Georgie Jonez, poet, claims, “I’m holding the weight of the world, and I think I might be holding it wrong” in her poem about women. I’m not sure anything else has resonated with me more than this during my current season of life. But it isn’t the weight of the world, it’s the weight of my world. My boy. My family. My purpose. Am I holding it right? No one has done my life before now, so who knows the right way to do it? I’m guessing a lot of people who haven’t stepped foot into my arena of special needs parenting have opinions. Luckily, it’s so loud in this forum that I can’t hear the crowd. I am consumed by my own inner monologue. One that used to be full of optimism and pride, that is now peppered with doubt and confusion. As my roles constantly shift between mother, teacher, pharmacist, secretary, advocate, researcher, and co-regulator, I am learning every day. There is no comfort zone. Everything is new; there are no shortcuts. The rabbit hole deepens as I carve new paths and encounter dead ends. Most days, it feels like I am new at being a mother. I can’t think of one thing that becoming a mother 16 years ago to my other child helped me with for this version of motherhood. Nothing to draw from. Nothing to replicate. I’m starting from scratch.
Yesterday, I found myself holding my sobbing son on the kitchen floor. Again. It used to feel awkward. I remember thinking ‘ wow this is weird. Here we are… lying on the kitchen floor….’ It’s where my son falls apart, needing a calm nervous system to regulate his unreliable system. Where he shares remorse and self-doubt. Where his crocodile tears puddle on the tile and drench my shoulder. It’s where I know I need to be, but also the last place I want to be in the same moment. Who knew that unforgiving cold floor would be the canvas for healing, for connection, and for growth for us? It’s now a place where I find myself calculating and attuning to his needs while regulating my own. I’ve never been so present for anything in my life as I am for him. I often distract myself during rough seasons of life. I research. I busy myself. I do for others to avoid my own discomfort. Not this time. It’s all about sitting in the darkness. Paying attention to the nuances. Cradling a boy who feels too big to need it but too anxious to ask for it.
The levity I hoped to find in 2026 proves to be a more challenging task the further we go into the year. Finding a complementary mix of the right medication, therapies, school supports, and celestial harmony for John is a task beyond me. It’s larger than life. It requires the fine-tuning of scheduling, networking, and finessing that is all-consuming. The pressure of orchestrating all of this while maintaining a sense of calm that my son can rely on is a daily struggle, with unpredictable moments that can push us back or lead us forward. This dance requires talent I have not yet acquired. Learning the moves as I go. No rehearsals. Expecting myself to perform with confidence and grace, and applying improv skills to turn mistakes into learning opportunities. For a show without an end in sight, except nighttime for a short reprieve before it begins all over again.