Kiind member, Hilda’s nine-year-old daughter Sabine has a diagnosis of intractable epilepsy, right hemiplegia, and dysphasia. Despite her health challenges, Sabine is a positive and happy little girl whose favourite thing to do is play with her brothers, Isaac and Jakob.
Hilda says that Sabine’s positivity, happy disposition and infectious smile have helped her, and the rest of the family get through the more challenging times of Sabine’s journey.
Sabine was diagnosed with epilepsy at three months old. Hilda describes this as the most difficult and confronting time in her life as she watched Sabine have seizures which required emergency rescue medication, visits to the Emergency Department, and numerous tests including a painful lumbar puncture.
It was a challenge for Hilda to navigate the unknowns of caring for a child with disability including the medications, therapies and complexities of the health and disability systems as well as caring for Sabine’s two young brothers. This, along with the need for reassurance and emotional support led Hilda to Kiind when Sabine was six months old.
Hilda also participated in Kiind’s Parent Support Groups which helped connect her to other parents and carers who she still keeps in touch with. Although Hilda has a supportive network of family and friends, she found these connections beneficial, as whilst not all children have the same medical diagnosis or challenges, they were all on the same journey.
Due to Sabine’s care needs and hectic routine, Hilda has been unable to return to work full-time which has been difficult for her. On an average day, Hilda wakes up early to get Sabine ready for school, gives Sabine her medications and then together they do some therapy on Sabine’s eye gaze device that helps her communicate, or physical therapy in her walker. After dropping off Sabine and her brothers to school, Hilda runs errands, prepares for Sabine’s appointments, liaises with Sabine’s health and therapy teams, and works on NDIS paperwork. Before Hilda knows it, it’s time to pick up the children from school and take Sabine to after-school therapy appointments, and Sabine’s brothers to their sporting activities, where Sabine loves to cheer them on.
Sabine may have a complex medical condition and challenges that go along with it. However, her doting brothers, extended family, friends, and school peers always find ways to include her and make her feel that she is important.
Hilda’s caring journey has also been one of self-discovery. She has found more strength, resilience and patience than what she ever thought she had. Along the way she’s also learnt that in order to be a good carer and mother to all three of her children, she also needs to look after herself.
Hilda now uses her acquired knowledge by assisting those who initially feel overwhelmed when receiving news of their child’s diagnosis by helping them to advocate for the needs of their child and help with navigating the NDIS system.
For other parents and carers whose child has received a new diagnosis, Hilda recommends reaching out to Kiind to access social and emotional support, guidance and information and support from others who have lived experience of caring for a child with disability and/or complex needs.