Meet Ally, a compassionate caregiver whose journey touched our hearts as she helped us care for our son. In this heartfelt narrative, Ally shares her experiences, struggles, and triumphs as she supported our family through the challenges of epilepsy:

“I just have a few questions about one of the bios you sent over.” I remember writing to the head of my nanny agency, asking her, “What kind of special needs does the child have?” She wrote back and buried the lead with how amazing this family was and how cute the kids are. Letting me know they’d been waiting a while to be matched with a nanny.

She eventually made her way back around to answer my question: “he gets seizures.” He has epilepsy.

My heart sank. We had friends with a beautiful daughter who suffered from seizures due to a rare genetic disorder she was born with. I knew what seizures could look like and the damage they could do. I closed the email and didn’t write back. But my mind kept going back to the little boy in the bio that really just wanted a “buddy.”

The interview: meeting the epilepsy warrior

I decided to interview with the family, and I told myself if I wasn’t completely comfortable, I’d say so. A couple of days later, I saw the boy who needed a buddy in a Google meeting interview with his parents, and he was the cutest kid I’d ever seen. They explained he had a type of epilepsy that was drug-resistant and had had two surgeries, the first with the hope of ending the seizures and the second with the hope of just controlling or minimizing them.

The morning of my working interview, I sat in my car a block away 30 minutes early, watching and rewatching the video they had sent of what my new buddies’ seizures looked like and the training videos of how to care for someone during a seizure. I knew it would be a little while before I cared for him alone, but it was still intimidating and scary. I took a deep breath and decided I really wanted to try for this sweet little boy and his family. I promised myself again that if I got in over my head, I’d say something.

Thankfully, everything my nanny agency had said about the family was true, and then some. They were awesome. I received wonderful hands-on training in caring for my buddy during a seizure, and I began to learn his cues pre-seizure.

Preparing for the role

Shortly before I started, my buddy had his second surgery to install a VNS device. I learned the ins and outs of using the magnet at the early onset of a seizure and began to successfully stop some seizures in their tracks. That was an amazing feeling. There were always some that couldn’t be stopped. I held his hand while his parents administered the medicine to stop the seizure. I learned how to count how long the seizure lasted after the medication was administered, make sure he was comfortable, and monitor his pulse and breathing.

Going solo

After several months, the day I had been dreading finally came. A seizure came, and it was just my buddy and me. I took a deep breath. He needed me and was counting on me. My training kicked in. I realized I did know what I was doing. I grabbed the VNS magnet and attempted to stop the seizure without luck this time.

I trusted my judgment and knew it was time for the next step. I administered his medication and started the clock while I monitored his vitals and held his hand. I told him everything I was doing as I did it and told him he wasn’t alone. After what seemed like hours but was really minutes, his little body relaxed, and it was over.

He was resting comfortably and had come through just fine. I just sat there a minute looking at my little buddy, the mighty epilepsy warrior. He was an absolute hero fighting an invisible battle essentially against his own brain. At that moment, I realized I could support him and keep him safe in battle, and something in me changed.

Empowerment through care

The fear was replaced with resolve and a feeling of empowerment. The time I spent caring for my buddy, the epilepsy warrior, was a beautiful adventure that changed me forever for the better. I learned so much, and I’m thankful every day I didn’t let fear stop me from taking that adventure. So, if you’re reading this and you are learning to care for a child with epilepsy and your adventure is just beginning, take a deep breath and step on the battlefield. You can do this!

Ally is a career nanny who has cared for children for almost two decades while raising her own family. In her time caring for her buddy with epilepsy, she learned what families of medically complex kiddos face and what true courage and endless love look like. Her warrior buddy taught her how to face challenges head-on with joy. The epilepsy community continues to hold a special place in her heart to this day.