I feel your presence. I know when you are lurking in the background. You are waiting for your opportunity. You wait until a moment when her body is vulnerable, when she is tired, when she is ready to let the world fall at the wayside as she drifts off to sleep. You have her all figured out and yet we know little about you. Except we know when you are coming.
Your aura shows itself in two obvious ways.
Some days you seem like you are trying so hard to breakthrough that she is literally coming unglued by the tiniest hint of your existence. She is hard to calm. She screams. She hits herself out of frustration. Her behaviors make her father and me prepare. We are extra vigilant on these days as we know you’ll find your way to the surface somehow. All we can do is wait.
Or, when she’s not angry because of your aura, she is extremely excited. She laughs uncontrollably. Her tiny hypotonic body constantly fidgets while her joints are so fluid she can contort into any position. She is like a noodle if we pick her up. She just slips right through our arms. She can’t concentrate. She just has to find peace through her obsessive sensory seeking. She tries to pacify your desires. Again, she knows you are there. This aura is worse than her angry aura. It’s worse because laughing should be done out of happiness, but you rob the authenticity of a laugh from her. That type of laughing means you are near. But how do we stop you?
You will find a way to interrupt her brain regardless of what we do. We feel helpless as her parents. You have become our worst enemy.
You almost always show up during her sleep. You have robbed her of sleeping in her own bed. We know you most likely won’t, but we know you do have the capability to kill her. I’ve seen virtual friends grieve the loss of their children because of you. I am scared. I don’t want her to die. We wait anxiously for a device to come in the mail. It will tell us when you are present. We will be alerted so we can help. But until then, in between her father and I, she sleeps. It’s the only way we can protect her. She needs to know she isn’t alone if you show up. You are so silent that even a video monitor with sound wouldn’t detect you. I know you are there when I am awakened by a firm grip around my arm. Her hand, so delicate and petite, holds me tightly. Sometimes it hurts. I tell her she’ll be OK. It’ll be over soon. Her hands and feet are clammy. Her legs tighten. She looks around. Is she scared? Her body feels scared, but the look in her eyes tells me she’s not. She is blank.
“Say Mom,” I tell her.
“Mom,” she repeats.
I hear the words. I’m led to believe you are leaving, but her grip gets firmer. She holds on as if she is falling. Is she dreaming? Is this a nightmare? We’ve never caught you while in the hospital. In five years, we’ve never caught you. We submit her to strange medical practices that she does not understand, but it’s the only way we can catch a glimpse of you on a monitor. But you never show up when we need you to. What are you? And where are you? We need answers. Her neurologist doesn’t know what to think about you. She is as confused as we are. How can we make you go away? Her body starts to calm. My arm is freed. She lets out a big yawn, rubs her eyes and drifts back to sleep like you never happened. It’s over.
It’s over for her, but for me it is not. I try to shut my eyes yet my heart feels as if it’s pounding out of my chest. My mind is racing. Thoughts that just won’t shut off. I Google everything I can think of. I look at the clock. It’s been an hour since you showed up and I am still wide awake. Dawn is near. I keep telling myself to go to sleep, but I’m worried. Will this ever stop? Are we doing everything we can? Will she be okay? The thoughts start to fade and my eyes begin to rest. What feels like minutes later, my alarm goes off. Did I even sleep? Can I put on a good face today? I stroke her hair. I rub my hand on her head. I imagine her brain and all of the chaos that is finally resting. She is safe. We made it another night.
I quietly whisper, “Lola. It’s time to get up for school.” She stirs and nestles in closer to me.
I say it again only louder this time, “Lola, honey. It’s time to wake up.” She opens her eyes. They are dark. Should I have let her sleep a bit more? She says, “Wake up,” so up we get.
It’s a new day. She gets a fresh start. There is little evidence of you. She has left you behind. In fact, she begins her day with new words. This is my sign that you will not win. She will keep fighting you. She’s resilient as am I. We will continue to keep you at bay because you don’t belong in our lives.
I’m pleading with you. Please leave her alone. Just let her be a five-year-old little girl with a hopeful future. She has enough struggles without your presence, so leave her in peace. We are grateful that you do not show up often, but I will gladly trade me for her. She deserves to have a life without you. Her father and I will stop at nothing to give her that. We will fight you. We have to beat you. We just have to — or I will die trying because she is my life. My free-spirited, independent, beautiful, determined, caring little girl. She’s our Lola. And you won’t define who she is. I will make sure of it.
The incredible picture of Lola was digitally drawn by the talented children’s book author, Tatum Flynn.
Join us on Purple Day, an international day of epilepsy awareness, Saturday, March 26th by wearing purple in honor of Lola and the millions of epilepsy sufferers around the world. We need to create awareness of this awful neurological condition that is robbing people of their lives yet is rarely talked about. Wear #purple4lola and talk about why you are wearing purple. It is a simple act, but advocating for epilepsy awareness leads to funding for research which will hopefully get us one step closer to an actual cure. Most anti-epileptic drugs (AEDs) have detrimental side effects and are given in conjunction with other AEDs, yet there are no studies that tell us mixing these drugs are safe. We can’t keep using our children as lab rats with the hopes a combination will work. They deserve better. We must find a cure.