This narrative is not about the loss of our daughter, Lily. Many mothers have shared their experiences of losing a child, and those accounts offered me solace during our time of grief—they illuminated a path through my heartbreak. Instead, this is a story about the child we were still nurturing.
During Lily’s struggle, my husband Jack and I were engulfed in a whirlwind of medical emergencies—seizures, CPR, airlifts, and ambulances. For our then 5-year-old son, Max, the carefree days of preschool and backyard playdates vanished. Yet, amidst the chaos, we unconsciously tended to Max’s needs. The seemingly trivial aspects of life began to unite us in our shared journey.
One particular activity became our lifeline: strolling. Max has always had a passion for the outdoors, and I share that love. As an infant, whenever he cried, we would escape outside, sitting on the grass to see what might distract him—a wandering ant or the gentle rustle of leaves. This simple act had a calming effect on both of us.
As we transitioned from our cozy home on Bainbridge Island to a small rental in Seattle, closer to Seattle Children’s Hospital, our strolls became a cherished routine. These walks—sometimes brief, sometimes lasting hours—provided a framework for Max and me to connect, relax, and share laughter. He would grab his Crocs, the bright yellow ones adorned with monkey charms, and eagerly ask, “Mama, can we go for our stroll now?”
We took countless strolls during Lily’s brief life, but one stands out vividly. It was a particularly challenging morning. Lily had suffered a seizure, her small body trembling with distress. Jack and I quickly fell into our established routine—he called for help while I gathered her hospital bag. As he went downstairs to await the ambulance, I contacted the on-call neurologist to inform them of our impending arrival. Jack left with Lily, the siren piercing the tranquility of that Saturday morning.
As I stood on the porch, waiting for the sound of the siren to fade, Max and I heard a distant thumping rhythm. His eyes lit up with curiosity. “What is it, Mama?” he asked, shaking his little hips to the beat. “I don’t know!” I replied, equally intrigued. “Let’s go find out!” Max shouted, already slipping on his Crocs. “I’m right behind you!” I called, grabbing my shoes and jacket.
Max eagerly led me down the stairs and up the street toward the source of the music. As we approached the main road, the sound grew louder. In an instant, Max was running, his laughter echoing as his smile widened, momentarily forgetting the fear and sorrow of Lily’s seizure.
We arrived at the expansive ball fields near Green Lake, where hundreds of people in purple shirts were walking around the track, energized by a DJ spinning lively tunes. Max joyfully joined the crowd, completely absorbed in the moment, dancing to Salt-N-Pepa’s “Push It.” He laughed and twirled, as if the weight of the world had been lifted, and I found myself joining in his joy. That day remains a cherished memory, one of many beautiful strolls we tucked into our hearts.
I reflect on Lily’s deep affection for Max; she would watch him with an intensity that surpassed her gaze for anyone else. Max often pondered Lily’s future, believing she would grow up and become a mother one day, envisioning her disabilities fading away. His innocent optimism uplifted us throughout Lily’s journey. The bond they shared expanded our hearts immeasurably, allowing Max to know his sister in her final months.
Now, three years later, Lily continues to teach us. We welcomed another daughter, Mia, a few years ago. Max shares stories of his sister with her, reminiscing about the joy Lily brought to our lives. We remain grateful for everything we have and continue to marvel at our incredible girl. I count my blessings for my beloved Max, my child left behind.
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In summary, this narrative highlights the journey of a family navigating grief while cherishing the love and memories of those they have lost, emphasizing the importance of connection and resilience through shared moments.