I never imagined I would be here, sharing my son Tad's story to fight for change. Tad is my baby, my miracle, my best friend, and my reason for everything. And if you had the privilege of meeting him, you would know he is the definition of pure joy! For 4 1/2 years, he defied the odds, surviving with the help of an incredible team of medical providers and my unwavering love as his mom. But in one tragic moment, all of that hard work, hope, and resilience was destroyed by an uneducated nurse.

In Florida, families of medically complex children face enormous challenges in securing consistent, quality care. Many parents are forced to choose between being there for their child or earning an income to support their family. This penalizes these families, forcing them to rely on health providers who qualifications may be questionable. Like so many parents of medically complex children, I learned that no one will ever care for your child like you will. But our system doesn’t make it easy! So I did what I thought was best, and I enrolled in an LPN nursing program so I didn’t have to make that sacrifice. Or at least that’s what I thought. 

But my worst nightmare came true when I received the phone call while in class, Tad was unresponsive. His trach came out and the nurse didn’t know what to do. Despite having a mini ICU room available to her: spare trachs, ambu bags, oxygen, even a ventilator. This nurse had absolutely no trach experience so she just watched as Tad suffocated and died right in front of her. She had everything she needed to save him, but lacked the proper training and education. She failed Tad, costing him his life. 

After Tad’s passing, I did somehow manage to push through and graduated with my LPN license in his honor. I am currently working as a pediatric home health nurse, the kind of nurse Tad needed. And unfortunately I now see this broken system from both sides. Families are relying on poorly trained, overworked, or unqualified providers, while parents—those who know their children’s needs better than anyone—are left without the option to step into this role in a way that provides financial stability.

It doesn’t have to be this way.

Other states have already passed waivers allowing parents to be paid as caregivers. Studies have even shown that children receiving care from family members have better health outcomes, and it costs the system less!! Most importantly, it keeps families together and provides the consistency and love these children need to thrive. Tad was the ultimate testimony of this. Home really is the best medicine and no amount of money can buy a mother’s (caregivers) love. 

But this isn’t just about statistics—it’s about real lives. It’s about Tads life.

I know nothing I do will ever bring him back, but I refuse to allow his story end there. Tad and I are now on a mission to spread awareness and advocate for other vulnerable families like us. We’re asking Florida lawmakers to pass a waiver that allows parents to become paid caregivers for their medically complex children.  Let’s give parents the chance to care for their children without sacrificing their financial stability and try to prevent that a child ever has to suffer because the system failed them. These kiddos deserve so much better! 

Tad’s story didn’t end the way it should have, but together, we can make sure his legacy protects others.

#teamtadlegacy

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