Learning to have a quiet hope in the midst of heartache
This year, I’m learning to have a quiet hope. My eight-year-old daughter has Down syndrome. Her already winding path took an unexpected turn at just six months of age, when a relentless storm of seizures wreaked havoc on her brain and body. The disabilities and delays left in the wake of her seizures touched every aspect of her life.
As my husband and I navigated her diagnosis, our family’s journey became a slow, steady pilgrimage into the unknown. Week after week, my husband and I sat on the physical therapy mat with our daughter, willing her muscles to awaken from their slumber, praying for the static in her brain to quiet down. In the midst of her struggle, we fielded questions from well-meaning friends and family, asking when she would take her first steps or speak her first words. We didn’t have answers.
Progress was achingly slow, and at times our efforts felt like a lost cause. During the pandemic we shifted to virtual therapy sessions, and clung to our computer screen, the lifeline to our daughter’s potential. As the isolation deepened and our hearts grew heavy with uncertainty, I reached a point where hope seemed as fragile as my daughter’s body, ready to bruise with the slightest touch. My husband persevered when I could not. Though I had slammed the laptop shut, finding that its quiet hum of hope had gone silent, he kept showing up for those virtual therapy sessions. He nurtured a flicker of expectation even when I had almost surrendered to despair.
As time passed and the world emerged from its slumber, we resumed our weekly treks to hospitals and clinics, parking our cluttered minivan in reserved disabled spots. Today, she’s in second grade, still unable to pull herself up, but …