Hi, thanks for stopping by! I’m Maria, and I work as a freelance writer here in Honolulu. I work from home, taking care of my daughter Anna Lily while writing for all the major publications in Hawaii.
I met my husband Kevin during college, and we got married in 2015. Our daughter Anna Lily was born soon after, and we became a happy family of three! For the first four months, it was pretty much honeymoon baby bliss, mixed in with some crazy sleep deprivation and new parenthood hormones. We’d joke about Anna’s “ballerina” feet (always pointing downwards), and I didn’t think it was much of a big deal until I started wondering why she wasn’t able to do very well at tummy time. Lifting her head was such a chore for her, and I saw other babies her age doing it with ease.
At her three month appointment, her pediatrician tried lifting Anna up and getting her to bear some weight on her feet. She couldn’t. We got referred to early child intervention services for physical therapy, and then at four months, her pediatrician referred us to a neurologist. The words “cerebral palsy” were mentioned, and I did the wrong thing and Googled it.
Here’s the thing: The first thing you see online is kids in wheelchairs, spastic and unable to speak or move. Anna wasn’t like that. She wasn’t the typical CP kid. So, we held our breaths, wondered, and prayed, until the MRI scan at 7 months, which led to the diagnosis of mild right hemiplegic cerebral palsy due to periventricular leukomalacia.
Basically, that means the right side of her body is affected in different ways because she has scarring on the left side of her brain. We don’t know what caused it. It could have been a stroke, it could have been genetics.
We’re currently still in the investigation process through several genetic tests, but we’re not letting the “Whys” get to us — even though sometimes, I’m susceptible to emotional days like everyone. We’re settling into a rhythm of weekly physical therapy and occupational therapy, playdates, pool days and other fun stuff. Anna’s progressing beautifully, but there’s still a long ways to go. She just started furniture cruising, but her feet are still tight and she has very low trunk control due to hypotonia.
I’m 26 years old, and I am by far, NOT the most experienced or the most qualified “mom-person” out there. But we’ve been on this journey for more than a year now, and I think I’ve learned a little bit about what it’s like to be a parent to a disabled child, and how that term “disabled” can only be a label if you allow it to be. Writing is something I do for fun, as well as for work, so I’m hoping this will help me process everything that’s going on — and also, maybe, help other families who might be going through the same thing. Solidarity, and all that.
Thanks again for reading!