At 21 weeks gestation, we were informed that our daughter, Annie, had a genetic condition associated with profound disabilities. Thus began the most difficult but, ultimately, most enriching journey of our lives.
We realized it was highly likely that Annie would require life-saving interventions in her infancy. From the outset, we wrestled with an agonizing, moral question: Would these interventions and the preservation of her life be in the best interests of our daughter and our family?
To make an informed decision, we began to research. We discovered children who were certainly very impaired, and we were afraid. However, as our knowledge increased, and we met more families with children deemed to be ‘severely disabled’, our fears were alleviated.
Shortly after Annie’s diagnosis, I attended the funeral of a young man with severe cerebral palsy, who had never walked or talked. The midweek service was filled beyond capacity. After the service, I spoke to his teacher. Tears fell freely from her face as she told me that her student had ‘changed her life’. How could that be?
Children with Annie’s condition seldom live into their teens, yet we have observed that when their child dies, the families are absolutely [...] continue the story