life Archives - Page 9 of 11

All The World’s A Stage

Recently, my son performed in his first school play. School has been physically, mentally, and emotionally exhausting for him this year. He likes school, but it takes a huge toll on his body and mind doing full days. In an otherwise difficult year, the play was the thing he most looked forward to, so we adjusted his schedule to allow him to rehearse with his class and have a part in the show.

He worked hard rehearsing for his role. Memorization is extremely difficult for him, but he practiced reciting his lines almost every day. We’d catch him at random times singing the songs from the show as he played with his toys or started to drift off to sleep. It was the first thing in a long time that he had that was his and that he was excited about.

When the day of the show finally arrived, it started with six seizures before breakfast. He had big circles under his eyes as he slowly crawled out of bed. As it goes with epilepsy, we didn’t know why he had more seizure than normal. But we let him rest most of the day with our fingers crossed that he would feel well enough to go to the show. Even after an afternoon nap, he still seemed tired but, thankfully, his excitement and adrenaline gave him the boost he needed to make it out of the house.

My wife and I sat in the audience anxiously waiting for the show to begin. I had a big smile on my face when I saw my son peak his head around the curtain. I heard the kids getting into position and felt my heart start to beat faster. Finally, the curtain opened, and I thought we made a terrible mistake letting him do the show that night.

I could see by the look on his face that he wasn’t really present. The energy that got him out the door seemed gone. Most of the time, he looked lost on the stage, bouncing between children to try to find the spot where he should be. I felt helpless every time we made eye contact. I felt angry that they didn’t set it up better or give him a buddy to remind him where he should be. While these thoughts raced through my head, I tried to keep a smile and to be a friendly face in the audience for him.

My wife and I struggle with finding the right place for my son. Not just with school, but finding environments that are safe for him and that try to understand what life is like for him. Watching him on the stage, unable to find his place, brought that fear of him never finding that place center stage. It acted out my anxiety of what life will look like for him as he gets older because the world doesn’t know him and doesn’t understand him. I saw on that stage a future for my son where he spends his life bouncing around, bouncing off people, endlessly lost.

When the show was over, my son came running off the stage and into our arms. He was happy. He had just done something impossibly hard and felt good about himself. At that moment, everything I was feeling melted away and I held him and told him how proud of him I was.

It’s hard to not get lost in those visions of what the future will look like for my son. There have been too many times where I get swept up in those feelings and miss what is happening right in front of me, in the present where my son needs me to be. It’s in those moments where he continues to show me what he is capable of and remind me that the future is unwritten and filled with as many possibilities as it will be limitations. The only thing that is certain is what we have at this moment. As I held my son and felt his joy, I didn’t want to miss it.

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.

The World Outside

I’m lying in bed next to my son who I haven’t seen all week. With my right hand on my laptop, I reach my left hand over and rest it on his back, making sure he is still there. I can feel his breathing, my hand rising and falling with each of his breaths.

On the other side of him is my wife, who I was also missing. The last few weeks have been a whirlwind. A new job. A new house. A new school year for my son. A new medication for his seizures. A new outlook. A new focus.

With so many changes going on, I’d been so consumed with my life that I hadn’t looked up to see the world outside. When I finally did, I wished I hadn’t. The world kept turning. Things kept happening. Hurricanes, mass shootings, fear, and hatred. Human beings being cruel to each other and using their power to silence their victims. It seemed that the world had been uglier than usual in the time that I’ve been away. I felt both selfish and grateful to be away from it. To not experience it. To not get involved. To focus on my life and to shut out the world.

But that couldn’t last. The world seeped in, overflowing an already stressed situation. The combined strain tested the strength of that connection to my anchor. Our stressful lives during a chaotic time in an especially cruel world. Survival became about pursuing the path of least resistance. It was easier to hide from the world than it was to be a part of it. It was easier to not write than it was to write. It was easier to use the excuse of being too busy in life to avoid being a real part of it.

I pushed myself away from the world but I had nowhere to go. My family is my anchor, and I was thousands of miles away in every meaning of that phrase. A cross-country trip that followed added physical distance to the emotional. But on the plane ride back, I could feel the weight of the last few weeks lifting. The world in conflict sped below me as I looked out the window from a familiar, distant perspective. But it wasn’t the world I was eager to get back to. It was my family that was pulling me back, and I couldn’t get to them fast enough.

And so here I am, restlessly lying in bed next to my family in our new home. My obligations to our new life and the workday ahead steal my focus. But my son’s breath serves as a metronome that brings my attention back to this room. The cadence of his breathing and the rising and falling of my hand on his chest connect me to him. I find my wife’s hand in the same place, so we’re all connected together once again. The world outside and my insecurity conspire to keep the attention of my head and my heart. In this moment, though, I know that it will be my family that gets me through.