“5 years ago, after 46 hours of labor and an emergency C-section at just 34 weeks, Olivia Mae came into the world as a fighter. In 2019, a month shy of her 2nd birthday, we received the diagnosis that changed the trajectory of our lives. We were told our daughter had a rare genetic disease called Rett syndrome. Rett syndrome is a neurological disorder that affects a child’s ability to talk, walk, and have control of their hands. Rett syndrome is like having all the symptoms of cerebral palsy, epilepsy, autism, Parkinson’s, anxiety, and breathing abnormalities in one person.
We joined a Rett support group on Facebook 3 weeks later and got to see how more than a dozen girls of all ages passed away for an array of reasons. Most of them being sudden. It was a harsh reality of what Rett syndrome can be. I remember grieving those first few months and thinking that ‘5’ seemed so far away…and how I hoped we would be able to celebrate that special birthday with her.
Her 5th birthday arrived, and the celebration began at 5:30 a.m. with a dance party. All of us took turns dancing with her for 15 minutes to all the Encanto songs (which is a workout for us now). She had her favorite breakfast, and we dressed her up in her birthday bling. We headed out to Bearizona and had a whole day planned.
What we didn’t expect was what happened next: as we were waiting for her younger sister to get a face painting, a father and his young daughter waiting in the same line stepped out and walked over to Olivia. They crouched down and told her how beautiful she was and said ‘Happy Birthday.’ Another father and daughter in the same line stepped out and walked over to Olivia and said ‘Happy Birthday’ too. I looked at my husband, and we were both trying to hold back tears.
It started a ripple effect, and throughout the whole day, multiple people stopped to wish Olivia a very happy birthday. A man stopped to talk to my husband for 15 minutes and asked about Olivia. He ended up buying Joel a drink in honor of Olivia. Being nonverbal and unable to wave back usually means Olivia is often ignored and people rarely make eye contact with her, much less talk directly to her. She usually watches quietly as people converse with her sister right in front of her. But for a whole day, everyone stopped to acknowledge her with a smile and took the time to say a few words to her.
She felt so special and proud that she smiled and laughed the whole way home. We saw that first man 2 times after, and he continued stopping to say hi to Olivia. By the third time, she recognized him as he walked up, and she flashed a big smile at him and his daughter. I told that first man how incredibly appreciative we were that he and his daughter took the time to acknowledge Olivia, but he will never really know how his kindness impacted Joel and me that day. We dressed her up merely so that we would have the pictures to look back on, we never expected people to react that way. Their kindness that day showed Joel and me that people are able to stop and see Olivia the same way we do—as so much more than just a girl in her wheelchair.
We’ve reached a point in our Rett syndrome journey where some health concerns have arisen, and one discussion with her doctor reminded me that, ultimately, our goal is to help Olivia live the best life she can. Medically, that means doing everything we can to make her comfortable while she is here with us earthside. It’s a painful reality for us as a family, but it’s what pushes us to make the most of every moment.
When the weight of parenting a medically fragile child starts to take hold, the moments of kindness we experience remind me to stop and celebrate her and the magical way she connects with people. I am reminded to stop and thank God that we get to be a small part of her story. She has opened our eyes to a whole new world, and in turn, our family gets to experience how truly beautiful life, and people, can be.”
