When she comes into the kitchen, hands and face covered in the last of the nearly five dollar organic strawberries, I don’t get angry. I’ve always let her eat her fill. Today her eyes look like a ghosts. I do a double take to make sure she is really there. I think, what if today is it?
In my last month of her pregnancy, I remember flipping through the channels one night when a documentary on CNN caught my attention. It was about a little girl who suffered hundreds of seizures a day, while her tired mother helplessly watched over her. How terrible a life, I thought. I couldn’t bear to watch it. I turned the channel. Nearly a year later, my third daughter Paloma, would be diagnosed with the same disorder as the little girl in the documentary. Dravet Syndrome, a rare, catastrophic form of epilepsy, for which there is no cure. I couldn’t speak the name. I feared if I said it out loud, it would be true.
In the past couple of years since her diagnosis, I’ve lost count of the number of children with Dravet Syndrome that have died. Through the wonder of Facebook, I’ve gotten to know many of these families and have scrolled daily past prayers for seizures to stop, for new meds to work, devastating posts about how their kid didn’t wake up; they call it SUDEP, sudden unexpected death in epilepsy. I’ve stopped scrolling.
I don’t sleep much at night. Instead I toss and turn and think about what song we’d play at her funeral. Maybe, Sufjan Steven’s, “Fourth of July,” “Did you get enough love my little dove” Too sad I wonder? Would we even have a funeral? Would we cremate her? I think about watching her being shoved into the fire. Her little body consumed by the flames until it was a heap of ashes and nothing more. Do they even let you watch? I can’t bear the thought, but this time I can’t turn the channel.
People ask me how I do it. How I wake up every day knowing it might be her last. Last year, on the way to the hospital for yet another seizure that wouldn’t stop, they made me sit in the front of the ambulance. I tried to look in the little window, but the paramedics distracted me with small talk. I knew it was bad. I thought, how will I tell everyone she didn’t make it this time? Instead of crying I felt removed from the situation, which I now think to be some sort of self-preservation. A mother can only take so much. I began to feel an overwhelming sense of peace as I watched them wheel her quickly in the E.R. I thought, if she dies I will be ok. I don’t know how, but I will be ok.
In the mornings I make our oatmeal and place the cannabis oil in her mouth. A ritual for us now, she opens her mouth like a little bird waiting for the worm to drop. The cannabis helps, but it’s no cure. It gives her a week or two between seizures. Sometimes I catch myself praying over her body to stop shaking before I remember I don’t believe in God anymore. There isn’t a magic man in the sky or a miracle for us. Just me watching as her lips turn blue and waiting for that long gasp of air when I know it’s finally over, sometimes fifteen, twenty minutes later.
Every day that she is here is good day. Every day that she is here, I will let her eat her fill from my overpriced fruit and let her get away with far more than her two older sisters. I take a million pictures and videos of her, just in case. I tell her constantly that I love her and always make sure to tuck her in at night, just in case. On really hard days when I just want to run away, I remind myself that my days with her are numbered. I’m not a Buddhist, but I probably should be. Mindfulness is something I’m daily in search of. All I have is the present moment with her. I must live in it. This is how I do it.