BY BLYTH LORD

This past Christmas I took a walk along the same Massachusetts coastal road where I had walked 14 years ago at Christmas just weeks after my daughter and nephew had both been diagnosed with the devastating genetic illness Tay-Sachs disease. We knew these beautiful babies, ages 6 months and 18 months respectively, would be gone within a few years. My memory of that walk 14 years ago, including how I felt and what I thought of every sight and sound, came back to me clearly: fragile, afraid, sad—so deeply deeply sad—I had looked at two seagulls riding the wind over the tan seagrasses on the bluff, against the pale blue sky, and thought, How will I ever behold something so peaceful and beautiful again and see it as peaceful and beautiful? Will I ever see the good in anything again? My mind had skipped then to the next question: How can this beautiful and peaceful thing actually be happening when my world is shattering? Why hasn’t everything in the natural world stopped to mirror my pain and honor my grief? Asking these questions, I didn’t feel betrayed by the natural world exactly. Rather, I felt like I was on the cusp of learning something big, scary and important. I suspected I knew what it was: I was about to learn the meaning of surrender. The natural world—and all that it sweeps up along its way—marches steadily on, and it was for me to find my pace alongside.

I was right. This past Christmas marked the 13th anniversary of my nephew’s death and the 12 1/2 anniversary of my daughter’s. During the months that followed the diagnoses, my husband, brother- and sister-in-law, and I bumbled into our pace. We loved our children fiercely and did everything within our power to keep them comfortable and happy. We took them to the mountains, to the streams, to the ocean. We fed them chocolate. We blew bubbles and danced. We lay on the summer grass and we fell asleep on the beach. We cuddled on sheepskin rugs by the fire. We watched golf on TV and read books on the beanbag chair. We also wrestled with seizure medications, secretions, and life-threatening pneumonias. We witnessed our children losing all of their gross and fine motor skills and the light in their eyes. We watched their bodies grind down slowly until the only thing left was their spirit and their love radiating out from their quiet forms. And we surrendered. We surrendered like the seagulls that ceaselessly ride the currents of air above the bluff. We surrendered like the coastal bluff that erodes bit by bit into the ocean with every fierce storm. We surrendered like the houses that fall with the bluff onto the beach below and into the ocean beyond.

But here is what I also learned: even as we surrendered our children’s bodies to the unrelenting disease that would not, could not be stopped, we did not surrender their lives or our authority over their story. Our children had beautiful full lives and their story lives on every day in our deeds and in how we see the world and reach out to all the other families finding their way.