Post Author: The Rev. Kit Lonergan
At 20 months and 2 days old, my son extended his hand towards his sister, and waggled his fingers back and forth. It was his first ever unprompted wave. As all three of us stood there in the haphazard transition between car and door of childcare, I whooped and clapped and started an awkward mom-version of the running man, complete with child in arms. My son was confused and my daughter even more so, at this unusual burst of awkward energy so early in the morning. But this was a touchdown for him, for me. It was a WAGGLE deserving of end zone celebration.
There is a mantra in the world of kids with Down syndrome that I have come to learn in the last two years: ‘Celebrate, Don’t Compare.’ Children with Down syndrome are late developers, hence the usage of the word ‘retarded.’ The milestone calendars so carefully laid out in baby books and emailed to your inbox are of no use to a family with a child with Trisomy 21. Those are more of a GPS—which will lay out when you will arrive at the place you desire to be. Families with Down syndrome are given only a wide open paper map. There are places to go, but arrival time is entirely independent of your carefully laid plans.
The crunchier among us might see this as a good thing—‘Hey, my kid will get there when he gets there,’ laissez-faire approach to parenting. I was similar with my daughter. But for a parent who is constantly asked how old her child is when they exhibit no signs of development appropriate to their age, a lack of a timeline is disheartening. Laissez-faire is a beautiful, intentional, approach. When involuntarily taken out of one’s hands, laissez-faire or no, the waiting, as Daniel Tiger might say, is hard.
Hence the mantra. It was gently given to us by the first of our neonatologists. It was quietly repeated by our four therapists. Seasoned parents of children with DS lived it out in front of us again and again. Celebrate, don’t compare. Have joy in what is happening, rather than lining the present up with your neighbor’s children or your own former expectations.
As a follower of Jesus, a priest and generally sunny kind of lady, I wanted to love the mantra. I wanted to believe in it with my whole heart. I wanted to experience a conversion of faith, à la Paul, to be spun in a new direction with a zeal and penchant for inspiration. But, time and again, I would sneak a look at what we were missing on those charts; find it hard to be around our similarly aged little friends and their proud parents; get irrationally angry at emails for diaper coupons which assumed the age-related abilities of my child. Although I am a priest who has preached many an Advent sermon on the gifts of waiting and being present to the season, I found the waiting hard. It was a struggle, as our faith journey so often is, to feel in my heart the truth I knew in my head. It was even harder attempting to be patient and faithful in front of (a generous and loving but ultimately) an audience in the pews.
It is amazingly easy to compare oneself to others. There is simply no end to the ways we can come up with to do so. We do it all the time in order to judge distance or order or assess (in a good way) our own growth. Comparisons are not the sin. It is only when we do so in order to engage our sense of value (of ourselves or others) that we start to dance on the gray line of transgressions.
As the mantra continued to be noodled into my being (bidden or not), I found myself wondering about God’s willingness to compare us to one another. I knew many people in my pews who thought of themselves as ‘behind’ in their faith, ‘lagging’ in their practice, not where they assumed they would be in terms of their relationship with the Divine or their lives ‘by this time’ (whatever that meant to them). I was, am, one of them. But instead of a God who would order God’s people according to their abilities and faithfulness, over time I started to imagine a God who would celebrate the small moments of grace that we, beautiful broken humans, had slowly learned to exhibit. As ‘Celebrate, Don’t Compare’ began to take root in my own being, the notion of orderly development of faith seemed to be similarly ludicrous. Perhaps instead of restrained and clear check marks on a faithful ‘to do’ list, God would see a sought-after WAGGLE in us, and throw up God’s arms in celebration, shaking God’s hips out of early morning slumber and into age old awkward dance moves, unsettling the neighbors and causing the local dogs to bark in consternation. All in the name of joy.
My son would not waggle his fingers for three weeks after that morning. And then, one day when I had forgotten to obsess and agonize over it, he did it again. And again. A few more stubby fingers, waggling in the direction of his beloved sister, telling her in his own, wordless way, how very much he loved her.
Such love has no comparison.
The Rev. Kit Lonergan is a generally sunny kind of lady, except in the mornings before her coffee, or at the end of a long committee meeting. Parent, spouse and wayward pilgrim, she bides her daylight hours in the delightful company of St. James Episcopal Church in Groveland, Massachusetts, where she serves as Rector, and at Esperanza Academy in Lawrence, Massachusetts, where she serves as Chaplain. She is currently learning to parent a son with different needs, a daughter who likes to use lots of glue in her projects, and how to be a generous child of God in supermarket parking lots.
Image by: Linda Chiango, St. James, Groveland, MA
Used with permission