It’s Round 2 of Hollywood Week on “American Idol.” We’re mid-pandemic, filming a show in lockdown. I’m paired up with my partner, Camille, whom I just met this week, and we have 24 hours to learn a song we’ve never played together. For the first time ever I am away from my 2-year-old child.
In the middle of rehearsals, a text comes through from my dad: “I have to take Lennon to the ER.”
I sob in the hallway, surrounded by producers and my new friends, questioning whether I am a bad mother for even considering staying in the competition.
Lennon went to the emergency room because her G-J tube (the tube that feeds her) ripped out. While it is a terrible situation that requires a hospitalization, I know it isn’t an emergency I have to immediately jump in to fix. I decide to perform in that round of the competition. I’m not just competing on “American Idol” for me, but for the chance at giving my daughter a better future. How can I give up now?
While on stage that round, Katy Perry asks me how I am. I manage to choke out one sentence before crying into the microphone. I tell the judges that I have spent the last two days in despair over my child being in the hospital without me. I speak to the judges and audience about Lennon’s diagnoses: tuberous sclerosis complex and her liver transplant.
I make it through the round (and the one following). All three of the judges relay their sympathy and empathy as parents, and applaud my resilience. But as difficult as it is, competing on “American Idol” feels like a walk in the park after my years as a medical mama.
My daughter Lennon was diagnosed at 10 months old with the rare genetic condition TSC. It affects only 40,000 to 80,000 people in the United States and can cause benign tumors on organs including the brain and heart.
Lennon started having seizures at home in October of 2019. One trip to the emergency room and three days later, my (seemingly) perfectly healthy infant now had a diagnosed genetic disorder, tumors in her brain, heart and kidneys, a neurologist, a cardiologist, a geneticist, and a $20,000 anti-seizure medication that I would inject into her tiny little thigh twice a day.
I’ve been a full-time touring musician for as long as I can remember. For the first 10 months of Lennon’s life, I had taken her on the road with me, and I felt blessed to be able to provide such a beautiful life for her, even as a single mother.
When the doctors gave me Lennon’s diagnosis, I was terrified. How could I possibly take care of my daughter, all of her medical needs, and continue my non-conventional career?
The two years following turned out to be the hardest of my life. Lennon went on to need a liver transplant. She had a central line and G-tube placed, underwent countless surgeries and spent nearly half of her life in a hospital bed.
I experienced so much grief in such a short amount of time. I was grieving the way life used to be. Grieving the way life “should” be. I had to grieve what I thought of as the “normal” mom experience.
It was in the middle of a 90-day hospital stay with Lennon that I learned of the “American Idol” auditions. In all honesty, “Idol” was never something I thought of doing. But, in the middle of chaos I thought, “Why not?”
I never even thought I would make it to auditions, let alone make it all the way to the Top 40. Being on “Idol” was hard. It’s a lot of work and the competition was fierce ― not to mention we were isolated from the world outside and I couldn’t see my daughter for weeks.
I left Lennon in the care of my father during that time. He flew in from Chicago just to be there with Lennon so I could compete on “Idol.” My dad is one of the smartest people I know and I knew he would care for Lennon as well as I would.
I spent the entire time trying to focus on the fact that I wasn’t doing this just for me, but for my daughter and her future as well.
Being at “American Idol” required an absurd amount of planning. I had to manage Lennon’s therapies and doctor appointments while I was gone. We only got to sleep for about six hours at most each night. Every chance I got, I would FaceTime my dad so I could talk to Lennon.
I never really knew whether I was doing the right thing, but I knew I was showing my daughter that there is no obstacle you can face that should prevent you from chasing your dreams. I hope that one day Lennon looks back on my time on “American Idol” and feels proud of me.
When Lennon was diagnosed with tuberous sclerosis complex, her pediatrician looked at me and said, “You won the lottery of genetic disorders!”
He wasn’t making light of this devastating diagnosis ― he proceeded to tell me all about the amazing community kids with TSC have behind them. Through this community, I found the TSC Alliance, which is a nonprofit organization dedicated to finding a cure for TSC, discovering better treatments for TSC, and just overall advocating for and supporting families affected by TSC.
While on “American Idol,” I was in touch with multiple people within the TSC Alliance, so I never felt alone.
I made it to the Top 40 of the competition. In all honesty, it felt like a big relief to go home when I did. I accomplished something huge but I was so ready to get home to my baby girl.
When the episodes aired, I received countless messages, emails and comments from other TSC families, amazed to see tuberous sclerosis complex being talked about on national television.
I have accomplished so many incredible things since being on “Idol,” but nothing even comes close to the absolute joy it brings me to be a voice for other families going through the same hardships my family has been through. I am lucky that I can use my platform to help spread awareness about those with genetic disorders ― for instance, I get the honor of singing at the TSC Alliance event “Comedy for a Cure.”
There is nothing more difficult than seeing your child struggle. But we choose to look on the bright side of everything. Lennon is now getting ready for preschool! She has a team of wonderful therapists who help her stay on track with milestones. Her speech is vastly improving every day. She gets a majority of her feeds through her G-tube, but the hope is that someday soon she won’t need it at all.
We are so grateful to be out of the constant state of emergency we were in six months ago and are ready for any challenge that may come our family’s way. While things may look different for Lennon as she grows, she will always be my spunky, courageous and wild babe.
TSC warriors all over the world, just like my Lennon, are undeniably resilient and face the world with a bravery we could all learn a thing or two about.
This article originally appeared on HuffPost and has been updated.