parenting Archives - Page 30 of 47

A Moment Of Lucidity

I came home and everyone was sitting at the kitchen table. The topic of conversation was about how good a day my son had. A smile flashed across my face. We haven’t had a lot of those lately, and this sounded like a really good day.

My wife made a strong case for possibly his best day in months as she described what had happened. She told me that his aide at work commented about him being his old self. My son jumped in, adding emphasis to his trip to the library and the Lego club he discovered there. The energy in the house was amazing, and we held on to it all evening.

Over the past few months, we’ve been adjusting my son’s medications. It is a hard time for everyone as we try to manage the seizures and side effects that always follow. Insomnia, fatigue, and emotional and behavioral issues disrupt everything about his life. I saw the turmoil inside of him taking a toll, and his bouts of sadness shred my heart to pieces. I was so happy for him to get a win.

It wasn’t until we started to get ready for bed that we noticed that he didn’t get his morning medication. In the 1,128 days that we’ve been giving him medication for his seizures, this is only the third time that we screwed up. In the past, if we get off-schedule for his dosing, we saw signs that raised an alarm. He might have a seizure during the day or more during his nap. But this time, there were no signs like that. Only a really good day.

We scrambled to get him back on track, but the inevitable happened. He had more seizures that night than he has had in while. The next day, his behavior was erratic and it took most of the day to get him settled down. Over the course of the next couple of days, both his seizures and his behavior started to level off.

Before we knew about the missed medications, we thought that we had cracked the code. His head has been swimming in medication for so long but we continue to look for the right mix. We lower the dosage on ones that put him in the haze and increase the dosage on ones that help his seizures. We thought that with this latest combination we found that balance.

But instead of a solution, what we spotted was an anomaly. A single, dangerous moment of lucidity. I picture him suspended in a sea of medication. It slows his movements, makes it hard to think and to see and to be himself. That day, he was finally able to reach the surface. He was able to take one big breath and see the world around him. We could see him, too, as his head broke into the open air. Then we watched as he was slowly pulled back under.

Was this a glimpse of the boy behind the seizures and the medicine and the side effects? Is he gone again? Lost beneath the surface of his condition? Or was it a coincidence? He has had some pretty good days before. Are we are trending in the right direction and that really good day was a sign of things to come?

The answer to those questions is the same frustrating answer it always is. Wait and see. It’s the same answer when we change medications. It’s the same answer when we start a new treatment or therapy. Everything is so unpredictable that we just have to wait and see. But this time, the stakes seem higher because we’re trying to figure out if what we saw was our son or a mirage.

Deep down, I know what the answer is. The reality is that it was my son. But it is him on the other days, too. He is whoever he is in front of us on any given day. That’s the reality of his condition. The good and the bad. The sweet, gentle boy and the sad, angry boy. The lucid and the drugged. The boy who can face any challenge and the boy who wants to hide and be alone.

Sometimes, I get so wrapped up in the differences between the two that I wind up chasing the mirage. I focus on the way things should be because I want his life to be easier. To be better. But when I do that, I leave my son behind. I miss out on the gifts that we are given instead of simply being grateful that my son is here and that he had a really, really good day.

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.