Sick days for the soul: grieving an epilepsy death

I went back to work this morning after being out the past two days. My boys were sick and I had to stay home with them. The truth is though, that the sick days provided a welcome respite for my soul. Curling up on the couch with my littlest was what I needed.

I took all the kids down to Tyler, TX last weekend where I spoke at the Parent to Parent regional conference. They were fine when we drove back on Saturday night but Sunday morning Bradley woke up sick, so we skipped church and settled on the couch for a day of pajamas and movies. When everyone was settled in the living room, I curled up in my recliner to scroll through Facebook and the room went dark. My feed was full of my friends’ grief at the loss of a child in our group.

When Alyssa was first diagnosed with PCDH19 Epilepsy, there were only about 200 girls on the planet who had been identified as having this rare disease. There are more now but our community is still small and we are still rare. Many of the parents of girls with PCDH19 (boys with this mutation are typically not affected) are in a private Facebook group run by the PCDH19 Alliance that has been a lifeline for moms like me. I find support, advice, friendship and people who truly understand this journey. On Sunday morning news broke that one of the families in our little community had just lost their daughter to a seizure.

Epilepsy Death

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.

On Sunday, I grieved with Madeleine’s family and appreciated being forced to stay home. On Monday, Bradley missed school because he was sick. I was frustrated that I had to cancel my classes and my clients but I also wasn’t ready to face the world yet. The next day Noah woke up with the virus and I missed more work. Bradley insisted he was sick too but I’m pretty sure he just wanted to hang out with his mama. I let him because I needed cuddles too.

Le Shepard — I had one meeting that couldn’t be moved so I brought Bradley with me and hid him in my office with strict instructions not to breathe near people. He obviously looks quite ill.

Emotional Fallout

I often tell my clients to journal each of their five basic emotions: mad, sad, glad, guilty, and afraid when they feel overwhelmed so here goes.

I am angry that the monster won. I’m pissed that we lost a child. I am mad that this horrendous disease even exists.
I am heartbroken with her parents. I’m devastated that flame was extinguished to soon.
I am grateful that I have a community who bands together in the dark times. I am hopeful that we will find a cure or a new treatment to make these days fewer and farther in between.
Deep inside, I feel some type of survivor’s guilt because my daughter has been spared thus far while others grieve the children they have lost. I question my efforts and wonder how much more fundraising it takes to save our daughters.
I feel terrified because I know that monster lives in my house too. I’m afraid because even seizure control doesn’t mean that Alyssa is safe.

Obviously, the stomach bug attacking our house is never ideal but, as someone who struggles with self-care, being forced to slow down was something of a gift. I needed the time to sort through what I was feelings and to recognize that what I’m really feeling is all of the above. My broken, tired spirit needed some time off to rest and begin the healing process. I needed some sick days for my soul.