Updated: December 18, 2015
Originally Published: June 11, 2015
The narrative I wish to convey does not center on the loss of our daughter, Lily. While there is an abundance of literature by mothers who have experienced the death of a child, which provided me solace during our grieving, this story focuses on the child we still have with us.
Throughout Lily’s journey, my partner, Tom, and I were engulfed in a whirlwind of medical emergencies—seizures, CPR, airlifts, and ambulance rides. For our then 5-year-old son, Max, the carefree days of preschool and backyard playdates vanished. However, amidst our preoccupations, we inadvertently continued to nurture Max. The seemingly trivial aspects of life suddenly morphed into the foundation that kept us grounded.
One specific activity became a source of comfort for Max and me: strolling. Max has always had a passion for the outdoors, a sentiment I share. As a baby, when Max would cry, we would venture outside to sit in the grass, waiting for whatever nature had to offer—a crawling ant, the rustle of leaves in the wind—these simple moments brought us both tranquility and allowed our day to progress.
Unbeknownst to us, nature emerged as our refuge once again. When we relocated from our quaint home on Bainbridge Island to a small rental in Seattle to be closer to Seattle Children’s Hospital, our daily strolls resumed.
These walks, whether brief or extensive, provided a structure for Max and me to bond, unwind, and engage in playful antics. Eagerly, Max would put on his bright blue Crocs, exclaiming, “Mom, can we go for our stroll now?”
During Lily’s brief life, we took countless walks together, but one in particular stands out. It had been a particularly challenging morning when Lily experienced a seizure, her small body trembling, heart racing, eyes rolled back. As was customary, Tom and I sprang into action. He called 911 while I packed our hospital bag. He hurried downstairs to await the emergency responders while I contacted Seattle Children’s to inform the on-call neurologist of our arrival. Tom left with Lily in the ambulance, sirens piercing the stillness of that Saturday morning.
As I stood on the porch, listening to the fading sirens, Max and I heard a distant rhythmic sound. His eyes lit up with curiosity. “What is it, Mom?” he asked, shaking his hips to the beat. “I’m not sure!” I replied, puzzled by the source of the music. “Let’s find out!” Max exclaimed, already slipping on his Crocs. “I’m right behind you!” I said, grabbing my shoes and jacket.
Max eagerly pulled me down the stairs and onto the main road. As we approached, the music became louder. Max ran ahead, laughing, his face beaming with excitement, momentarily forgetting the worries of the morning.
We discovered a large gathering at the nearby ball fields, where hundreds of participants donned purple T-shirts, walking around the track, accompanied by an energetic DJ. Max joined the throng, reveling in this unexpected joy. When the DJ played Salt-N-Pepa’s “Push It,” Max danced without a care in the world, and I joined him, our laughter echoing in the air. This moment of joy was deeply needed and cherished, a memory among the many strolls that we hold dear.
I often reflect on Lily’s profound love for Max. She would watch him with unmatched attention, her eyes sparkling. Throughout her life, Max expressed hopes for Lily’s future, believing she would grow up and one day become a mom, imagining her disabilities would fade away. His innocent optimism brought us strength during difficult times. The bond they shared only enriched our hearts rather than breaking them.
Now, three years later, Lily continues to impart lessons to us. We welcomed another daughter, Emma, a few years ago. Max often recounts stories of Lily to her, sharing memories of their time together and how wonderful a sister she was. We remain grateful for the life we have and continue to marvel at our amazing family. I count my blessings every day for my sweet Max, my child who remains with us.
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Summary:
This narrative reflects on the experiences of a family coping with the challenges of raising a child with severe health issues while cherishing the joys and bonds formed with their surviving child. It emphasizes the power of simple moments and connections, and how love transcends loss, continuing to shape family dynamics.