When Joe Biden was being inaugurated in January 2021, Genessee Semler from Thousand Oaks was in labor with her first child.
"That was actually a really hopeful day for the symbolism of it. The fact that we were bringing new life into this world even with the pandemic," said Semler.
Their so-called pandemic baby, called Fin, is now going to pre-school, and they welcomed their second daughter, Tea, nearly 3 years ago. She was born 10 weeks early and spent her first five weeks in the NICU.
"It wasn't obvious at the time, but it became somewhat apparent when she was about a year and a half old that we took her to a neurology appointment because she wasn't walking yet. They looked at her and the neurologist said, 'She's got cerebral palsy', even though it wasn't diagnosed with the MRI they did when she was in the NICU," explained Semler.
A photo of Tea in a frame is to my left, but her broad and infectious smile hides a diagnosis that the family are coming to terms with.
"She is just the happiest, silliest little girl," Semler said. "She is smiley, spunky. She falls all the time. She just gets up. It's not a big deal to her. And she's really tough. That's the silver lining. She's a tough kid. Yeah, so we're very proud of her."
Cerebral palsy is a group of neurological disorders that affect movement, balance, and posture. It’s a permanent condition.
"She has a Cerebral palsy that affects half her body, said Semler. "So she's really tight on one side of her body, which means, obviously, when your muscles are tight, they get shorter. When they're shorter, they pull up. So that forces her on her left side to walk on her tiptoes, for instance."
How does Cerebral palsy happen? In this case, they can’t be certain, but complications during her delivery could be the cause.
"It's really hard. You feel guilty because, you know, why couldn't my body keep her in? Why couldn't she be born on time? And for the rest of her life, it's gonna look a little different than what the life of her sister's gonna look like physically. And I know we're lucky. It could be much worse," said Semler.
She added that she's staying pragmatic. Accepting the diagnosis has taken time.
"It's not about me and feelings. It's about like, how do you get something done?" she said.
But she admitted she's carrying a large emotional load.
"I'm just a little bit burnt out. It's not just the children, right? It's what's going on. The uncertainty at what's going on in our country. This is not a political statement, it's just, there's always anxiety around uncertainty, and I think that — plus the uncertainty around our daughter — feeds into like a little bit of anxiety for me," she said.
"All you can do is really focus on what you can affect, what's directly around you. I try to remind myself of that for my mental well-being, that all I can do is influence my immediate circle, my daughters, talk to my husband, talk to my parents, and what you could do is what can you do, and that's it."
Genessee is sharing Tea’s diagnosis now because she hopes sharing the story will help remove any stigma about the condition and give hope to other families who might find themselves navigating a similar movement disorder.
We'll continue to follow the family on KCLU.
