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Interview: Dixie Fremont-Smith Coskie, author of Unthinkable: Tips for Surviving a Child’s Traumatic Brain Injury

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(Interview conducted by Tyler R. Tichelaar of Reader Views.)

Dixie Fremont-Smith Coskie is passionate about being a mother, writer, fundraiser, public speaker, and advocate for the disabled. Not just the mother of eight children, she is also the mother of a child who suffered a severe traumatic brain injury. Dixie helps raise awareness and funds for traumatic brain injury through working with both national and local organizations, as well as through many charity events that help benefit children.

Dixie has become a writer of care giving articles, both on the web and in health and medical-related magazines such as the “Health Monitor.” Dixie shares precious tips for other parents who face a traumatic injury or illness. She also provides caregivers support, resources, and advice. She recently contributed five tips on stress and care giving to “Empowered Patients” on CNN. Dixie and her son Paul are engaging, motivational speakers, sharing their inspiring story to give comfort and hope to other families facing serious illness or injury. Their story has been featured in “The Saturday Evening Post,” and the two have made numerous appearances on TV and radio.

Dixie attended Pine Manor College and has worked as a teacher’s aide at the Massachusetts Association for the Blind and Deaf and at the Kennedy Day School in Brighton, Massachusetts working with emotionally challenged children. Dixie also currently works as a Personal Response Associate for a medical alert company, helping those in need. Dixie lives in Upton, Massachusetts with her husband and eight awesome children.

Welcome, Dixie. It’s an honor to get to interview you today. First of all, will you tell us a little about your son and his traumatic brain injury? How did the injury happen?

Hi, Tyler, and thank you for taking time to interview me today and for asking about my son, Paul, who at the age of thirteen was struck by a car while riding his bike — without wearing a bike helmet. Paul suffered numerous injuries, including severe trauma to his brain. In that single instant ten years ago, five days before the Twin Towers crashed to the ground, my family’s world was changed forever by traumatic brain injury (TBI).

Suddenly, my family was dealing with a life-and-death situation, nothing that we’d ever really thought about. The medical world was very foreign to us, and in a word, we were terrified. We waited and prayed constantly at our son Paul’s bedside. Would he survive? Even worse, all the while we questioned what would happen if he did. What would his limitations be? Would he be permanently handicapped? Would he have any quality of life?

Paul was given last rites. What proceeded was a month-long vigil in the intensive care unit where Paul lay in a coma while doctors and nurses worked frantically to keep him alive. When Paul’s eyes finally did open, he could not process information. He could not move his body. He could not speak. He didn’t even know who I was.

Sadly, I have come to find that when parents are suddenly thrown into a catastrophic situation — such as being told that their child has been born with a significant birth defect, or has been severely injured, or has been diagnosed with a life-changing or life-threatening disease — they all experience the same universal emotions: fear, grief, helplessness, and hopelessness. What every parent in these situations craves is HOPE. Hope that their child will survive. Hope that their child will not suffer. Hope that their child will get better and have a meaningful and happy life.

Dixie, I’m sure that this is a touchy subject, but may I ask what difference his wearing a bike helmet would have made in this situation? Do you or Paul feel guilty over his not wearing one?

Tyler, it is not a touchy subject at all, and actually because Paul was not wearing a helmet, both Paul and I have become advocates to help get other kids to wear helmets. Paul will be the first to tell other children that “wearing a helmet might not look wicked cool, but it’s way cooler than getting this badly injured — it’s “unthinkable” not to wear a helmet. We know now that had Paul been wearing a helmet his injuries would not have been as severe.

What made you first decide to write about Paul’s journey and recovery from a traumatic brain injury?

During Paul’s first year of recovery, I kept a diary of all that transpired. A year after the accident, I re-read the diary and realized that our family’s experience and all the knowledge we had gained could help and give hope to others who might find themselves living the unthinkable — living through a Child’s TBI. At times I wrote in diary format, talking intimately to my son as he lay in a coma. This technique reveals to the readers the arc of my son’s medical condition, how my family and I were coping, how I used my diary as a life raft to anchor myself, and conclusions and lessons learned through our struggles and heartache. My thoughts and internal struggles give readers insight into this devastating injury, which can happen to anyone at any time, and will challenge readers to question their own existence, contemplating the meaning of life, death or suddenly possibly becoming handicapped and living a life with disabilities.

Dixie, will you tell us more about why you chose the title “Unthinkable”? I’m also curious how you get the message out to people who probably don’t want to hear about this topic until they are experiencing it for themselves.

Unfortunately, Tyler, brain injury is the leading cause of death and disability for American youth under age twenty-five and projected to be the number one health problem in the world by 2020. The department of defense estimates that 20 percent of all returning veterans will return from Iraq and Afghanistan with TBI. The causes of acquired brain injury such as stroke, brain tumors, substance abuse, poisoning, infection, and lack of oxygen also affect millions of people. A quote from the Brain Injury Association of America says, “A brain injury is the last thing on your mind until it is the only thing on your mind.” It is sad to say, but at some point I think everyone may come to know someone who has sustained a brain injury as it also creeps into many motorcycles, cars, boating, hunting and skiing outings, and countless sports arenas around the world. It usually leaves the “lucky” survivors with an existence of devastating disabilities and families mangled. It can cause a wide range of functional changes affecting motor skills, thinking, sensation, language, and/or emotions. It can also cause epilepsy and increase the risk for conditions such as Alzheimer’s disease, Parkinson’s disease, and other brain disorders that become more prevalent with age. Tyler, traumatic brain injury can change the core of who a person is — It is just UNTHINKABLE! When I see the title written out I see: UNTHINK, THINK, and ABLE.

What was the hardest aspect of writing Unthinkable?

Every time I wrote, I would relive the accident, the injury, the grief, the unthinkable; it was very emotionally draining and all consuming, but writing Unthinkable has also been a healing experience for me. At first, I wrote to keep Paul alive on the pages and to give my son a timeline of events. But ultimately, I discovered another purpose. I wrote to give others hope and a guide to survive through a child’s TBI. I wrote to share my perspective and knowledge — what I learned during the days, weeks, and months after my son’s traumatic brain injury — things that I wish I’d known at the time. And the end of each chapter offers tips and tools to give immediate emotional support, hope, and guidance, not only for parents and caregivers but also for the siblings of the injured child. Unthinkable is also useful for direct care staff and other health care professionals because it provides insight into the emotional trauma that also accompanies the physical trauma of brain injury to help the family as a whole.

Since you are the mother of eight children…how has TBI affected your other children, Paul’s siblings?

Once Paul was stabilized, he left the intensive care unit and went to Franciscan Hospital for Children, a rehabilitation hospital an hour from our home. For the next six months, Paul struggled to learn how to walk, talk, and perform the most basic of tasks again. It’s easy to see that the course of Paul’s life was changed, but what often gets overlooked during the immediate chaos of a traumatic brain injury and the extended recovery process is how it changes every member of a family. Suddenly our marriage, our work, our family life was on hold and no matter how hard my husband and I tried not to be completely preoccupied with Paul and our circumstances, I know that at times Paul’s seven siblings felt isolated or resentful because they may have perceived that they were abandoned, unloved, or even rejected. So on top of taking care of Paul and all his needs, we were dealing with our other children’s emotions, worries, and heartache as they tried to accept the realization first, that recovery from a traumatic brain injury could be a lifelong process, and second, that there was a possibility the brother they once knew might never be returned to them.

I wished I could have shielded the burden, the emotional suffering, and the ripple effects that TBI inflicted on my children, but I couldn’t.…In the last chapter of my book Unthinkable: A Mother’s Tragedy, Terror and Triumph through a Child’s Traumatic Brain Injury, each of my children share their thoughts and experiences with how they coped to whatever degree with Paul’s TBI. This special chapter gives great insight into the hearts and minds of my children, who were six to sixteen years old at the time of the accident, when they were suddenly thrown into a world of very adult issues and adult stresses. My sixteen-year-old daughter appeared depressed, crying without warning; she was unable to concentrate on her schoolwork and alienated herself from peers. My fifteen-year-old daughter became quiet and fearful about everything and started having anxiety attacks. My twelve-year-old daughter needed to be in control of something — and stopped eating. My nine-year-old daughter was scared, not wanting to go to school or even to leave my side, her stomach always hurting. My seven-year-old son complained about being the only boy in the house; demanding to be heard, he started acting out. My youngest at the time, my six-year-old little girl, spent most of her days crying in the school nurse’s office, missing any sense of family and daily normalcy.

But I’m here to tell you today that although first shocked with horror and despair after Paul’s traumatic brain injury, every member of my family did eventually grow to find hope, healing, and even greater love. In Unthinkable: Tips for Surviving a Child’s Traumatic Brain Injury I added a chapter with a collection of the tips specific for sibling-care: “Siblings — The Forgotten Ones: How Parents can Support Siblings,” which will help parents navigate the unforeseen obstacles their “other” children may encounter.

Dixie, did you, your husband, or other children witness the actual accident, and did that affect any of you psychologically or in terms of coping with it, as you described your children’s responses above?

The crash happened one minute from our home. My husband was at work and all the other kids were just playing outside. A neighbor had phoned to tell me to come to the end of the street and that Paul had been hit by a car. When I got there, I saw Paul’s twisted red bike first and then the hood of the car smashed, then Paul lying lifelessly on the pavement. To this day, ten years later, when I approach that intersection, I get flashbacks to that horrible moment. And to this day, every time I hear the sirens to an ambulance tears form in my eyes.

Besides writing a journal, did you seek out any other ways to deal with the situation such as attending a TBI group or visiting a counselor?

I would suggest to anyone dealing with a loved one’s traumatic brain injury to seek help, resources, and at some point when ready, to seek counseling. In my book I give many tips and ideas on ways to deal with the situation such as meditation, yoga, writing, and drawing….

Dixie, is Unthinkable: Tips for Surviving a Child’s Traumatic Brain Injury a companion volume to your earlier book? Will you tell us about your other book?

My first book Unthinkable: A Mother’s Tragedy, Terror and Triumph through a Child’s Traumatic Brain Injury is a memoir and narrative of my son’s first year of recovery from a traumatic brain injury. Though this memoir is seen through a mother’s perspective, it encompasses a large family. It shares how we all were coping through a horrific personal tragedy, while at the same time watching the Twin Towers in New York City fall to the ground. Our story shows how our marriage, family, and world were broken and ultimately made stronger. At the end of each chapter, I share in a bulleted format the tips and tools our family used ultimately to cope and survive during each phase of healing.

What makes this second book different from the first?

Well, every brain injury is unique, depending on the specific circumstances and severity of the injury, and the need for immediate and long-term medical care, rehabilitation services, and the individual patient and family’s situation, so each TBI patient and family may experience similarities in the healing process, but ultimately, they will have their own journey, recovery, and experiences through TBI. My first book chronicles “our” story of hope and survival throughout the first year of recovery after our son sustained a TBI. What is special about my second book, in  Unthinkable: Tips for Surviving a Child’s Traumatic Brain Injury is that it is just the tips chapters from my first book which have been extracted and are now in a format all their own without my emotional story attached; but with the lessons learned on how to survive a child’s traumatic brain injury from a mother who has been there. Unthinkable: Tips for Surviving a Child’s Traumatic Brain Injury is universal in its message to help guide another parent/caregiver through a child’s TBI and is a quick, easy read in a bulleted format geared for someone in the midst of tragedy, sharing a mother’s knowledge and experience from surviving this tragedy. There are also blank pages at the end of the book so readers can begin to write their own notes, their own story of survival and perseverance.

Will you give us an example of a couple of the kinds of tips in the book?

Well, I offer tips on how to navigate through the new terrain of an injured child. What friends should or should not do. How to transition successfully from the ICU to the rehab hospital. How to manage the move from the rehabilitation hospital to home. How to reintegrate a disabled child back into school and the community. How to sustain the rest of the family. How to ultimately cope and survive through the never ending care giving and care giving. Also, because TBI is such a heavy topic, one of my favorite tips is…try to do at least one thing for yourself everyday and to include humor in your life; watch old sitcoms (e.g. “I Love Lucy” reruns) or other silly shows.

Dixie, I understand you also received an honorable mention for one of your books in an awards contest. Will you tell us more about the contest?

After I decided to write Unthinkable, I needed to research everything I could about writing and publishing a memoir and ended up attending the Harvard Medical School’s Continuing Medical Education Course titled, “Publishing Books, Memoirs and Other Creative Nonfiction.” This course was life-changing for me. The knowledge, networking, and resources I gained from this course gave me the tools and confidence to write and submit the book proposal for Unthinkable, entering it into the trade category book proposal contest held in conjunction with Harvard Medical School’s Continuing Medical Education Course titled, “Publishing Books, Memoirs and Other Creative Nonfiction.” Most of the many applicants who submitted book proposals were nurses, doctors, or working in the medical world—I was ecstatic and honored to have been selected to receive an honorable mention for my book proposal and thus…I did go on to write Unthinkable: A Mother’s Tragedy, Terror and Triumph through a Child’s Traumatic Brain Injury. And ultimately, Unthinkable: Tips for Surviving a Child’s Traumatic Brain Injury.

What do you think makes both of your books different or sets them apart from other books that have been written about traumatic brain injury?

Most TBI books are written from the perspective of either the victim of traumatic brain injury or the spouse of the TBI survivor. It is rare to get a mother’s perspective, which reveals the fear of a parent’s worst nightmare: the possible death of a child or being faced with living with the long-term disabilities of a child after one sustains a TBI. What totally sets my books apart from others are the powerful survival tips I share and the how-to guide for other parents or caregivers who may suddenly find themselves living the unthinkable, living through a child’s traumatic brain injury. It is also the tone of the writing in Unthinkable: A Mother’s Tragedy, Terror and Triumph through a Child’s Traumatic Brain Injury that will appeal to others not necessarily experiencing TBI in their lives, as it is a story about perseverance, filled with universal lessons of struggle and triumph.

Besides reading your book, what advice do you have for caregivers of someone who has just had a loved one experience a traumatic brain injury? For example, what did you not know when the injury first happened that you learned later and wished you had known in those first days?

It has been ten years since traumatic brain injury crashed into our lives. And a few things I’ve learned over the years. First, care giving is exhausting, and it is not a weakness to ask for help. Second, it is vital to nurture yourself and your marriage whenever possible. Third, it’s imperative to take time away from the hospital and injured child to take care of your other children’s needs. And finally, I have also learned that to deal with the “new” person who emerges after brain injury, families must mourn the loss of the “old” one who is gone…and then move on to embrace life’s challenges and changes and to love unconditionally. What I wished I had known at the beginning of our journey was to reach out more for help, resources, and no matter what the circumstances, never to give up, to keep hope alive.

Dixie, what kinds of responses have you received from your readers so far?

I have received so many awesome reviews and responses of praise from people all over the world who have read my books. It is amazing that I have been able to impact so many people and to help so many families through this devastating injury and to hear their stories as well.

Do you think you will write more books on the subject of TBI, or will you continue to spread your message in other ways?

I will continue writing articles about traumatic brain injury for health related magazines to bring further awareness to this “silent epidemic.” And I will continue sharing our inspiring story through speaking engagements to give comfort and hope to other families facing serious illness or injury, and I will continue to raise awareness and funds for traumatic brain injury through working with both national and local organizations, as well as through many charity events that help benefit children.

How well has Paul adjusted to life since the injury, and what parts of his life have changed?

Well, Tyler, you will have to read the chapter “In A Child’s World” in Unthinkable: A Mother’s Tragedy, Terror and Triumph through a Child’s Traumatic Brain Injury to get the answer to that question as Paul writes about how TBI did change his life, but I can tell you that traumatic brain injury does not just change its victims, but entire families. One thing I can share with you is that our family’s harrowing journey through TBI has led us to perceive life differently, knowing that no one is invincible and that everyone — despite any perceived or real disabilities — matters and is special! We have all come to know that family comes first and never to take anyone for granted. We now realize that grief changes and passes to some degree. After the fear, our family emerged wearing an armor of faith, perseverance, and learned strength and determination. We try to live each day with meaning, integrity, thanksgiving, a sense of humor, and a lot of love.

Thank you for the opportunity to interview you today, Dixie. Before we go, will you tell us about your website and what additional information we can find there about  Unthinkable: Tips for Surviving a Child’s Traumatic Brain Injury?

Tyler, what most people do not realize is that traumatic brain injury is more prevalent in the United States than breast cancer, HIV/AIDS, multiple sclerosis, and spinal cord injuries. A brain injury occurs every twenty-three seconds. Please visit my website www.dixiecoskie.com for more information about TBI, my books and other resources to help parents/ caregivers and health care professionals survive the unthinkable — TBI.

Thank you, Tyler, for your interest in my books. Happy reading and all the best to you — remember it’s UNTHINKABLE not to wear a helmet!

Thank you, Dixie, and best wishes to you in spreading your message.

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