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. Read more