I can pinpoint the exact moment I first appreciated what it meant to be a parent. Nope, it wasn’t the moment my first-born son was born. Or any time during those hectic, exhausting, exhilarating days immediately following that momentous occasion. It wasn’t when he rolled over for the first time, or first slept through the night, or began experimenting with solid foods. Nope. I first truly felt like a mother only months later, when my son was admitted to the pediatric intensive care unit after suffering his first cluster of tonic-clonic seizures.
One winter evening I was holding my 8-month-old in our kitchen, celebrating the fact that he’d cut his first tooth earlier that day, when his head abruptly dropped forward, his entire little body went slack, and then he stiffened and started convulsing involuntarily. The most remarkable thing I noticed was that he was completely unresponsive to me, but with his eyes wide open. I remember that I didn’t panic. My parents had told me years earlier that I’d had what they called “febrile convulsions” when I was a toddler. My baby didn’t feel at all warm and hadn’t been sick, but I recognized the hallmarks of a seizure, summoned the wherewithal to dial 911, and calmly, matter-of-factly explained that my infant son was having a seizure and could someone please send medical assistance? And so, a short while later, the first of several mommy-and-me ambulance rides took place, and I felt that first inkling of the immense depth of responsibility I’d taken on when I made the decision to become a parent.
In those first several months while we were searching for answers and treatment options, my son underwent a battery of tests to rule out even more terrifying diagnoses than epilepsy. The picture, above, shows him doing his best to charm the PICU nursing staff during his first 24-hour EEG. Some of his seizures were prolonged, lasting 20 minutes or longer, and in some cases he would have clusters of seizures unaccompanied by any obvious triggers like a fever, fall, or injury to the head. We had some low points; for example, the time he started convulsing while eating a grilled cheese sandwich in his high chair, and only came out of it when an EMT forcibly thrust a needle into the middle of his leg after the “gentler” version of his emergency seizure medication didn’t work. Later, he needed a chest x-ray to determine whether he’d aspirated any of the sandwich into his lungs (he had), and I was not able to hold his hand during the procedure because I was newly pregnant with his little brother. I remember thinking, how am I going to do this? I’m ill-equipped for this job! And now I’m going to have two of them!
Years later, I now realize that, in a sense, epilepsy has been the easiest of my son’s various medical and developmental diagnoses to treat. While we still don’t have any definitive answers, his seizures are well controlled with medication. And, although he continues to face developmental, behavioral and learning challenges in his day to day life, he’s continued to charm family, friends and teachers with his sweet disposition and good-natured exuberance. A while back, the two of us participated in the Epilepsy Foundation’s annual Walk for Epilepsy, and each of us received a t-shirt. My son now likes it when we wear the shirts together. He says, “Mommy, we’re ep-si-lepsy buddies!” That’s about right, little man. Ep-si-lepsy buddies for life.
Maria – thank you for sharing this. It parallels much of our own journey. It is a heart stopping.
We will be walking in the Walk for Epilepsy this spring. Our team is Seize the Day – Team Reo!
Beautifully written article on motherhood, epilepsy, and hope. I’m Maria’s sister and shortly after the first seizure that she describes my four sons and I were visiting when my nephew suffered a seizure that lasted about 20 minutes. We watched Maria navigate her way through bringing her son back around safely while we sat by helpless. The only part of her story that I disagree with is that she was ill equipped for motherhood. She has all the right stuff. Thank you for sharing your story and for spreading awareness to our family, the Arlington, VA community and the world!
That’s some Varsity Parenting! I’m grateful for medications that ease the struggle, and parents like you who are there for all the rest of it! Thank you for sharing.