My son Dylan had his first seizure when he was 4 years old. Admittedly, I panicked. Our oldest son ran from the room, frightened, while I cried and tried to talk to Dylan as he was seizing. I think I remember saying “what do I do?”, over and over, while my dear husband remained calm. Looking back now to this life changing event nearly 11 years ago and knowing what I know now, it was a small seizure that only lasted maybe a minute. But when it’s happening to your sweet baby boy, as all parents know, it might as well have been forever. After a few doctor appointments and many tests, we came to discover that he had something called Tuberous Sclerosis Complex, a rare disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. The aspects of TSC that most strongly impact quality of life are generally associated with the brain: seizures, developmental delay, intellectual disability and autism.
Shock and disbelief. And heartache. Oh, the heartache!
I clearly remember sitting in the doctor’s office, staring at the neurologist after hearing the diagnosis. What was this disease I had never heard of? I felt like I should cry, but the tears didn’t come. I was in more than a little denial. I remember thinking, I can’t do this! This is one trial that I just cannot bear. I’m not patient enough, I’m not strong enough, and I’m not the mother he needs. In the months that followed I could barely let him out of my sight without a feeling of panic. I got up several times in the night to check on him, afraid that he would have a seizure while sleeping. I remember once standing at the kitchen sink in the middle of the day and finally just sobbing, praying, pleading with the Lord for help and strength, to help me know what to do, how to help my son. This was the beginning of my journey to learning to ask for and accept the gift of grace from Heavenly Father through His son, Jesus Christ.