I can remember the day my child had his first seizure like it was ten minutes ago. It is a moment in time that is embedded in my head for eternity. The sight of my child turning blue, his 6 month old body shaking uncontrollably, his sweet voice crying out in distress….my life was forever changed.
When Connor was diagnosed with the rare brain malformation Schizencephaly at 6 weeks old the neurologist informed us that he had a 90% chance of having seizures, or moments of abnormal electrical activity in his brain, because of the deep clefts in his brain. Digesting that information was extremely hard for me. I had known one person my entire life that had seizures, but had never actually seen her seize. My only perception of seizures was what I had seen on television or movies. You know where an actor falls out, vibrating on the floor, foam coming out of their mouth, their eyes rolling back in their head…. Yeah that is what I was picturing, and I was mortified as I nervously waited for the seizure bomb to drop.
Well, that neurologist was right. Connor did indeed begin having seizures. And lots of them. His very first seizure was just like the ones on the movies. There was absolutely no denying what was happening to my precious baby boy and I’m thankful for this because the “seizure monster” can disguise himself in various forms. I had no clue how many types of seizures there were before my life was thrust into the world of epilepsy. Seizures can be convulsing, stiffening, jerks, staring into space, laughing, crying, one sided tremors, etc. Connor has introduced me to 6 different types of seizures in his almost 8 years of life and as he gets older the seizures increase in frequency and intensity. They are always around and ready to ruin the day at any given moment.
I’ve never had a seizure, so I cannot say how it feels personally. But I can tell you how it feels to watch a person, especially your child, have one. It is excruciating, literally painful. Time stands still (yet feels like forever) and everything around you fades away as you hone in on your child, watching as an electrical storm fires away in his precious brain. You want to make it stop, make the seizure stop scaring him, hurting him, killing his brain. But more often than not, you can’t. Sometimes the seizure is only a few seconds, sometimes it is 10 minutes or even longer. Sometimes the seizure makes him cry, and sometimes the seizure knocks him into a deep, induced sleep…for days. Sometimes the seizure stops by itself, and sometimes you have to intervene with emergency medication and pray that it works. Seizures have a mind of their own and treat a brain like a playground, swinging from neuron to neuron. You become a seizure expert in this line of parenting. You quickly learn how to distinguish what is a bad seizure and what is a BAD seizure, who can babysit your child and who can’t, what medications work and which ones are awful, and sadly you learn when the ambulance needs to be called….after all you understand the reality of a seizure taking your child’s life. Can I just say, SEIZURES, YOU SUCK!
You might wonder why I am wanting you to know about Epilepsy Awareness when your child doesn’t have epilepsy. Well, at one point my child didn’t either. That all changed in one instant, and our lives were tossed into a whirlpool of anti seizure meds, neurology appointments, seizure helmets, EEG’s, and living in fear of the next seizure. Being the caregiver for a child/loved one with epilepsy changes you. It changes how you think about everyday things like eating, drinking, walking, bathing… It changes your relationships with others. It changes how you worry about your child. It changes how you sleep at night. It changes everything. The love you once had for this child with epilepsy is now gone, and in its place is this fierce love that comes with hawk eyes, grizzly bear strength, and an animal-like sense for things about your child you had no clue was humanly possible.
So if you are reading this and know someone affected by the seizure monster, send them a quick note to let them know you care. You care about their situation and you care about their child’s well being. You may not understand the death grip hold that epilepsy has on a person, but you understand that they need your support and encouragement. It’s a lonely world to live in when no one “get’s it” and blows your child’s seizures off like you are a hypochondriac. Having a friend that reaches out to offer hope, support, and love in this journey full of seizures can mean absolutely everything and renew our strength to keep fighting that seizure monster for our beautiful child with epilepsy.
Epilepsy is the 4th most common neurological disorder in the USA, yet public and private funding for epilepsy research lags far behind other afflictions. Up to 50,000 Americans die each year from seizures and related causes, 1 in 10 people will suffer from a seizure in their lifetime, and there are 200,000 new cases of epilepsy each year. An overall awareness of epilepsy is so greatly needed for reliable resources, services for those affected by it, and most importantly understanding and acceptance.
To learn more about epilepsy or to make a donation, please go to www.epilepsy.org.
If you are a fellow Louisianan you can learn more at www.epilepsylouisiana.org.