This is Maya. She is four years old and lives her life with cerebral palsy like a boss.
Maya was born a micro preemie, weighing only 1lb. 10oz. at birth. To put that in perspective, that’s about the same weight as 4 containers of yogurt or 6 sticks of butter. Those first few weeks were the scariest. She was on a the highest powered ventilator in the NICU, it made her whole tiny little body shake 24/7. Still, it wasn’t working, she was struggling and the doctors were concerned she might be one of the ones that doesn’t make it. It was the most terrifying and heartbreaking time in our lives.
Not giving up
No one was giving up on this girl though. The doctors gave us a few options to see if we could get her to improve, one of those was to give her a high dose of steroids to help her lungs. There were risks, but we agreed. We wanted to give her the best chance at survival and any potential risks associated with the medication were more than worth it.
Bringing her home
The steroids were like magic. Within days of her first dose she was off the ventilator and on CPAP. Within another few weeks she was off CPAP on nasal canualas. All in all she breezed through the rest of her NICU stay. She came home after 87 days. We were elated and felt like we had “beaten the odds”. We were bringing home a perfectly healthy micro preemie who showed no signs that she wouldn’t be anything but 100% healthy.
We noticed something
At home things were going great. She was thriving, reaching most of her milestones on time or even ahead of what was considered typical. She was bright, talkative, a good eater, etc.. Yet there was something. We noticed Maya’s motor development wasn’t quite where it should be for age. It took her a long time to sit up and crawl. And, there was something else, as Maya grew her legs seemed more spastic and tight.
Our Early Intervention team was really on top of it. The home visitors recognized what was going on and urged us to speak with our doctors. Initially we were told that Maya just needed more time to “catch up” but we knew that wasn’t true. We kept pushing her doctors for more answers. Finally, Maya had an MRI. The images of Mayas brain showed that she had periventricular luekomalacia (PVL), a known causal factor in children with Cerebral Palsy (CP). It was confirmed Maya had CP. It was both devastating and a relief to finally know. A relief to have a diagnosis, but devastating because we didn’t know what to expect for her future.
It’s been 2 years since Maya’s diagnosis and we’re still learning and adjusting. Right now Maya does not stand or walk independently. She currently use a walker to get around and soon will have a wheelchair for longer distances. Currently she goes to physical therapy, occupational therapy, aqua therapy and hippotherapy weekly. She is a trooper. We are also considering a potentially life changing surgery call 'selective dorsal rhizotomy' within the next year.
For now, Maya is showing us the way. She is feisty, and funny, and caring, and smart. She likes babies, she tells the funniest stories, she loves to play with her big brothers and our three legged dog ,Abby. Maya is fiercely independent. She believes in herself. She knows she can do anything if she keeps trying. She never gives up, she never has.
Changing the world
She is going to change the world. She is going to change the world by changing people’s minds about what it means to live with a disability. We are so lucky to have a front row seat to this amazing life. We love our tiny girl with a big heart.