It was the disturbing quality of the scream coming from one son looking at his brother that alerted Cindy and told her something was terribly wrong. Her fourteen year old son Stephen was lying as stiff as a board in the middle of the family room having a seizure. The doctors were quick to tell Cindy that he didn’t have cancer or heart disease. And while that was all good, the diagnosis of Epilepsy was enough to throw the family into a tailspin. About the same time, and strangely not connected, Stephen began to lose his eye sight from a condition known as Keratoconus. This disease causes the cornea of the eye to turn into cone shape and it distorts vision, causing multiple images and sensitivity to light.
Car troubles, an ovarian cyst, medical bills, worrying about her other two sons, and wondering if a last straw would cause her husband David to walk out, Cindy has done her best to hold the family together.
According to Cindy, the trick to moving forward is to not look back at the way things were before Stephen’s diagnosis, but to forge ahead, adapting to life’s changes. Eventually, you find yourself moving out of survival mode into something that looks like a new normal. Cindy can’t fix what ails her son, but she has learned to be present and not focus only on the moments when Stephen is having a seizure, but rather live for the moments that look like “normal” life.
Stephen has lived with Epilepsy now for two years. He has gone through seven different medications, none of which have stopped his seizures, and has had almost every side effect, including weight gain and losing his hair. Because of his eyes, Stephen has to study for school by lying on the floor and reading so close to the page of a book it looks like he has fallen asleep in a middle of a boring read. But he is the ever cheerful one, not complaining at all about the challenges that he faces. Cindy and David are even talking to Stephen about the possibility of going to college. He joked and said he would be the only person there who had not only a seeing- eye dog but also a dog to notify him of oncoming seizures. “You have to laugh at those things that would otherwise make you cry,” she says.
“Stephen has been my teacher,” Cindy said, learning how to see things in perspective and not sweat the small stuff. She is a better mother and wife and her family has emerged stronger because of this storm.
The biggest lesson Cindy has learned is that she has never walked this journey alone. “What you don’t know until later is that unseen hands are holding you up, wanting to help in any way they can. You may feel isolated and alone, but there is a whole network of people who say, ‘Let me help.’ And your only response should be ‘Yes, thanks.’”
Cindy lives in Sioux Falls, SD. Her favorite hobby revolves around theater, which she does with her whole family. At times her house looks like an exploding anthology of plays! She and her husband Dave are on the Board of the local community theater, and she organizes the summer theater camp for local kids. Cindy is a voracious reader and loves any activities that involve her sons. She works as an MIS Specialist for The Midland Group.
Thank you Cindy for reminding us to be present to this moment!