Lucas’ story

A mum and dad are holding their baby who has a small tube from his nose to help him breathe. They are smiling at the camera.

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.