Foreword: Why this book?
Once you choose hope, anything’s possible.
–Christopher Reeve
This is a story that needed to be told. It is an inspiring story of darkness and light, of despair and hope, a profoundly human story of a mother dealing with the unexpected destiny of taking care of her young daughter with a severe brain injury, sustained a in a car accident.
This a story of a mother struggling to come to terms with her own need to survive and make sense of the unthinkable.
This is the story of Janie Smith, founder of Hope Beyond Trauma, a courageous lady who now dedicates her life to helping those facing their own traumas and also helping their caregivers come to terms with the difficult ordeal of suddenly caring for their loved ones.
This is a story made tragically current by the war on terror, by a time when many soldiers fighting overseas in Iraq and Afghanistan fall victim to brain injuries and suffer long-term consequences of their participation in the war. While health care providers initially attend to these patients, their families are eventually responsible for their long-term care.
This book is dedicated to these families and caregivers as they embark on their heroic daily routines of caring for their heroes who are now in need of support and help. Sadly, traumatic brain injuries are the “signature wounds” of this war on terror. Families of many soldiers anxiously await the return of their loved ones, celebrate their reunion—and then find themselves dealing with a shocking new reality of welcoming home a soldier suffering with a brain injury.
The path to recovery can be extremely challenging. These parents and spouses struggle to find and receive guidance and support in winning their very own war.
Caregiving is also increasingly relevant; with longer life expectancy, more adult children find themselves dealing with elderly parents who suffer from degenerative mental illnesses such as Alzheimer’s or dementia. These ailments, from a practical standpoint, can be seen as a traumatic brain injury “in reverse progression,” in which caregivers must put up with increasingly demanding schedules while coming to terms with the new reality of caring for a “familiar stranger,” knowing all too well that this is a consuming journey with no hope of recovery.
Each story is different and unique, and yet each story is sadly similar. Spouses, mothers, fathers, adult children and other caregivers find themselves dedicating an immense amount of time to their loved ones who can no longer take care of themselves. These caregivers need outside support in their extraordinary endeavors.
No one can fully understand someone else’s pain, frustrations and fears. Each story is unique, as is each person’s reaction to pain, to change, to trauma. However, there are some important considerations and learnings that apply in most cases. This is why the coaches and counselors of Hope Beyond Trauma work to ease the way. Their work is relentless and their commitment unwavering.
Maybe you know someone who is taking care of a loved one … and you never fully realized how hard that is. Maybe you wanted to help but did not know how; here is your chance to find out. Or maybe you know all too well how demanding caregiving can be.
Whatever the reason you opened this book, we sincerely hope you will find it thought provoking and useful reading. Whatever situation you are facing, we hope you will read on and be inspired to discover your own beam of Hope, which can filter through even the darkest clouds of life.
Ilaria Vilkelis,
Geneva - Switzerland
October 2010
The Phone Call that Changed Everything
When it is dark enough you can see the stars.
–Ralph Waldo Emerson
On the 11th of April 1989, Richard had planned a big surprise 40th birthday party for me, but the day did not unfold according to his plans. That morning I prepared breakfast as usual, not knowing what was in store. Nothing in the air suggested it would become a day I would remember for the rest of my life. A day that would change the destiny of our family.
Richard always left early to go to work at Fort Bliss. I went to work at Dunkin’ Donuts, Tanya and Tim left for school. Terry stayed home, since he was not feeling very well.
It was shortly after lunch when Terry called to let me know that Tanya’s school had called, asking me to come home and give them a call back. The conversation felt strange. I had a nagging feeling that something must have happened.
As Tanya had been a rebellious teenager lately, I began to wonder if she had done something that had gotten her into trouble. Maybe the principal needed a word with me. I drove home somewhat puzzled, wondering what had happened.
When I called the principal, he told me that there had been a car accident and they thought Tanya was possibly involved. He said I should contact local hospitals to find out if she had been admitted. I immediately called my husband. In a matter of minutes Richard called back, stating that Tanya had been Life Flighted to William Beaumont Army Medical Center. He would send one of his agents to pick me up and would meet me at the hospital.
The fact that she had been airlifted sounded very serious. It was still not yet clear what happened. We had no news and I had no way to know. I got into the car, not knowing what to expect. Many questions were swirling around in my head. Was Tanya dead? Was Richard afraid to tell me over the phone? What happened? Why? I would have to wait for the answers.
As I arrived at the hospital, it became clear that Tanya had survived the accident and was fighting for her life. She was undergoing surgery to reduce the swelling in her brain. The doctors were not sure she would survive. We were left in a secluded waiting room for a long time, a time that felt like an eternity. We just sat there facing an uncertain future.
Eventually, the surgeon emerged and started explaining their procedures and updating us on Tanya’s condition. They gave us many details. Since I was in a state of shock, I only heard bits and pieces of the conversation. “What did they say? What did they say?” I kept asking my husband, nearly unable to focus or to make sense of what was being discussed.
A couple of hours later we were allowed to see Tanya for a short time. She was unconscious, her immobile body suspended by a maze of tubes to which she was connected. The heart monitor screeched and the repetitive sound of the respirator pulsated by her bed. There she was, my only daughter, in the trauma unit! She had died in the helicopter and was revived. She was still with us! But for how long?
She had blood in her hair and her face was swollen. I could barely tell if she was really our Tanya with all these machines around her. She was on a respirator, tubes, monitors … The nurses were attentively watching her reactions in our presence. They told us that she had recognized our voices because the monitor had registered an increase in her heartbeat. We called her name and took her hand. She squeezed it. We felt hopeful that she had been able to really recognize us. We were warned that squeezing may have been simply a reflex and held no promise of recovery.
The doctors were not yet in a position to provide a prognosis. They never do in these cases. There was nothing that we could do but wait, hope and pray.
Tanya was alive, but severely injured.
We drove back home that evening. I remember holding my husband tight and just curling up in our bed, holding each other close. Dazed, my life was frozen in time, as if nothing else could ever matter anymore.
When I woke up, I felt I had been punched in my stomach by the strongest man on earth. Quickly I realized that my pain would not help Tanya, and it was time to return to the hospital. I had to pick myself up and face this new challenge. I knew I needed to be alert and ready to make difficult decisions. It was now that Tanya needed me more than ever.
The Accident
We had no idea yet if Tanya was going to survive. The social worker suggested that Tim and Terry should come and visit their sister and say their