This summer, our family traveled to the shores of Lake Michigan for a weekend retreat. Packed into our vehicle along with suitcases, beach toys, and other gear, we looked like your usual weekend adventurers. Penni, my wife, sat slightly cramped in the back seat between our boys, seven-year-old Noah and four-year-old Evan. Riding shotgun with me was Evan’s nurse.
I guess I should explain that while Noah is an average rising second grader, Evan has defied all odds just by reaching his first birthday. Now, at age four, he lives with a terminal heart disease called hypertrophic cardiomyopathy and a variety of other complications brought about by a genetic condition called Noonan’s Syndrome. Hence, the nurse.
In many ways, Evan doesn’t really fit in with society. He looks a little different. He’s still wearing diapers. He takes many medications. He is fed through a tube in his stomach. He breathes through a tube in his neck and, sometimes, with the help of a ventilator. He’s not your typical kid.
As you can imagine, life with the Newport family is pretty atypical when compared to the rest of society. For instance, half the “gear” packed into our car belonged to Evan – medical equipment, extra supplies, and emergency apparatus. Even taking a family vacation was an extremely rare and very special treat for us. Evan’s fragile condition, combined with our need to stay close to his doctors and the fact that a nurse must come along, usually discourages us from venturing out.
But, despite the odds, there we were, speeding along a busy and well-groomed highway on our way to my parents’ summer cottage. As we drove, I noticed a large hill off in the distance that seemed a little out of place. Noah said, “Hey Dad, what is that gigantic mountain over there? And what is that cool looking cloud over it?”
As we got closer to the sprawling mystery hill, an unpleasant odor filled the car. Everyone, as though on cue, turned their heads toward Evan. Penni quickly checked Evan’s diaper and laughed, “Nope, not him,” and flashed us all the Thumbs Up sign. Just then, a light switched on in my head and I said to Noah, “That’s the local garbage landfill. And that cloud is actually seagulls.” The swirling mass of determined gulls circled and circled, casting a shadow onto the hill of garbage.
I thought to myself: Seagulls…definitely not one of my favorite birds! Dirty. Loud. Obnoxious.
The landfill notwithstanding, the trip was uneventful. We reached the cottage that evening, unpacked, and Noah and I agreed to go fishing the next morning.
The following morning, we drove north to a spot Noah remembered from a previous trip. We meandered along with fishing poles in hand, walking toward a red vintage lighthouse at the end of the breakwater. It was a beautiful morning and, as we walked amongst the towering rocks and broken concrete that protect the harbor, there wasn’t a cloud in the sky to cast a shadow on our father-son outing. Truth be known, I think Noah was more interested in spending a little time with Dad than in fishing. It’s a rare occasion that Noah and I can spend quality time alone together.
It looked like a few other father and son teams had the same idea as us; bobbing fishing boats were headed out of the tiny harbor with men and boys standing on the aft decks, situating their poles and gear for what promised to be a great day of fun. As I watched them leaving the harbor, I hoped that someday I’d be able to afford a fishing trip for Noah and me. But with all of Evan’s medical bills, money is always a little short. I guess that dream will have a shadow over it for a while, or maybe forever.
Breaking into my thoughts, Noah proclaimed, “Hey Dad, look! There’s an army over there.”
“What do you mean, Son?” I asked.
“Can’t you see all those soldiers on the beach?”
“Ah, okay, I see them now,” I whispered back.
Noah’s army of soldiers standing arm to arm was actually a huge flock of those dang seagulls. I thought: This time, at least, they aren’t eating garbage. But they’re crowding up the whole public beach. What a nuisance.
After a great day with Noah and a good night’s sleep, I got up the next morning and decided to go to the lighthouse again. (I’m an early riser when we’re at home, since I fill in the gap from the time that Evan’s midnight nurse leaves at 4:30 a.m. until Penni takes over at 7:00 a.m. so I can go to work.) After a short drive up the scenic shoreline road, I arrived at the harbor. It was another perfect morning: a quiet beach, the lighthouse in the distance, not a cloud in sight, not a shadow cast to darken my day.
Instead of walking down the sandy beach of Lake Michigan, I found a quiet place to park the car. I sat and watched the day develop over the lake, the water broken only by an occasional white cap making its way to shore. As my mind started to wander its way about my life, something flew past the car. I have always been a bit of a bird enthusiast, and this was no bird I’d ever seen before. I snapped out of my quiet, reflective mood and went into scientific exploration mode. Before I could scramble out of the car for a better look, the bird flew by again.
“Oh, it’s just a seagull!” I said, out loud and to no one in particular.
But wait, was that the same magnificent bird I had just seen? It was. Somehow the rising sun was in just the right position to cast a shadow on the bird and give it a glory I’d never noticed before. I was so impressed with the shadow’s effect on that dirty old seagull, I started searching for other shadows.
I studied the shadows cast by the beach’s small mounds of sand, creating the effect of rippling water. Each mound had a distinct shadow, and the shadow changed as the sun rose behind me. The shadows gave individuality to each rise in the earth. I thought that without the sun beaming down on them, the depth and height of the mounds might never be noticed. And I thought about the Grand Canyon, about how the rising sun casts blue and purple shadows while at the same time lighting up the south rim as if it were on fire.
I’ve usually thought of shadows as having only negative attributes. Like how they’d spoil a perfect day at the pool when I was a kid. Or how monsters in Halloween haunted houses always hid in the darkest shadows. Or, like when Evan was born, some people said things like: “It must feel like you are in a tunnel with no light at the end” and “It must seem like you’re under a black cloud that won’t go away.”
It’s true that Evan’s birth cast a shadow on our family. But Penni and I love our son just the way he is. Then, as now, we embrace all the light he brings to us. We also embrace the shadows cast by his life because they outline and offset each moment we have with him, clarifying the depth and height of our love.
I still don’t love seagulls, but it is funny how my perception of them has totally changed. Where I’d thought of them as a downright unwanted species, I now see them in a different light. I guess you could say I have a newfound appreciation for them. Maybe folks with disabilities-including my son-are like seagulls; sometimes they’re put into a caste and labeled “unwanted,” and “inconvenient,” and “embarrassing.” Society turns its head away when it passes you on the sidewalk. But instead of seeing people like Evan as a dark shadow, it would be great if society could see us as covered in the shadows that give depth and height and glory to life.
What I hope for now is that when the sun goes away and there are no shadows cast, I will learn to find beauty in the darkest of nights. I trust that the moon, which shines thanks to the unseen sun, will cast all new shadows for me to see. I also hold out hope that all people will learn to open their eyes and see the beauty of the shadow caste.
By
Scott Newport
