Category: parenting

Where Care Lodges, Sleep Will Never Lie

I walked from the living room to the kitchen, passing the door that led down to my son’s room. Out of the corner of my eye, I noticed a tuft of red hair sticking through the doorway. I stopped, tilted my head to the side, and saw an eye widen with the realization that the person it was attached to had just been caught.

This was the third time he was out of bed. He was restless and did not want to sleep alone. I slowly pulled open the door and asked him what he needed. “I was wondering,” he said, looking down at the floor, “if someone wanted to lay with me downstairs.” During the last few weeks, when his seizures were worse and when we were on the road, we often slept in the same bed. Now that we were home, we were transitioning back to our normal sleeping arrangements. This anxiety was an anticipated side effect. On the first night, he was so exhausted that he fell asleep in his own bed before he could plead his case for one my night in ours. On this second night, though, following a long afternoon nap, he was in a better position to resist.

“Come on, buddy,” I said as I led him back down in to his room. I climbed in to his bed and he followed, laying down next to me and putting his fingers in his mouth. By the light of his nightlight, I could see him adjust his body in to its ready-to-sleep position, and the tell-tale sign of impending sleep where he picks gently at his upper lip soon followed. His breath began to lengthen and, after only a few minutes, he was asleep.

On the nights that followed, we brought him back up to our room because his morning seizures had once again gotten worse and it was easier on all of us to be in the same room when they happened. No late night trips down the stairs and fumbling through the dark to find him sitting up in his bed; instead, we were next to him to reassure him and coax him back to sleep.

This has been the pattern of our lives for the past two years. When we think we are getting a handle on his seizures, we transition him back to his room. When he is in his bed, I vigilantly watch the monitor throughout the night and listen for any signs our most unwelcome intruder. When his seizures inevitably get worse again, we bring him back in to our room and spend the night uncomfortably cramped in a small bed, waiting for the sounds and uncontrollable movements that accompany the attack on my son’s brain.

If I seem tired, it’s because I am. Sleep is sporadic and short and only serves to keep me functional the next day. Some days, it’s barely enough to keep the lights on, but I find a way. Because most of us that are living this life don’t have the luxury or desire to stop because if we do…what we miss could be everything. So we stay on watch, careful and committed, for as long as we are needed.

This is what it is like to be the parent of a child with uncontrolled seizures.

Care keeps his watch in every old man’s eye,
And where care lodges, sleep will never lie.
― William Shakespeare, Romeo and Juliet

August 25, 2016
Owning My Duality And Being Seen

“Well,” I said, “twenty minutes before I got here, I watched my son have a seizure on the living room floor.”

The room fell silent.

What had started as a casual conversation about our personal lives and what we allow to escape turned in to an honest conversation about what it means to really know another person, and I dropped a bombshell.

I felt the emotion in my voice as the statement left my mouth. The quivering that comes from keeping my despair in check. I thought of the other seizures he had that day, and the one he had at 3AM as I walked in to his room. He was on the floor, changing his pajamas because he had an accident from an earlier seizure when another one hit him. As I reached him, his slurred words told me he had another bad seizure, and he cried.

I didn’t bring that up, though, so in the grand scheme of things, it was only a little bombshell. But it was enough. Maybe too much.

I rarely talk about those details. While friends, families, and coworkers occasionally ask how my son is doing, those glimpses can’t tell the full story. His condition is central to our experience, but the details of what we go through every day rarely cross the invisible boundary between our world and the one outside our walls. When I step out my door, I leave that struggle at the threshold and become the person that I need to be to fit the situation that I am entering.

There is a wonderful Ted talk by Ash Beckham where she talks about owning our duality. We should not be polarizing in our views…we shouldn’t have to choose between this or that. Instead, we can be both. Ash didn’t have to choose between being an aunt and an advocate, she could be both. She could hold those two things at the same time. Through compassion, empathy, and human interaction, as complex individuals, we are capable of holding so much more. She goes on to say that if people don’t see those things we hold or those things that we are, then they can’t truly see us.

I went back to that video as I was writing this post. I thought about how I don’t connect deeply with many people, and I wondered how much of that was because I don’t let those pieces of myself come out. I’m expecting to somehow build meaningful relationships without sharing those things that are most important in my life. If people aren’t given the opportunity to see how deeply I am affected by what is happening to my son, then how can I expect them to see me?

I need to own my duality. I need to be able to hold many things. And I need to be able to share those things with the people around me if I ever hope to build the types of relationships that are built on compassion, and empathy, and on truly being seen.

It’s not an easy task. It’s not easy to change the years of programming and overcome the societal expectations of men that left me closed and guarded and hidden. But it’s important. Maybe one of the most important things I can do for myself, and certainly an important example that I can set for my son so that he doesn’t go through his complicated and difficult life alone. He, too, will be many things at once, and I would like for him to be able to be those things at the same time, and to be seen for the brave, resilient, complex, and special individual that he is.

August 18, 2016
Reality Always Wins

It’s easy to let denial take the lead. If we make it a day or a week without any seizures, it’s easy to let what is happening to my son fall to the back of my mind. There are moments when I let myself believe that we made it through it, that we figured it out and that the seizures are gone. Even if it’s just for a moment or an hour or a morning, I welcome the ignorant bliss that denial carries with it and pretend that this is not happening to my son.

The problem with denial, though, is that it doesn’t last forever.

Even without seizures, there are daily reminders that destroy the illusion. There are the pills that fill his tiny hands each morning and night that try to keep the seizures at bay. There is the diet that wreaks havoc on his body and takes away his freedom to enjoy the terribly delicious food that other kids take for granted. There are the behavior and attention issues that come with his condition and the side effects of his medication. There are the days when his balance is off, and when he falls a lot…a glance at his constantly bruised shins serve as his battle scars.

It’s hard to be in denial when you’re confronted with the effects of epilepsy and seizures every day. Ignoring these effects or simply wishing that things were different isn’t enough to keep reality from bleeding in to the fantasy. No matter how hard I try to keep it afloat, this denial bubble always bursts and sends me crashing back to earth. My shins are bruised, too, from bending over to pick him up off the ground. My heart is bruised from watching this happen to my sweet, innocent, and special boy.

The problem with denial is that it doesn’t last forever.

Reality always wins.

The problem with denial is that it doesn’t last forever. Reality always wins.

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July 7, 2016
Fatherhood And Preparing My Son For A Future With Epilepsy

This post is part of the Epilepsy Blog Relay™ which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!

Today is Father’s Day.

This morning, like most weekend mornings, I’m going to wake up to the sound of my son pushing the door to our room open, the squeaky hinges announcing his arrival. I’ll open my eyes and watch him toss his green and white blankets and a few of his stuffed animals on to the bed, climb over me and lie down in between my wife and I. He’ll put his fingers in his mouth, close his eyes, and snuggle up next to us, the sound of him sucking his fingers right next to my ear keeping me from returning to sleep. I don’t mind, though. This is how most weekends go, and I wouldn’t want it any other way.

It’s in these early morning hours, as I lie awake in bed next to my family, that I sometimes think big thoughts. When I was a new father, still overwhelmed with idea of being responsible for another life in this world, I would have grand thoughts about the type of world my son would live in. Would there be enough food and water for everyone? Should I be recycling more? What about clean air? Should I get a more fuel-efficient car? Should I bike to work?

As he got older, and as I settled in on the idea that he’s more durable than I had assumed children would be, those early morning thoughts turned to more hopeful things. What number would he wear on his jersey in the NHL? How old would he be the first time he saw the earth from space? How often would they let me visit him in the White House?

For the past two years, after my son was diagnosed with epilepsy, I started asking different questions. These questions were shaped by our experiences struggling to control his seizures, managing his medicine and the ketogenic diet, and trying to normalize his life as much as possible. Would he ever be seizure free? Will he be able to live on his own one day? How can I best prepare him for the challenges ahead? How can I teach him to love himself and believe in himself against the stigma that comes with having epilepsy?

The last question is one that I’ve been thinking about more lately. He’s only in kindergarten, but there have already been incidents where he has been made to feel different because he has epilepsy. Questions about why he misses so much school and leaves early, or the snickers from classmates that come from his bizarre ketogenic lunch that sometimes includes taking a shot of oil, I can see him starting to pull away. He’ll sit by himself, or he’ll tell us he doesn’t want to bring a lunch to school. This is already happening, and he’s only in kindergarten.

The more involved I become with the epilepsy community, the more I get a glimpse of the challenges ahead for my son. I read the callous, insensitive tweets from the uninformed, misguided people who post messages about “being glad that they don’t have epilepsy” or how a video or light show “almost gave them epilepsy”. I read the messages of sadness and despair from those living with epilepsy and the stories of discrimination, and about how epilepsy “isn’t being a real thing” because there aren’t any visible signs.

There are many mornings when I’m lying next to my son and I get scared. I don’t want that world to squash the light inside the little boy who is so brave and who cares so much for those around him and who loves and who dreams incredible things. I’m worried that I am not equipped to help my son navigate that world, and that I will fail him…fail at the greatest thing that I will ever do, and that is being a dad.

On those days, when I seem to need it most, he will roll over and puts his arm around me. I instantly feel better. I remember that the most important thing I can do for my son is to love him unconditionally, which I do in abundance.

I think about that community where I have seen so much sadness and I remember the overwhelming feelings of support and hope that are much more common. They share their stories, many of whom you may read as part of this blog relay, and I, too, am hopeful and inspired to lend my voice to the choir…to sing with them the stories of what it means to be the dad of a child with epilepsy, the struggle, the joy, and the lessons that I learn along the way.

Maybe it will be this morning, when I won’t be awoken too early by the sound of a creaking door, or him sucking his fingers. Maybe I’ll feel confident that I’m doing my part by advocating for my son, and I’ll think about how far we have come, and that I’m leading with love and helping build a foundation in him that will help him face the challenges that will be ahead. Maybe this morning I will be able to fall back asleep, only to be awoken a few hours later by the four most magic words that will remind me how lucky I am and how hard I will fight.

“Happy Father’s Day, Daddy.”

NEXT UP: Be sure to check out the next post tomorrow by Whitney Petit at Changing Focus: Epilepsy Edition for more on Epilepsy Awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com. And don’t miss your chance to connect with bloggers on the #LivingWellChat on June 30 at 7PM ET.

June 19, 2016
Inside The Circle

To the outside world, we look like an average urban family. I’m the aging dad, high (I’m still not calling it “receding”) hairline, close-cropped hair wearing city-chic because my wife dresses me. My wife, beautiful, hip with her too-cool-for-school (I realize no one says that anymore) sunglasses strutting down the sidewalk. And my son, wearing a Captain America helmet and catching air off the uneven sidewalk on his scooter.

We stop at our local market to pick up ingredients for dinner, because that is how normal, city-people shop. The shop keeper greet us with a friendly, welcoming smile and we exchange pleasantries that show that we’re local and are recognized as such. We stroll through the park to play catch and we see Jafar, the musician, and Mike, the juggler, whose names we know because we are locals. We pass them with a wave and they smile back with a hint of recognition.

There are two groups of people in our lives, those that are outside the circle and those that are inside the circle. Most of the world exists outside the circle, and they do not see the impact that epilepsy has on our lives or the complexities that we struggle with every day. When we buy those groceries, the shop keeper doesn’t know that the ingredients are only for my wife and I because my has epilepsy and is on a special diet. The other park goers don’t know that we are there only for a short time or for the first time in days because my son has enough energy to play that day.

For someone who writes a blog about being the father of a child with epilepsy, it may seem strange that I struggle with who to let inside the circle. As public as this blog is, it is still difficult to talk about what is happening with the people in our lives. How can I explain the heartache of helplessly watching my son have a seizure at the breakfast table? How do talk about why he keeps missing school? Or why he can’t do certain things or why we have to decline birthday parties and events that happen in the afternoon because he needs a nap?

Those outside the circle can never truly know us or our son because my son’s epilepsy is such a big part of our every day. Maybe I am worried about people judging him or judging us. I don’t understand how or why this is happening, maybe I’m so worried that they won’t understand that can’t let them in. It’s hard to overcome those fears, and to be open to sharing that piece of ourselves. It’s hard to trust other people, to be vulnerable, and to take that risk.

I am finding, though, that the more willing I am to take that risk and to share a glimpse of that part of who we are, the bigger that our inner circle becomes. His teeball team ask about him at every game that he misses. People at my office, friends and acquaintances that have met my son and seen him struggle react with kindness. They ask about him and pass along their well wishes. They donate when the call goes out for a charity event. This terrible condition that burdens my son and weighs heaving on our family has also revealed the gifts that come from having more people inside the circle that care.

June 2, 2016