The Homestretch

I’ve been trying to figure out how to write this one, so I’ll just start at the beginning.

Here’s the journey.

Back in 2020, after we lost our daughter Taylor, Danielle started having seizures. Everything fine one minute, then bam! Suddenly her brain betrays her, she falls to the floor and starts to seize. No warning, no pattern we could find. It took us four years to find a doctor that could even properly diagnose it: medication-resistant epilepsy, which is a clinical way of saying the medicines never really did the job. The profound grief of losing Taylor actually restructured Danielle’s brain and left this behind in it’s wake. Several times the seizures began looping (Status epilepticus), one right on top of another with no break. Which meant intubation, and a couple of times we came near to losing her. If you’ve ever watched someone you love seize and there’s not a thing you can do about it, you know what that does to a person. It’s a living nightmare that felt like it was waiting around every corner. I’ve sat through it more times than I can count, and I wouldn’t wish it on anybody.

Earlier this year, through a series of events we can only attribute to him, God led us to a neurologist in Edinburg, Dr. Estophan, who told us there might be a way to fix it. A surgery that could give Danielle a seizure-free life. I have to tell you that at every step of this grueling journey, God has been there, reminding us that His plan is not to harm us but to give us hope and a future. And He’s proving it at every turn.

Getting cleared for it was its own ordeal. Just picture what our life looked like going in: years of watching everything Danielle put in her mouth, a never-ending schedule of pills that had to be taken at exact times, planning every situation around sleep, avoiding places and environments that were too visually stimulating. Spending every ounce of mental energy, every single day, trying to stay above seizure threshold…and struggling to keep all that stress, pressure, and fear under our hats so we could continue our duties as “ambassadors of fun.”

Then we walked into that hospital terrified, mentally exhausted and did the exact opposite of all of it, on purpose: six days tied to a bed, no meds, sleep deprivation, strobe lights, having seizures on purpose. It was terrifying. The big fear was that one of those seizures would turn dangerous.

But she got through it. Every seizure they needed, all the data they needed, and not one of them turned dangerous. I’m not going to dress that part up. It was the hardest thing I’ve ever been through, and I was just sitting in the chair. Yet through all of it, there was a peace there that could only come from Him.

But here’s the news I’ve been waiting to share: the team went through everything they collected, and Danielle doesn’t need an implanted device after all. Going into this, we’d been told an implanted device in her brain was the only hope she had of ever being seizure-free. Think about that prospect — a gadget in your skull, with a battery that has to be changed. Terrifying. God’s plan didn’t include that. All the earlier testing had indicated the seizures were coming from both sides of her brain. During those six days, they found out that wasn’t the case. There’s one problem spot, and they think they can fix it with a single surgery. No hardware in her head for the rest of her life. What comes next is either an ablation or a lobectomy, and we sit down with the surgeon on October 5th to decide which one. There’s one more test beforehand, and then we finish this thing.

We’re in the homestretch, and the outcome keeps getting brighter.

While all of this has been going on, this island has carried us. The benefit at the Coral Reef, the musicians who gave their time, Jeff Hopson and everybody who gave to the GoFundMe — you took a weight off us so Danielle could focus on healing instead of worrying. And the crew in Oakdale, California’s cowboy capital, who threw a party and rallied folks from all over the Central Valley behind us. I don’t have fancy words for any of that. Thank you just doesn’t cover it, but it’s what I’ve got.

We are so grateful for the love we’ve been shown through this trial…and we are so excited to get back on stage and share some songs, and some solidarity, with the people who loved us through it. That’s what’s waiting at the end of the homestretch.

I’ll keep writing here as there’s news to share. We’re almost home.

— Robby