I think all parents of disabled children have moments when they fear the future. Our yes to life requires us to constantly advocate for our kids. In Sarah’s case, her health was always in the back of our minds. Given her serious heart condition, she could live two more years or twelve. We just didn’t know. (p. 45)
All parents of disabled children have moments when they fear the future. Our yes to life requires us to constantly advocate for our kids.
As I read this paragraph, and many others, from Nancy Jo Sullivan’s new book, Couriers of Grace, my heart wrenched in agonizing clarity. It was a moment of honesty, of facing the truth about our family situation that sometimes – most of the time lately – I have repressed out of fear or anger. That truth is that our sweet Sarah, who has a rare disease called Apert syndrome, may or may not live a long, full life.
Sullivan’s account of her daughter, Sarah, who was born with Down syndrome, is a beautiful journey of love and loss. What’s so powerful about her testimony is how being a caregiver to a disabled child opened up Sullivan’s eyes to the sacramentality of life all around her. Children with special needs have a way of showing us what matters most in life, mainly through their simple faith that needs no complexities or pretenses. Their joy mirrors the heart of God, which they give to all whom they encounter.
Couriers of Grace takes the reader on a personal journey inward, gently challenging him/her to ask the hard questions of life: Am I running away from my fears or facing them? Am I staying close to the sacraments or avoiding them? Is my marriage thriving, or have I neglected my family in some way?
One doesn’t have to be a special needs parent to appreciate the gift of Couriers of Grace, but it is a particular path that other parents who understand what it’s like to be a caregiver of a disabled child will appreciate. The ultimate message is that we are not alone. We were not created to be isolated but instead to exist in community.
Complete with reflection questions that can be used for individual or group study, Couriers of Grace not only opens the necessary conversation about disability, caregiving, and grief, but it will also bring about much-needed healing to our society, Church, and relationships.
Text (c) Jeannie Ewing, all rights reserved.