By Stacey L. Bergman, MA, MSW, LCSW
As I sat across from her (Elizabeth) during our last meeting, I realized that she is not the woman I first met. I first met Elizabeth five years ago when her daughter Natalie presented to the hospital with new onset seizures. She and her husband Miguel were understandably terrified and unaware of the long road that lay ahead of them. We sat together in that uncertainty.
When a child is diagnosed with a new illness or condition, parents often grapple with their own emotions while trying to attend to the immediate needs of their child. Suddenly, parents’ hopes and dreams for their child seem impossible. Instead, they may be filled with overwhelming fear and concern. They have questions about the immediate situation as well as what the future may hold. Each family member experiences the diagnosis in their own way and feels their own personal loss as a result.
Seizures are the third most common disorder of the nervous system (Epilepsy Foundation of America, 2007). Seizures occur when there is an abnormal discharge of electrical activity in the brain that usually causes a change in behavior. The type of seizure determines how it will present itself (generalized tonic-clonic, absence, complex-partial, etc.). A seizure’s type, location, and duration are some of the factors that determine its impact (Browne & Holmes, 2004). Medication is typically the first treatment used. However, when seizures that do not respond to treatment with medication, other interventions such as surgery are often explored. The Epilepsy Foundation of America reports that approximately 300,000 children under the age of fourteen have been diagnosed with epilepsy (EFA, 2007).
Living with a seizure disorder affects the child as well as the family. Siblings, spouses, and extended family members often feel rejected or ignored during medical visits and hospitalizations. Parents may become over-protective for fear that their child will have a seizure in their absence. As a result, children with seizures may feel isolated and frustrated by the lack of normalcy in their lives. Many studies indicate that a parent’s perception of their child’s condition has a dramatic impact on the child’s perception. Thus, parents not only have the opportunity to enhance how their child experiences epilepsy but also how the child shares it with the world.
Unfortunately, Natalie’s seizures became more and more difficult to control. Despite multiple medications, her seizures persisted. When she was three years old, Natalie underwent epilepsy surgery. To everyone’s dismay, Natalie’s seizures returned after only a brief reprieve. Weeks, months, and years continued to pass. Her older sister Emily felt things never would never be the way they used to be. The girls’ parents struggled to meet financial demands while seeking every treatment available. As a result of enduring daily seizures; Natalie missed many opportunities to interact with her peers. The stressors of a seizure disorder or other chronic condition are often too much to bear.
Marriages may result in divorce, siblings experience depression, and families withdraw from available support systems But there is hope and there is help. Elizabeth and Miguel were determined to keep their family intact throughout the years of hardship they encountered. Although difficult at times, they learned how to let people help them along the way and teach them new tools to navigate the often winding road they were on. The family learned how to talk openly about the impact of this devastating condition. They learned how to be angry, not with each other, but with the change in the life they had known before. They learned how to grieve for what they had lost and for the pain they felt. Most importantly, they learned to hope for the good days and to strive for moments when they could enjoy one another.
Every day, families are struggling to take care of a child with seizures while also struggling to keep their family unit intact. A seizure disorder can not be “solved” with medication alone. It impacts patients and their families on a physical, social, emotional, and financial level. Optimal treatment requires care delivered by a multi-disciplinary team. Natalie and her family were treated by a Comprehensive Epilepsy Center. The focus of their care was not only on medical intervention but on the family unit as a whole. Important elements included medical and surgical care, nursing care, neuropsychological assessment, and psychosocial team support for the parents, patient, and siblings.
At age seven, Natalie told her parents and her treatment team that it was time to have another surgery. After undergoing a second epilepsy surgery, Natalie is currently seizure free. The family routine still includes trips to the physical therapist and frequent doctors’ appointments. However, life has returned to a kind of “normal”: both girls are cheerleading, enjoying school, and looking forward to school dances. Their parents enjoy date night and look forward to planning the next family vacation. Of course, there are moments of sadness and anxiety for everyone. But when that happens, Natalie says “Come on guys, you gotta be brave”.
At the end of our time together today, I look across the table from Elizabeth and I know we are ready to part ways. The woman I met five years ago felt hopeless and lost. Sitting across from me today, she is full of hope and direction for the future. The journey is far from over but she now walks it with a different beat: she is an advocate, a warrior, and a hero.
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