Sibling Advocacy
“I want to take Addie to the beach one day,” says Dorota Adam’s sister, “but I know a journey of a thousand miles begins with a single step so that’s why I’m training with the nursing staff at Bloorview to be able to take him on an outing one day.”
Adam was born with a form of muscular dystrophy called Nemaline Rod Myopathy and has lived at Bloorview Kids Rehab’s Complex Continuing Care floor since he arrived here at age 5 from Ottawa. Adam is now 21 and awaiting transfer to an adult facility.
“My father immigrated from Poland and lived in Ottawa with my mother and baby brother, until they were no longer able to care for Adam,” says Dorota.
“Bloorview became Addie’s home and his family and now they’re my family too.” The nurses really care about him and know that there’s so much more to him on the inside than you can see by looking at him from the outside.”
Now 23, Dorota commutes two hours on public transit to visit her brother on her day off and care for him. She’s actively involved in his treatment. She can be seen stooped over his bed, adjusting a hand device that activates a simplistic computer. She adjusts his arm rest and sees to his suctioning needs. Dorota is the picture of a doting mother, attentive to Addie’s every need. Dorota lives with her father only.
“I focus on the positive today because I can’t change the past and what happened to Addie. I focus on what we have today and we have each other. He knows me and smiles with his eyes,” says Dorota.
Dorota is grateful for all the help Bloorview has extended to Adam and her family. In addition to constant nursing care, Adam receives speech and respiratory therapy, and social work.
“Bloorview made me realize I didn’t have to manage my brother’s care all on my own. People at Bloorview will help you if you need it. That is so much more than any family could ever ask for,” says Dorota.
As I leave, Dorota asks her brother to smile a thank you to me. I observe a glimpse of a smile in his eyes and the wrinkle of the skin on his nose. It’s a story of dedication and commitment that’s rare and certainly denotes sibling advocacy, not sibling rivalry.
