Last year I chose the word advocacy, and let’s just say I did not disappoint the New Year’s spirits on that decision. I dug deep, went way outside my comfort zone, and committed every waking moment to researching, seeking support, and advocating for my 7-year-old autistic son. It was draining. It was soul-sucking at times. I’d be lying if I said I didn’t lose my playful self in the process. I felt more alone and isolated than I ever imagined doing such meaningful work. I found out who would show up for me when things got hard and who would look the other way. I learned how to get over looks of pity, how to make quick judgment calls, and how to speak up for a boy who can’t for himself.
Finding balance is my goal this year. While my advocacy work is not done and I’ve mostly come to terms with the fact it will never truly be done, I need to find levity in the heavier moments. Being an optimist, it was unnatural to come to grips with grim realities like failed medicine, waitlists, and not-so-promising appointments and meetings. As a person with high expectations of herself and her family, I felt the bar dropping lower while the hole I was in grew deeper. It was at the bottom of that pit, I was reminded of a speaker at a training who tried to distinguish empathy from sympathy. When someone is stuck down in that hole, you can either 1) sympathize from above and tell them you’re sorry you fell or 2) you can empathize by getting down in that hole and finding a way out together. I never thought I’d know what it felt like to be down there. I’d always been the one to sit with someone in their darkness, not the other way around. I remember calling my husband frustrated that I could not drag myself out of the heart wrenching chasm I was in trapped in. Every time I thought I could see the light, I’d fall. One step forward. Two steps back. Questioning every decision and non-decision. It was affecting every ounce of life from home, to work, to graduate school to parenting my other child.
My focus on levity this year will be anchored in finding joy and light through this not-so-new stormy terrain that is now my life as John’s mom, his person, his safe space, his “angel” according to him. I must be intentional about seeking balance because I’ve seen how tipped the scales can become. Reflecting on 2025, there was so much good last year that was overshadowed by three challenging months in John’s educational experience. He is so much more than his deficits, his disabilities, and his meltdowns. I refuse to let those define him. I will continue to build him up, while seeking help and modeling how to add levity as an essential life skill to weather these rough moments. After bad days, we tell each other, “I love you no matter what.” The last time I broke down in front of him, he wrapped his legs and arms around me, patted my back, and told me, “I’m not going anywhere, Mom. I’m right here and pressed his forehead to mine and closed his eyes.
While I’m responsible for my son’s well-being, I am not in control of how his brain and nervous system are wired. I can, however, continue to learn from him, our experiences, and relevant research from those in the trenches to help him better deal with the hand he was dealt. I have never felt the quote I shared at his birth more deeply than I do now.
Parenting has never been more challenging. I thought it was hard to be pregnant and lose my mom while raising Allison. I’ve cried more in the past three months than I have in the past ten years. I hardly ever cried, and I’ve shed tears twice just writing this alone, and it probably won’t be the last time today. Adding levity to any situation was something I could do naturally and now I have to relearn how to do that, not just for others but for myself. I lost that playfulness in the trenches of advocacy last year. I don’t know where to start, knowing my journey as a lightworker is far from over. It’s heavier than it sounds. A lightworker is not someone who seeks effortless work. It is a person driven and motivated to do work that makes the world a better place, improves people’s lives (John’s in this case), and elevates people to a higher level of consciousness (everyone who interacts with him).
Here’s the finding levity in the lightwork in 2026. And to all of you doing the same out there, you have my utmost respect and my loyal solidarity.