- Jessica Jemente's daughter, Mya, has neurofibromatosis, a genetic condition.
- With unpredictable NF symptoms, Jemente was anxious about Mya daily.
- This is her story, as told to Kelly Burch.
This as-told-to essay is based on a conversation with Jessica Jemente. It has been edited for length and clarity.
When my daughter, Mya, was 3 months old, I asked her pediatrician about a series of birthmarks she had. I thought I might be brushed off as a nervous first-time mom, but instead the doctor looked serious. He told me it might be a condition called neurofibromatosis, or NF. Then he added, "Don't Google it."
Of course, I immediately did. It was scary. NF is a genetic condition that causes tumors to grow on nerve fibers. The symptoms vary widely but can include vision loss, curvature of the spine, and learning disabilities. This condition is particularly terrifying because it has so many variables.
Mya wasn't officially diagnosed until she was two and a half. In my heart, in my gut, I knew she had NF. Still, getting that phone call and hearing the words, "She has NF," was devastating. I felt like I was prepared, but I guess you can never fully be ready for news like that.
I see a therapist to help manage my anxiety
Even before Mya was officially diagnosed, my anxiety went into overdrive. Every parent worries about their kids, but when you're dealing with an unpredictable genetic condition, every other illness or injury is amplified. A tummy ache or a fall at the playground could be because she's a preschooler, or the sign of a new tumor. It's hard to take a step back and say, "Are these normal childhood behaviors?"
I started seeing a therapist to help me cope with my anxiety, and eventually I was diagnosed with OCD, too. Some days I manage well; other days, I'm an anxious mess on the floor. That's why I rely on professional help. When I'm at that point of overwhelming anxiety, I don't feel like my best self. Talking through my emotions with my therapist helps me get back in the right headspace to feel like the best parent I can be.
Talking with other NF parents has been instrumental
There's nothing that can replace professional mental-health care, but it's just one piece of the solution for me. No one truly understands life as an NF parent like other people who are living it.
I've found community groups of other NF moms online. They understand my hypersensitivity to how any new pain could signal tumor growth and can give me balanced and empathetic feedback. My best advice to other parents of kids with chronic conditions is to find a community and the support of others who are familiar with what you're dealing with.
Soon after Mya's diagnosis, my family went to our first NF walk. It was amazing to meet other parents and adults with NF. To be in a crowd where everyone understood NF was such a big moment and one that will always stay in my heart. Now, I help organize those walks and reach other NF parents through my Instagram.
I want to empower other parents, as well as Mya
My husband and I want to show Mya that she can do anything she wants. Today, she's a happy 6-year-old who just started first grade. At first glance, she looks like a typical kid, but there are subtle signs of her NF: She can't balance very well on a bike, and she has some sensory issues.
Focusing on Mya helps me manage my own worries. There's not much that I can control with NF, but I can control how I help Mya cope. And I can raise awareness so that no other NF mom ever has to worry alone.
Jessica Jemente is a Navy wife and NF mom living in Southern California. Follow her on Instagram @jessicajemente.