I didn’t expect turning the corner from 19 to 20 to feel like such a big deal. Our daughter Penny came into this world two decades ago, on December 30th, 2005, and along with her birth came the unexpected diagnosis of Down syndrome. We have celebrated the gift of her life and the delight of her presence every year since then, and I expected this year to fall in line with all the rest. But when I walked into the kitchen and saw those two candles affixed to the makings for ice cream sundaes, I felt the wonder of her life all over again.
Becoming a parent to a child with a developmental disability can be fraught with fear about the what ifs, but those same fears can become a journey of discovery. I suppose I could list all the things that typical 20-year-olds do that Penny doesn’t. But over the years, my mind has stopped going in that direction. I used to be aware of the milestones and expectations set by professionals, the ones that she didn’t “hit.” It wasn’t a conscious shift, but I don’t live by those metrics anymore.
Still, it is a gift to have the milestone of a birthday (and a new year) because it prompts me to notice who she is still becoming—this young woman who announced yesterday that one of her goals for 2026 is to ask more interesting questions of her siblings, who said that one word that characterized 2025 was friendship, who led our family in the third annual game of “Who knows me better?” and who confessed (unprompted) to staying up way past her bedtime to talk with her new boyfriend (!).
I am grateful for the surprise and delight of her presence in my life, in our family, and in this world.
The Party and the Prayers
We celebrated Penny’s 20th birthday with a very simple gathering with three friends. They ate pizza, played games, made ice cream sundaes, and Penny opened presents. It’s the first time in many years that Penny has had a group of local friends who can celebrate with her.
At first glance, this gathering emerged from a few simple, small steps. I’ve written in past updates about how I finally compiled a list of other students and parents in Penny’s school program, which led to a bowling day and a movie night. On some level, that’s all it took to also have a birthday party.
But there’s more to the story. After I told my friend Patricia, who lives in Richmond, Virginia, about the excitement of having friends in our house to celebrate Penny’s birthday, she texted, “I recently stumbled on an old text thread where I must have mentioned how we pray for each other and how we were praying for Penny and her desire for friendships. Anyways, my friends on this thread were so taken with this need that a few of them said they were going to pray for Penny. I don’t know how regularly they did but I know they did that night. I found this very encouraging in light of her recent birthday party.”
I, too, find this very encouraging. Yes, Penny and I took some small steps toward cultivating friendship. And some women we don’t even know prayed for those steps to take root. And here we are, celebrating and knowing that we are not alone in this journey.
I circle back all the time to three foundations for families who want to move toward a good future: start with delight, connect to community, and take the next step. I look back over Penny’s life, and over even these recent days and months, and I see those three principles at work. I hope this newsletter provides a space for you to do the same in your own particular situation. As we enter into this new year filled with new possibilities, may you also find delight, community, and hope that a good future is on the horizon.
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