For families of kids with special needs, going on vacation can be hard work. In this post, guest blogger Scott Newport tells about a vacation their family took several years ago with their two sons: Noah, a typical second grader at the time, and Evan, who lived with a congenital heart ailment known as Noonan’s Syndrome. In today’s installment, Scott tells about traveling with a medically-fragile kid and about the pesky seagulls that cast a shadow on the trip.

The Shadow Cast, Part 1

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.

Meet the Family

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.

Meet the Family on Vacation

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?”

Meet the Dirty Birds

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.

Gone Fishing

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 awhile, 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.

Come Back Monday for the Rest of the Story

As you can see, Scott isn’t a big fan of sea gulls. Even so, in the second post of this series, he learns something from the very birds he considers a nuisance. You won’t want to miss what he learned in the shadow of a sea gull.

Part Two

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