Epilepsy
At some point in the demo, he asked me about the fear of parenting a child you could lose at any moment. I told him that it’s always there, and then, without thinking, I said “that’s why we travel.” When the stress and emotions get to be too much, my husband and I load our kids up in the truck and haul our 5th wheel somewhere. I think it is something of a carpe diem thing for us. We embrace the days we have because we don’t know how many more there will be.
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.
I am writing this post from the Starbucks in our children’s hospital. For once, I’m not here with Alyssa. She is spending this rainy, Saturday afternoon at a family birthday party while I’m in the city with one of her brothers. He is here to spend a few hours with kids like him, boys and girls who have siblings with…
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.
It is football season in Texas. Every Friday night, half the population of our tiny town crowds into the bleachers and cheers for our high school team. My husband and I are not exactly sports fans but every year we make an appearance at the homecoming game. (For my non-Texas readers, that is the biggest home game of the year…
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.
I don’t believe that everyone has to be a winner but I also recognize that not everyone is playing the same game. I’m not asking that Alyssa be given some patronizing certificate simply because she has a disability. However, I think that it is time for schools to recognize that different kids have different goals and they should be recognized for achieving them.
It is always complicated for my kids when they see their biological family but we thought they could handle an extended visit with one of their siblings because of some extenuating circumstances. Instead we spent about two weeks in absolute crisis mode as attachment issues reared their ugly heads. I kept my smile on though, at least in public.
