Category: lifestyle

Being Seen and Unseen

My son is becoming more aware of how he feels. He’s becoming more aware of how other people see him. He’s making that connection and noticing that he’s different from other kids.

A few weeks ago, he met with his neuropsychologist and she asked him about school. He told her that he wanted the kids to look at him. He wanted to be seen. My heart broke for him. This is the age when kids start to develop friendships that go beyond an activity or beyond school. And he felt invisible.

It’s been hard for him to make those connections. In part, it’s because second grade has been tough on him mentally and physically. There have been days where he has been too tired to make it to school or stay for the full day. It’s hard to build friendships when you aren’t there. It’s harder to insert yourself into relationships that have already been established.

But there are emotional challenges that make it hard, too. He does feel different from his classmates and he doesn’t quite know how to interact with them. He doesn’t always see the line between funny and inappropriate. Even if he did, he has a hard time regulating those actions.

He is also socially behind the other kids because he was so sick and spent a lot of his time with us or in the hospital. He wasn’t going on play dates. He didn’t go to a lot of birthday parties. He didn’t have those opportunities to learn how to interact with his peers. It’s like trying to compete in a race when all the other participants had a head start. None of them are going to slow down to let you catch up, and they’re too far ahead for you to even know where the course is.

The result is that he doesn’t feel like he has a place there, or that anyone cares that he is there. School must be a very lonely place for him, but we keep pushing him to go, thinking it will get better.

Now, we’re seeing those feelings come in to play outside of school now, too. The other day, we were at the pool with friends and another group came in that included kids from my son’s class. My son got quiet and covered himself with his towel. He whispered that he only wanted to be seen at school.

At first, I thought it was because there was a history with one of the kids from that group. But I also wondered if my son was trying to separate school from the outside world. It was as if he didn’t want the feelings from school to bleed into his safe, private world at home.

I want my son to have friends, and to feel special and important. I don’t want him to feel like an outcast. Sometimes, that desire for him to fit in causes me to overreact when he is trying to be funny but crosses a line. Instead of gently guiding him to a different behavior, I say things in a way that I worry make him feel shame. Not intentionally, and not with any words that are meant to convey that message. But my frustration with the world comes out sounding like I’m frustrated with him.

It’s one thing to have the kids at school reacting the way they do. It’s another to have his parents response the same way. My son is walking around and having everyone tell him what he is doing is wrong. We aren’t seeing him or, if we are, we’re telling him it’s wrong. I’d want to run and hide, too.

I can’t control the rest of the world or how it responds to him. I can teach him the best I can how to live in it. To get him the support and services that he needs. To do what I can to structure his life the best way we know how with where he is today, knowing that will change. To help him develop a strong sense of self, but to be aware and present enough to know when that fails him. Because trying to force everything and not being aware of where he is will do more damage than the world can do to him.

But I can be more aware of how I am responding to my son and the situation. I can control my own actions and respond with loving kindness to where my son is at any moment. The last thing I want to do is to take away the one safe place that he has. I want his home to be a place where he is seen, truly seen, for who he is.

And I want him to know that who he is is amazing.

Saying Goodbye To The Past

I sat down to write a post reflecting on 2017 but couldn’t decide where to begin. To say that 2017 was a big year is an understatement. Not just globally or politically, but personally, as well.

Even narrowing my focus to our lives, I’m not sure where to start. Our lives look completely different today than they did a year ago. We might as well be two different families, tied together by the common thread of a child and a family living with epilepsy.

We sold our first house back in Colorado and used the proceeds to buy and move into a place here in Philadelphia. Our Colorado house was the one we brought our son home to and it is where we made all our first memories with him. We were able to tour it one last time before we signed the paperwork, which provided some closure. But it was not without the pains of recognition of a life that might have been.

Around the same time, I started a new job. I’m still in the same company, but doing something completely different. In some ways, I’m going back to my roots by taking on a brand new challenge. It feels good to be excited to go to work again, and to feel like what I’m doing is making a difference. For a while, it felt my like half of my life was my job and half was my family, and both were spinning out of control. Things are only now starting to level off, but for the first time in a long time, I can take a breath.

We lost both our primary neurologist and our nanny. Our neurologist was there from the beginning. She knew my son and was our lighthouse during the stormier times. When she decided to continue her studies in epilepsy, we selfishly hoped she could do it at our hospital. But her path took her elsewhere. We miss her, but she left us in good hands.

Our nanny came into our lives when we needed her most. When my son was at his worst medically and behaviorally, she jumped in and rescued us. When she left, we naïvely thought we were in a stable enough place to go it alone. But the seizures and the side effects didn’t care what we thought, and they came back with old friends. The behavior issues we thought we had overcome were back and, before we knew it, they overwhelmed us. We finally asked for help, and we’re hopeful that we were blessed again with our new nanny.

This year, like every year since his diagnosis, we’ve adjusted my son’s medications. We stopped CBD and another medication because they weren’t working for him and started a new one. We’re ending the year with fewer seizures but more side effects and trying to strike a balance. He’s still on the ketogenic diet but at a lower ratio, and I’m hoping by this time next year he will be off it completely.

My son also started second grade, which is a testament to his resilience. But it has also shone a light on his limitations. Academically and socially, school is challenging for him. We’re continuing to adjust his education plan and our expectations, but it will be a long, uphill journey.

There isn’t a moment from last year that wasn’t touched by epilepsy. Every day we face the reality that our son has seizures, and needs medication, and faces challenges. But that doesn’t mean it has to define our year or our lives.

Somewhere in the middle of this, we went on a family vacation to Hawaii. It was an opportunity to get away from everything. The seizures followed us, but the experiences we had made them feel like a minor annoyance instead of the gorilla that we deal with daily. We visited family in Florida and Colorado. I ran a half-marathon, and we did an Inflatable 5K and became Spartans as a family.

In reflecting on last year, I want to say goodbye to it. I want to learn the lessons that it taught me, but I want to focus on the year ahead. It’s important to know where you have been to know where you are going. To repeat the things that brought you joy. To avoid the things that took away from your existence. To see the things you have survived so that you know you can survive them again. But it’s also important to be present in this moment and to look forward to the next.

I have great respect for the past. If you don’t know where you’ve come from, you don’t know where you’re going. I have respect for the past, but I’m a person of the moment. I’m here, and I do my best to be completely centered at the place I’m at, then I go forward to the next place. ~Maya Angelou

I wish you a very happy new year.

epilepsy dad feature saying goodbye to past

Vincent And The Doctor And My Son

This post is part of the Epilepsy Blog Relay™ which will run from November 1 to November 30, 2017. Follow along!

I remember the first time I saw a Van Gogh painting. I mean, really saw a Van Gogh painting. I stood in front it the same way that I’ve stood in front of each of his paintings that I have seen since. I wondered about him. About his life. About his painting. About his anxiety, synesthesia, and depression. About how it all came together in brilliant color on a piece of canvas.

That was long before I knew that he had epilepsy or how much of an impact epilepsy had on his life. And on mine.

When my son was first diagnosed with epilepsy, I did what I imagine many parents do. I went to Google and searched for famous people with epilepsy. I needed to see examples of other people from history that were able to succeed in spite of their condition. I needed to know that the endless possibilities that my son came into the world with were not taken away because of the faulty wiring in his brain. I needed some hope for his future and I thought the way to find it was by looking to the past.

That my search brought me closer to Van Gogh was a bit of a mixed bag. On one hand, to learn that my favorite painter had the same condition that my son has was an incredible coincidence. When I look at one of his paintings now, I wonder how much of his epilepsy shows up in them. How much of the way that he saw the world was due to his epilepsy?

As I wrote this post, I pulled up an episode of Dr. Who where he visits Van Gogh. There is a scene where Van Gogh, the Doctor, and his companion, Amy, are lying in a field looking at the night sky. Van Gogh explains the colors that he sees and the wind in the stars and the sky transforms into one of Van Gogh’s most famous paintings. It’s hard to look at a painting like Starry Night and not think of the auras that some people with epilepsy see. Will my son see the world as beautiful as this?

“I’ve seen many things, my friend. But you’re right. Nothing’s quite as wonderful as the things you see.” ~Dr. Who

On the other hand, knowing what I did about Van Gogh’s life and how it ended filled me with dread. Did epilepsy or the medications he was on cause any of his other conditions or make them worse? Did it contribute to him taking his own life? I’ve met people with epilepsy who battle depression and I’ve read about people who lost that battle. Is that what lies ahead for my son? He’s only eight.

In the episode of Dr. Who, the visit from the Doctor is in the same year of Van Gogh’s death. In one of the final scenes, the Doctor takes Van Gogh to the present to show him what becomes of his work. The art curator describes Van Gogh as someone who “transformed the pain from his tormented life into ecstatic beauty”.

The Doctor and his companion return Van Gogh to his time and he seems refreshed. But when they return to the present, they learn that their visit did nothing to rewrite the past.

“The way I see it, every life is a pile of good things and bad things. The good things don’t always soften the bad things, but vice versa, the bad things don’t always spoil the good things and make them unimportant.” ~Dr. Who

While they were able to give him a few more good things, the bad things in Van Gogh’s life were still too much.

When I started this post, I wanted to write about epilepsy and creativity. I wanted to highlight Van Gogh as an example of someone who created amazing things in spite of his epilepsy. Or maybe because of it. I wanted to talk about my son and how he has an amazing imagination and an openness to share the way he sees the world.

But every life is a pile of good things and bad things. When I see my son’s anger rise or his mood darken, I sometimes think of it happening as a teenager or a grown man. I think about the years of seizures and medications and side effects ahead of him and I crumble.

But he is only eight. There is no way of knowing what is in store for him. So instead of letting the bad things spoil the good, it’s up to me to encourage my son to share the way he sees the world because there is beauty in that. Because there is beauty in him that the world needs to see.

When I was finishing this post, I had the episode of Dr. Who on the screen for inspiration. My son walked by and asked what I was watching, and I told him all about Van Gogh. I told him that he was a brilliant painter who also had epilepsy. I said that he saw the world in a different way and used paint to show the world what he saw because he was an artist.

My son smiled at me and said “That’s so cool. I’m an artist, too.”

NEXT UP: Be sure to check out the next post tomorrow by Leila Zorzie at http://www.livingwellwithepilepsy.com. For the full schedule of bloggers visit livingwellwithepilepsy.com.

TWITTER CHAT: And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET.