We just joined our son Andrew for the annual Walk for Epilepsy down on the National Mall. Several thousand people came from all over the country to attend this boisterous show of support for their family members and friends who are fighting for normalcy in a life challenged by seizures.
My son had his first grand mal seizure when he was 8 years old. He was playing dodge-ball in gym class, fell, and hit his head. This trauma induced a full body seizure in front of Andrew’s terrified young classmates.
Thus began our family’s journey with epilepsy. Over 50 million people worldwide have this neurological disorder, including singers Neil Young and Prince, and actor Danny Glover. We learned that there are numerous varieties and causes, but cures remain stubbornly elusive. Over the years, Andrew’s neurologists have run numerous tests and prescribed various anti-seizure drugs with the goal of keeping his grand mals at bay.
Andrew is now 26, and has been seizure-free for the last 8 years. This is not only a personal milestone for Andrew, but a cause for celebration for our family and others who strive to see their loved ones overcome this condition. We have witnessed many of these agonizing seizures first-hand, and have shared Andrew’s anxiety over when the “next one” might occur. We know he considers these risks as he leads his life every single day.
This year, as Andrew recruited folks to join him for the Epilepsy Walk, he wrote about his feelings on Facebook. He told us about his pride in making it 8 years without a seizure, and how much the support of his family and friends meant to him. This very humble and public “thank you” from Andrew made me think about how overcoming this challenge has helped to make Andrew who he is today.
One episode in particular comes vividly to mind. When Andrew was 11, our family joined several other families in a seminar sponsored by our elder daughter’s school. Each family member was given an opportunity to open up and speak about events in our lives that had “held us back”. We went around the circle of about 20 people and listened as each person spoke of a deeply personal event which had impacted their life. One family’s youngest member was a boy with a full leg brace, who was painfully shy. When it was his turn to speak, he simply looked down with tears rolling down his face. An awkward silence followed. After several painful minutes with parents pleading that we simply let this young boy pass, Andrew spoke up. He spoke directly to the boy and told him that he knew exactly how he felt. Andrew spoke about how self conscious he was after coming out of a seizure in a classroom full of his friends. He surmised that having a leg brace presented a similar challenge which this boy was striving to overcome every single day. After Andrew spoke, the boy looked up and told us his story. A story that each of us in that room will never forget.
Andrew’s life with epilepsy has given him some rare tools which enable him to help others. As people came up to Andrew and congratulated him for his “8 years clean”, I was inspired by their own stories in overcoming the challenges of this disorder. These stories in courage are their valuable gifts to the rest of us. I would like to thank them all.
Congrats to Andrew and his always supportive family and friends. I remeber vividly what occurred around the time Adrew was first diagnosed how devastated and dishearted you all were that Andrew had to deal with this disorder and what all the ramifications of having it meant to a child his age. He has come a long long way and I for one cld not be happier. I remember what a challenge it was for my first husband and how horriffied our four year old daughter was when witnessing one of his grand mal seizures. He has since had to undergo brain surgery to rid himself of seizures and is happily about three years “clean” after over thirty years of “episodes”. So again congrats Andrew and all who suffer and eventually conquer this disorder.
Also overjoyed to see the blog back in gear..great way to start the week!!!!! Thanks Sue!!!
Great post mom. It was a challenging road for us all helping Andrew with Epilepsy. Being with him for his first one definitely helped me build character, when I forced myself to be strong for someone I love when all I felt was fear. I find myself getting emotional while reading this blog, or seeing his sign, because I’m so unbelievably proud of him and how far he’s come. Love to all of you.
Thank you for sharing such an inspiring story of courage, insight and victory. Count every good step as a ‘Win’ and any relapse as ‘Only a Pause in the Win.’ I look at Life that way because to see it any other way is a set-up for self-defeat.
Congratulations to Andrew, and all who are battling and those winning in the challenges of Epilepsy. (I clicked to log in after beginning my comment above and before I could add the congrats portion, my partial comment posted.)
What a wonderful celebration of your son, Susan; thank you for sharing this powerful and moving account. Congratulations to Andrew for achieving this milestone and for recognizing it in this fashion ~ trying to help others by raising money for research, through this walk.