Lessons from a Butterfly Family: Parenting a Dying Child

Paul, age 12

Paul’s last school photo at age 12

The Colemans are a Butterfly Family and they are wonderful people. Jacquelyn (who goes by Jacque), her husband, Paul II, and children, ten-year-old daughter, Maya, and twelve-year-old son, Paul III,  became a Butterfly Family when they invited Houston Hospice to walk beside them during their longest days – parenting a dying child. I telephoned Jacque recently and asked her to describe her experience of Houston Hospice. She answered simply, “It was a great experience.” What makes this response all the more remarkable is that she was speaking just two days before the one-year anniversary of her son’s death.

When Jacque and Paul II made the decision to stop subjecting their son to clinical trials in an effort to treat his brain tumor, their doctor at Texas Children’s Hospital Oncology Department told them about Houston Hospice. Jacque said she was soon introduced to Butterfly Team nurse, Charlie Young. Her initial meeting with Charlie seemed early; Paul III was still leading a fairly normal life and even attending school. During this meeting, Jacque learned about Houston Hospice’s Butterfly Program.

The Butterfly Program was developed in 1996 to provide special services for children with life-limiting conditions who are aged 18 and younger. An interdisciplinary team of physicians, nurses, social workers, hospice aides, chaplains and volunteers with expertise in children’s care are devoted to caring for children and their families — Butterfly Families like the Colemans.

In February 2013, only two months after Jacque’s first meeting with Charlie, Paul III’s condition declined. He choked while eating a piece of bread at school and was hospitalized. The Colemans were again advised to seek the services of Houston Hospice. They made the call and Charlie Young came to meet with them in their home.

As Paul III declined further and was placed in a wheelchair, Jacque said everyone on the Butterfly Team was very kind and supportive. She said the team was only a text or phone call away and their support made her feel much better about the care she was providing for her terminally ill child.

The Butterfly team also guided the Colemans in helping Maya. Charlie brought books that explained dying to Maya so that she would better understand what was happening with her brother. The Colemans were encouraged to keep Maya’s schedule as normal as possible. When Maya asked to meet her brother’s nurse so that she would know who was caring for him, arrangements were made for her to meet Charlie. The team encouraged the family to help Maya and Paul III create memories and have fun together. Jacque said she only regrets that they never got around to accomplishing the Butterfly Team’s suggestion of making a plaster cast of the children’s hand prints.

If she could give advice to another family going through this, Jacque said she would tell them to listen to Houston Hospice. She said, “As a parent, you cannot accept what is happening; but listen and trust that your child is in good hands. Trust and work with the team because what is happening is beyond a parent’s control.” Jacque also said she would advise parents to contact Houston Hospice early. “Meeting with Charlie while Paul was still relatively healthy, made the process smoother when dying started.” She said they were tired but they were able to go on with their lives.

When asked how Paul III was helped by the Butterfly Team, Jacquie said the experience and skill of the team helped him remain as comfortable as possible. We shared a laugh as Jacque recalled how Paul III loved pretty girls and loved looking at the pretty nurses who worked with him. She said the team knew what he needed and when. They knew when to bring in a hospital bed, and they provided a special chair to aid Paul’s comfort. The team also advised the parents in ways that made the process easier for Paul. For example, they encouraged the Colemans not to force food on their son as his appetite waned. Rather, they were advised to allow him to drink small nutritional shakes. Knowing that what they were doing to care for their son was appropriate helped Jacque and Paul II feel more at ease.

Jacque said Paul III had a smile on his face the morning of  March 23, 2013 – the day he passed away. She said he was always a happy, smiling and loving child, and the guidance and assistance of Houston Hospice made his transition from life easier for him.

The Coleman family will be recognized at the Thirteenth Annual Butterfly Luncheon at the Houstonian Hotel on April 16, 2014. Houston Hospice’s Butterfly Luncheon is a major fundraising event and primarily funds the pediatric hospice care they provide. For more information about the Butterfly Luncheon, contact Cynthia Nordt at 713-677-7123 or cnordt@houstonhospice.org. Houston Hospice is located in The Texas Medical Center at 1905 Holcombe Blvd., Houston, Texas 77030.

–Karla Goolsby, Houston Hospice Communications Specialist 


The Coleman Family will be honored at the Thirteenth Annual Butterfly Luncheon.

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