Day 20 of the Epilepsy Blog Relay™
Excerpt from Wishes for Mercy:
When our daughter was first diagnosed (and I mean within seconds and hours of her diagnosis, while we were still in the ER) we were told that epilepsy could be easy to manage and would not cause significant fallout in her life. These comments came from doctors, nurses, and families of those who’d been diagnosed with epilepsy in the past. They knew people or had learned in medical school that epilepsy was manageable and normal lives could be lived. Halfway through my daughter’s first week long stay in the PICU with unrelenting seizures, I remember looking at one of the young, pediatric interns who had just delivered one of these medically-minimizing speeches, on the heels of yet another medication increase, and asked him quietly through tears, “Sir, do you have children? Have you ever watched your own child suffer like this?” Tears filled his eyes as he finally took a moment to look beyond his clinical, rote response into the humanity of our current situation. “No, ma’am, I don’t have children yet. [Pause. Then.] I understand what you’re saying. This is not easy.”
Fast forward nearly two years, and unfortunately those rote assurances have not yet applied in our child’s case. My daughter’s life has been anything but normal. She’s endured so much suffering that extends beyond the daily seizures themselves. In the beginning, trying to honor her pain and protect her privacy, we shared very little about what she was going through, her treatments, and what her days entailed. But, as the months rolled by, we began to realize that people did not have a clue what this disorder involved. They thought her days were relatively unaffected unless it was a day when a “big” (tonic clonic) seizure struck. Otherwise, they believed she was living her normal childhood.Read Jessica's Post
TWITTER CHAT: And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET.