Annika is a charming and tenacious three-year-old girl with an infectious smile and bold sense of adventure. At 3 months old, she had her first hospital admission. A month later, an MRI and EEG reveled that Anni suffered extensive damage that destroyed over half her brain. After extensive testing, the cause of her widespread cystic encephalomalacia remains unknown. The next year and a half of Annika’s life was filled with hospital stays, surgeries, and collecting a myriad of specialists, therapists, and secondary diagnoses. Anni has mixed hyperkinetic bilateral cerebral palsy, CVI and other neurological visual impairments, and takes most of her nutrition through her g-tube. She is medically complex, and a small sickness can quickly escalate to a life and death matter, or an extended hospital stay. She diligently works every day to get her body to do what she needs it to do. Whereas most of our bodies have an automatic transmission that allows us to do what we want without much thought, Annika is driving a manual that requires a lot of intentional hard work to coordinate the most subtle of functions.
Her amazing team of doctors told us very early on that Annika is blazing her own trail and advised us to let her lead the way. And that is exactly she does. Her disabilities are a part of her identity, and as equally prominent is her adventurous spirit, her hilarious sense of humor, and her magnetic personality. Annika loves outdoor adventure. She enjoys biking, hiking, snowshoeing, downhill skiing, swimming, and kayaking. She loves telling jokes and talking to people with an eye gaze device and other AAC methods, listening to music, walking on paved trails in her gait trainer, playing with her switch dinosaur toy, watching Sesame Street, and playing with friends at inclusive playgrounds. It’s not always easy to do things, and the lack of universal design forces us to get very creative at times, but Annika’s smiles and giggles are all the motivation we need.
We are so honored to be Annika’s parents. Without speaking a single word, she has changed our entire life perspective. As we travel with Annika on her journey, we have learned the following:
That a person’s worth is intrinsic and not based on productivity.
That disability is a form of diversity and a part of someone’s identity, but does not lessen their worth.
That competence is to be presumed for all people.
That true inclusion is possible when community structures, resources, and activities are universally designed for all abilities.
That the little things are really the big things.
That there is no such thing as normal.