It was Advent when I began reading It Is Good To Be Here: A Disabled Woman's Reflections on the Sacred Wonder of Being Human [affilate link] by Christina Chase (published by Sophia Institute Press, December 15, 2019). As my energy slipped away, one by one, my other reflection guides and meditative booklets and Jesse Tree intentions slipped away. But day after day, I returned to this book of reflections that approaches the life, incarnation, death and resurrection of Christ not from a teleological or theological perspective, but from the perspective of a woman who lives with Spinal Muscular Atrophy, who has lived with it, three times past her life expectancy, who had questions that must be answered in order for her to make sense of the world in which she exists.
As I read, the unborn child within me kicked and hiccupped. We were weeks away from her birth, and after her birth, another week away from the less invasive, less expensive lab tests that would settle the question of whether or not her genes mimicked those mutated genes of her big brother, Peter, whose condition causes him to lose excessive amounts of salt and makes him TPN dependent. All nine months I had wrestled with myself and the angel of peace. As my mind grew overwhelmed with the physical exhaustion, I found the temptation to anxiety stronger than ever. They call these babies rainbow babies. Perhaps because they stand to some as a sign of hope after the storm or a promise of life after great loss of life. That image did not resonate with me.
She has a brain, unlike the daughter before her, and a nose and two lips, unlike the brother before her. Her existence felt more like the nighttime match of Jacob. I felt somehow I would walk away with an injury that will never heal, a kick in the hip from an angel of God as a blessing. I was afraid. And even now that I have her, I am afraid.
My son is only four years old. I look at him and can see the fullness of life within him. I see his joy. His central line catheter is part of his body. His doctors are part of his family. The
hospital is the place where he gets stickers. San Francisco is a fun day-trip where everyone is excited to see him.
He is only four years old. And I am thirty-four. With the exception of some difficult months
of pregnancy, I have spent 34 years able-bodied and loving it. So in my limited perspective, in my relishing of the movement of my muscles, I easily forget that this is not the only way. That a disability, even a crippling disability in the case of Christina Chase, does not mean a diminished life.
In Advent’s time of expectation, I felt afraid. When I read her book, her straightforward, yet poetic words, I remembered the truth. Through my pregnancies I held fast to the image of the Virgin Mary, whether she stood at the foot of the cross or whether she faced an empty manger. In It Is Good To Be Here, I am reminded of what I see when I put aside everything and let my eyes rest on the fierce activity of a four-year-old boy with a recent iron infusion. Nothing can stop him.
There is a movement against the language of disability to differently-abled. Along the lines
of Thomas Aquinas and Aristotle, I believe that we have an ideal, the way we were meant to be. Yet in every way, we somehow fall short. That does not mean the ideal did not exist. It would be better if my son would eat. It would be better if he had been born with premaxilla, a columella and two front teeth. It would have been better if my daughter had had a brain.
Chase writes, “The perfect human being - God in the flesh - did not use divine power to
overcome struggle or avoid hardship. He used divine power so that he could suffer, too, and by so suffering, be able to love in the most profoundly complete and unimaginably powerful way possible: not only as God, but also as man. Christ's very real temptations and struggles are cosmically important because, by going through them, Christ sanctifies the battles within each and every one of us, proving that they are not obstacles to our joy as fulfilled persons.”
It would have been better…But because of it…we are better.
Of her parents, she writes, “the momentous day of my diagnosis was also the first day that they began to discover their own deep strength and unique gifts. They possess understanding, acceptance, patience, selflessness, generosity, and undaunted joy — strengths and gifts which were not readily apparent in their grieving, but which slowly unfurled within them. Love was the key that opened their hearts to Divine Grace, so that they could recognize the truth, beauty, and goodness of self-sacrificing love and be fulfilled and who they were created to be. Love was the key that opened their eyes, so that they could see the truth about themselves, their children, and the terribly beautiful and sacred wonder of human life.”
My daughter turned one-month-old today. She is as healthy as the three oldest children in our family. But I am not. In caring for her, I come back to Chase’s book. I think of what she wrote of Christ. “See the wounds in my hands…” Through Chase’s words I experience the invitation to show Christ the wounds I received in our suffering, and to trust that through these wounds, through Christ’s willingness to suffer all so that he could suffer alongside me and my children, I can trust he will make me new.
Kathryn is a Northern Californian wife, mother of five children on earth and three in Heaven, speaker, newspaper reporter, columnist and author of Journey in Love: A Catholic Mother’s Prayers after Prenatal Diagnosis and upcomingbook, Peace in Pregnancy: Devotions for the Expectant Mother. . She splits her time reading, writing,homeschooling, attending to her Peter’s medical needs, and shuttling him to appointments at University of California San
Francisco while listening to her favorite podcasts. To read more of her writing, go to www.kathrynannecasey.com.