March 26, 2011. “Purple Day.” On that day, our lives forever changed, and suddenly we were on a path we never imagined would be ours to take. Our son, Shane, had his first seizure on that day. Who knew it was a day dedicated to epilepsy awareness.
Over the next several years of high school we struggled to understand Shane’s epilepsy. What to do, and how to help. What it meant for our lives, and most importantly, his life. Our dreams and hopes for him to go off to college. How would we ever be comfortable with him leaving home? Our life’s mission is to help him prepare for the future and to help him grow as an individual. How do we now help him prepare for a life with epilepsy?
To our fortune we came upon the Youth Transition Education Program sponsored by The Epilepsy Foundation of Texas. For that we are especially grateful. During Shane’s senior year we, as a family, participated in the program and benefited from the insight, information, educational topics, and community provided. In seeking assistance and answers, we found how meaningful it is to have the opportunity to share our hopes and fears, our hearts and minds. The program provided that platform and much more. As we outlined a plan for Shane’s future, we also adopted a concept from Amazon’s Chairman/CEO, Jeff Bezos. “Stubborn on vision, flexible on details.” Six amazing words! We were able to form a strategy, a vision, for Shane to be able to attend college after graduating in May of 2015. With the added component of epilepsy, we knew we would have to increase the degree of flexibility with the details. The Transition Program helped us to reaffirm that Shane would be “armed” with support, and that we needed to trust him to manage his lifestyle with the goal of staying seizure-free. Believing in this wonderful curriculum, we continue to volunteer our time, and are privileged to help facilitate the monthly meetings in Dallas.
Shane is now a sophomore at Texas State University in San Marcos, Texas and is thriving, not just surviving. One of the biggest issues we face as parents is the on-going concern for his well being; body, mind, and spirit. The challenge of balancing his college life as someone living with epilepsy is crucial. Managing the components of adequate sleep, nutrition, exercise, and stress are paramount. Helping him to understand that we are not trying to “control” from a distance, and that we believe in him to act responsibly in all aspects of his life. Trust but verify. One example: we trust that he will order his meds in a timely fashion, and we verify that he does so. Communication is the key, and independence does not mean isolation. Shane is embracing this concept and respects that daily communication helps alleviate apprehension and worry. As we’ve shared with him, it’s Mom and Dad’s meds!
The focus of the Transition Education Program is to foster self-advocacy in all aspects of life. From health, to education, to civil rights, to employment, to benefits, to transportation, and so on. Relating to healthcare, we are blessed to have a doctor who is “in the trenches” with us. If we were a patient’s doctor, our message would be this: epilepsy is what you have and not who you are. Trust in a team here for you that will help you embrace life and accomplish your goal of living seizure-free. Do your part to understand your precipitators, to take your medicines, and to communicate on all levels. As parents, it is vital to have a relationship with a doctor who can help with global issues as well. Watching your child have seizures is a traumatic experience. It is important to understand we all have different ways of dealing with a loved one’s health condition. We as parents have to work together to bridge that gap and support one another.
Acts of compassion, concern, and kindness have “lifted us up” in our journey. Phone calls to reach out to us, hospital visits, prayers… People, such as those with The Epilepsy Foundation, who because of their passion, serve us and provide a platform for us to serve individuals like Shane, and their families. Life is challenging regardless, but the added concern because of epilepsy can be overwhelming. Utilize your resources, rely on your support team, and plan your path early. You can do it together. You are not alone.
Understand that this is an on-going trial, and the “fight” each day can vary. We find refuge on our faith as we entrust our son to God, 24/7. We find benefit in knowing we can make this “bigger than us,” hoping others will be helped by our experiences and epilepsy awareness heightened by our efforts. Know that others can benefit from your stories as well.
We are most thankful that Shane is exploring new opportunities and loving his college life. Our dream continues for him to live a joyful and productive life, seizure-free. He is our hero. There is hope.
March 26, 2011. It was a year later when we put the two together and realized what “Purple Day” meant. Not only for us but for millions of others.
