Monthly Archives: June 2020

Aiden – gone, but not forgotten

“Aiden never uttered a word in his life, but if he could he would have said, I love you and thank you.”

I’ll hold onto these words for the rest of my life.

The best man at our wedding shared these words at our son Aiden’s funeral. To this day I still find peace and hope in knowing that although Aiden’s life was not long, it was full.

Aiden was born with Lissencephaly Walker-Warburg Syndrome a rare genetic condition that impacted the development of his muscles, brain, and eyes. It’s the most severe genetic conditions in the congenital muscular dystrophies group, and so rare that he was just one in a handful of children in the whole world with it. The doctors told us it wasn’t likely he wouldn’t live to celebrate his first birthday.

As first-time parents we didn’t know what ‘normal’ was. We were told we couldn’t take him home after he was born, but from the first moment we saw him we knew that we had to be his voice and fight for his right to live his life to the fullest.  We focused all our energy on making the most of every moment we had together. It wasn’t easy, but I consider every moment a blessing. Aiden taught each of us so much, he couldn’t speak or walk, or swallow well on his own.  He relied on us for everything, so when the doctors asked us where we wanted him to die, we knew this would be one of our most important decisions.  Although we didn’t want to dwell on his death, we knew we wanted him to be comfortable.

The hospitals were cold and clinical, so when we learned about Very Special Kids and the haven it offered families like ours, we knew we had to learn more. We visited the hospice and saw their end-of-life room and family accommodation. This one of a kind places meant that Aiden could receive hospital grade care, in a home environment, for both respite and end of life care.

In the end Aiden died in the hospital, but what happened next turned the most awful time in our lives to one we will cherish forever.

Aiden’s body was transferred to Very Special Kids, the special room preserved his body and allowed our family and friends to come and visit him and say goodbye too. Our Very Special Kids family support practitioner, Jenni was there for each of us, she supported me and my family members as we each grieved in our own way. We could plan his funeral in our own time, and it enabled us to celebrate Aiden’s life. As dairy farmers from regional Victoria and with most of our family in New Zealand, this time in the hospice meant that we didn’t feel alone or isolated, the team at Very Special Kids felt like our family.

Aiden was the best thing to every happen to us and although there is some peace in knowing we gave him the best possible life, the loss and grief of his death is forever with us. At the beginning everyone is there, but as time goes on family and friends move on too. We each grieve in different ways and the grief cycles that hit are unpredictable and at moments unrelenting. Very Special Kids has been with us every step of the way, Jenni knew Aiden and when the rest of our world started to fall away, she’s remained our constant.

Very Special Kids is the only place that exists that gives me permission to be a bereaved mum. It’s a place where I can completely let my walls down and speak about Aiden, he is now and forever will be a piece of my heart, he is gone but not forgotten.

My entire family and I credit Very Special Kids with our ability to cope each and every day, I hope you never know what it is to lose a child, but if you do, just know Very Special Kids will be there.

I know that the support we receive is only possible, because of the support you give Very Special Kids.

Your support gave me my support, and I can’t thank you enough.


To support Bonita and her family, please donate to Very Special Kids by June 30.

Meet our essential workers

I’ve only worked at Very Special Kids since November 2019 but it very quickly felt like my second home. My role is pretty much what you would think when you hear “personal care worker”, but I emphasise the role of caring. Whilst the physical care needs are important, so too are the emotional and psychological. I try to make sure these kids are happy and comfortable, and know they’re cared for. I always get the response “Oh wow, that work would be so tough”. I always respond “It’s so special. I’m very lucky”. The name of Very Special Kids truly is the perfect name.

Due to COVID-19, a lot of the Very Special Kids children and families are even more isolated and vulnerable. It’s such a disruptive and anxiety provoking time. I can only imagine the ripple effect COVID-19 is having on the Very Special Kids families and not being able to access our normal therapies and support services.

I’m grateful that we can still provide support to Very Special Kids children and families, albeit in some different ways to usual.Day to day, we still practice normal hygiene routines and infection control, but some tasks require additional steps and precautions. The biggest difference is the lack of hugs!

End-of-life care at Very Special Kids means supporting a child to be as comfortable as possible, and still have their days filled with love and dignity. It’s also about supporting the family and helping them create special memories together. It’s so important to be able to provide end-of-life care at Very Special Kids, because children and their families shouldn’t go through such a vulnerable time alone.

Generally speaking, in a culture where we shy away from death, we’re unaware of the intricacies of how to best care for someone at their end of life. Just like at a birth, having support from people who have experience and knowledge in this area is so valuable. I find it a real honour when children and their families let us in to their lives to be involved in those final days.

To help Ella and the team provide unique, personal care to families, please donate here.

Meet our essential workers

When people ask me what I do at Very Special Kids, I tell them that I not only care for very special children who have special needs but also their families. I explain to them that the children we care for are either there for respite or end-of-life care. They’re amazed that such a place exists to support children and their families. Even after working here for over year, I must admit I’m still amazed too.

We provide holistic care for the child and their families. For me it means to support both the child and their family in away where they feel they can trust Very Special Kids staff to give the best possible care for the child, by making them as comfortable as possible,during these difficult times.

It also means to be able to provide them with a safe space to allow them to grieve and where they feel comfortable speaking about their fears and concerns for their child. I think caring for children in their final days is the most special and precious time. For me, I remind myself that during their final days it’s not about me, it’s all about the child and their family and friends. It’s about supporting them in a time where they’re preparing, the best that they can, to slowly accept or come to terms with the mortality of their child. And it’s also about being able to be slow to speak and listen in order to understand what the needs of the child and their family is.

I believe palliative care is such a special field where children at end-of-life and their families allow you to be a part of their journey. A moment that stands out for me is when I’ve cared for a child that is admitted to Very Special Kids for end-of-life. The journey that you go through with the child and their family is a humbling experience. And it is such a blessing to serve them in such a difficult time, now more than ever. COVID-19 is changing so much, but the care we give these families can’t and won’t.

Please donate to ensure we can continue to support families facing their most challenging times.

Meet our essential workers

I provide operational leadership, support and supervision to the hospice team. I manage staff rostering to provide safe effective care to our kids. I care for children with life limiting conditions and their families during respite stays and at end-of-life. I have been at Very Special Kids for almost six years and I still always get a sense of fulfilment after working in the hospice.

It is a privilege to care for a child and their family during this time. If I can help alleviate any of the pain suffered I will. The pain, agony that our families go through when they lose their child is hard to watch. But at Very Special Kids we are there to support them at this time, in the best way we possibly can.

Many of the children we look after have complex needs, requiring numerous medications for symptom control and medical interventions, this is a lot for any parent to undertake. It is important to us that parents can be parents and they are given the space and time to make lasting memories with their child that they can treasure, whilst we take care of their medical needs in the background and do whatever we can to make their time with us as special as can be.

I will never forget the chocolate party! A five-year-old boy who was with us for end-of-life care loved chocolate, so of course I promised him I would throw him a chocolate party. When I came on shift, we threw the BEST chocolate party you could imagine with his siblings and parents, he talked about it for days! These are the moments we create for our families at Very Special Kids, if we can do it, we will.

At the moment we aren’t throwing chocolate parties, but we are still doing everything we can to ensure that every child and family is taken care of. It is a true privilege, to care for a child and their family during this time.

Please donate to help us continue to provide essential care when families need it most.