Written by Jennifer Sills, Founder, CSNK2A1 Foundation

If you know me, you know I have had an unconventional life, to put it mildly. More than anyone, I know that life doesn’t turn out like we expect. William Blake said, “The road of excess leads to the palace of wisdom.” He must have meant that the road with excessive trials and tribulations lead to the palace of wisdom. When we realized that Jules had a life-altering genetic condition, I made a pact with myself, an unrealistic contract that no matter what, we would always do things as a family. Jules would never be excluded; we would find a way for her to be included in every aspect of our lives. But as time went on, I realized that taking her places was becoming increasingly difficult, especially when it came to traveling.

LAST SUMMER (2022), we made the heart-wrenching decision to travel without Jules and go on an adventure with our son. The weight of the decision crushed me. I felt like a failure for so many reasons. Too many to list. When we got to Paris, it was heartwarming to hear our son’s observations and questions: Why are the phone numbers so long? Their license plates are different. What is the music like here? Is there bowling? Do they watch cartoons?

One morning when the boys were sleeping, I snuck down for breakfast. As I looked around this gorgeous Parisian breakfast room, I saw families on vacation with their children. I saw what I thought my life would be like. My eyes began to well with tears. Grief and sadness hit me like a ton of bricks. I had lived in Europe as a college student. I always dreamed of bringing my family back to make memories in a place where I was once young, drunk with wine and new adventures. But at that moment, I was light years away from my daughter, and our family was separated.

I excused myself and ran to my room as quickly as possible. When I entered the room, words were stuck in my throat, drowning in tears; I couldn’t speak. Jason followed me to our balcony. He thought something was terribly wrong. Finally, I was able to muster, “Everyone is fine.” But it was far from the truth of what I was feeling inside.

In moments like these, we are reminded that no one’s life turns out exactly as they imagined. And in truth, how limiting it would be if our lives followed a predetermined pattern. Life takes us on unexpected journeys with all its beauty and heartache. Our path diverges from the norm, and it becomes our unique story to tell.

While most people follow a similar pattern of getting married, having children, and watching them fly the nest, our lives are different. Jules will be with us until we die, and we save every penny to ensure her care even after we are gone. Our journey is not without its challenges and heavily weighs on our hearts.

But amidst the heaviness, I have come to realize that this journey has also brought us incredible moments of strength, resilience, and love. It has taught us to cherish every small victory, to appreciate the beauty in the simplest of things, and to find joy in unexpected places.

I don’t cry often on this journey, but when I do, it is a release of emotions that have built up over time. It is a reminder that it’s okay to grieve, to feel the weight of our journey. It doesn’t make us weak; it makes us human.

So, to anyone facing their own unconventional journey, know you are not alone. Life may be different for us, but it is in those differences that we find our strength, our resilience, and our capacity to love unconditionally. Our stories may not align with societal norms, but they are powerful, meaningful, and worth sharing.

Let us find strength in the wisdom gained from our own roads of excess. And in those moments of heaviness, may we find the courage to reach out, to lean on one another, and to continue walking forward on this unconventional path, hand in hand.