“That Kind of Nursing” by Lisa Buell, mother of Madison
The Kendall Inspiration Award
Partnership for Children Nurse Care Coordinators Sophia Schultz, RN and Shoshana Spielman, RN were honored with the Kendall Inspirational Award by the Hospice Foundation. Because of their incredible dedication to children and families, Lisa Buell, mother of Madison Buell who died at age two, nominated Sophia and Shoshana. Please take a moment to read Lisa’s touching nomination…
By Lisa Buell
When our first daughter Madison was born, a visiting nurse came to our home for a traditional follow-up visit.
She was kind and compassionate, full of information and resources, and by the time she left, I felt like she was a friend. Five months later, our beautiful baby was diagnosed with a cancerous tumor in her pelvis. Our lives were never the same. My partner and I spent much of our time at the hospital dealing with Madison’s treatment regime. Once she was home, we provided her nursing care ourselves; the nursing care; blood draws, shots, hyper alimentation, dressing changes, and IV antibiotics. We managed insurance eligibility issues and made certain there was authorization for each costly procedure.
We also experienced the joy of parenting. We read to her, sang, danced, and played all the silly games parents do. As Madison’s first year of treatment came to a close, her doctor suggested that we hire a visiting nurse to help alleviate some of the burden of Madison’s round-the-clock medical care. We agreed. The day came and our visiting nurse arrived. What a stroke of luck! She was the very same lovely woman who had befriended us after Madison’s birth.
As we explained Madison’s illness and her care requirements, this same nurse who had been so confident and full of enthusiasm a year earlier, was visibly shaken. “I usually don’t do this type of nursing,” I remember her saying. She looked on as we changed our daughter’s dressings in the usual manner, one of us holding her arms over her head while the other did the cleaning and bandaging—both of us singing You Are My Sunshine.
When we finished, a heavy silence fell over the room. We looked over to find the nurse wiping away tears. Over and over, she said, “I don’t know how you do it, I just don’t know how you do it.” Frankly, I didn’t know myself, but seeing her fall apart like that was terrifying–if she couldn’t do it, how could we! The visiting nurse volunteered to drop Madison’s blood sample to the lab for us that day. She was due to return in a few days. We never saw her again.
I remember wondering what she meant that day when she said “I usually don’t do this type of nursing.” Now I know what this type of nursing means. It means assessing the child/patient and the family, coordinating care, communicating with the parents and extended family, advocating, and being willing to have the difficult conversations. It means being trained in port care, pain management, ventilators, hyper alimentation, and blood draws. It means taking time to sit and talk, to remember birthdays, and to arrange rides and respite. It means holding a dying child in your arms. It also means having the ability to hold reality and acceptance in the one hand, and the family’s hearts in the other. That visiting nurse was talking about a very unique person: a children’s hospice nurse.
Only an exceptional human can be a children’s hospice nurse and we are blessed to have two in our community, Sophia Schultz and Shoshanna Spielman. Combined they have over thirty-five years of hospice nursing experience, the majority of which has been spent caring for seriously ill children and their families. Recently, I sat down with these amazing women to ask them about their professional and personal lives. “It’s just in our blood, it’s a part of us,” Sophia explained. They told me that when they tried to take a break and do other kinds of nursing, they were drawn back into it. “Once you have cared for one child with a life limiting illness, suddenly you’re considered the expert. You are assigned all of these kinds of cases because you can do it, and nobody else wants to–that’s how I started so many years ago,” said Shoshanna.
Though I was trying to learn more about them, they steered the conversation back to their main concern in life: how they could better serve families like ours. They began to ask me questions. What was our biggest challenge in caring for Madison? What would we have liked to have happen differently? What worked and what didn’t? Their passionate and selfless commitment to improving care for children emerged again.
In 2005 the Children’s Hospice and Palliative Care Coalition launched the Partnership for Children program, a rural care coordination program serving critically ill children and their families on California’s Central Coast. Shoshanna and Sophia were quick to sign on. They have been effectively managing the day-to-day needs of some forty-five families, juggling treatment schedules, transportation needs, and most important, providing a compassionate, supportive presence for families challenged by the nearly unbearable trauma of caring for a sick child. Shoshanna and Sophia are also bilingual and sensitive to cultural differences. They help families with limited English to navigate the maze of medicine by providing translation support and advocacy. Many other health care professionals in Santa Cruz and Monterey have benefited from the pediatric training that Shoshanna and Sophia are providing. They have worked tirelessly to develop effective relationships between providers and families, easing communication at every level of care.
Both Shoshanna and Sophia are dedicated and inspired professionals on the forefront of the pediatric and palliative care movement doing the work that many in the nursing field would not, or cannot do. They provide comprehensive care to families in crisis, bringing them hope—no matter what form hope may take. These two women are empowering and supporting families to be present during a sacred time. Through their example and contribution, these two women have laid the groundwork for improved care for critically ill children from throughout California.
It is with a full and grateful heart that I nominate them for the Hospice Foundation award. Shoshanna and Sophia have already received the gift that working with our children and families gives. I am hopeful that they can be recognized with a visual marker for the exceptional care and comfort they provide. Their deeds will be remembered.
Warmly,
Lisa Buell