Tuesday, July 12, 2011

The Work of His Angel, Complete

This past Saturday afternoon, I stood on the beach in Jacksonville, FL, under a threatening sky of quilted purples and grays and deep blues, with the Atlantic Ocean at my back and an entire country before me. There, I watched as Noah Coughlan led a pack of runners through the parking lot and onto the sand for the last 50 yards of a 2,464.18-mile journey that began in Oceanside, CA 132 days earlier, on February 28 - fittingly, World Rare Disease Day. The other runners pulled up at the spot where the waves lapped against the shore, but Noah ran into the surf, shoes and all, overcome with emotion and exhaustion and enormous energy all at the same time.

I won't even pretend I have the talent to find words that could possibly capture the grandeur of the gift Noah gave families like mine. All along, he meant to tell our story to the rest of the world. In the process, he carried me, and undoubtedly others, out of the dark world of Batten disease and into the light. At times this year, I've wanted to quit. My sister isn't well. The little girl I fell in love with is still in there, but Batten disease casts a long shadow. With each month that goes by, her light burns a little less brightly. On July 24 - just 12 days from now - it will be five years since the day a geneticist told my parents to go home and love her; that she would die young. Those words, and the pages and pages of Google results for 'Batten disease' that corroborated them, seemed so hard to believe then. Five years later, the cold, cruel reality of Batten disease has hardened in me.

As I watched Noah wade into the ocean, however, something washed over me, a rhythmical, spiritual feeling unlike anything I'd ever experienced, and I knew at that moment that a miracle had unfolded before my very eyes.

I wouldn't necessarily consider myself superstitious, but I do believe that God works in mysterious ways. In the aftermath of Noah's finish, the clouds at our backs grew darker and darker, but the sky above the ocean remained astonishingly clear. It wasn't until much later that those clouds finally burst apart and rained down upon us, the work of His angel - for now - complete.


  1. God be with you in this battle, and God Bless Noah for his Heart and drive! Can't wait to meet him!

  2. What a great story; it was wonderful to meet you. Your passion is both inspiring and contagious~!
    Heather Allman...mommy to Tyler age 10; JNCL

  3. Hi Heather! It was great to meet you as well. Thanks for reading, and keep up the fight!