There is the motherhood we expected; and then there is the one we actually get and live. This Mother’s Day, three Courageous Parents Network team members—each currently parenting a child with medical complexity—share what it means to mother in a reality shaped by intensive caregiving and uncertainty. Their reflections hold the stretch, the weight, and the quiet, enduring devotion of this parental journey. To all of the beautiful powerful (seemingly) tireless mothers in the Network, we wish you a Happy Courageous Mother’s Day. Enjoy these honest reflections.
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“I’m a mother, but too often I have to remind myself to feel like one. Instead, out of necessity and without formal training, I have to be my son’s care coordinator, social worker, administrative assistant, advocate, personal care assistant, and unskilled nurse. I’ve learned so much and gained these skills because I became a mother of a child who needed me to fulfill those roles. But in the daily struggle to meet his needs, I’ve lost the simple, grounding feeling of just being ‘mom.’ My goal, for this mother’s day, is to lean into doing the activities with my child that quench and quiet the yearning in my core to feel like a mother, nothing else. I want to enjoy motherhood, not endure it.”
Naomi Williams CPN Associate, Social Media
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“For most of my life, Mother’s Day was something I showed up for on behalf of others. I celebrated with my mom, who I’m incredibly lucky to have and who remains one of my closest friends. Meanwhile, I quietly carried my own grief alongside the joy. I had always dreamed of being a mom, and for a long time I wasn’t sure that would be part of my story. On my first Mother’s Day, I was pregnant with Owen, still unaware of his prenatal diagnosis. That day felt full of possibility—daydreams, hope, even a few happy tears. I remember a deep sense of peace, holding onto what might be, without yet knowing how profoundly motherhood would reshape me.
Now, as Owen’s mom, Mother’s Day is both everything and not quite what the world imagines it to be. He is the best. Being his mom is the greatest gift of my life. And yet, the day doesn’t look like the days I shared with my mom when I was a kid. There’s no breakfast in bed or handmade cards, no getting dressed up and heading out for brunch. Instead, I hope for a good day—for Owen to feel well, and for the caregiving load to be a little lighter for both me and my husband.
A mentor once shared something that has stayed with me: our medically complex children look to us with the same depth of need and connection as a newborn looks to their mother—not to diminish who they are, but to honor the intensity and beauty of that bond. It’s deeper, more constant, and profoundly meaningful. So, with that framing, while Mother’s Day may still sometimes feel like a day for others, I know I get to celebrate being Owen’s mom every single day. Every bit of it—the love, the exhaustion, the literal blood, sweat, tears, and yes, even poop—is worth it for the privilege of being his mother.”
Lindsey Topping-Schuetz, CPN Associate, Parent Champion
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“This Mother’s Day, I’m starting the day with a nice, long stretch. My son’s body depends on my care; and he has recently gone through a growth spurt. I’m achy from caregiving. I need to stretch more.
But this version of motherhood has stretched me in more important ways. I’ve had to stretch my perspective to see small gains in his coordination and communication as monumental to his development. I’ve expanded my understanding of what a joyful life looks like. I’ve enhanced my creativity to make play possible in therapy gyms and hospital beds. I’ve broadened my thinking from focusing on afterschool activities to weighing decisions about surgeries, quality of life, and how our whole family copes best.
So yes, I need to stretch physically. But more than that, motherhood has stretched me well beyond my original, expectant capacity. I am still a mother, stretched and still stretching.”
Laura Will, CPN Associate, Story Curation