Amanda and Sonia were born at 36 weeks in 1979. From those earliest days, we faced questions tinged with judgment and blame. They reached developmental milestones within expected ranges, except for speech. What followed were years of conflicting information, changing labels, and navigating systems that often excluded us from decisions about our own daughters.

At age seven they were diagnosed with intellectual disabilities. We entered a world we hadn't known existed — special classes, separate schools, all occurring during the era of deinstitutionalisation. Institutions were shutting their doors, social inclusion was the new goal, however our experience was so often marginalisation and profound social isolation. People didn't know how to engage with a family like ours.

Sonia developed an autoimmune disease when she was 18 years old, and her chronic ill health meant she required significant care. We were told she would need to live in an old folks home. This was not acceptable to us, and there were no appropriate residential services available locally. So we did what we had to do — we established The Ordinary Life Family Trust, purchased a home, and employed staff to provide 24/7 care so Amanda and Sonia could live together close to family. They had an awesome life. However, due to Ministry of Health funding decisions, we were forced to close the service.

Then both Amanda and Sonia developed schizophrenia in their twenties. What followed were years of medical challenges, medication struggles, and navigating mental health and disability services that rarely work well together. Today, Amanda and Sonia live in separate residential facilities. Sonia can no longer communicate with us due to her illness; Amanda can. We visit as often as possible, carrying ongoing grief alongside fierce love and pride in their courage and resilience.

They are beautiful women — courageous, resilient, determined. We love them dearly.