– by Brad Fisher (reprinted with permission)
My one-year-old daughter was recently diagnosed with a terminal genetic disorder.
Most of us go through our daily lives experiencing death from a distance. We talk with our friends about this person that is ill or those people that were unfortunate to have recently lost someone close to them. Rarely do we look into our own child’s eyes and think about what we would do or how we would feel if they were to die instantly or from some terminal illness. When we do, we can’t think about it for long because it is just too horrific.
Well I have become a parent of a child with a recently diagnosed terminal disorder. I won’t get too descriptive about the disorder because what I really want to talk about is grief, living, dying and death. My beautiful daughter Shira has SMA or Spinal Muscular Atrophy type 1. The prognosis is a 30% chance of living past one year and a 15% chance of living past two, and after that it is anyone’s guess but most of these kids die very, very young.
What is it like to look into a beautiful, eight-month-old baby girl’s eyes knowing that her time on earth is going to be short? Devastating, catastrophic, horrific, apocalyptic are not strong enough words to describe my breaking heart. When your own flesh and blood starts heading down that long, lonely road to eternity, you feel like your own soul is…
