One out of 100 every babies is born with a heart defect. My son is the other 1%. I am the other 1% of mothers. I am the Wyvern who faces mountains of medical bills and an ceaseless barrage of fear. I am a heart mom in the Heartland, and I am not alone. We are the other 1% of America – not the ones with the millions and billions of dollars and $100,000 Birkin Bags. We are the 1% with million dollar babies, and the chest tubes, and the endless scars. There are other percents, cancer Wyvern moms, Cystic Fibrosis Wyvern Moms, Cerebral Palsy, Muscular Dystrophy . . . we are bigger than that well known and well funded 1%. We are Wyvern, on the fringes of traditional parenting and battling every day for our children’s health.
We are the “other” 1% that people don’t want to cover in news stories because our tales are too complicated, too messy, too scary to can into a sound bite or a two minute clip. We are here, in the shadows, unrecognized. . . the other 1%.
But tonight, oh tonight, one of us stood in front of the nation. One of us testified to what it is to be the other 1%, to the fear and the isolation. Stacey Lihn spoke for the Wyverns and the Dragons of endangered and lost motherhood. Thank you Stacey for making us so very proud. May you fly high tonight on your Wyvern wings and know you did right not just by your own daughter, but by all of our sons and daughters. You shined the light on the other 1%. God bless you, and God bless us all, 100%!