The Brief, Wondrous Life of Little Leo

We lived in Hudson, Wisconsin, a small town along the Saint Croix River near the Twin Cities. We worked from home, Ryan in software quality assurance and myself in a new role with a health and wellness company. I’d spent the prior three years building a private massage and bodywork practice, but shuttered it in exchange for a less demanding part-time job at a personal wellness company with flexible hours that would allow me to more fully prioritize Leo.

A typical morning began at six, when Ryan and I would quietly get work done, sitting across from each other at a shared desk and enjoying coffee before Leo woke for the day. We’d hear him rustling and squawking from down the hallway around 7:30, signaling it was time to begin our daily family routine. I’d put in his contacts, which he began wearing at six months, and dress him, while Ryan prepared his breakfast G-tube feeding.

When Leo wasn’t being held, he would laugh and squeal as he played on a musical activity mat. He’d reach for brightly colored toys that hung above him, and stomp his feet on sensors that played nursery rhymes.

Ryan always had a number of computer tabs open, to research minerals, supplements, and additions to the organic purees we whipped up for Leo in our Vitamix. Our days revolved around Leo’s feeding schedule: he needed to eat every three hours to ensure he got enough calories, despite his smaller-than-average stomach. Ryan handled the bulk of Leo’s meals, cradling him in his left arm while feeding him via G-tube with his right.

We balanced meetings and workloads with Leo’s many weekly appointments—often two per day, which I took him to. He regularly saw his pediatrician, a craniosacral therapist, an acupuncturist, a Feldenkrais practitioner (someone who specializes in mindful movement), and a chiropractor. I spent an hour each day doing massage and bodywork with him, typically on the couch with Netflix playing in the background. Except for the pediatrician visits, none of the above were prescribed by his doctors. But the care and focused treatments allowed us to opt out of some of the surgeries—the doctors were surprised at the overall health of his spine, which was mobile and stable though still curved.

Leo was, in fact, exceptionally healthy. Aside from the eye surgeries, performed in the first three months, no invasive medical interventions were necessary. As he aged, things didn’t get worse. They either stayed the same or, in some cases—as with the spinal stenosis—improved slightly. Leo remained tiny in stature, delayed physically and mentally, essentially a perpetual infant.

He never learned to speak or walk, and we relied on facial expressions, body language, and gut instinct. We learned his likes and dislikes by paying attention to subtle cues—and sometimes obvious ones, like tears or smiles and laughter. His mobility was very limited. His neck was too small for his head, so he couldn’t sit upright. We set him in a partially reclined posture so he could play; he especially loved musical toys with buttons he could push with his elbows or left pointer finger.

Around his first birthday, we learned that Leo loved to be outside. When we took him to the boardwalk along the Saint Croix River and to local state parks, his eyes lit up and the laughter flowed. Time in nature seemed to energize him. That quickly became an evening and weekend routine: family walks, with Leo loving all the sunlight and fresh air he could get. We ambled through the prairies of Afton State Park, visited spectacular Willow Falls, and planned weeklong trips to northern Minnesota to enjoy the shores of Lake Superior.

He never learned to speak or walk, and we relied on facial expressions, body language, and gut instinct. We learned his likes and dislikes by paying attention to subtle cues—and sometimes obvious ones, like tears or smiles and laughter.

In our best moments, we were simply a happy family basking in the great outdoors. But children with RCDP have difficulty regulating body temperature. The Upper Midwest’s dramatic seasonal swings—sweltering summers and bitterly cold winters—were a challenge for Leo. He couldn’t tolerate the cold and heat. There were significant portions of the year when we simply couldn’t be outdoors.

Instead, we brought the outside to us. We built a spacious screened-in porch with an A-frame roof on our back deck. Ryan and I spent hundreds of hours bringing it to life over the spring and summer of 2017, while Leo played in a hammock chair overlooking the garden. In the warm months after it was completed, we spent sunup to sundown out there. But our oasis offered no reprieve from the brutal winters. We endured weeks cooped up inside and months of seasonal depression. Despite our efforts, we were unhappy much of the year.

A few weeks after Leo’s fifth birthday, in July of 2018, we sold our home, packed up our belongings, and drove west. Leo was now as old as the most generous prognosis he’d been given at birth, but Ryan and I were used to our son’s miraculous health and happiness. The specialists we checked in with annually only had positive feedback, and the more distressing details of Leo’s condition were stashed into the back of our minds. We figured it was time to find a home better suited to our son and the life we wanted to share with him.

We rented a two-bedroom apartment with a large west-facing balcony in southeast Denver, less than ten minutes from Cherry Creek State Park. By mid-July, we were regulars at the 107-acre dog park, where we took daily sunset walks along a three-mile dirt trail. One of us pushed Leo—cozy in his car-seat-mounted off-road stroller, grinning and giggling at every jostled bump, every bark—while the other wrangled the dogs: Albert, an energetic mutt, and Kaya, a mellow terrier mix. We headed into the Front Range on adventurous day trips, but simple evening strolls with the Rockies in the background made us feel at home.

In early October, we went on our first family trip to Rocky Mountain National Park, leaving the dogs at home. We felt like we were in a postcard, looking out at enormous peaks from grassy meadows and pine forests under a bright blue sky. Even though we had purchased the best off-road stroller we could afford, our options for accessible trails were limited, so we stuck to easier lakeside paths. When we were halfway around Bear Lake—one of the most popular nature trails in the park, providing mirror-clear reflections of the surrounding summits in cobalt-blue water—Leo started to cry. This was uncharacteristic: he had never been fussy. We were in one of the most beautiful places in the country with our son who loves nature, and he was upset. Maybe he was hungry or tired?

Ryan took his time driving us to the main exit of the park, toward an extension trail system around Lily Lake. I sat in the back next to Leo, comforting him with a favorite stuffed animal and a quick meal through his feeding tube. I balanced the large syringe in one hand and ran my fingers through his soft brown hair with the other.

At Lily Lake, we stepped out of the car into a gravel parking lot, the sun softly shining through puffy clouds. Leo, relaxed and full, seemed ready to hit the trail, which wrapped around the turquoise lake with huge views of Mount Meeker and Longs Peak. Again, however, about halfway around the lake he started to cry.

Instead of hightailing it back to the car, Ryan unclipped Leo’s restraints, pulled him out of the stroller seat, and held him. Leo stopped crying immediately, and we continued our stroll. Barefoot and wearing jean shorts designed to fit a three-month-old, a Where the Wild Things Are onesie, and tiny tortoise-frame sunglasses, Leo lit up in his father’s arms. Ryan cradled him facing outward, so he could experience the scenery as easily as we could. I followed behind with the stroller, taking in the swooning reactions of fellow tourists to Leo’s chubby cheeks and giant baby-toothed grin.

From that day forward, aside from visits to the dog park, we were done using Leo’s stroller. Over the next two and a half years, we carried him along more than 1,000 miles of trails all over Colorado.

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