Over the last 18.5 years, Maria has participated in a wide array of outpatient and home therapies, including aquatic therapy, therapeutic horseback riding, and riding a functional electric stimulation (FES) bike. Through these therapies, Maria has gained function and strength in her upper extremities, enabling her to independently maneuver a manual wheelchair with e-motion wheels. Her hand function has improved, but it is still weak. In terms of balance, she has decent trunk control thanks to a 13-hour spinal fusion and the insertion of a baclofen pump, which limits the impact of her involuntary leg spasms. For the past couple of years, Maria has received botox to help relax her neurogenic bladder. Even with all of these medically related obstacles, from Maria’s perspective, the greatest frustration has always been feeling accepted by peers and overcoming the limitations they place on her. People are quick to see the chair and not always the person in it. She simply has wanted to be treated like everyone else.
I believe we as parents struggled more emotionally over the years because Maria was always content with her life. At the age of 13, Maria was asked, “If you could change anything in your life what would it be?” Her answer was simply “nothing, I am happy and content with who I am.” Today her answer to that question remains the same in regards to living with TM. Living as a quadriplegic is all she knows and she accepts gracefully.