Measuring

Shortly before Sandy died, my father told me that hers was the saddest story he’d ever heard.

Yes, and I want the world to know. I want the world to change. I want us to stop destroying the brains of our babies before they are born.

Not only was Sandy's life destroyed by her lack of judgment and impulsiveness, equally significant was the fact that Sandy could never measure up to anyone’s expectations. That may be the cruelest part. We exacerbate the damage by expecting FASD children with hidden disabilities to function normally. They can’t. On some level they know it. Constantly meeting with failure, they're set on a negative course early on.

Yes, her story was sad, but looking at it a different way, perhaps the important thing is not whether she measured up to society’s values.

Sandy forced us to confront our assumptions. It was painful and messy to shed expectations, but raising a child like Sandy, our family had no choice. She made us let go of shortsighted goals. She helped us to reach beyond ourselves and discover strengths we didn’t know we had. Sandy’s gift was to open our hearts.

Shortly before Sandy died, she told me she’d had a happy childhood. And for the last years of her life she was in a loving relationship with a young man who truly cared. Measured by a different yardstick Sandy’s life was not sad. Measured differently she achieved what some people never have. Measured differently she gained a voice in the fight against fetal brain damage. These are the only ways I can measure now, because I loved her and because I need to believe her life mattered.