By Cathy Escueta
(Cathy Escueta’s daughter, Xyla, has severe cerebral palsy and was recently under the care of Hospice by the Bay. Cathy feels so strongly about the care the family received that she asked to share their story with others.
Shown in the photo at right: Xyla, surrounded left to right by Christine Merriam, RN; Heather Jolly, MSW, MPH; Nancy Weniger, Hospice volunteer; and her mother and caregiver, Cathy Escueta)
Xyla’s Story: How Hospice by the Bay made a difference in the life of an eight-year-old girl
A few months ago, when Xyla was in the hospital struggling with the flu. hypothermia and septic shock, the doctors suggested that we consider hospice care. My first reaction was “No!” I had always felt that hospice meant you were giving up.
I was afraid, but something inside me said “take the chance — just do it.” We enrolled Xyla in hospice, and now I want to tell the world: hospice has made a big difference in our lives — she is doing better, the family has a stronger support system, and our family has grown through the wonderful relationships we have with the Hospice by the Bay team.*
About Xyla and our family
Xyla was a premature baby and suffered a severe brain injury at birth. She was diagnosed with cerebral palsy and given one month to live — but she survived. It was a scary time and I had a lot to learn about caring for her. Xyla is now eight-years-old and severely disabled — she can’t sit, crawl, or walk; is unable to feed herself; can’t talk; has limited understanding (but can hear some sounds); is legally blind; and, has a shunt for swelling in the brain. She also has other medical problems, including seizures, chronic lung disease, and asthma.
I’m Xyla’s main caregiver. I’m also a single mom with two other young children. As you can imagine, it’s not easy caring for a special needs child. There are a lot of challenges – controlling her pain; the effort it takes to get her to the doctor or dentist; plus, the fact that we don’t have much money. For me, the lack of sleep can be a big issue and sometimes I get stressed out or feel a bit alienated — seeming more like a caretaker than a mother. And my other children need my attention too.
People often ask me “Cathy, how do you do it?” First and foremost, I love Xyla and am happy that she is part of my life — and glad that we can care for her at home. I have a lot of support — from her father (who provides me with needed breaks) and my family. Xyla’s care is covered by Medi-Cal and I am paid by the government for being her in-home caregiver. We take one day at a time. Importantly, my faith and the power of prayer carry me through.
Xyla is fragile and I don’t know what the future will bring. She’s had two big medical scares that put her in the hospital. We didn’t know if she would survive, but she did, so I call her “my miracle baby.”
What hospice has meant to us
Hospice by the Bay entered our lives after Xyla’s most recent medical crisis. They’ve been wonderful — professional and competent, but more than that. They’re not just about “do your job with the patient and then leave.” They really care about us, are upbeat, and even share about their own lives. It’s a strong bond.
Hospice by the Bay has changed our lives. When we first enrolled Xyla, the nurse came to our home to conduct an assessment of Xyla and our family needs. The amount of attention and care we received from the team was phenomenal — from the registered nurse, social worker, and volunteer (all of whom visited weekly), to the twice a month visits from the chaplain for moral support; and, to the child life therapist who worked with Xyla on simple activities (like painting her nails) that engaged her and made her happy.
There were some unexpected — and welcome — surprises: how the social worker arranged for benefits we didn’t know about, like funding for medicines, probiotics and wipes; massage therapy for Xyla; program funding from Hospice by the Bay so that our family could have its first ever overnight stay in San Francisco and visit to the Exploratorium; and, even the adult coloring books that the chaplain gave me to help with my stress.
All of this may seem simple to families with healthy children and lots of resources, but to us it meant everything. I’m not sure what we would have done without Hospice by the Bay.
Xyla is now stable and no longer requires intensive hospice services. We held a “graduation ceremony” for her in September that the hospice team planned for us. We’ll all miss our friends at Hospice by the Bay, but know that they plan to stay in touch as part of their special follow up program. I know that, someday, Xyla may be back on hospice care.
My message to all of you is this: If you have a family member who would benefit from hospice services, don’t be afraid — embrace it. Regardless of the final outcome, it will change your life — for the better!
*Note: Generally, patients are eligible for hospice services when they have six months or less to live. However, government regulations permit children like Xyla with life threatening illnesses who are not considered “terminal” to receive hospice and palliative care (pain control) services.