Family Voices: Stories of Coping and Healing from Medical Trauma | Patient Centered Care and Trauma Informed Care for Pediatric Patients

Family Voices

Families of children experiencing the emotional trauma of life-threatening illness or injury can feel alone and without a voice. The Center for Pediatric Traumatic Stress wants to give a voice to those family members who find themselves in the midst of a medical trauma and who then summon the courage, strength and resources to find their way through it.

In this installment of Family Voices, we share the audio stories of two mothers, Darlene and Kathy, whose children fought very different medical battles, but whose families experienced emotional trauma as a result. With remarkable candor, they share stories of their family's ups and downs and how they coped. Darlene and Kathy have agreed to share their stories so that other families going through the same experience may also find hope and strength from their example, and know they are not alone.

Darlene's Story ...

Darlene is a mother of a pediatric cancer survivor. Darlene's daughter, Lauren - now 11 - was diagnosed with cancer at age 6. Shortly after diagnosis, Lauren also suffered a stroke. With wit and wisdom, Darlene talks about how she, her husband Pete, and their other daughter Katherine coped with the trauma of Lauren's diagnosis and treatment. Darlene also talks about what it was like to go off-treatment ("I equated it to being pushed off a plane and hoping my parachute opened") and the process that she and her family had to go through to put cancer in its place and move forward. ("Cancer is not who my daughter is: cancer is just something our family had to get through.")

Listen to Darlene's story now:

#1: "Does my child have Leukemia?"

#2: A mother's fear... and guilt

#3: Family responses: unsung heroes and post-it notes

#4: Family coping: Trying to keep things normal... when they weren't

#5: On being an overprotective mother

#6: Talking each other off the ledge: the benefits of talk therapy

#7: Coming off treatment: Learning to put cancer in its place

#8: The benefits of having your children talk to other professionals

#9: Advice to other parents coping with their child's cancer

Kathy's Story ...

Kathy's 8-year-old son Stephen went outside to play one day, and woke up six weeks later in the ICU to the sight of his mother standing by his bedside with a mass of grey hair that had not been there before. With sensitivity and raw honesty, Kathy tells the story of her family's odyssey with medical trauma, which began with being told that Stephen would not live through the night, followed by years of surgeries, emergencies, and setbacks and by still more years of grappling with physical and emotional aftershocks. Kathy speaks movingly of how Stephen's trauma not only interrupted her daughters' lives, but how they felt like they needed to sacrifice for Stephen some of the love in the family that was meant for them. Finally she discusses how the healing lessons she and her family learned in the process, including the need for professional help. ("I resisted talking to professionals in the early days, because I thought 'we're fine, we don't need that.' And we did.")

Listen to Kathy's story now:

#1: Stephen's journey: one step forward, two steps back

#2: One mother's miracle is another mother's loss

#3: Impact on siblings: doing without and on your own

#4: From sibling rivalry to healing relationships

#5: Stephen: "Someone is finally speaking my language"

#6: Trying to do it all on my own

#7: Realizing we're not out of the woods… we now live in the woods

#8: The perils of holding your children to different standards

#9: A mother's advice: when help is offered - take it!

More Family Stories ...

Stories

One mother shares her struggles coping, experiencing panic attacks and insomnia , even after both of her daughters’ recovered from life threatening illnesses.
Several parents share what their lives are like raising a child with special health needs, including their struggles, growth, and ways of coping.

Audio and Video

In a compelling brief video shot by her mom, one 15 year old provides an honest take on what it's like being a patient. She has clear ideas about some simple ways physicians and nurses can lessen the stress on patients - protecting sleep, engaging and explaining things to her directly, asking her what she wants.
Hear several patients, like Shanoah Moore (8 yrs old), and families, like Shanoah’s mother Sonya and Tiffany Davis (mother of two young sons with the disease), talk about how their families are living with sickle cell.
Listen to several patients and families, like Danielle Schwager and Matthew Jajen, share their experiences as kids growing up with hemophilia. Kimberly Martin also shares how she imagined her son, Scott’s, future shortly after his diagnosis.
A cystic fibrosis diagnosis forces a family into a completely new way of life, filled with many difficulties and challenges. Countless pills, time consuming inhaled medications, and the ever present possibility of a lung infection alter every aspect of a child’s life. For parents with a newly diagnosed child, learning to cope with knowledge their child will not experience the typical “normal” childhood can be especially taxing. Listen to several young adults and parents share their stories of living with cystic fibrosis
Chronic childhood diseases change the ways families function, cope, and maintain a sense of normalcy. Children and families diagnosed with epilepsy are no different. Even though epileptic seizures come in many different variations, the families they affect share feelings of worry, anxiety, and distress. Listen to several patients and families, including the Gallaghers and the Catherwoods, share their stories of living with epilepsy, the inability to have their seizures controlled by medication, and ultimately their decision to undergo surgery.

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