Dads of Epilepsy
Jim – Father of Jonathan
My Story – Being the father of a son with epilepsy
In November of 2012, my son Jonathan had the first seizure of his life at age 16. Up until this point, epilepsy and seizures were something that I knew about but not intimately like I was about to. Jonathan had three grand mal seizures within 2 weeks—all at school. Later when I did see him having a grand mal seizure, it left me feeling very sad, helpless and discouraged that I had no power to conquer this for him.
A series of doctor appointments would occur resulting in a diagnosis of epilepsy—not a tumor as I had originally feared. I was thankful that it wasn't something terminal but was concerned for Jonathan's future. He immediately lost his license and was put on medication. I appreciate so much of the work that my wife Denise did. She contacted the school frequently to educate them and to work collaboratively with them, getting their support in many modifications to his school routine.
After graduating from high school, Jonathan started going to college. While we had seen his energy level go down due to all of the medication during high school, his energy and concentration continued to deteriorate. He was able to complete the better part of two years but has since had to withdraw.
Through the involvement of our local epileptologist, we were referred to a hospital out of province where Denise and Jonathan travelled to several times for testing. It turned out that Jonathan has a complex case where it is impossible to tell with standard testing methodologies, where the focal (starting) point of the seizures occur. The next step planned, was to do an invasive procedure that would have greater precision in determining this. However, after waiting from June 2015 to February 2017, and working with our epileptologist, we got to a point where we couldn't wait any longer and now we are switching to another hospital. While we are extremely disappointed to have lost 2 years with little explanation, we are excited that an appointment has been arranged for July 2017. Even though some of the tests have to be redone, we are hopeful that this team of doctors at this new hospital, will move through the process expediently. We are trying to move past the frustration of the first experience, towards a hope of something better around the corner.
Jonathan is now 21 years old. He has been a great encouragement to me—showing a more positive outlook on life than I could imagine that I would be able to in the same situation. Life is different than it should be. As a dad, my hope is to enable my kids to live life fully and to succeed in the ventures that they undertake. Further, it is my goal that they are able to live independently as early as possible—to make their own path in life. So with our situation at hand, Jonathan takes a lot of meds, needs a lot of sleep and is very cautious about the things that he does—ensuring that he doesn't put himself into dangerous situations should he have another seizure. He is largely housebound with little social interaction. I am deliberate about spending time with Jonathan and I enjoy it whether that be watching TV shows, playing games or having discussions. While he has been an encouragement to me, I am hoping that I am also an encouragement and role model to him. Even though we don't understand these situations, we continue to rely on our faith.
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