I AM Who I AM
As moms, we hold our tiny, new babies and wonder what they might do in their lives, what their giggles may sound like, who they may marry, and if they’ll live near to or far from us one day. We dream and we hope from our cultural understanding of a productive or contributive life. Once we become a mom of a child with special needs, we are often reassured by others of the unexpected achievements, or performance, that may await. Our children with special needs may speak and write, act or compete in sporting activities. They may reach the holy grail of special needs parenting and be able to work and live independently. But is that the basis of their value and their worth? And what happens when they don't, or indeed can't?
I have two children with special needs. My son has confounded predictions and expectations. Able to read and converse, joke and play, his development could easily have made me rush to reassure future mothers of all the possible triumphs that await them. I also have a daughter, a seven year old beauty, who I bounce on my knee, rock back and forth and sing nursery rhymes to. She is able to do far less than we could have predicted in her diagnosis appointment, owing to many months of regression. Does her worth shift on that basis? Is she less valuable than her brother? Not one iota.
She is imago dei. She bears the image of the “I AM who I AM” God. She is fully human, fully created and - in so being - she is essentially broken and (like all things) in need of redemption. Our children's abilities to reciprocate are, like our own, disabled. With this in mind, our comparative abilities to do—to hold down part-time work, put our own socks on, even toilet ourselves—pales into insignificance in light of what we are.
The World’s View of Worthiness
In November of 2016, the Wall Street Journal ran an article explaining the French decision to withdraw a publicly funded advertisement entitled “Dear Future Mom.” The advertisement featured children and young adults with Down Syndrome speaking to a mother who was processing the news that her unborn child carried the chromosomal disorder. It was a heartwarming and courageous effort, especially in light of the drive in Europe to erase (via early termination) any future Down Syndrome community. In Iceland, prenatal testing and subsequent termination mean that today, only one or two babies a year are born with the condition.
The advertisement appeals to the unseen potential that children with developmental conditions carry. It warns the expectant mother that the years ahead may, at times, be unbearably hard—but then it reassures them that love awaits, and highlights the milestones and unexpected achievements that may come and the relationships their children may be able to reciprocate. Throughout, the advertisement highlights the developmental returns available from a lifetime of parenting investment.
“Dear Future Mom” fights utilitarian logic with (admittedly well-intentioned) utilitarian logic. It puts the special needs child into the same worldly spreadsheet as every other child, to prove the economic or social gains they offer. In the end, despite its appeal, we Christians should resist this kind of returns-based thinking. When talking about disability, especially as Christians, we need to resist implying that anyone’s value is based on the things they may achieve.
God Made All Humans His Image Bearers
When God first reveals his name to Moses, he does so out of his being, rather than his doing. The one who created all things, flung stars into space and would shortly send locusts and part seas chose to reveal himself out of who he essentially was, rather than what he did. The pagan gods, with their distinct deliverables and demands, were no match for “I AM who I AM”. It was all in the name for him, and it is all in the name for us, too.
To be a human being is to carry what C. S. Lewis called “the weight of glory,” the imprint of the “I AM who I AM” God. We will never meet, talk to, or care for a mere mortal. My daughter, my son, a concert musician, a CEO, a person with dementia, an unborn child, you and me: we have value not because of what we do, but because of who we are, and whose we are.
So we look towards the one who made our children in his beautiful image. We find the hope and standard of worth in the words of the Almighty. For the mom of the child with special needs, the Bible promises us that love, grace, and mercy will be in rich supply as we care for, and speak for, feed and love and toilet our children (sometimes for decades longer than we had expected). Our value – and the value of our precious children – is not returns-based; it is origin-based. It is located in the indelible image of the God who says: “I AM who I AM.”
