Building A Community of Support for Carter

My story started a year and a half ago right before Christmas. My sweet one-and-a-half-year-old son, Carter, suffered from a virus and spiked a significant fever. This resulted in him experiencing myoclonic seizures, and he was ultimately hospitalized as he developed status epilepticus when the seizures did not stop. We were blessed with a medical team that performed an EEG on him, confirmed the seizures and other abnormal brain activity, and then administered rescue medication. He started on daily medication and has been seizure-free since, which is such a blessing. He was eventually diagnosed with myoclonic epilepsy in infancy.

The biggest challenge was adapting to a new "normal" life not knowing how epilepsy was going to impact it and as we awaited other test results to help us get an accurate diagnosis. To overcome this challenge, my husband and I educated his caregivers who understandably were anxious about his health moving forward. Many did not know much about epilepsy before Carter's diagnosis. Most importantly, we realized we needed a stronger community surrounding us. This led to us getting significantly more involved in church. The epilepsy diagnosis had a direct correlation to the closeness of our family, our family's spiritual growth, and the blessing of a church community that has supported us along the way. 

The Epilepsy Foundation has helped me with educating myself and others. There was so much I didn't know before my son was diagnosed, even with another close family member suffering from epilepsy. All the educational resources helped me to learn about my son's diagnosis and also about how many other types of epilepsy there are out there. I'm grateful to know more about a condition that so many people in the world have. I've even learned more about seizure first aid, which helps me feel prepared to help others (family and strangers) in the case of seizures or an emergency.

Epilepsy has been so challenging, but there have been so many blessings we have received as we've adapted to life with our son's diagnosis. Epilepsy is part of our journey; it does not define it. For my family, epilepsy has been a catalyst to change our lives for the better. Days aren't always easy, and coping can be difficult, but there's so much good. 

I am sharing our story to help others know that an epilepsy diagnosis doesn't always mean there are only challenges ahead. A diagnosis can also lead to prioritizing things in life with a new perspective and for us, that has brought growth and joy. Don't give up and keep searching for the light in this life!