As a young mom, juggling the demands of life, parenthood and work can be overwhelming on its own. But when I was diagnosed with neuromyelitis optica spectrum disorder (NMOSD) in 2019, my world turned upside down. Suddenly, in the midst of managing a full-to-the-brim phase of life, I found myself facing the challenges of a rare disease I had never heard of before.

NMOSD, as I later learned, is nine times more likely to occur in women than men and often strikes around the age of 40.^1-4 It was a diagnosis that blindsided me – quite literally, as one morning, I woke up unable to see. The journey since then has been filled with uncertainty, fear, gratitude, love and adjustment.

Throughout the early days I found myself often asking, how can I find a new and acceptable normal? How could I balance an already full life with a new element that would require a great deal of attention and energy? While it’s always a work in progress, I discovered a key that seemed to unlock the peace I so desperately wanted to access. That key, is in fact not striving for balance; it’s accepting that there isn’t a perfect balance when managing motherhood, life and NMOSD – and that’s perfectly okay. I could create a beautiful future even with a lack of perfect balance.

In order for me to create the bright future I thought might be compromised because of all this, I needed to pay close attention to my inner dialogue about my body, the condition, the future and the balance of it all (or lack thereof). I needed to make the goal of every moment to be: have grace.

In the beginning, the unknowns surrounding NMOSD were frightening. But with the goal of having grace, it became easy to understand that this disease was always a part of the plan life had for me. This was always going to happen. And it might be hard, but that’s not because anything has gone wrong. So, instead of fearing the future, I became open to what might come my way. Perhaps, I began to believe my best life is still ahead of me.

Once my internal dialogue became deliberate and practiced, next came how I wanted to show up. Knowing your sight and ability to walk could be taken from you creates a keen awareness about those abilities as they currently are. Which, if allowed, provides a window to deep gratitude for what is functioning well. This gratitude, for me, has become a pillar of how I operate every day. On the hard days, on the good days, on the busy days, and on the painful days – making gratitude a core focus of my brain power has transformed how I view my life. Without NMOSD, who’s to say if things would be still this way?

Now to the practical side of things: how was I supposed to actively take care of my body every single day? And what could I focus on that would still give me a return even when it was messy and imperfect? Due to my background in fitness, nutrition and wellness, I had a well of resources to build a simple yet effective habit stack to give myself the best return in my health.

For me, this included things like prioritizing a healthy diet and staying active as much as I could. These habits, which I made deliberately basic (because, hello, very involved mom over here), have been small but significant parts of my self-care that, with each action, are a way of saying, “Hey self, I’m looking out for you.” Everyone is different, so it’s important to find out what works best for you.

Living with NMOSD as a mother presents its unique set of challenges, but it’s also taught me resilience, compassion and the importance of prioritizing mental health and physical well-being. By giving myself grace, surrounding myself with a strong support system and practicing gratitude and self-care, I’ve been able to navigate this journey with strength. And while the road ahead may still be uncertain, I face it with a deep sense of hope and determination.