Today is a significant date for my family. But for me, dates hold less meaning than they once did. I'm aware of important/painful dates, but because every day and every movement is so difficult, they affect me no more than last Thursday or next Tuesday. Dates are important to my husband. They renew his grief. He feels the pain deeply on days of significance and that's how he deals. That's how he remembers. Neither of us is right or wrong. We just process differently.
So, what happened two years ago today? Today is the day we actually lost our son. It was the last time we truly saw his eyes. The last time I heard him say, "Mama." The last time he ate ice cream. He had been doing relatively well in the PICU, and was sitting up and waving at the nurses as they walked by his room. He was a shameless flirt, and they encouraged it. The new night doctor asked if we felt comfortable moving back to the neurology floor, which was typically our home base. I looked over at him and he smiled at me, as he played with a toy. He looked like he was doing slightly better, I guess. He'd been playing. He'd been eating. And he'd certainly been flirting. But, something inside me said no. The truth is, I'd been hearing this guiding voice within myself for much of his journey, but hadn't fully recognized it at this point. Still, I trusted the feeling and asked if we could stay just....one...more...night...
Forty-five minutes later, it happened. Easton had been laughing at a card someone had sent him. When you opened it up, it played a song with silly high-pitched voices. Jeff and I were cracking up at how funny he found that card. Suddenly, he seemed to shift his eyes to the right and kept them there. We thought he was playing. No violent movements, not even a tremor. After a few seconds, his eyes returned to their original position and he laughed at the card again. Jeff and I exchanged a confused, but not overly alarmed look, and continued playing with him. Then, a minute later...the same "game." His eyes shifted and wouldn't come back to center for any reason. We knew. It was happening again. This was a seizure. It was new and it was different, but we didn't need any medical personnel to tell us what was happening. We saw it, we heard the silence of it. And most horrifically, we felt it. We felt that ball of fear in the pit of our stomachs jump to our throats. It twisted and turned and was tormenting us once again. We tried everything to break that trance. Jeff grabbed the card we'd been playing with and begged him to look at it. "Here Buddy, look at the card. Come on Easton. You like this card. You can do it. Hear the song? It's right here. See?" Nothing. No matter how hard we tried, the seizure got to keep our boy until it decided it was done with him for a moment. Then they just kept coming faster and faster....
I remember each time Jeff would grab the card and ask him to look. I can still hear his voice go from soothing urgency and pleading to all out desperation and screaming..."LOOK AT THE BOOK, EASTON!!! COME BACK!!! SEE DADDY!?!?!? I'M RIGHT HERE!!! PLEASE!!!" I had been screaming too, but I can recall that when my husband started yelling, I stopped in my tracks. I said nothing. I responded to no one. I climbed into that bed and I picked my baby up and wrapped my arms all the way around him. I let silent tears fall and pressed my lips to the top of his head. I spoke only to him when I whispered, "It's ok, Baby. I know it's scary. I know it hurts. I'm right here. And Easton? I love you. I love you. I love you. I love you..." They came in swarms. White coats everywhere. Orders shouted. Explanations given. As if we'd never been here before. Oh, I'd been here. And I was smarter this time. I was thinking about and honoring what no one would say out loud. This is your last. It's your last real sniff of his hair. It's your last full body snuggle with the boy you know. They added medications, added more IVs, and finally came at us with intubation equipment. I held that child until they moved me from the bed. I was taking every last second. Before I knew it, intubation was complete. Life support. Coma. Gone.
I began to hear buzzing around my head. I eventually realized that its source was the voices of the practitioners offering explanations of what would happen next. "We'll give him this medication to stabilize him, and then we can form a plan from there. We think this first dose should help significantly, and then we can work on what to do next." No it wouldn't. It wouldn't work and some very quiet, still part of me knew that. I stared at the mouths connected to the people who were trying to offer solace. They were moving. I knew that. Words were coming out. I could see and even understand. But, it wasn't real. Nothing was real after that moment, and I knew it. He was gone. My baby was gone. We were there for another month, chasing numbers and seeing progress and decline. His physical body left on December 8, 2012, but we lost him long before that.
Why do I share these things? Why am I so public with such painful, gut-wrenching stories? Because GODDAMMIT they're true. They're real. They happen. Every day, in fact. I could tell you all kinds of stories about how moments with my son were all love and sunshine, puppies and unicorns, but that wouldn't be true. We had the beautiful and we had the horrific. I acknowledge both, and by sharing both I believe I bring more truth and light to the beautiful moments. And we had those, often. If you ever had the privilege of simply looking into my boy's eyes, you know this.
November is epilepsy awareness month. Epilepsy is a disorder that affects 1 in 26 people. It does not discriminate. It doesn't care how tall you are, how "good" you are, or even how beautiful your baby is. It's a disorder that is wildly misunderstood. It has no outside markings. That's a blessing and a curse. Because you can't see their illness on the outside, more is expected of them. People with epilepsy are living in your world every day, and they're trying desperately to not only function but to enjoy life in a body in which their brain betrays them, sometimes hourly. Not all seizures are noticeable. Can you imagine being an intelligent business woman with goals and plans like everyone else, but wondering if you'll be able to get through a coherent sentence that day? Perhaps you'll have an important meeting with your boss, and you'll stop mid-sentence. Not because you are ill-prepared, or indifferent about the significance of that meeting, but because your brain says it's epilepsy's turn to have you. So, instead of being rewarded for the work you've put in to today, you'll stop and stare off as if you have no care in the world, and all the while your brain is raging a war. Or maybe you're just a kid at school and you want to do something as simple as play at recess with your friends. Can you climb the jungle gym? Probably not, because what if epilepsy decides today is his day and your hands stop working and lose their grip? So you stay on the ground, while classmates laugh at your inability to join in something so simple.
I'm not asking anyone to join a cause. I'm not asking for anyone to champion something simply because I happen to be passionate about it. I'm not asking for money. I'm simply telling you what I've seen and what I know, in hopes of inspiring some compassion. No, you cannot see that they are sick, but they are fighting a very real battle every day. Yes, they may receive funding to help with medical expenses, but one cannot possibly understand the cost of therapies, medications, doctors, and hospitalizations until they've experienced it themselves. And yes their caregivers can be difficult at times, but she's exhausted, she's out of ideas, and she's terrified beyond the comprehension of her soul. Compassion. Love. Share these things this month of November, and remember a little curly-haired boy who said "Mama" for the last time on this very day, two years ago.