TBI Ten Years Later: A Mother's Story Continues

TBI Ten Years Later: A Mother's Story Continues

It has been almost ten years since traumatic brain injury (TBI) crashed into our lives, changing our family forever. People always ask, “How is your son Paul doing now? How are you, your husband, the other kids? How has your family survived?” I usually give my polite, standard answer: “Oh…thanks for asking, we’re all doing fine. And you?” But the reality is — unless you have experienced the loss, the heartache, and the ripple effects that brain injury can inflict — you cannot possibly understand the magnitude and the seriousness of the life-altering implications. The long-term impact that TBI imposes on the injured person, family members, and friends is unthinkable. The nightmare of TBI relives itself day after day, month after month, and year after year. Grief and sadness persist even ten years later, despite all the miraculous gains my son has made since his initial injury.

After the shock of Paul’s accident and TBI diagnosis "• when I understood the reality and severity of his injuries, knowing that they were likely to include lingering deficits and handicaps "• I wanted to bury my head under a pillow and slip under a thick blanket of denial. But to survive, I realized the necessity of being strong-willed and maintaining an attitude of never giving up. Everyone — myself and my family as well as the doctors, nurses, therapists, and even Paul himself —would have to draw on inner resources we had not known existed.

In the early stages of Paul’s injury, he was immobile and essentially in a vegetative state. We suddenly had to become his eyes, his ears, his voice. We needed to advocate for his every need. My husband and I fought to find the best medical, financial, educational, legal, vocational, and rehabilitation services available. We never stopped advocating for our son’s needs or for those of our family. As days turned into months, and months turned into years, I do not know where our energy or drive came from to venture into areas we knew nothing about. But there was no way we would stand idle without trying to help our son possibly regain even some of what he had lost after being struck by a car while riding his bike at age 13.

We came to realize that the outcome of each TBI, like each person, is unique. A person’s outcome depends on the specific circumstances and severity of the injury, immediate and long-term medical care, rehabilitation services, and the individual patient and family. We also learned that many people with TBI plateau relatively soon after their injury, without making huge gains. Sometimes these injured people and their families are left to cope with so much beyond their control: cognitive, memory, behavioral, physical, emotional, and social changes … the medical bills and never-ending insurance claims … the everyday demands of cooking, laundry, cleaning, yard work, going to the office, maintaining a marriage, and keeping other children’s studies and activities moving forward.

Rehabilitation

After many months in ICU, our son was stabilized, but the urgency continued. Getting him into a rehabilitation hospital was key to learning how to speak, to walk, and to perform basic tasks again. We knew Paul’s recovery was questionable and that he could possibly remain bedridden, wheelchair-bound, or cognitively impaired. But the months of grueling shifts of speech, occupational, and physical therapies began to pay off. Paul fought back like a champion! We began to see small gains — he blinked his eyelids, lifted a finger, uttered a word. Seeing the healing begin was powerful and moving. Yet Paul still had a long way to go.

Reintegrating Home

Anticipating Paul’s release from the rehabilitation hospital, we were faced with a new set of questions. What would we do next? Paul was still using a wheelchair and a walker. He was still struggling with memory and speech loss. He still needed assistance with everyday activities and self-care. I worried about how we were going to cope. When my husband or I were home, we’d tried to focus on the needs and cares of our other children, while managing the daily chores that made the household run smoothly. When we’d been at the rehab hospital, our only focus had been to take care of Paul. I was not sure how, or if, it would even be possible, to mesh these two demanding worlds into one.

I knew our family would be under more stress and would have to surpass the extraordinary level of support and help we were already extending to each another. We had to think about all aspects of home nursing and medical care, to obtain and install all assistive and adaptive equipment, and to prepare Paul’s siblings for the homecoming of their “new” brother. We suggested ways for the other kids to help, and we gave them permission to back off if need be. The caregiving was both never ending and exhausting. We had to recognize our own limitations, shed any guilt, and ask for help from our community, friends, and family.

Outpatient Therapy

Continuingoutpatient therapies was important to help Paul regain more movement and thinking capabilities. We logged many miles driving to and from his new outpatient facility, 20 minutes from home. I was shocked at how many injured or maimed people came and went every half hour. Missing legs and arms could have been one of the criteria for entry. And the therapies went on and on and on….

Reintegrating Back to School

We tried relentlessly to set up home tutoring through our town’s special education department to get Paul the mental stimulation he needed to continue recovery. But after investigating special needs schools and other facilities, we made the hard choice to try to reintegrate Paul into the public school system. We recognized the challenge because specific educational processes and styles used in teaching TBI students are very different from those used in teaching individuals who have permanent birth defects. Paul needed an Individual Educational Plan (IEP) geared toward his specific needs. He underwent a neurophysiology examination, which is concerned with the relationships between brain function and behavior and considers how injury may affect learning, communication, planning, organization, and relationships with others. The neurophysiologist evaluated Paul’s cognitive abilities and deficits and provided teachers with suggestions and methods to stimulate and improve new learning. In other words, the evaluation was used to help develop Paul’s IEP. When Paul returned to school, the break from constant rehabilitation allowed our days to regain some degree of normalcy.

Friends and Family Relationships

All of our lives had changed dramatically since Paul’s accident. I know Paul felt the absence of the phone not ringing, and of his friends no longer coming by to hang out. With the time that had passed, most of his friends had distanced themselves. Some were just typical self-centered teenagers, but others could not relate to the slowness with which Paul now talked and walked, and could not comprehend the differences, though slight, in Paul’s personality. To his peers, Paul appeared childlike, odd, and different. To adults, Paul was an inspiration of hope. His subtle humor made everyone smile.

Over time, my husband and I and our other seven children began to realize two things: the person we once knew might never be returned to us, and recovery would be lifelong. Because all of our lives had been put on hold for so long while we coped with such staggering changes, we started to nurture all of our family relationships. We gave permission to each other to start moving forward, to begin to go back to our daily routines, including even recreational activities.

Getting a Job

As time went on, Paul’s mobility and his physical, mental, and cognitive abilities improved. He no longer needed the special school accommodations that we had fought for so desperately: the personal aide, the small classroom atmosphere, a personal computer, scheduled rest periods, books on tape, and so forth. At Paul’s high school graduation, he walked to the podium to receive his diploma — no wheelchair, no walker but a clear understanding of all that he had accomplished. But leaving school also meant leaving the only support system we knew. The fight would continue, and we would have to again advocate for Paul to help him find employment and become more independent. Working with our state’s rehabilitation office, Paul gained employment at a local retail store where he started as a greeter, quickly moving up to sales clerk and then cashier.

Higher Education

Paul is not the same person he was before the crash. He walks off-balance, though to his family, it is a blessing he walks at all. His voice is slow and monotone. Yet, we are extremely grateful that he can speak. Cognitively, he may be slightly slower to process information, to form a thought, or to respond to a question. But the reality of his ability to react with maturity, humor, and intelligence is beyond our belief. The tremors and shakes that affect the left side of his body make it hard for him to do almost everything. But his persistence and perseverance are mind-boggling. Ten years after Paul sustained a TBI, he volunteered at the hospital where his life was saved. He speaks at rehab hospitals, medical facilities, and preventive organizations talking about TBI and the importance of wearing a bike helmet. Remarkably, he is in a higher education program, attending Lesley University (The Threshold Program) in Boston, where he is living independently, surrounded by other young adults.

Ten Years Later

Despite all the miraculous gains my son has made over the years, my heart often remains heavy. When I look into my husband’s or my children’s eyes, I can still see the lingering fear, the permanent scars.

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. The fragility and meaning of life have indeed become more real as my family has found new qualities, insights, and purpose to our days that would not have surfaced if the injury had not happened. And even ten years later, the sound of an ambulance or the sight of a hospital can evoke tears as we relive and experience flashbacks to that unthinkable day of the accident.

Ten years later, my heart also remains heavy as I think of other families who will receive the unthinkable news that one of their loved ones has sustained a life-altering injury. I understand all too well the grief and uphill battles they are sure to encounter. I also pray that these families will reach out to get help and resources, to have the strength and will to advocate, to never give up … and to keep hope alive.

Written exclusively for BrainLine by Dixie Fremont-Smith Coskie. © Dixie Fremont-Smith Coskie, 2010. www.dixiecoskie.com.

Posted on BrainLine February 28, 2011.

Comments (23)

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my children mother had a brain aneurysm 22 days ago and is in unconscious state.They said there is 0% percent chance she will recover due to all the brain damage.But we see signs of movement when we speak, heart rate races when her teenage kids are present. She has damage on both sides of brain. I think Dr want us to let her go but she still with us as far as I can see. I keep looking for articles of miracles and hope. thank you.

P.S. I lost my mother to the same brain injury 30 years ago.

My fiancé was in a horrible car accident a month ago. They performed tracheotomy and was moved from the ICU to another floor. He just started opening his yes but closes them after a while. His eyes twitch when we speak to him. The doctors say that that doesn’t mean anything as those are not the signs they are looking for. I’ve been trying to find a support group or other people who have been through this Situation as I’ve never in a million years would of thought I’d be here. We are both young parents and have two kids and I’m trying to stay level headed as this process of waiting does initially take a toll. I’m praying and trying to stay positive that he will wake up.seeing other people stories gives me hope but not everyone has the same story.

My son was in a motorcycle accident July 12, 2015, he to was in a vegetative state with severe TBI. He has come a long way but I do notice that the last year and a half not much at all has changes. He is now 29, friends stopped coming by a year ago, and he keeps asking to go home. I wish when he was in the hospital the doctors would have given more information then "wait and see." I can see in my son's eyes how unhappy he is and not understanding why things are the way they are. I am sorry but no one can tell me this is better then him being gone, because in my heart he is gone.

My husband was injured at work 18 months ago, DAI, 9 months in the hospital/rehab and home now with 24/7 care and nursing visits 3 xs a day. He is on a tube feed, has difficulty speaking (primarily finger spells), unable to walk, incontinent, npo due to inability to swallow/manage secretions. He is 53. He is a wonderful man, still there, says frequently he wants to get better, but this injury was so catastrophic. I miss him every single day. I miss his hugs, his laugh, his personality (friends with all), I miss every aspect of him that made him who he was. I try every day to make him smile and know how much he is loved and that I will always love him and be here for him as long as I'm on this earth. That there is no other for me . But I miss him. Our children are adults, love him dearly but will go on with their lives and raise their own families etc. I see the difference in visits with family/friends a year and a half in and feel sad for him. I just miss him. I don't think that will ever change or I will ever stop mourning that loss. Thank you for sharing. I am grateful he is here with us but how do you answer those random questions now...he's doing well? Hospitalized with pneumonia, can't walk? Can't talk? Can't eat? I just say one day at a time. He is loved.

Gosh, how I can relate to the “we’re fine, how are you?” response to people inquiring about how my dad is doing. His TBI doesn’t go away and the vast majority of people don’t understand that.

My dad had cancer many years ago, before his TBI, and it was cured, and there was a neat and tidy conclusion to that. People easily understood that. But people don’t grasp that there is no neat and tidy conclusion to TBI. The injured person and their family continue to feel the effects and impacts every single day, forever.

So, I really do just say, “Yup, he’s doing fine. How are you?” because the real answer is one that no one wants to hear, and one that I just don’t have the emotional energy to speak anymore. Not talking about the reality of his life, and our lives, after TBI is the only way I can seem to move on and stay strong.

My son went into the hospital for a simple elective surgery. The doctors screwed up he had a massive hemorrhage stroke and almost died. Now he has a traumatic brain injury. We are forced to trust the healthcare system that failed us.

My daughter was in a horrific car accident 32 days ago. She's on a ventilator, chest tube, broken vertebrae in her neck, tracheotomy and has a diffuse axonal injury. She's not breathing on her own as of yet, but we have hope. I'm terrified. She has a 3 year old daughter, single mom. I'm heartbroken and don't know how to cope. Reading some of these stories gives me hope that someday she'll wake and come back to us. It's in God's hands but I'm never ever giving up. I'm so sad and so very scared. Thank you for your inspiration of HOPE!

So sorry your daughter is going thru this. I can only imagine the heartbreak. Prayers for your family and her sweet 3 year old. Recovery can still occur no matter what doctors say. Neuroplasticity is an amazing thing.

Doreen, I understand what you are going through, My daughterage 17 was in a horrible car accident.. was on ventilator for 4 months, suffered TBI.. two years in vegetative state..etc. if you need to talk message me through Facebook. Gail Toppings Ingram

My dad was riding his bike on Thanksgiving day and got hit by a car. He was wearing his helmet but has been in a coma for 32 days. Doctors dont think he will ever wake up. He has diffused axonal brain injury. But we havent lost faith or hope. I miss my dad though. Hes 55 very active and is mt best friend. I only research survivor stories because it gives me hope

Thank you for your story. We are now in the beginning of a TBI journey for my nephew who was victim of a horrible car crash that has left him with a severe brain injury. He remains in a coma and the hospital and Doctors give us little hope. He is 24 years old, very healthy. Hearing stories from other families who have experienced similar has been helpful. Thank you.

My son suffered a brain injury from a car accident in July. Seven weeks have gone by and he left ICU and is in rehab here in Minnesota. You stated you have endured your grief for 10 years and mine is just starting. I am not sure how I will handle time as the days go by. At this point, I cannot look at pictures of my son as he was; as a child, the day of his graduation, the day of his wedding. The wound is too fresh for me, but reading your story has somewhat lessen my pain at this time. I hate people telling me how to act, how to not show my pain and feelings in front of my son, and more or less, buck and get on with supporting him. It is difficult to turn it off, but I need to find a way to understand that this is now the new norm for my son and my family. I am thankful we were able to celebrate his 38th birthday last Saturday. We do see some improvements, but that strong feeling of wanting our son back as he was, pushes it way into our thoughts. This is a unique club we have joined with you and many others. I look for encouraging and brave stories such as yours everyday to gain guidance and strength. Thanks for your story and I wish all the best to Paul and to your family.

Hi Paul. We are new to this also- looking for guidance at the very beginning of my nephew's journey. My 24 year old nephew was victim to a horrible car crash that happened 11 days ago and is still in a coma with a severe brain injury. He's in critical care and doctors say he may never recover, may never open his eyes again. We as a family are not giving up and now rely on prayers and hope. Reaching out to others for those encouraging and brave stories so please share if you can. We need to hear all we can.
Thank you, Kandy

Your story is compelling. My son suffered a severe tbi in January 2009. The first 10 days they were sure he was going to die, then his chance of survival increased but not without expectancy of brain damage and at least a year in the hospital. He not only survived, but walked out of the hospital several weeks later with very little loss of cognitive skills, loss of hearing in his right ear, and most of his memory in tact. I feel blessed and guilty.

Hello, I had a very similar case about 14 years ago. I am so very lucky to be in the condition I am and would like to share stories.

I am almost 2 years into a relationship with a tbi survivor.
Her accident was 12 years ago and to me she's perfect.
she tells me all the time that she wishes she could see herself way way that I do. But I don't see a woman who struggles physically and mentally.. All I see is Nicole. The best thing that has ever happened to me.

Thank you for sharing this eloquent story about your son. My son received a serious TBI art the age of 12 while up at bat, in the occipital part of his head. He is now 18, a senior in high school. Our lives were turned upside down. He has accommodations but wants to help others as he was help d by becoming a neurosurgeon. We lost all our so called friends and family because a TBI is invisible.

My daughter suffered from a severe brain injury from a brain Infection that took place on 2/2013. I have been struggling lately with allowing myself to continue to grieve my daughter prior to the Illness. I have been looking online for days, for anything that says the child before the injury you once knew is gone, has died... I have been wanting to read another's mother's experience with this. I was starting to think I was alone. That was until I came upon your journey. I can relate to you in so many ways, I'm a mother of 6... You have been an answer to my prayers, the "last ten years" is exactly what I have been searching for.... Thank you for sharing your story, it means more than you could ever imagine. Best of luck to you and your family....

No, you are not alone at all, I can relate so much to your story, because my daughter, in 2014, at the age of 15, suffered the most severe TBI after the car accident. The journey to recovery continues, very difficult, heart-breaking journey.

My daughter was 15 too when injured in 2012.

I feel for you in this story. Many years ago I had an injury where I lost all my memory pre accident. I was 30 at the time.
There was no rehab at the time and luckily, my brain went into making it work.
I'm currently writing an autobiography about what it is like.
How to go from waking up with no memory of 30 years to how with a lot of work ended up where I am now
davidwaters.site/autobiography
All the best in the future and hope life gets a bit better.
It is as hard been the sufferer as it is for the family concerned.

Thank you for sharing your sons story .. Many Blessings Of Love For Him , You and The Rest of Your Family.
My grandson Hunter was in the back seat of a car that was struck by a tractor and trailer when he was 1 year old , he is 5 now . My son and daughter in law are trying very hard to make his life the best they can . He doesn't have use of his right side , his speech is very little.. but he smiles and for this I'm so very grateful . If you have any suggestions please write me .. my email address is
Skylark127@gmail.com

How long did it take him to walk without walker? I had a tbi 15 months ago but still need my walker