A happy boy Lucas and his parents Mel and Felix

Written by Mel and Felix, mum and dad to Lucas

When thinking of Very Special Kids, the word related with it is “experience”. There are several charities who helped us during this hard journey, but Very Special Kids is the only charity that gave us a lot of memories of Lucas. Belinda and Helena came to our house to provide music therapy almost every week, which is one of Lucas’ favourite times. He smiled a lot when we sang and danced with him.  Everyone in the family treated music therapy as a family event and looked forward to it. Now every time when we think of Lucas, we will think of his happy face while he was dancing with the music, which gave us much comfort.  

 Also, Very Special Kids provided very professional medical support to us as well. I still remember the first time I saw Belinda and Paula. They answered quite a few questions from us when they visited us at home. And after that, Belinda sent me a very detailed email on how to do physio exercises with Lucas and links of the toys he may be able to play with in his condition. We are very grateful for that as we finally knew how to play with Lucas and what was good for him instead of treating him as a sick child and having no idea what we can do to help him.  

The other time that makes me grateful happened after Lucas experienced two episodes and came back from hospital. We did not dare to cuddle him as repositioning him may cause blockage of his airways. Belinda helped us and with her supervision, we finally cuddled Lucas again! We could see Lucas’ smile when we cuddled him, and he finally did not need to wonder why dad and mum did not cuddle him. I feel so lucky to meet Belinda and Very Special Kids. I will definitely regret if I did not cuddle Lucas during the last period of his life. 

As a parent who experienced the death of a child, I feel that there are two periods I needed more support. The first one is the first time I knew the disease of Lucas and the second one is after he passed way. During these periods, we have a lot to decide and accept. Sometimes, accepting the facts is very hard. Parents may have a lot to regret and think of “what if”. A professional counsellor is very important at this stage and Jodie is one. But before she can do anything to help, being honest to yourself and trusting her is more important. When we tell her what we did and what we were feeling really upset about, she was able to help us. Believe me, as a professional counsellor, Jodie heard of more shameful or dark thoughts, so I know she will never judge us.  

If I have to give a suggestion to Very Special Kids, I will say, as a parent who knew my child had a limited life span, I wanted to spend every minute with my baby. So at this stage, all visits that can involve both the parents and kid in will be more welcomed.   

Compared with others, I may be one who recovered quickly. When I look back, there are three reasons that helped me all the time. First, my husband and I are very honest and straightforward to each other. We shared every thought and never blamed each other. The tragedy is sad enough, so as the two who love Lucas most, we decided to be have the support of each other. Second, I trust the professional counsellors. There are many professionals who are willing to help at this stage, so I shared anything with them no matter whether it was good or bad. I shared my sadness, my guilt, or even my fear to my marriage with them. And it was very helpful. Third and most importantly, I know Lucas loved us as we love him. He must want us to be happy and enjoy the rest of our life. Please don’t feel guilty of living a happy life. I will never forget Lucas but I will enjoy my life as well because Lucas taught me how precious the life is.  

And finally, I will suggest every parent with a special kid create as much memories as possible, videoing your child and trying to read to them. Those memories will save you in the future. No matter how hard it is right now, time will flush the sadness and what is left are those memories. Now every time when I think of Lucas, I am sure that he lived a happy life with love. That is enough.

This International Nurses Day, we speak with Inma, our newly appointed Infection Prevention Control Nurse.

Inma joined Very Special Kids late last year as a Registered Nurse and comes with a wealth of knowledge from her community adult palliative care background. We spoke to Inma about what nursing means to her and the excitement of her new position, as we recommence our services at Monash Children’s Hospital and prepare for the reopening of our hospice in early 2023.

What do you appreciate most about being a nurse?

I was lucky to choose nursing as my career over 20 years ago. It’s given me so many opportunities to work in different countries and different areas of nursing.  It is such a privilege to look after people and support them. Before I started at Very Special Kids, I specialised in community adult palliative care for the last seven years – and found it very rewarding. I believe everyone deserves the best quality of life and the best death that they could have. That’s very important for me.

What inspired you to transition to children’s palliative care?

I was very fortunate to attend the Oceanic Palliative Care Conference in October last year and was impressed that Very Special Kids had two presentations. Listening to the presentations about what Very Special Kids does really impacted me. I had no idea that it was possible for one organisation to support children and their families in so many ways. I loved how personalised the level of care was. I believe it’s important to die where you want to die and for families to have that option with Very Special Kids. That’s significant.

Can you share an overview of your new role at Very Special Kids and how you support the hospice team?

To ensure the safety of the children and families in our care, Very Special Kids follow the best practice of Infection Control. As Infection Prevention and Control Nurse, I ensure staff, volunteers, and anyone visiting Very Special Kids hospice are complying with safety procedures and policies. I believe it is everyone’s responsibility to stay safe and protect the children we care for. It is important to remain vigilant and proactive to ensure we are maintaining a safe and secure environment for the children and young people in our care.

What is the Very Special Kids interim space at Monash Children’s Hospital like?

The space has been transformed quite a bit. There is a big sign on top of the door that takes you into a little ward that says, “We are so happy you are here”, and that is such a beautiful, welcoming message to parents and children that we are thrilled to be together again. There are animals and flowers and it’s so beautifully decorated by the staff. It’s a really lovely place.

When I see the smiles on the children’s faces and love in the room, it makes me so happy – the kids enjoy all the facilities available at the hospital. One of the favourites, is the little cinema where the children can enjoy the full movie experience – even if they haven’t gone to a cinema before. There are also different gardens to explore, we often take the kids in their wheelchairs to the gardens to enjoy the sunshine. Jaffa, the Very Special Kids therapy dog will sometimes come along for a walk with the kids, and it really is special. While it might not be our hospice, it has become a great interim space to support children and families.

What would you say to a family considering a stay in our interim hospice?

Each family has their own routine, and it can be a big step for them to have someone else look after their daughter or son. Very Special Kids try to really follow what the parents do at home. Same times, same routines. If it’s an afternoon bath, that’s what we are going to do to make the transition as easy for the kids as possible. It is important to me and the service delivery team that we can personally understand each child in our care. That way we can adapt to best suit their needs, so if loud noises don’t agree with them, we are going to have soft music or if they are sensitive to light, we adjust it to best fit their needs. Every little piece of information is taken very seriously.

What is one of your most memorable experiences?

I have already had so many incredible and unique experiences. Before our space at Monash Children’s Hospital reopened, the music therapist, Helena, and I visited a family whose baby required 24/7 support. During our time together, the parents learnt techniques for holding their baby, allowing them to sing and have a beautiful moment with their child, while still ensuring they can breathe properly. It was so beautiful to witness an incredible moment between the parents and their baby, watching them create lasting memories where they could just enjoy having fun together.

What are you most excited about with the new hospice facility reopening in 2023?

I’m excited about having a sensory room that is purpose built and the whole design is very modern and bright. The hydrotherapy pool is also going to be an amazing experience for the kids, a lot of the children we support tend to be quite stiff, so experiencing the hydrotherapy pool will really help make physiotherapy easier for them, assisting with better pain management.  A lot of thought has been put into the design of the hospice, and I think it’s going to come together nicely and functional for what  children and families need.

What is your favourite thing about working at Very Special Kids?

I love that nothing is impossible, and nothing is too difficult. If there is an alternative option that best fits the child’s needs, Very Special Kids will do its best to adapt and tailor their support. You see that consistently across the board with every department, whether it is the service delivery team, volunteers or fundraising, I feel there’s a common spirit and philosophy of making it happen. I truly believe that is what has kept Very Special Kids going for so many years.  It’s quite unique.

Do you have any advice for families thinking about using Very Special Kids services?

I would encourage families to trust, join in and give Very Special Kids a go. The staff understand that parents need a break and provide 24/7 clinical care to give peace of mind and ensure the safety of your child. When the kids are with us, we want everyone to have fun. It’s not about babysitting them. It’s about making it count and making every moment special. It is always my goal to get a smile out of every child who stays, so they’re going to get bubbles, music, dancing, being a bit silly, whatever it takes to get a smile and to get the kids to have a good time. It’s really rewarding.