Monthly Archives: March 2018

Self care for special needs parents

By Natalie Roberts-Mazzeo, mother supported by Very Special Kids.

I’m sure you have already heard the buzz words ‘self care’ circulating around, reminding you to slow down, to nourish, to prioritise your health and wellbeing, to exercise, to meditate, to sleep well. Yes, the list goes on and on.

Yet given your circumstances it can feel, well… pretty much impossible.

When you are raising a child with a disability or any other diagnosis, so much of your time and energy is taken up by providing additional care. I understand, I am in the same boat.

Some families live on very little sleep, perhaps they are up through the night dealing with seizures or administering medication. Maybe they just can’t switch their mind off, with all the enormity of the information they are dealing with.

Then there’s the physical side, the lifting children or young adults into and out of equipment, i.e.: wheelchairs and standing frames.

For the first few chaotic years after my daughter’s diagnosis, I spent most of my time either at The Royal Children’s Hospital or attending therapy appointments.

Any sort of self care other than a few hours sleep in between attending to my daughter throughout the night, felt like an impossible feat.

After a personal health issue, I realised I needed to nourish myself more than ever, after all, my daughter needed me to. Her diagnosis meant that she would require a lot of love and physical care for the rest of her life.

So I began to create ways to introduce self care into my life, yes I had to get really creative about it given my circumstances. Although I was lucky that I’m a qualified yoga and meditation teacher, so I had a tool kit. However even with that, it felt like a huge challenge.

I began with gentle exercises, I had to build my strength up again both emotionally and physically. Here’s a few things that helped me get started:

  • slow walks in the sunshine (or even through the hospital corridors)
  • gentle stretching exercises
  • taking deep conscious breaths in and out
  • swimming (or even sometimes just floating if I was too tired!)
  • riding my bike along the beach
  • writing and journaling
  • listening to music and moving to music
  • listening to an inspiring podcast
  • spending time in nature
  • enjoying a hot drink in the morning sun
  • listen to music, dance in the kitchen (why not?!)
  • taking moments of pause and breathing through stressful days
  • giving thanks for all the good things
  • catching up with friends and having a belly laugh
  • sign up to the local gym, pilates or yoga class
  • reconnecting to the things I loved before I became a special needs mama
  • ask for help when I needed it
  • making healthy food choices (not easy when you are tired I know!)

I discovered that when I took action on committing to my self care daily, my overall health and wellness increased.

When we prioritise our self care, we are in a much stronger position to provide the extraordinary amount of care our beautiful children require.


Find more insights from Natalie visit her blog – Miracle Mama

Saying goodbye to Very Special Kids

Hello, my name is Hanna, and I am 15 years old. I have been a part of Very Special Kids for six years now, and I have done many things with them. Including going on camps and meeting some amazing people. I have now been in remission for five years, and will no longer need the support, but I sure will miss it.

My family got involved with Very Special Kids because I had A.L.L (Acute Lymphoblastic Leukaemia). This is a type of cancer in your blood system. It’s when the “white blood cell” don’t do their job, and they multiply and do nothing, leaving hardly any room for red blood cells.

I was diagnosed with it when I was seven-years-old. I received treatment for three years, and wrote and published a book about my cancer journey when I was just 10-years-old.

Having Leukaemia, affected me a lot, both mentally and physically. I was bullied at school, because of the way I looked (bald head, tube in nose, and weight gain from the steroids), and I now suffer from anxiety and PTSD (Post Traumatic Stress Disorder). I luckily see specialists to help me deal with these problems, but, it really does change your life, and make everything harder, especially when you feel so different to other kids.

Although, Cancer may have been a negative in my life, it also had a positive impact as well. It has made me much more mature and grown up then other kids my age. It has showed my family and me who our real friends are, and it has inspired me to become many things, like a writer, and a digital artist/illustrator.

It has allowed me to go to many fun places, like Lord Somers Camp, Annie’s Cottage and Woodend, all provided by Very Special Kids. My family has really enjoyed it too, and we always come back home wishing we could have stayed there longer.

Lord Somers camp, is by far the best camp ever! I have met so many nice and supportive people there. The staff there were very kind and I also got to act in mini films they made, which helped me with enhance my confidence. I also got to go with my mum to the “parent’s room”, where I could get a back massage, and a pedicure. They also have a radio station, which you can play music and tell jokes to the whole camp, (that was my little brother’s favourite).

The Woodend Farmhouse is such a fun holiday place to go. My family and I have been there many times. It is so much fun, and the place we stay in is modern, yet still has that farm-house feel. It’s not far away from the local town either, and you can even feed the sheep that live on the farm. There is also a big barn house with a pool table, piano, bikes, kites, radio, tennis table, and a giant decorated pig stature. And did I mention that this is only on the bottom floor? On the second floor, there are beanbags, a chalkboard, costumes/wigs, and in the middle of the room there is round swing, that can swing anywhere. That was my favourite, especially when you’re listening to music at the same time.

At night time Woodend is amazing, the stars are really bright, and you can sometimes see kangaroos in the nearby fields, and honestly, I want to live there when I’m older.

I will miss so much about Very Special Kids but especially the farms at Woodend, Annie’s Cottage and Lord Somers Camp. I will also miss the lovely people I met, especially Angela Flood our Family Support Practitioner and Debra, our Family Support Volunteer.

It does however, feel so great to reach the end of such a long journey and to celebrate five-years in remission.

Anyway, thank you for reading my article. I am very thankful for Very Special Kids, and everything you have provided my family with. We will never forget the moral support and the lovely things you have done for us.

Also if you want to know more about me or my books, then you can visit my Website:

Ladies’ who lunch raise over $55,000

The room was full of love, generosity and laughs as we celebrated women whilst raising funds for children with life-threatening conditions.

Hosted by hilarious radio presenter Matt Tilley, the Very Special Kids Ladies’ Lunch was a gorgeous afternoon held at the Royal South Yarra Lawn Tennis Club with plenty of laughter to be heard.

Guests gave generously which resulted in us raising more than $55,000 to support Very Special Kids.

Our very special guests, Alex Gaythorpe and Renee Hewlett two mums supported by Very Special Kids, shared their touching stories with our guests and gave insight to living with a child who has a life-threatening condition.

Thanks to the wonderful sounds of Rebecca Barnard and Lusi Austin, our incredible Auctioneer Ruby Koop from Jellis Craig, Alivia Tonkin from Flowers Vasette, Elite Hair and Makeup Academy, Optical Audio Productions, Andrew and Chris Moss from Liberty Belle and Royal South Yarra Lawn Tennis Club.

You can view all photos from the event here.

Chain Reaction Challenge raises more than $1,100,000

After riding 1,000 kilometres through the scenic but challenging North Island of New Zealand, the Chain Reaction Challenge Victoria has raised more than $1,100,000 and still counting.

Thank you to everyone who donated and supported the event, we are so grateful for your generosity, kindness and support. A huge congratulations and thank you to the riders who participated in sometimes testing conditions, we commend you for your determination, endurance, passion and amazing fundraising efforts.

The funds raised from the Chain Reaction Challenge Victoria will directly enable Very Special Kids to undertake a large and important upgrade to Very Special Kids hospice, including the planning and coordination, to ensure  we can continue to provide benchmark standards of 24-hour nursing care for children with life-threatening conditions.

Read more on how the funding is helping support families of Very Special Kids: “The helping hand that won’t let go.”

For more information and to see photos from the Chain Reaction Vic ride, please click here.


Photo - Con Chronis

Photo – Con Chronis

Road to Respite – Helping families in Ararat

Last month we announced that we had formed a significant partnership which would enable regional families living with a child that has life-threatening illnesses the opportunity to access respite care.

Thanks to over $156,000 of funding from the William Buckland Foundation, Road to Respite is a joint initiative of Very Special Kids and the Royal Flying Doctor Service (RFDS) providing free-of-charge transport for regional children with life-threatening conditions to Very Special Kids Hospice in Malvern.

One of the families that have benefited from the new service is the Raynor-Rogers family from Ararat.

Sixteen-year-old Emily Raynor-Rogers was born with Hydranencephaly, a rare condition in which the brain’s cerebral hemispheres are absent to varying degrees. Emily can’t walk or talk, has regular seizures and requires 24-hour-care for all her basic needs.

Parents Sandra and Graeme say the Very Special Kids Hospice is their only respite and because of where they live and the complexity of Emily’s condition, “one trip can take up to 9 hours and a whole lot of stress.”

“It’s time consuming because we have to take constant stops along the way for medical intervention, to give medication and to provide suctioning otherwise she can’t breathe” says mother and full-time carer Sandra.

“There’s been times where we would have to stop for hours on the side of the road and wait for her seizures to be under control. Another time we had to call for an ambulance because it got really bad.”

The family first trialled the Road to Respite service in November last year.

“Having Emily picked up and dropped off by the Road to Respite van was brilliant. It certainly took the pressure off and gave us an extra two days at home to relax. From the moment she was picked up we were on holiday and it was reassuring knowing she was safe and in great care.”

We are so thankful to all involved for making this service available and look forward to seeing it help more families in need.