I followed my son as he ran on to the field at the football stadium. He sprinted down the same tunnel as the players, past the same motivational signs, and on to the same grass. Underneath his coat he wore the team jersey but with their dark green helmet clearly visible on his head. We stood on the field and looked at the 60,000 seats from the same perspective that the players do. The experience was very, very cool.
I was grateful to be standing on the grass with him. I smiled as I watched his face wear a combination of amazement and excitement. This wasn’t an experience that many people get, but it was one of many that my son has had. When he was in the hospital, he met athletes and superheroes. He attended movie premieres and dance recitals in the lobby. He won bingo and has appeared on the hospital’s closed-circuit TV. He was in a fashion show and a music video.
Thinking back on those experiences, I wonder how many of them we would have had if my son hadn’t had epilepsy. Not because they were at the hospital, but because I wouldn’t have taken advantage of them. Or I would have let my wife take him by herself because I wouldn’t have known how special those moments were. I would have missed how brave he was raising his hand to ask the ultimate frisbee team a question. I would have missed how special he felt seeing a movie before any of his friends. I would have missed the look on my son’s face standing on that field. I would have taken those opportunities for granted and missed out on them completely.
As grateful as I am for those opportunities, I struggle with the unfairness of it all. Why my sweet, innocent child was burdened with such an unfair, unrelenting condition. Why he walks around in a fog of medication. Why he has difficulty processing and why he is always exhausted. Most days, the scale seems very much tipped against him.
And yet, these moments make him smile. They let him be a normal kid. They also make him feel special. They’re a gift from the universe trying to balance out the hard stuff that my son goes through every day. They are also to teach me to appreciate the opportunities and to be present during them with my son.
I don’t know if the scale will ever be even. As his father, nothing can undo the memories of how bad things got for my son. But the part about being present? I’m grateful for the lesson.
Also published on Medium.