How do I document the way I and those close to me are experiencing life at this time in history? That question has been niggling at the back of my mind for months. It’s become harder to ignore.
I chose more than a year ago to quit social media. I don’t regret the control I have regained over my time and attention. But I do miss what, for a brief window of time, felt like a place for conversation and the exchange of ideas in a public square.
This blog was once a place to document our journey to family. I blithely chose a title and then discovered a prodigal generosity in the dash of unexpected scattered into our lives. Lina’s birth and diagnosis of Down syndrome more than 13 years ago and Corin’s diagnoses of autism, ADHD, and anxiety disorder a few years later shaped what followed: where we live, our spiritual path, the communities we belong to, career paths, formative travel experiences. Disability still shapes much about our daily lives.
Our lives are also full of the normalcies familiar to any modern family. Parenting children with disabilities also contains the common experiences of guiding children through the stages of growing into themselves in an increasingly complex world. Lina is an early teen adjusting to a changing body, discovering a love of romance and embracing her first celebrity crush. Corin is a high school sophomore learning to drive, wrestling with AP chemistry, and beginning to think about college and career options.
All these layers of our lives are unfolding at what appears to be a turning point in history. The country I love is straying from its democratic foundations. Unprincipled and self-serving leaders daily inject a previously unimaginable level of chaos into public life. Values I once believed to be a bedrock of the American character are mocked as a “woke” threat to national identity. Immigrants and citizens alike live in fear of masked agents wielding weapons designed for fields of deadly combat. Dissension is punished. Those who stand to profit curry political favor at the expense of ethical guardrails and personal integrity. Tension erupts into violence as citizens believe the lie that the enemy stands just on the other side of a political chasm. Global unrest rushes toward expanding armed conflict, accelerated this week by a new war initiated with no coherent explanation to the American public and no Congressional oversight. A barrage of systemic failures and betrayals of trust by the powerful shatter faith in public institutions, leaving a cynical public afraid for the future and seeking someone to blame.
I watch these events unfold, and I feel the tension running like a current through our lives. Our global future feels more uncertain than at any other time in my life. I feel an urgent need to register resistance to a path I know leads to a repeat of history’s worst mistakes. But I also feel a numb helplessness in the face of events so far beyond my control. Every action I take carries a sense of futility, like trying to swat back a massive swarm of bees. I call my representatives to respectfully register my views. I vote. I continue my daily work on disability systems change. But I can’t shake a sense of a relentless tide dragging us all toward unknown shoals.
I’m not sure anyone reads blogs anymore. There’s a good chance I’m speaking into a void. But the words feel imperative to register somewhere – to mark in some public way that yes, I see what is happening, and that I am struggling as best I know how against the tide. I know many others are, too, because I have these conversations often in my personal circles. There are signs of hope alongside the barrage of chaos, as law firms win suits against illegal federal actions and protesters outlast violent federal policing of target cities.
When I started writing in this space, our story was deeply personal – the intimate journey of two people who loved each other and wanted a normal family life together. Over time, I have come to feel immense gratitude for the ways our experiences have deviated from the normal, even amidst the exhaustion and worry that pervade the disability experience. I have found great purpose along the way. Now, I see our story playing out in a bigger context – a global churn of lives and events that react against each other in ways impossible to predict and difficult to control.
But I continue to believe in an even greater purpose, taking my place in a universe designed and guided by a God of love and destined for eventual restoration. I believe in a personal God who walks with us through whatever lies before us. I sink my roots deep in that soil. I watch the birds at my feeder. I loop yarn around knitting needles. I walk in the woods. I read voraciously and absorb stories like oxygen. I grieve and rage over injustice. I seek human connection. I love as hard as I know how. I laugh as often as possible. I go to therapy. I do the good I can, where I can. I pray that the light in me overcomes the darkness. And I lean heavily on the grace that will somehow make it all enough.









Corin is a wildly smart and imaginative kid who thrives on love and affection and wows me with insights well beyond his years. He loves being the center of attention. He excels at reading and language arts, and many academic tasks come easily. He is obsessive in his interests (currently Pokémon, heaven help me) and lives deep in his imaginary worlds. He is sensitive and a keen observer of people, and he internalizes more than he lets on.
Part of my struggle in how to share this story is that I want to be clear I’m not seeking validation. We know we’re doing what’s best for Corin. I am sharing this chapter of our story because I know there are other families in our shoes, and because our family has learned the value of being open and real about our experiences.
I am grateful for the incredible partnership of my husband. I am grateful for our support system of family and friends. I am grateful for compassionate and informed medical professionals and therapists. And always, I am grateful for my children. They are my heart, and remarkable people in their own rights. I am lucky they are mine.