Cascading Lives

Jenifer: I’m a different kind of healer now

Jenifer grew up in a small city in Honduras in a loving and close-knit family. Her parents worked hard to provide for their four children. When Jenifer was twelve, the family lost the farm they had owned because of debts. After this Jenifer’s father traveled to the U.S. to find work and to be better able to support his family. To supplement the income received from her father, her mother took in laundry at home and sold cakes and pastries. Although struggling to make ends meet, her parents made sure that all of their children received high school and university educations. Thinking back on her childhood, Jenifer says “I realize now that we lacked a lot of material things. But things like love, education, parental care – we had all of that. Our parents gave us education and they gave us a strong work ethic.”

Jenifer applied herself to her studies. She knew that doing well in her school was the way for her to do what she had always wanted: “Ever since I was a little girl, my only dream was to become a doctor and heal the sick.”

In her late twenties Jenifer graduated from medical school and began working as an emergency room physician while training to specialize in obstetrics and gynecology. This was a triumphant time for Jenifer and her family. Becoming a doctor was a remarkable achievement for a young woman from a working-class background. Against the odds, she had moved into a high-status profession. After attending medical school in the capital, she returned to work in the small city in which she grew up. She enjoyed treating patients from her own community.

Looking back on her life in Honduras before coming to the U.S., Jenifer says, “It was a beautiful time in my life.” She was in her early thirties, happily married, and the mother of a lively five-year old boy. She was working in her dream profession. She had family and friends around her. She and her husband Victor were financially comfortable. They owned their own home and car and had the means to care for Jenifer’s mother who suffered from kidney disease. The future looked bright.

Then the comfortable life that Jenifer had worked so hard to build came tumbling down. When she was expecting her second child, doctors told her it was a high-risk pregnancy and that the child would most likely not survive. Desperate to save their son, Jenifer and Victor decided to go to the U.S. where the medical facilities are more advanced than in Honduras. Their plan was to return to Honduras soon after the birth of the child: “I came here with just one goal – to give my son the advanced medical care he needed. I came for that sole purpose. I did not come here to stay.”

After arriving in Boston, Massachusetts, Jenifer gave birth to Julián. Born with multiple disabilities, the baby underwent several spinal surgeries in the first year of his life. Jenifer felt her heart break; she knew that his life was precarious and uncertain. For a whole year she spent days and nights sitting by Julián’s bedside at the hospital, tending to him and praying for his survival. Victor worked full time and also cared full time for their older son Aarón. At that time, they didn’t know anyone in Boston they trusted enough to help care for him. Knowing that it would jeopardize Julián’s life, they pushed aside any thoughts of returning to Honduras.

Seven years later, Julián lives at home with his family in a town outside of Boston. The family has remained in Boston to ensure that Julián gets the best possible medical care. Julián is confined to a wheelchair and has limited use of his arms and legs. Along with taking him to frequent medical appointments, Jenifer devotes herself to making sure that he is getting the meticulous round-the-clock care that he needs to survive. Victor and Jenifer take turns caring for Julián at night. The ventilator that he needs to breathe has to be cleaned every hour. Their only times of respite are when home nurses, whose services are provided through state insurance programs, come to monitor and care for Julián. The pandemic years of 2020-2021 were especially difficult for the family. For several months Jenifer and Victor thought it better to forgo the visits of home nurses so as to reduce the number of people coming in and out of the house. They worried about Julian becoming infected, given his medical vulnerabilities. Taking care of Julián without the assistance of trained caregivers took a huge physical and emotional toll on them.

For Jenifer, Julián’s birth presented life-changing consequences: “Being the mother of a child with special needs has changed my life completely. I had to leave my country, leave my job, leave my profession.” Living in the U.S has been difficult for Jenifer as she struggles to learn the language and ways of a new society. She longs to see her mother and other relatives in Honduras. Jenifer has worked all her life but given the intense demands of caring for Julián, she cannot imagine having paid work that takes her away from his bedside. After taking some classes she now bakes homemade cakes and pies to sell, much like her mother did in Honduras: “This year I have been making pastries from home for friends and family. This has been my only job, if you can call it work, but it is more like a hobby, nothing more. Really, financially I depend on my husband; the whole family depends on my husband.”

Despite the losses she has experienced, Jenifer does not regret the decision to move to the U.S. She believes the move saved her son’s life. She is grateful for all of the support they have gotten for Julián from hospitals, schools and social service agencies. The church that she attends has been a great source of comfort and community. She has joined a support group for the parents of children with special needs that has become an anchor in her life. Besides exchanging information about medical and social services, the support group is a place where she and other parents can share their feelings and experiences without judgment.

Jenifer misses her past life. But, she also appreciates all that she has learned in the process of caring for Julián. She is committed to helping other families like her own, who face the daunting task of finding appropriate medical and educational services for a child with special needs: “I am a mother who advocates for her children and who helps other mothers to advocate for the special services their children need to do well.” In these ways she continues to be a healer. Maybe a different kind of healer than what she used to be in Honduras. But still, a healer.