This is Lucas, hair still wet from swimming lessons, proudly displaying his advancement to a new skill level. As parents of this talented, goofy, articulate, sweet hugger monkey, we are delighted that most days are full of predictable moments of silliness, ongoing story-telling, and countless references to all the bodily functions that typically entertain a 7-year-old boy. However, September 14th brought us something unexpected: he had a seizure.
Over the next 10 weeks, he had four more seizures, including two in the three days leading up to this swimming achievement. With no history anywhere on either side of the family, and with a whole slew of tests coming back normal (thank goodness!), not to mention the unenviable experience of witnessing the child we know helplessly (though, thankfully, temporarily) disappear before our eyes, we have become researchers, analysts, appointment makers, insurance negotiators, and helicopter parents.
Of the seizures, Lucas says, “I don’t remember them, but I can tell that something happened.” He has taken on his new normal like a trooper, undaunted by visits to new doctors, scary tests, big words that even Mommy and Daddy cannot spell, the removal of some of his favorite foods from his diet, and the addition of not-so-tasty vitamin supplements to his morning and evening routines. A few weeks into this new adventure, he had a blood draw that would make most adults uncomfortable, and he did not shed a single tear. The kid did not even complain when we took away sugar on Halloween, realizing that it may be a seizure trigger. He takes his vitamins without hesitation, and he even learned to swallow his anti-seizure medication on the first try – a skill neither of his parents developed until they were in their late teens. He is facing this like a champion!
We know that Lucas must have some fear about the seizures and their implications, but he does not openly display it – other than being extra “huggy” in the days immediately following a seizure (a side effect from which Mommy and Daddy are happy to benefit). He also does not shy away from talking about the seizures when asked about them, and he is doing his best to will Mommy and Daddy not to worry. Through it all, he remains fully engaged in remote learning, Muffalo Potato drawings, Roblox and Amazing Frog video games, Lego builds designed for teenagers, and anything and everything related to Star Wars or Harry Potter.
As you can guess, even with Lucas adjusting so admirably, the first few months of facing this challenge have been emotionally difficult for our family. We are exhausted and afraid and (truth be told) a bit angry at the world. Thankfully, we have each other. Beyond our little in-house trio, we have concerned family and friends connected by love and technology. We also have the sweetest remote school helper who is a great buddy and source of consistent comfort for Lucas, some of the most caring and supportive teachers you could imagine, an attentive therapist, and a team of medical heroes working to care for our favorite guy. And we are happy to be connected with the information, resources, and support provided by Epilepsy Foundation.
We are so fortunate to have all these things and (so far) to be able to afford the ones that come with a price tag. Other families in our situation are not so fortunate, and we can only begin to imagine how they manage the fear and stress that comes with this sort of experience when those feelings are compounded by financial worries and lack of access to the team of people and resources we have. We hope that people continue to support Epilepsy Foundation of Greater Chicago so that we and other families can continue to receive the comfort, support, knowledge, and empathy the organization provides as we seek ways to help protect our children and to manage the fear of not knowing when the next seizure will strike.
If you have opportunity to interact with our son or another child known to have seizures, please treat him like any other kid, with a little extra awareness of the silent threat he faces.
Kathleen & Andrew (parents of Lucas)