Dave, Author at Epilepsy Dad

Planning For An Uncertain Future

I slid my finger up the length of the envelope, tearing it open along the spine. Pushing the sides apart with my thumb and finger, I reached in and pulled out the folded piece of paper. I lifted the top section above the crease to reveal a bold, red logo and the words “To the parents of…” introducing the rest of the text.

The form letter listed one of my son’s prescriptions at the top and used phrases like “convenience and cost-saving” and “long-term prescriptions”. After I finished reading the letter, my eyes retraced their path and scanned the paper, searching for the words that my mind refused to process the first time around: “long-term”.

“Long-term.” I raised my head as I lowered the letter down to my side. “Long-term.” The words echoed in my head. “Long-term.” My mind ran through inflated synonyms. Never-ending. Without end. Constant. Permanent. Forever. My son would be on these medicines for the rest of his life. The letter became impossibly heavy and pulled itself from my fingers. It landed on the floor without a sound.

When my son was two, long before his first seizure, we set up an educational savings account. It’s one of those investment accounts that provides interest-free growth and tax breaks along the way, but the money must be used for college. We’ve been funding the account ever since, even after my son started struggling with memory recall and attention. He still does and, if things get worse or if his condition changes, he may not go to college. I struggle to acknowledge that possibility. I should look at other options that hope for the best but aren’t penalized if things don’t work out, but I feel like I have given into his condition. That his epilepsy would have somehow won and stolen my son’s future.

Looming larger over me is the idea of what would happen to my son if my wife and I passed away or were unable to take care of him. Our parents are at an age where caring for a child isn’t an option. Before he had epilepsy, we had asked friends in Colorado to care for him. But now, I look at how complicated and hard life can be dealing with epilepsy. I imagine the commitment to care for him as a huge burden that I can’t bring myself to ask anyone to bear. I need to write a letter to our friends and ask if they would be willing to care for a beautiful, amazing child that has epilepsy but I can’t. I can’t risk the feeling of rejection, of rejecting my son, if they say “no”. And I can’t face a world where that’s all I hear and where my I feel like I will be leaving my son alone.

Until I do, we’re sitting in this terrible space where nothing is decided and where everything is at risk. Instead of being brave, of doing what needs to be done, I have been frozen. Being responsible feels like an impossible task when it involves admitting to the cruel condition that my son may live with forever. I’m frustrated not only by my inaction but because I know the worst outcome would be for someone else to make the decision for me. It makes me feel like a terrible parent. It makes me feel like I am letting my son down.

It’s hard to figure out how much hope to have, how much reality to let in, or how much to commit to the possibility that there is an equal chance that things get worse as things getting better. It’s not that I thought my son would be cured. It’s not that I didn’t think that he would be on these medicines for the rest of his life. But I also didn’t actively think that he wouldn’t be cured or that he would have to stay on his medicines for anything longer than today. I didn’t open my mind to either possibility. Instead, I kept my head down and tried to live in the present without looking too far into an uncertain future. Reading the letter reminded me that my son’s epilepsy and his medications will exist beyond today, whether I wanted to face the idea or not.

The reality is that these types of things will continue to weigh me down and keep me feeling stuck until I take action to remedy them. The best thing I can do is to acknowledge that the future is uncertain and to take control of the choices in front of me.

Maybe facing the situation will help. Maybe writing about it will spur me to action. Maybe the new year will renew my strength that last year depleted.

I picked the letter off the floor and put it on the desk in the pile of things that I need to do. It’s time to be brave. I pulled out the chair and sat down in front of the computer and started drafting a letter of my own.

“Dear friends,” it began.

My Little Miracle

When my son was first diagnosed with epilepsy, I didn’t think we needed a miracle. At first, we simply hoped that the seizure he had would be his only one, but it wasn’t. Then we hoped that the medicine they put him on would prevent more seizures, but it didn’t. Still, I believed in the science and the medicine and I thought the doctors would figure out what was causing his seizures and they would consult the great book of diagnoses and prescribe a way to make the seizures stop. But they couldn’t.

The first time I sat next to my son’s bed in the hospital while he was in status epilepticus, I started to lose hope. Or maybe I needed more than hope. I watched the EEG on the screen above his bed spike and flash a constant red alert. The seizure count continued to climb. I thought about racing against the power meter on the side of my grandmother’s house. My cousin and I used to race to see if we could make it around the house before the reading on the meter ticked up to the next number. I was fast in those days, but as I looked up at the counter on the screen, it was moving too fast even for me.

The doctors did the best they could to slow the frequency of the lightning strikes in my son’s brain. A barrage of medicine did more harm than good, leaving him toxic and unable to move. There were a lot of sleepless nights, sitting up on the purple, uncomfortable foam bed as I watched a team of doctors circle around my son’s bed. The wires, many times reattached, that went from my son’s small head to the Great Machine carried signals of coordinated chaos that mirrored the activity by the doctors scrambling to find an answer.

As our time in the hospital continued to accumulate, so did the seizure count on the screen. The technicians reset the system a few times. They said to make sure they were getting good readings, but I wondered if it was to hide how high the seizure count was going. As bad as it is to see the number increasing, it’s probably worse to see the equivalent of an odometer rolling back to zero from too much mileage.

By the second month in the hospital, I started to lose hope. The science and the medicine weren’t finding the answer and my son was still seizing and my sweet boy turned into an unrecognizable, angry creature trapped inside an unstable shell. The child we brought into the hospital was not the one we were taking home. With my hope faltering and no end to my son’s agony in sight, I turned to finding a miracle.

Out of difficulties grow miracles. ~Jean de la Bruyere

I always thought of a miracle as one big thing. I thought a miracle meant that we would wake up one day and my son would be healed. When we sat in the class about the ketogenic diet and heard of miracle stories of children that were seizure free on the diet and were able to wean off their medication, I wanted that miracle. When we were finally able to try CBD, after seeing the stories in the news of the miracles that it had done with children that had hundreds of seizures a day, I wanted that miracle for my son, too. But none of these miracles visited us in the way that I hoped. Or maybe, not in the way that I expected.

Sometimes a miracle is not one big thing but, instead, a lot of little things. While the pills or the diet or the CBD alone did not provide relief for my son, a combination of them slowed and occasionally stopped the rampant storm inside his brain. Dedicated and persistent teams of doctors didn’t give up finding a working dose of medicine and the therapists worked impossibly hard to restore his mind and body. My son is alive, in school and learning, dancing, laughing, and playing. He’s back with us in ways that I began to think were impossible. I was so focused on the lack of one small, discrete defining miracle that I almost missed the larger one that was slowly revealing itself.

It’s easy to give up on miracles when we don’t wake up to find a healed child, a rich bank account, or a clear purpose for our own life. We think we don’t deserve a miracle because of something we did in our past that cannot be forgiven. Or we pray harder or channel our anger at God and the universe when we continue to see someone we love struggle or suffer and they do not intervene. But the secret isn’t praying harder for the miracle that we think we want. The secret is being open to the miracles that happen around us every day.

Miracles are a retelling in small letters of the very same story which is written across the whole world in letters too large for some of us to see. ~C.S. Lewis

Cornerstone

I’m a big fan of the show Westworld. Robots and cowboys. Oh, and Anthony Hopkins. What’s not to like?

Westworld is an HBO show about the dawn of artificial consciousness. Credit: HBO — *Westworld* is an HBO show about the dawn of artificial consciousness. Credit: HBO

In one episode, the characters introduce the concept of a “cornerstone memory”. In architecture, a cornerstone or foundational stone is the first stone set in the construction of a foundation. All other stones will be set in reference to the cornerstone and it will determine the position of the entire building. For the robots in Westworld, the cornerstone memory is the one that their entire identity is built around. These memories define the robot’s central story and tether their thoughts and actions to a core motivation or theme.

The humans in the show have cornerstone memories, too, just as we do in real life. These memories stir up the feelings associated with them as if the moment just happened and dictate how we respond to the world. We use these memories to remind ourselves who and what we are.

I keep going back to my son’s first seizure, feeling the fear and the sadness that I first felt watching his body tighten and his head turn to the side. I lose my breath as I remember him being unresponsive as I desperately tried to wrestle him from his seizure, the panic I felt, the helplessness. I can’t bear to stay in that memory too long.

That memory drives my present day actions and motivations. It is why I write this blog. It’s why I signed up for the marathon. The helplessness I felt in that moment and the realization that I felt lost is why I sought help to cope with the complex emotions and challenges that lie ahead. It’s why I committed to becoming a better father and a better husband, to provide for my son and my family, and why I work so hard to give them a good life.

As painful as that memory is, I try to be grateful that I have it because of how much my life has changed for the better because of it. I don’t know that a less painful memory could have had such a profound impact on how I live my life. As much as I wish my son wouldn’t have to go through any of this, I’m not sure that any other path our life could have taken would have brought us all as close as we are and I don’t want to take what we have for granted.

In Westworld, the cornerstone memory is the one story that the robot’s entire identity is based on. It’s used to keep them on a predefined narrative. If they try to imagine a future that varies from their path, the memory pulls them back to keep them within the bounds of the set story. I find myself doing the same sometimes when I try to imagine a future for my son. The memory of that first seizure tries to limit those possible futures that I can see and it takes everything I have to fight its gravity.

But life is not about one story, it’s made up of hundreds. Thousands. The memory of my son’s first seizure is one of my stories, but it’s not the only one. It has influenced my life, but so have the other memories that I carry with me. My life doesn’t have one cornerstone. It has many, creating an infinite number of buildings in complicated shapes that are still being built.

The memory of my son’s first seizure is a cornerstone, not the cornerstone. It has shaped my life in many ways but it, alone, does not determine my future. Or his. Our experiences change us by they do not control us. We are human, with unlimited potential and countless unwritten futures. We should embrace that, and we should create a future that celebrates that potential.