Tag: family

The Weight of Hope

I was having a conversation with my goddaughter who recently underwent surgery. The topic of hope came up, and how it was hard to have hope when there is a history of disappointment in the outcomes.

I have often felt the same way. It’s been difficult in the 10 years that we’ve been navigating our son’s epilepsy to always maintain a sense of hope. We’ve tried multiple medications, the ketogenic diet, and he’s had both VNS and DBS surgery. But with every medication, diet, and device, he continues to seize most days, in addition to the other challenges that he faces mentally, physically, and emotionally.

It made me think of the notion that “hope floats.” Hope bubbles up to the surface and can sit on the water, no matter how hard things get. It can be like a lifesaver, keeping the body afloat. But when the vessel is full, hope rises to the surface and floats away, falling over the edge into oblivion.

I’ve come to believe that hope is dense and heavy, and why carrying it can sometimes be exhausting. There were times—after another failed medication, after another seizure-filled night—when I wanted to let go of hope completely…to just set it down and go on without it.

But I learned that the people around me can carry some of that weight, and that is what I and the people around her who love her will do for you, I told her. We will carry hope, and we will fill your cup when you need it.

“But what if my cup is full of other things?” she asked.

I nodded in understanding. When hope is absent, other things will fill that cup. Fear, trauma, hopelessness, despair. It can feel like there is no room for anything else.

The good news about hope, I explained, is that it’s denser than whatever else might be in the cup. When we pour in hope, it will displace and push the other things out.

Hope isn’t always easy to carry; sometimes, it feels more of a burden than a lifeline. But we don’t have to carry it alone, and when we are able, we can carry it for the people we love.

No matter how heavy it feels, hope is still worth carrying.

The Clothes Make the Man

My wife joined a band last year that plays regularly at different restaurants and venues in our area. My son and I try to go to every show, taking in a set or two as we have dinner together and watch our matriarch do what she loves to do and does so well.

A few weeks ago, I was waiting for my son to finish getting ready so we could go to a gig. I was wearing a T-shirt with her band’s name and jeans. My son came around the corner sporting blue jeans, a black on-brand Marvel shirt, and a bright red blazer on a hanger over his shoulder.

“Nice,” I said as we headed to the car.

After we parked, my son stepped out of the car and pulled his jacket from the hanger over the back seat. He slid each arm in turn into the coat and buttoned a single button below his chest, and we headed in.

When we entered the venue, my wife saw her tall, handsome son sporting a bright red blazer. She came over, gave him a big hug, and told him how good he looked. She brought him to the stage, and I played paparazzi, taking pictures of the dapper gentleman and the singing star.

We made the rounds to greet the band, and each of them commented on how tall my son was and how sharp he looked in his jacket. At our table, the waitress also mentioned his blazer, and I could see him carrying himself more confidently and maturely. Sitting across from me, he looked five years older.

The clothes make the man.

“Man.”

It’s such a loaded word. He’s the size of a man and wears men’s clothes, but inside, he’s still the same boy who, for many years, would go to every doctor’s appointment in pajamas or a costume. I watched his face as he sat at the table obsessively struggling with a Rubik’s Cube. His brain wouldn’t let him stop, but it wouldn’t help him remember or apply the techniques to solve it.

The gap between his outward appearance and his internal workings continues to widen, as does the gap between his development and that of his peers. These gaps are getting harder to reconcile, and they stoke my fear of him being misunderstood by the outside world. I try my best to push those fears away as he looks up at me. I smile, and we talk about his strategy to solve the puzzle and listen to my wife’s voice fill the restaurant.

After dinner and between sets, we said goodbye to my wife. She again commented on how good my son looked in his jacket, and I saw him stand a little taller. He carried that height from my wife’s table and the door, growing even more as a handful of random patrons also commented on how good he looked in his red blazer.

“I feel like a celebrity,” he said as we stepped through the door. In addition to his bright red blazer, he wore a priceless, confident smile.

As we walked to the car, I couldn’t help but marvel at how much that red blazer seemed to transform him—not just in how others saw him, but in how he saw himself. For a few hours, he wasn’t the boy with special needs or the countless doctor’s appointments. He was the tall, confident young man turning heads and making impressions.

While I know the gaps will always be there, that jacket gave him a taste of a world where he could be seen without his struggles, even if only for a little while.

Rock On

The image above was 10 years in the making.

The photograph on the left was taken in July 2014. We were in Philadelphia ahead of our eventual move from Colorado. My wife and son had a long week of exploring and house hunting, and we thought we’d unwind and play games. About an hour after that picture was taken, we’d be standing in the lobby waiting for a taxi and watching our son have his first seizure.

Over the next 10 years, we’d see our son have countless seizures. We’d have many nights where we thought we would lose him. We would spend months in the hospital saving his life and then years trying to rebuild what was damaged. We would struggle to find his place in the world.

The photograph on the right was taken at Dave & Buster’s a few weeks ago after our son’s last school day before winter break. As I walked around the corner and saw him pick up the guitar, I had the image of my present-day and my son 10 years ago, like two different realities, crashing together in my mind.

While we’ve had struggles and challenges in the last ten years, the significance of that moment was that we’ve also had successes and accomplishments. Our son is 15 now, and we’ve had so many years we weren’t sure we would get. He plays baseball, enjoys gaming and streaming, and has friends. He’s in a school for kids like him, which gives him a place to learn and grow.

When the picture on the left was taken, we didn’t appreciate how little knowledge and control we had over the future. Later that night, any vision we had for the future was shattered. The picture on the right reminded me that we can never predict the future. We can only learn to embrace every moment, victory, and opportunity to pick up the guitar and rock on.