Our lives beat with the pulse of joy and pain. These two emotions are braided into the roots of our being, mingling together and spinning us in an erratic dance called “life.” Within this dance, joy and pain swing us high in arcs of euphoria and drop us deep into suffering. There is no birth without pain, and the deepest joy is birthed from pain. When an infant enters the world, it slips into the light from the darkest place.
This pulse beats vigorously within the lives of my aunt and uncle and their family of five girls. Their youngest girl, Jessica Faith, was born with Down syndrome, initiating a whiplash of emotion circling celebration and grief. As parents, my aunt and uncle carried a weighty sense of guilt for wanting to reject their gift; in the life of their girl, they saw the death of their dreams. The future rocked and shifted, forcing them to step forward in trust. Even as Jessica’s family grieved her limitations, they found joy in the celebration of her abilities. It was all a gift.
Struggle can reveal this gift in profound gestures. In the beginning, my aunt and uncle grieved their daughter as a burden, but as they watched, small miracles began to weave together the frayed ends of the situation. They bonded with the “burden” and the scales slowly fell away. The miracle was in their arms.
The journey into the heart of God does not always follow the path of least resistance. In the midst of pain, if you open yourself to be filled, God will flood you with his presence.
As Down syndrome wove itself into the fabric of my aunt and uncle’s life, it dug up old fears. Yet God used their child to pull them deeper into a position of reliance. A loving God cannot leave his children running from their fears. We must encounter those fears to see that God has overcome them.
Jessica is now 3 years old. She runs and laughs with unrestrained passion. She shines as a slice of heaven on earth in her family, reminding them that God is present in their lives. Their family life is augmented with celebration as her list of achievements grows, as she grows into a gift of grace, an altar marking the holy ground they walk on every day.
The daily swirl of specialist appointments, questions, and frustration is still a reality; but with the daily stretch of trust they slowly grow more limber.
Jessica literally means “He sees”—and he does, even when we don’t. Inexplicable grief may rock our lives, and questions of “why” may haunt us. But within the pain there is a loving God whose heart breaks too. He can find us in the wreckage and lead us limping toward healing: because he sees.
Other articles you may be interested in:
Network: Booklet available for expectant parents of a child with Down’s Syndrome
Network: Caring for parents who have a child with a disability
Church Installs Deacond with Down’s Syndrome