I Started Therapy After My Daughter’s Chronic-Illness Diagnosis


  • Jessica Jemente’s daughter, Mya, has neurofibromatosis, a genetic disorder.
  • With unpredictable NF symptoms, Jemente was worried about Mya on a daily basis.
  • This is her story, as told to Kelly Burch.

This as told 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 moles she had. I thought I might be brushed off like a nervous mommy for the first time, 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 did that right away. It was scary. NF is a genetic disorder that causes tumors to grow on nerve fibers. Symptoms vary widely, but can include vision loss, curvature of the spine, and learning difficulties. This condition is particularly terrifying because there are so many variables.

Mya wasn’t officially diagnosed until she was two and a half. In my heart, in my stomach, I knew she had NF. Still, getting that phone call and hearing the words “She has NF” was horrible. I felt like I was prepared, but I guess you can never be quite ready for that kind of news.

I see a therapist to manage my anxiety

Even before Mya was officially diagnosed, my anxiety increased. Every parent worries about their children, but when you’re dealing with an unpredictable genetic condition, every other illness or injury is amplified. A stomachache or a fall on the playground could be because she’s a toddler, or the sign of a new tumor. It’s hard to step back and say, “Is this normal childhood behavior?”

I went to a therapist to help me cope with my anxiety, and I was eventually diagnosed with OCD. Some days I’m fine; other days I’m a fearful mess on the floor. That’s why I count on professional help. When I’m at that point of overwhelming fear, I don’t feel like my best self. Discussing my emotions with my therapist puts me back in the right space to feel like the best parent I can be.

Talking to other NF parents has helped

There is nothing that can replace professional mental health care, but it is only part of the solution for me. No one really understands life as an NF parent like other people living it.

I found community groups of other NF moms online. They understand my hypersensitivity to how new pain can signal tumor growth and can give me balanced and empathetic feedback. My best advice to other parents of children with chronic conditions is to find community and the support of others who are familiar with what you’re dealing with.

Shortly after Mya’s diagnosis, my family went to our first NF walk. It was great meeting other parents and adults with NF. To be in a crowd where everyone understood NF was such a great moment and one that will always remain 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 is a happy 6 year old who has just started first grade. At first glance she seems like a typical child, but there are subtle signs of her NF: she can’t balance very well on a bicycle and she has some sensory problems.

By focusing on Mya, I can manage my own worries. There isn’t much I can control with NF, but I can determine how to help Mya cope. And I can raise awareness so that no other NF mom ever has to worry alone.

Jessica Jemente is a Navy woman and NF mother living in Southern California. Follow her on Instagram @jessicajemente.

The Valley Voice
The Valley Voicehttp://thevalleyvoice.org
Christopher Brito is a social media producer and trending writer for The Valley Voice, with a focus on sports and stories related to race and culture.


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