Disability caregiving shaped Naomi O’Byrne’s entire life for 27 years. When her health collapsed, she faced an impossible choice. This episode of Golden Threads reveals what happened when she finally let go and what it meant for both of them.
⚠️ Content advisory: this episode discusses grief, which some listeners may find distressing.
If you need support, you’re not alone — help is available:
• Lifeline (24/7 crisis support): 13 11 14 · lifeline.org.au
For 27 years, Naomi O’Byrne organised her entire world around caring for her daughter Sarah, who was born with intellectual and physical disabilities, severe epilepsy, and a genetic brain disorder. She worked full-time while navigating school systems, fighting for mainstream inclusion, and managing escalating behaviours that made standard day placements impossible. But the protection born from love began to limit Sarah’s independence. When Naomi’s own health failed, developing lymphoma while managing Sarah’s crisis moments, the system failed her too. The emergency call came. Sarah moved into supported accommodation. Two years later, Sarah thrives in her own home with 24-hour care.
Naomi’s story speaks to the grief that disability caregiving never names, the real cost of unsupported dual roles, and the hardest truth: that the person with disability is often ready to leave before the parent is ready to let go. She talks about behaviour as communication, why asking for help is not weakness, and what systemic support actually looks like when it arrives. This is not inspiration. It is recognition. For anyone who has held someone close and wondered if holding on was holding them back.
Naomi O’Byrne is a mother, emergency management professional, and volunteer firefighter who has spent 27 years raising her daughter Sarah, who was born with intellectual and physical disabilities, genetic brain disorder, severe epilepsy, and scoliosis.
🕒 CHAPTERS:
00:00 Before Sarah: who Naomi was
05:13 Sarah’s diagnosis: discovering complexity
12:41 Behaviour, judgment, and survival mode
16:54 Mainstream school and the limits of integration
21:05 Working full-time while caregiving: the dual life
28:34 The NDIS and finding alternatives to day care
33:07 Health crisis and the emergency call
37:10 The separation: Sarah moves out
41:17 Advice on asking for help
43:18 Reading behaviour as communication
46:19 The grief no one talks about
54:23 What’s next: retirement and reclaiming life
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Kintsugi Heroes was created from a simple belief: every person has a story worth sharing, and sometimes the story we need to hear arrives exactly when we need it most.
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