Margaret Boyter-Escalona and Alejandro Escalona live in a big blue house on a tree-lined street in suburban Oak Park with a golden retriever, Niko, and two very active, bilingual kids, Isabela, 11, and Daniel, 13.
Beyond this canvas, however, lies another view. Daniel has Duchenne muscular dystrophy, an early onset genetic and degenerative muscle disease that relegates him to a wheelchair.
“I think certainly confronting Daniel’s illness is something we never expected, but the most important thing is that we try to stay positive and treat him as normally as possible,” says Boyter-Escalona."At this point in life, Daniel seems well adjusted, and that to us is a success because he could be very angry.”
Because her job at a local university is flexible, Boyter-Escalona handles most day-to-day details and accessibility issues, while Alejandro, an editor for a Spanish newspaper, does morning and evening duty, and when off the clock, more.
“I have to say that I don’t watch much TV and certainly there are things I’d like to keep up with to replenish myself, but this is our life and we have to live every moment to the fullest,” Boyter-Escalona says."That means that Alejandro might take Isabela to piano lessons and I might take Daniel to doctor appointments and crew calls (he does technical theater for plays at Percy Julian Middle School) and we all try to go to Isabela’s soccer games together.”
Important to Alejandro was that his children would be able to speak fluent Spanish with his mother and family in Mexico City, so from birth he has spoken and read to them in Spanish only.
“When we are all in conversation it is in Spanish and English,” Boyter-Escalona says."I come from an Irish Catholic American background, so we have been committed to exposing them to both cultures.”
As medicine and technology advances, Alejandro hopes Daniel, a baseball enthusiast, can enjoy life with a family and a career, possibly a sports writer. For Isabela?"Who knows, perhaps she can get a scholarship to the University of Notre Dame or something like that where she can excel in academics and play soccer,” Alejandro laughs.
“We are always hopeful, anyway.”
