In the fall of 2023, I had plans to go to Austin, TX for a long-awaited girls trip. In the few weeks leading up to the trip my son’s seizures began to increase. One occurrence every other week was a typical number of seizures for my son to have. But as my departure date neared, he began to have them weekly then the week before I was set to leave, he was having them nearly daily.

In an attempt to quell the seizures (and based on my consultation with my child’s neurologist), I upped one medication, then another and when that didn’t work, I upped another medication. None of the medication increases worked to reduce the seizures. I was left with a decision; to go to Texas knowing my child was having consistent seizures or stay home and miss out on an adventure that I had been looking forward to for nearly a year.

For days I poured over the decision. Do I just leave my sick child? What if there was an emergency? Am I a bad mom for even considering going? But when the time came, I left. I knew my husband could handle an emergency, but I also knew that the seizures, while increasing in quantity, were not changing in their severity. I made the decision to leave my child behind for five days to disconnect from reality and connect with my college friends. Maybe I just needed to live a life I once knew for a few days. Maybe I was being selfish. But I made the decision and got on the plane and left.

While in Texas, I got daily updates from my husband and was in constant contact with my son’s neurologist. I was still a caregiver, every single day of that trip, even from afar. When the morning arrived for me to go home and most of the girls left for the airport, I felt a wave come over me. I began to feel dizzy (no, I hadn’t been drinking). I didn’t know if I would pass out or vomit, but I felt either was imminent. There was no way I could get on an airplane feeling like this.

I had a few hours before my flight and one of my friends left for hers. My other friend stayed by my side while I tried to hydrate but I couldn’t get over this feeling. I made the decision to go to a local ER knowing I would likely miss my flight. This felt like a worst-case scenario. I needed to get home to my children. My husband couldn’t keep taking care of the kids by himself. I knew five days was already burning him out. He needed a break. He needed me home.

When I got to the ER they were able to see me quickly and my friend sat in the corner of the room while they were unbelievably attentive to me. They asked me questions, took my blood, set up an IV and gave me Zofran for the nausea. Time ticked by and I urged her to leave me so she could catch her flight. “no, I’m not leaving you,” she scoffed at me like I was being ridiculous. She began talking about arranging another night together.

Between the care from the medical personnel and from my friend’s resistance to leaving me, I felt a sudden smack. Not just of intense appreciation, but one of deep wounded, grief. As a caregiver, I had completely forgotten what it felt like to receive care and to be treated like a human. The world had abandoned me long ago and the sudden sense that people still cared. About me. Literally blew me away.

I didn’t know a society still existed in which I mattered. In which my health mattered. In which they didn’t abandon me the second things got hard. I was appreciative but I was also so hurt and angry that when it came to being a caregiver, I was invisible. There was no village checking in on me and my family. There was no friend holding my hand, telling me it would be okay, standing by my side. But there she was right now, waiting for me, to bring me home. Thankfully, I was able to reschedule my flight for one later in the day and my friend just barely made hers. Once she left, I sat in the boarding area feeling like a hollowed, lost soul. I knew I was going back home to my isolated life.

I know it must seem like I am strong. Like I have my husband and we are strong and fine together. But there have been so many days that it has felt like this same moment. Sick, weak, tired, completely unable to get a handle on life to move forward. Like I’d fallen onto the rocks below and there is not one person witnessing it to come and help me. That’s how it had felt for seven years. And now, this moment brought front and center all that I wished I had in the hardest years of my life. And I was sad. I was so so fucking sad.

If you are still reading this, thank you for listening, and hopefully attempting to understand. As caregivers, we must stay strong but most days we don’t know how we are going to get on that plane and keep going. We have lost any sense of normalcy, and we just keep moving no matter how sick we are. Please see that we do need help and that we are not superhuman. We are not “SO strong”. We are barely-surviving humans, and we need other humans. We need to be seen and helped and loved. We need you.

See that girl, smiling in that picture above? She needed you, and sometimes she still does. But there are others out there at their very worst, that need you right now to help them get on that plane and survive another day, so they don’t forget what being human feels like.