Celebrating

It’s hard to believe that exactly one year ago, we were preparing to bring Zayden home from the hospital. Zayden, Blaize, and I had just completed a 48-hour trial run of caring for him independently, and the moment we had been waiting for was just days away. Grampa was scheduled to arrive that afternoon to undergo his training and officially join our at-home care team. I spent that day packing Zayden’s toys, extra clothing, and medical supplies into the van to save time for our big journey home on Monday, December 9, 2024.

Over the past year, Zayden and our family have come so far. In those early months, we juggled three or more doctor appointments each week and spent more time on the road or in hospitals than at home. There were many frightening moments, including four respiratory arrest incidents in the first three months and one critical event of both cardiac and respiratory arrest. That harrowing incident required an ambulance ride, an air medical flight, and a four-day hospital stay in March 2025. It’s been a year of countless sleepless nights and stressful days, but progress has been made. Zayden’s CDM1 is now better understood, his needs have stabilized, and his doctors are more confident in his care plan. We’ve also worked hard to build a nursing team that fits beautifully with Zayden’s needs and our family’s dynamics, and it’s made a world of difference. While life is far from perfect—tempers still flare occasionally, especially mine—Zayden remains the heart of it all, and he continues to thrive every single day.