I tell my boys to explore and run and take risks. I want to tell her the same thing but I can’t. So, I tell my boys to be brave and I tell her to be safe.
Most people still don’t understand that epilepsy can be fatal and is actually a leading cause of death. Families like mine are very aware of the statistics. We know that we could lose our children while they sleep and that every seizure could be their last. Madeleine’s death was still a devastating shock though. She was a vibrant 16-year-old with her life ahead of her and a family that adored her.
Four times this month, the monster has won. Four times. Four mothers have been forced to bury their small children. Four kids are gone because of a disorder that most of the world still sees as non-life threatening in spite of the 50,000 people in the US who die seizure related deaths every year.
I was sitting on the couch a few days ago reading Facebook when another post stole my breath. A sweet girl was curled up in her daddy’s arms watching TV and then she was gone. No warning. No preparation. No goodbyes. Just gone. I looked down at my own little girl with her head on my shoulder and I felt my heart stop because as much as I try to pretend we’re OK, I know that monster lives in my house too.
As we sat around the fire pit in the hotel courtyard and talked for hours, I suddenly felt my soul exhale. Every woman in that circle knew what it was like to hold your seizing daughter in your arms and pray she takes another breath. Every woman understood that strange mixture of devastation and relief that comes with a diagnosis. Every woman bears the scars of dreams that were ripped from her chest. Each of them understood the pressure of carrying this burden but somehow as we all shared our stories and shared the weight, it seemed to get a little lighter.
If you are the parent of a child with special needs, you are likely very well aware of the divorce statistics for our cohort. Our marriages are significantly more likely to end than our peers with healthy children. It just seems cruel that the disorders that try to steal our children attack our marriages too. The truth is though we can experience stress levels similar to those of soldiers in combat and that puts strain on even the healthiest relationships. Our marriages aren’t doomed though. We just need to understand what we are facing and protect our relationships while we weather the storm.
I relate to the other parents of children with special needs on many levels but I don’t bear the guilt of having been the one to pass on Alyssa’s genetic disorder or the constant questions of if it was something I did caused her problems. I relate to adoptive parents too but our story isn’t just about adoption anymore. I switch back and forth between groups depending on the support I need at the moment.
Many parents of kids with epilepsy are passionate about the push for medical marijuana because we understand the cost of every delay. Our children are dying while they wait for legalization. We have lost several children to seizures while they waited for their last hope to be approved by politicians who were more concerned with their own agendas than in letting us have access to a lifesaving plant. That is devastating and unacceptable. It is equally appalling that we would deny other parents the chance to save their children.
Alyssa was a foster child who legally belonged to the state and people of Texas. When Alyssa was abused, the state stepped in to protect her because as a society, we believe that it is our obligation to care for our children when they need us. When we refuse treatment that could give an innocent little girl a chance at normalcy and life without seizures or side effects, we are denying our responsibility to her, and other sick children in our country.
We never dreamed that epilepsy would invade our world like this but God new it was coming. He was prepared for it even if we weren’t.