Then came the breakthrough. We discovered the Rare Genome Project, a program that uses whole-genome sequencing to solve medical mysteries. After months of testing and analysis, we finally had a diagnosis. While this didn’t immediately change our day-to-day challenges, it gave us a sense of validation and a path forward. We were no longer navigating the unknown; we had a name for Tom’s condition, and we could connect with other families and researchers. This journey from uncertainty to a place of understanding taught me how vital structure and organization are in a life of caregiving. It’s why I started creating and refining the tools that have become the foundation of our daily lives.

Cthe most critical aspects of our routine. I use a detailed document to track every dosage and prescription change, dating back to 2008. We keep a copy on the fridge for easy access, and I bring a printed version to every doctor’s appointment and emergency room trip. It has been a lifesaver, ensuring that every caregiver has a complete, accurate record of his medication history.

• The Packing List: A must-have for our trips, this list is the result of a painful lesson learned after an emergency room visit—a lesson that taught me the importance of having a checklist for everything from medications to luggage. It’s a safety net that ensures we never forget anything essential while on the road.
• The Shared Calendar: We live by our shared calendar, syncing our devices and sharing it with Tom’s caregivers. We add every single appointment with two reminders—one for the day before and one for an hour before. This system is the backbone of our daily routine, helping us maintain a sense of control and organization and ensuring everyone is on the same page.

From my personal experience as an IHSS caregiver for Tom, I have seen firsthand how vital this work is, and how often caregivers are undervalued and underpaid. Our journey has been filled with both challenges and triumphs, but it has also shown me that caregiving is a real, essential job that deserves to be respected. In Santa Barbara County, where the cost of living is so high, caregivers are paid a wage that keeps them in poverty while saving the county millions in institutional care. That’s why I’ve become an advocate for fair wages and why this site provides information on how you can join the fight. I hope this platform can be a place to share resources, build community with other families, and give a voice to the caregivers who do this vital work.

Thanks for being here—let’s turn experience into change.