This post originally appeared on our previous seizure blog, http://www.weseizetheday.blogspot.com in August 2013. This was the first grand mal seizure that I had witnessed, just weeks before our wedding. 

I haven’t updated this blog in awhile because there wasn’t much to report. Adam was relatively seizure free, with a few episodes here and there, averaging about 2-3 per month. We visited with his neurologist in July and I discussed putting him on an anti-anxiety pill to stay asleep at night, since his seizures are often triggered by dreams. Adam and I enjoyed five days of fun and sun of our “pre honeymoon” in Florida and returned Friday, August 2.

Then, August 5 happened. 

Adam and I had enjoyed a nice evening at home. I made chicken, we spent some time catching up on the DVR shows we’d missed, and I went to bed around 10. Adam followed around 12. About an hour later, he started having a seizure. I woke up and got the cold packs that we use, made sure he was comfortable and noticed the time on the clock. 1:12 AM.

He asked me to talk him through it and I did, picturing a bright blue sky and helping him breathe. I was standing next to him when his body went rigid. He was headfirst into his pillow and then, I could see the movement escape him. “Adam?” I said, shaking him slightly. “ADAM!” I started yelling at him, shaking his shoulders. He was dead weight to me in my arms. I turned his head/body over when, to my horror, I saw that there was a bright path of blood leading out of his mouth. My own blood went cold. This wasn’t right. He wasn’t responsive. I rolled him on his side, and could tell that he was breathing, which I knew was the only good sign.

I grabbed my phone and frantically dialed 911 at 1:29 AM. I was already in hysterics when the dispatcher answered. “I need an ambulance! My fiance had a seizure and now he’s unconscious!”The dispatcher tried in vain to calm me down. She asked if he was diabetic. Had he had a stroke, she asked. Is he breathing? Yes. Address. Name. Spell your name. What’s his name? How old is he? Does he have a brain tumor? No, not that i know of.

It seemed like forever. “What’s taking so long? We’re just down the street! Please, send someone now!” As I waited, watching helplessly as his seizure progressed, his body pale, still not answering my calling his name.

It occurred to me, now, that I could be losing him.  His brain could have short-circuited, he could have more brain damage, and these damn paramedics aren’t even here yet! This all-encompassing panic swept my body. What would I do without him?

The paramedics arrived and I told him that he had seizures, but nothing like this. They acted like I was crazy. One actually said, “It’s rare that he could be conscious during a seizure.” They kept saying this was normal. I said through tears, “This is not normal for him.”

Within about 10-15 minutes, he was coming to, but he could not speak. He looked so very confused- I couldn’t help but think something was seriously wrong. He groaned, couldn’t form answers to the questions they were asking. Soon, they had him on the stretcher and took him by ambulance to the emergency room. I was to follow once I found his ID and insurance card. I was in such a panic- who was awake at 2 in the morning? Who could come sit with me? What was happening to him, and what could be happening to his brain right now? 

I got lost on the way to the hospital in my crazed state. We live one mile away from the hospital. When I arrived, he was in an ER room, hooked up to cords and IVs and breathing tubes. He was coherent, but looked a little confused at me.

The doctor and nurses were sympathetic but seemed to have no cause for alarm. This shocked me. I have been through hundreds of seizures with Adam and this has never happened. Later, I would find out that yes, he has had less than 5 of these seizures, ever- the last one being in 2009. (This would have been nice to know, babe!)

The ER doctor ordered bloodwork and the nurse cleaned the blood from his face as I sat next to him biting back tears. He reached up and wiped them away, saying simply, “It’s okay.” That’s his favorite phrase- whether I am worried about money, the wedding, work, or him. It’s always okay.

Bloodwork returned normal and we were sent home around 4:30 am with the diagnosis of secondary generalized seizure, or a grand mal seizure. He slept until 11 that morning, but I didn’t sleep at all. I kept reaching over and checking his heart, feeling his chest rise and fall. I needed that comfort.

Following up with his neurologist today, he was concerned with this seizure and chose to put Adam on a medication that is better for seizures. He said, “Unfortunately, it doesnt come in a generic.” Well, how much could it be, I wondered. He gave us a prescription card to keep the cost down, but when Adam returned with his pills, he told me that they were FIVE HUNDRED DOLLARS A BOTTLE.

Now, usually, I’m the strong one (or atleast I think so). I figure it out- no matter what comes our way. But I have cried so many tears this week. I am so mentally and emotionally exhausted. I cant shake the horrible flashbacks of Adam, limp and pale, nonresponsive. It terrifies me to think this could happen again.

So when he emerged with those pills, I freaking lost it. We can’t afford $500 per bottle monthly, considering this will be Pill #6 & #7 that he takes daily. He’s also, unfortunately, on the only insurance that will accept this pre-existing condition, which costs $600 per month.

But what do I do? I would give anything for Adam to never go through that again. But healthcare shouldn’t be something that you have to bargain for!  I am exploring every option available to us, but right now, those are all limited.

I love Adam unconditionally and always have, but this was the most terrifying experiences of my life. Feeling that you could lose the one person that perfectly “gets” you, the one person that you’ve pledged to spend the rest of your life with, is absolutely the most numbing notion. It freezes me with fear, so I am trying to stay positive.

This situation has reminded me that we don’t know how long we have in this life. It makes me rethink those nights I stay late at work. The Adam dates/appointments I’ve had to cancel or reschedule. No more. Work is work and home is home. Everything can wait til tomorrow. Except for him. He’s the single most important person in my life, and he always will be. The bond was have is so deep, something I dont see in other relationships. It’s a one-of-a-kind love. We lean on each other, support, adore each other. The love we have is not replaceable, so I will do everything in my power to fight, arrange, and keep him healthy, happy, and alive. At any cost. 

Before Lo was born, I was very wary of telling anyone that Adam had epilepsy. When I did divulge this information, I often received unsolicited advice, worried looks and surprise. Many voiced concerns that Adam caring for her alone would be dangerous. I’d be lying if I didn’t also have my moments of worry or anxiety with Adam caring for our child- just like any first time parent, you are unsure, your hands a little wobbly around this tiny creature, worried you will drop or break or smush them.

Even Adam voiced concerns, right before she was born, that he wasn’t up for the physical and mental challenge of caring for a newborn all day. His sleep schedule would be disrupted, likely to trigger seizures. But I know my husband better than anyone else in the world, and I know his limitations. I can see it in his eyes before he feels it; I can predict what trajectory his seizures will take and I know how to stop them in their tracks before they progress.

When they laid Lo in Adam’s arms that first day in the hospital, I held my breath. I knew that the excitement, insecurity and fear was bubbling right under his skin. I didn’t want him to overthink it. But I looked at them together, as he gazed into her sweet eyes, and his entire body was calm. He was a natural.

As the days progressed, I continued to watch for signs that Adam was becoming overwhelmed- but his body remained steadfast, holding her delicately, changing diapers, swaying her when she fought sleep. He was more in control of his body than I’ve ever seen him- because his mind knew that this was more important than anything he’d ever done before.

Before I went back to work, Adam and I had a serious conversation about his limitations. I know the stress of caring for a newborn five days a week; it’s slightly maddening. We made the decision to put Lo in daycare a few days a week, so that Adam could focus on other home duties, and rest. On his “days off”, he fills her bottles, packs her bag and he walks her to school in the morning and picks her up in the evening. When I return home, they’re playing, laughing and listening to music together.

Adam isn’t perfect with Lo, as many first time fathers aren’t. His array of seizure medication makes it difficult for him to hear behind his mind’s “white noise” sometimes, and process a little slower than others. He often doesn’t see Lo’s cues when she’s hungry or tired, and that leads to some crying fits- but we’re working on it.

Epilepsy will always be a part of our life, but it isn’t his WHOLE life anymore. His good days far outweigh the bad, and he’s found a purpose in his daily routine- to care for and shape this awesome little human.

And while I have always admired Adam for being a strong, amazing man, with scars and stories and heartbreak in his back pocket, I have grown to love him so much more when I see him with our daughter. Epilepsy doesn’t win here, love does.