E11: Learning to value our connections

What butterflies and my son have taught me about social connection

My 10-year-old son was born a social butterfly.

Seamus spends a chunk of each day calling friends and family for quick video chats or requesting playdates to watch movies or play soccer games in our basement. At social events, he often tugs on my arm or gestures to have friends greet one another. He has caught me off guard by pulling me abruptly in or out of a conversation to meet yet another friend. Like a butterfly, he flutters around spreading his subtle brand of joy and pollinating connections everywhere he goes.

As I have gotten older, I’ve noticed how my social connections have become more fleeting, tenuous, and transactional. Many of my daily contacts are over emails or text messages and occur less frequently than I’d like in person or over a phone call.

What is unique about this social butterfly is that Seamus arrived into the world with a rare genetic condition called Angelman Syndrome caused when a few chromosomes were clipped between conception and birth. This microscopic event radically changed his life trajectory. As a result, he struggles to decipher words on a page and strains for short phrases to get his ideas across. For ten years and counting, Seamus has struggled to communicate and be understood by almost everyone he encounters.

I recently learned more about the metamorphosis process that makes a caterpillar a butterfly. It’s far from the story of The Hungry Caterpillar I read as a child. A caterpillar enters into a messy process during which it hangs upside down, stops eating, and becomes a soupy mix of nutrients and half-formed parts before a butterfly can emerge.

When I am with Seamus every day, I don’t always see the butterfly. Instead, I find myself groaning at a caterpillar inching its way across a branch unable to fly and unwilling to move at “my pace” or with the world speeding by him. I’ve grieved milestones his peers have hit effortlessly, such as first sleepovers, playing on a baseball team, or solving two-digit math problems. Seamus may still get there, but it will take him much more time and practice.

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A few months after he was born, my wife and I noticed he was not sleeping well. He dozed in small bursts until his eyes popped open, searching anew for food or comfort from an adult. Initially, we wrote off his sleepless nights as colic and plowed ahead, raising him and our oldest daughter. But, as we approached his first year, Seamus was still not talking and continued to sleep fitfully.

When he was two years old, we had him assessed at a nearby clinic after our growing concerns had not abated. It was determined he was far from meeting developmental milestones. Peers his age were chattering, running around, and engaging in imaginary play. So, we reluctantly enrolled him in early intervention services assuming he just needed a quick boost to help him get caught up.

When Seamus entered elementary school, the gaps between him and his peers became painfully evident. I cringed when we left him in his kindergarten class, grateful for all the support he was receiving, but aware it was not going to be enough. We tried everything to help catch him up and fit in with his classmates. As more educators worked with him, the sanguine story we clung to was not playing out, as he was sidelined during most school activities. His path was becoming clearer and it was far different from the one we had imagined.

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As caterpillars journey from land-based creatures to airborne fairies they must shed parts of themselves during the process. A caterpillar can’t go through its full process of transformation without slowing down its development and re-inventing itself in an entirely new way.

Like a butterfly, Seamus attempts to pollinate connections that often go unnoticed unless you slow down and pay close attention. In a world where connectivity is expected to be instantaneous and virtual, he operates at a different frequency relying far more on facial expressions, emotion, and gestures rather than words.

As he sparks yet another connection, I find myself hesitant to pick up the phone or meet up with friends. Seamus effortlessly brings people together for hugs as I send texts, emails, or scroll in search of a fleeting connection.

It was unclear to scientists if an adult butterfly could remember what it learned as a caterpillar. Recently, studies have begun to show that butterflies can recall memories they had as caterpillars such as pleasant or odious scents before and after the metamorphosis occurs.

I remember what life was like before our son began his journey with us. I can vaguely recall what it was like to be 10 years old, unencumbered by the churn and weight of “adulting”. I now strive to create a childhood for Seamus that reflects his dreams, desires and wishes rather than imposing some version of what I think his life should be.

Our metamorphosis continues despite my efforts to resist it. I am just beginning to realize “knowing” Seamus requires a constant process of shedding parts of myself and a vision for life that I can be reluctant to leave behind.

Seamus arrived into this world with a set of challenges that I will never fully understand or appreciate, but he also came with a set of wings to inspire me and many others.

He has taught me about a form of love that can only be earned from embracing a gooey blend of acceptance and vulnerability. He’s taught me to embrace this messy middle by learning to laugh more and give up control. Perhaps most of all, he’s reminded me to slow down to nurture relationships in a world that lures me to make connections through screens and social media.

Human connection is critical for our well-being and survival. Yet, I can spend a whole day without noticing its presence and value in my life. Whenever I pick up Seamus from school he never fails to greet me with a magnanimous smile and says, “we - best - friends” - instantly signaling our deep connection. Before he leaves school, he always turns back to wave at someone to acknowledge their presence and support.

Seamus keeps his social encounters short and sweet (“talk time”) as many of our friends & family can attest. His exchanges last about a minute or two before he abruptly hangs up or gets distracted by something and wanders off. But, in these brief moments, he appears present, grateful, and excited when someone wants to engage and makes the time to connect.

Although our family’s journey with Seamus has not always been easy or straightforward, he keeps moving us onward from one flower to the next, forming new connections with a twinkle in his eye, smile, or high-five to share.

When I slow myself down enough, I am sometimes lucky enough to catch a glimmer of the butterfly in action, hoping one day I’ll learn to fly along with him.