Eight months ago, I held Mila as her life force was guided up and away from her body. In that moment, something changed in me. Perhaps a realization that the body and the spirit have their own distinct paths. Today, I hold my mother’s hand as cancer threatens to take her from me as well. Her body is weak. But her spirit, while quiet, burns strong as it always has.
I was seven months pregnant with Mila when I was handed this image of her profile. Her tiny nose, her mouth, her chin. At that time, I had no idea that she had a genetic disease and the effects of it may have already begun to take place. Today, we are moving toward diagnosing babies at birth. But the dominoes of genetic disease may begin to fall even earlier and prenatal treatments are on the horizon. It's hard not to stop and wonder what life would have looked like if Mila had received milasen in utero.
When Mila's life took a turn, so did mine. Today, I find myself surrounded by children with rare genetic diseases. To some, that may sound sad, but instead I feel fortunate, enriched. There is something so special about children who are forced to find ways around the inability to talk, to see, to eat, to live independent lives. The other day, I visited a Boulder friend Nina, "unstoppable Nina" as her family calls her. Nina has a rare fatal disease called Leigh Syndrome. She's just Mila's age. She has brown hair and brown eyes. As I put my hands on her warm skin and watched as her curious eyes spoke to me, I pretended for just one moment that Mila was beside me.
