Who is Hazel?
My girl, Hazel Tan is 9 years old this year. She was diagnosed with Shaken Baby Syndrome at 3months old, followed by West Syndrome. We have tried many types of medications on her, and by far, only Prednisolone was able to control her seizures. However, once we start to wean her off, the spasms would come back. Stopping the spams with medication is not an ideal solution as it is not suitable to be consumed for the long term. Until now, she still has spasms daily. Hazel is attending school at CPAS, and has been enjoying her time in school. She is able to walk independently for a short distance, but for most of the time, she loves to be carried.
Even though Hazel does not communicate verbally with us, she will show us her emotions in other ways. She laughs loudly when she is happy, she screams and gets angry if we do not do things her way. Sometimes she mimicked our words and that really tickled us! Our biggest challenge would be when she is unwell, as she would totally stop taking in water and milk. This would escalate further her spasms when she does not have sufficient fluid intake.
What keeps us going?
RDSS is a big family, made up of many parents who have many more years ahead of me, of handling a special child. When Hazel was diagnosed back in 2012, I thought I was the only one facing it and my world was so dark. I kept to myself, struggled between emotions and having to care for a special needs child. I could not accept it. I was even more emotional after seeing friends around me with their neurotypical children. That made things more difficult for me. I often thought to myself, “Why me? Why does it have to Hazel?”
After getting to know more parents in RDSS and opening up to them, I woke up to a whole new world. I envy normal children, but many parents also envy Hazel because the least is, she can move, she can cry, she can laugh, she can stand, she can hold a toy in her hands. These actions which seem like a normal and easy feat was no easy job for our special child. They gotta work doubly or triply harder to achieve it. There are children with a rare disorder, whose condition may not as good. These parents taught and showed me that, even our journey may be tough, but we learn to walk with faith and hope. Our child needs us. How will the child feels if their own parents keep feeling negative and dwell in sadness? I certainly want to bring more joy and happiness to Hazel’s life!
It is a very joyful and warm community in RDSS, with us cheering each other on, praying for children who were hospitalized, giving suggestions and recommendations on suitable therapies. I am glad that I got to know RDSS and also proud to be part of this community. I do not feel so lonely anymore while walking this journey.
It is never easy to hear our child being “diagnosed”. We may never be able to come to terms with it because we hoped that one day our child will be normal. What I have learnt in these 9 years with Hazel is, life is unpredictable and I want to treasure every day that I have with her.
She achieved her little milestones from time to time, in her own ways, at her own pace. I tried not to brood over what she cannot but celebrates on what she can. As the saying goes, happy mummy, happy child!
Love is not Rare!