and offers to take Sam to the park so Tony and I could have some time out.

We made light of our situation too, about how we no longer had to take a cot, second car seat, pram, bucket for a bath, extra bedding, clothes and food etc. We have since had a letter “H” put on the back of our trailer. It’s nice to have “H” with us. Going away that first time allowed us to recharge, to show ourselves that ‘we can do life after death’, and that our family was exactly that…family!

We often go away camping now, and as we drive I always have a few tears in the car, thinking of our Hamish and how strange it is that he isn’t in the car with us. I usually remember and think of him as a 10-month-old little boy, but I also have moments when I think about what he would be doing while we are away; getting into mischief with his big brother Sam, riding his bike and enjoying toasting marshmallows.

Each time we go away I expect the drive to be different, but it never is; there is still that feeling of being only three quarters full, with my little quarter missing from our lives.

Whenever we are away, at every evening meal and drinks around the fire, we always do a “cheers for Hamish”. Sam loves it and it’s nice to look up at the stars every night and think of our little boy.

Camping over the holidays recharges us and makes us re-appreciate life, even our new different life.

A very special wish

Sarah Fish asked her seven-year-old daughter Zoe, “If you could have one wish what would it be?” after a momentary pause she replied,

“My wish is to have Lilly back, so I could tell her I love her.”

Three years ago six-year-old Lilly lost her batter with cancer and Zoe lost her sister and best friend.

Lilly was diagnosed in February 2012 with a stage 1 Wilms Tumour, she was just four-years-old at the time. One day she was happy and healthy and the next she had a cancerous tumour. Her family were in shock and in an instant their whole life changed. After surgery and chemotherapy Lilly was cancer free, but six months later she relapsed and in 2014 surrounded by her family and loved ones she passed away.

Coping with grief is different for everyone, and the need for support varies. In 2013 one of our Family Support Practitioners Mei was matched with the family, to help provide tailored support from Lilly’s diagnosis, through the bereavement support they receive today. The connection between a family and their Very Special Kids Family Support Practitioner is a very special one, often the practitioner is the only constant in a turbulent and ever changing time for the family.

Over the last four years Mei has provided comfort and support for every member of the Fish family, especially Zoe. For many children having a seriously sick sibling can be a time of great confusion, resentfulness and loneliness, but for Zoe more than anything it was a time of immense sadness. Zoe was by Lilly’s side through it all and she was aware of everything going on.

Lilly is remembered by those that knew her as being full of love with an infectious giggle, she was always joking around and Zoe was her favourite person. The two loved to do craft and make art together, especially anything with glitter. It was a special love that they shared and when Lilly died Zoe was left devastated. When Zoe is having a particularly tough time, Mei is always there to help and she uses art therapy to give Zoe the space to express how she is feeling and connect with Lilly.

Zoe says “When we do craft I can tell Mei anything. I especially like talking to Mei about Lilly. She is so nice and always listens.”

Losing a child to a terminal illness, effects the whole family but often it’s siblings that find it the most difficult. The Very Special Kids Sibling Support Program was created to provide unique activities where siblings have the opportunity to meet other siblings in a caring and safe environment. The therapeutic framework allows children to not only explore their emotions, but also enhance self-esteem, encourage peer socialisation and reduce the sense of isolation. Six times a year, the Family Support Team invite siblings to special themed sibling days, filled with fun activities and opportunities to share feelings and connect with others.

Zoe regularly attends these days and she says, “I love the sibling days because I get to meet kids just like me who are missing their sister or brother too.” These children know exactly what each other are going through, and they find a comfort in one another that they can’t find anywhere else.

Sibling support services are limited across the state, but the need is undeniable. Without outlets for expression, children can struggle later in life, please donate today to ensure these crucial support services can continue to reach grieving siblings like Zoe.

Your generosity will support grieving siblings today.

Please donate.

Our first Christmas without Zack

By Maureen Bond, mother supported by Very Special Kids

I can’t really remember the first Christmas without Zack. I do however, vividly remember Zack’s very first Christmas with us and the trio of car/truck/tractor that Santa got him; a future full of potential and boyish play. It was a really lovely and exciting time.

The next Christmas was the first one after his hideous diagnosis, which came on the morning of his first birthday in August. This was a Christmas of thankfulness, because we had some time to spend with him.

His third Christmas was spent at home without many problems, although it was probably in between hospital admissions and fortnightly inpatient day treatments. We didn’t know if this may be our last Christmas with him so he was definitely the focus of our day, and we felt lucky to have him with us.

The last Christmas was a three day dash home from the Royal Children’s Hospital (two hours away) ‘on leave’ from a nine week hospital stay after he got an infection. He wasn’t able to do much by this stage so we had a fairly quiet time sitting around on the lounge room floor with Zack. Not many friends or extended family, just a quiet house of immediate family.

The first Christmas without Zack is a bit of a blank, it’s almost a little strange how I don’t remember this particular time; I often wonder if that is a self-protection mechanism at work.

I think it was an anticlimax mostly. We still had to celebrate and be happy for our other children so we just relaxed with my family under the half built carport. It was meant to help keep the weather at bay while loading Zack and all of his equipment into the car but it was built about six months too late. Just before lunch we went up to the cemetery to visit Zack and leave a little toy.

It was awful. We all cried and sobbed and our other young kids looked at us as if we were from another planet. I think at that moment we wished we were!

There is another Christmas I also vividly remember, which was when I ‘forgot’ (got too busy) to go to the cemetery to visit and leave a little gift. That devastated me. I really felt like my heart was more broken than when he passed away, because I did have control over this and I felt that I had messed up. I was sad and upset, but mostly disappointed with myself because I hadn’t made the cemetery visit a top priority. I guess this was the turning point for me, realising I didn’t have to go to the cemetery as a sign of remembrance anymore.

I remember Zack every single day in all sorts of ways. He will always be with me, even if it is only in my heart and my mind now, instead of my arms. Christmas is now about spending time with loved ones and relaxing to enjoy time with family and friends.

I will probably always wonder what things might have been like if it hadn’t been for that diagnosis, but this is how our life is now, so I choose to enjoy what we have, including our fond & fun memories of our gorgeous boy, Zack.

The generosity of giving time

Volunteering is an integral part of Very Special Kids’ service delivery and fundraising model. More than 615 Family Service and Friends fundraising volunteers and an additional 412 temporary and corporate volunteers generously give their time.

Family Service Volunteers assist in four different ways: in the family home; when the child is admitted to hospital; when the child is at Very Special Kids Hospice; and by participating in program activities, such as Sibling Days. Every Family Service Volunteer completes extensive training to equip them with the skills and knowledge needed to support families who have a child with a life-threatening condition.

The Friends Volunteers are involved in areas such as fundraising, administration, gardening and maintenance. The Friends Volunteers organise events throughout the year, including the annual Fair and also play a major role in the Piggy Bank Appeal by visiting Victorian communities on the Piggy Trails. The role of the temporary and corporate volunteers is to provide administration and practical fundraising support.

One of these volunteers is Mary Connell, who has generously given her time to Very Special Kids since 2014 as both a Family Services Volunteer and a Friends Volunteer.

Family Services Volunteer

Mary has been linked with the Grills family since 2015. She supports the family in their home, visiting every Thursday, with the main focus being spending time with six-year-old Abbey, who has an undiagnosed neurological condition. As a retired nurse and mid-wife she likes that she can spend quality time with someone in need, rather than be their health professional.

“I certainly enjoy volunteering with the family, I really love spending time with Abbey. I have become quite attached to her and her younger five-year-old brother Jacob. I know their mother Claire really appreciates the break she gets when I am there with them” said Mary.

Although Mary started out as a Friends Volunteer, she knew this is what would suit her best explaining “I knew right from the beginning I wanted to do something that was hands on. Which is why the Family Services Volunteering is perfect for me, I get a lot of satisfaction in doing that. I feel like I am making a difference and being helpful.”

Mary also regularly attends Sibling Days to assist the Family Support Team and spend time with other children, and she also provides emergency cover when needed too.

Friends Volunteer

Mary spent her first year volunteering with Very Special Kids through fundraising activities like the Fashion Sale, Fair as well as administration duties like mail outs. She enjoyed the time she spent doing this and especially meeting other volunteers.

Mary explains that being able to have a choice in which area you volunteer in is extremely valuable, “we have the option and choice with Very Special Kids to do the volunteering role that suits us. It’s broad and Very Special Kids is great because it offers you the opportunity to do hands on work and you receive excellent training to prepare for it.”

Very Special Kids is extremely grateful for its volunteers and the time they contribute.

“I can’t see myself not volunteering with Very Special Kids anymore, I have made so many strong connections through doing so” Mary said.

Celebrating an amazing year with volunteers

In recognition of the invaluable contribution volunteers make to our organisation, Very Special Kids hosted an end-of-year Christmas gathering with all Friends and Family Services Volunteers.

It was a relaxed evening with live music, a delicious BBQ dinner and drinks, and plenty of catching up – the perfect way to celebrate what has been a great year. We were even surprised with a visit from four boys staying in the hospice, who were excited to be a part of the celebrations.

Despite the extreme weather, attendance was high, and the atmosphere reflected the kind and giving nature of all of our volunteers.

We say it time and time again, but Very Special Kids simply could not do what we do without the support of our volunteers.

The generosity of 272 Friends Volunteers who assist us with fundraising and a team of over 343 Family Support Team volunteers who commit many hours working directly with our families ensure that we can continue providing the best possible care to over 900 families throughout Victoria each year.

This year, Very Special Kids volunteers have given back an amazing 26,640 hours of invaluable support to our organisation and the families we care for.

On behalf of the team at Very Special Kids, we wish to say a sincere thank you to all volunteers who keep us running. Without these treasured people who make up the Very Special Kids jigsaw, we simply couldn’t do what we do.

Find out more information on volunteering at Very Special Kids here.