Symphony of Soul is honored to provide “live musical medicine for the soul” to the young patients at Dell Children’s Hospital. Looking so frail in their hospital gowns with IV tubes attached to their arms, the children slowly trickle into the activities room for the Symphony of Soul performances. Nurses and family members steady them as they walk or push them along in a wheelchair. It breaks one’s heart to witness their vulnerability. Warmth quickly fills the room, however, as the music begins and the smiles spread across the faces of the young patients.
We all tend to feel so helpless when a friend or loved one is in the hospital. How do we help? What should we say or not say? What should we do or not do? It’s hard enough to know how to handle such tender situations with adults, but with children, it can feel unbearable and overwhelming. The questions loom much larger: How do we help this vulnerable little child? How do we comfort his terrified mother and father?
Over lunch recently, I begged my dear friend and soul sister Sue Ann Zerre to write about her experience of supporting her son Zach through 44 major surgeries. “Forty-four surgeries later!” I exclaimed. “Sue Ann, do you realize the profound impact your story could have on other people? It is extremely rare for anyone to survive that many serious surgeries, especially a child. You’ve endured so much and you know from so many agonizing experiences with Zach what people can and should do to help when a child is in the hospital. Please write about it and share it with the rest of us so that we can learn.”
With tears spilling out of her angelic blue eyes, Sue Ann softly smiled and agreed to give the writing a try. Her son Zach is now 35 years old, happily married, working in Austin and a living miracle. The trials Zach and Sue Ann endured would be unbearable to most of us. We suffer greatly whenever a friend or loved one has to have surgery. But 44 times is too much for anyone, especially a young child. While she moves forward with writing, Sue Ann has given me permission to share a little of her story with us, as follows:
“When Zach was born, the doctors came to tell me that he wasn’t urinating. After a few hours I was told that his insides looked like scrambled eggs; he didn’t have a bladder; one kidney was 10 times bigger than the other; his heart had a hole in it; and they gave him a 1% chance of surviving. I was devastated! I knew in my heart that he had a purpose and was going to survive! Zach had 10 surgeries in the first year of his life. During that time, we lived at Children’s Medical Center in Dallas.
There is so much to absorb when your child is born with any challenge, but being a single mom, and without much family support, it was up to me. Zach slept on my chest the first few months in order to hear my heart beat. As he grew, the doctors were encouraged but still very concerned about his chance of survival.
My personal faith and the grace of God are the foundation of our story. The relationship with the medical community – the doctors and nurses – is a special ingredient. It is so important to work with them. We are all a team trying to extend the life of the child. The relationship with the other moms and finding a support system was also very important. I would sit with a stuffed dog snuggled up in my arms while Zach was in surgery. The other moms started doing the same. It gave us a sense of comfort! As Zach got older, I was able to decorate his room with kites hanging from the ceiling, GI Joe figures, plants, and a lot of colored construction paper. It softened the sterile environment of the hospital room.
I found that a lot of my friends couldn’t handle it. A few would come up to see us but were then overwhelmed seeing all of the children with their challenges. It would hurt my feelings but I accepted the fact that, until you go through something like this, you have no idea how it feels. We need the support of family and friends. If there isn’t any family, you make friends with the other mothers and you support each other.
When Zach was 8 years old, his roommate passed away and that was his first time to lose a friend. It had a huge affect on him. He had been in a protective bubble surrounded by the medical community. It gave him a false sense of security and so it was a shock when his friend died.”
Sue Ann shared with me that nurses and doctors can make a positive or negative impact on the children and families, depending on their people skills. The aloof or arrogant doctors and other medical personnel only add to the extreme anxiety that the families are already experiencing. But those who are warm and tender and who take the time to communicate with compassion can have a very positive impact.
With this in mind, I am happy to report that my lovely half-sister Dr. Mary Kathryn “M.K.” Hyland Eagleton has begun her residency at UT Southwestern-Austin in pediatrics at Dell Children’s Hospital. Needless to say, I am very proud of M.K. and I know that her brilliant mind, combined with her sweet, humble and gentle demeanor, will have a very positive impact on everyone around her at Dell Children’s, most especially the young patients and their families.
In addition to having compassionate caregivers such as M.K. on the premises, Sue Ann assures me that our Symphony of Soul musicians are providing a wonderful gift to the children and families whenever they perform at Dell Children’s Hospital. There is nothing like music to lift the spirits of those who are in physical and emotional pain. The families of the young patients say time and again that it comforts them to see their fragile son or daughter smiling and singing along with the music. Sue Ann shared with me that when Zach was in the hospital, “People would bring their guitars and sing. Music brings life to these kids,” she said.
I look forward to hearing more of Sue Ann’s story, for I know it will be a valuable source of insight for us all. In the meantime, Symphony of Soul will continue serving the precious children and their families with love, compassion and, of course, “musical medicine for the soul”.
Leslie Hyland Rodgers