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Dixie Fremont-Smith Coskie, BrainLine Page 1 of 2
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.
Written exclusively for BrainLine by Dixie Fremont-Smith Coskie. © Dixie Fremont-Smith Coskie, 2010. www.dixiecoskie.com.
Comments [34]
Just shy of three years now, our nineteen year old daughter is a miracle indeed . She suffers from an anoxic brain injury when an undisguised infection attacked her lungs causing ARDS. She was in Children's hospital for seven months. She became septic, everything that could go wrong went wrong. But prayer saved her life. We are now dealing with her loneliness , memory loss, and violent behavior but continue to take her to a psychiatrist, neuropsychologist, etc. Despite all of this, (we walk on egg shells too) God is using her for many great things. Last night we shared her story with a key club at a local high school who help support Children's hospital in Birmingham, Al. We have a lot to be grateful for. See her story on YouTube , Katie Hamlin -child of Children's . Thank you Dixie for giving us a chance to provide hope for others.
Our daughter suffered a brain hemorage during brain surgery when she was 18 years old. This was a total shock to us and we somehow managed weeks of her being in the hospital and then outpatient rehab. A year after the operation, she ended up again in the hospital for seizures and other complications. She has worked so hard on her health and we are so proud of her. She is 20 years old today and on med leave from college. This has been a life altering experience for everyone in our family and we have grown spiritually as a result. She is back for the most part, but does have some memory loss and requires accomodations for any deficits. We are feeling blessed, but we work hard at it everyday. Bless you all that can relate to such an experience.
Our son is 23 years old and he was in a bad vehicle accident on December 10, 2011. He has severe TBI to the frontal lobe. He was in a coma for 5 weeks and has since learned to walk with a cane, talk a little, but he has not gotten the feeling back in his right side yet. He has done amazingly well in 4 months and we thank God every day. I miss our old son and we wonder how much of him we will get back but I am just thankful that we still have him. It was great to read all of the stories here. I knew nothing about TBI at all until this happened. The biggest thing we have had to learn is to stand up for our son. It really does effect your whole family and can put a lot of strain on your marriage. Thanks for listening.
Our son was 5 when he suffered a brain injury related to an ecoli outbreak. We quickly realized that the child that came out of the hospital was not the same child that went in 4 weeks earlier. For days his life hung in the balance and eventually he was discharged. He is now 16 and we are still mourning the loss of what could have been. Our thoughtful, energetic, intelligent, thoughtful and humorous child. For the past 12 years we have all been walking on egg shells trying the best we can not to set him off on one of his many and sometimes violent temper tantrums. We advocated for years for supports in school which he is now refusing. He feels no remorse and is unable to read people and thus has become a recluse. He accepts no responsibility for any of his actions . His longest job lasted one day due to the lack of social skills he has. Even with full time tutors social worker and a psychiatrist we feel that we have probably lost the battle for him. His memory is poor and his organizational skills are negligible at best. We are oh so tired and mentally exhausted from dealing with him. We hav 3 other children who we also have to try and devote our time to but he has taken so much time away from our relationship with his siblings. We love him dearly and have only wanted for him to have the best chance at life, but it just isn\'t working and we dont know what else can be done at this point. A brain I jury is truly a hardship that not many can relate to which has been equally as frustrating over the years.
My son was in an auto accident 6 1/2 years ago and suffered a traumatic brain injury. I was told he was young and strong and to wait and see what we got. He is now 29 years old and continues to progress slowly. The road has been very difficult since he had no Insurance and was never given the opportunity to go to rehab. I work with him daily and he has regained movement on his right side and is beginning to gain some on the left side. He says a few words but uses a Zap communication device to type what he is thinking. It has been a long road but I am thankful for all of the progress he has made. All of your stories are encouraging and I wish the best to each and everyone of you.
SO sorry about what happened. From doing research on brain health I can tell you sometimes small dose of ritalin can help recharge brain. ALso the herbs bacopa monneri, ginkgo biloba and ginseng are brain tonics. Ask the doctor, well ya know what, don't bother cause they usually don't have a clue about this stuff, though they'll jump on ritalin suggestion. BUt ask anyway just for fun. Maybe the doc is smarter than most. Also, PROTEIN for the brain. Also, good news is recent brain research is showing even after a TBI, the brain is amazingly resilient and continues to HEAL over many years, especially when optimum health is constant. Eating the best, organic foods and foods with most vitamins in them is critical to healing and improving brain. THings will get better.
Thank-you for sharing your story! I sit here and weep, I myself had a TBI almost 24 yrs ago, at the age of 12. I remember who I was before and who I had become after the injury. I have daily battles I fight due to having a head injury. I feel your pain, my parents share it too. I just want to say its awesome you are getting your story out there! Paul rocks he survived!!!
Hi I am a mother of Alfie (12 years on from head injury), we were told all the negative stuff (will not, walk, talk, be fed with a tube and also have trachy for life). Fast forward 12 years my son has achieved so much, he has run the marathon, climbed kilimanjaro and he gives speeches in front of 300 to 400 hundred people about head injury, he is an absolute inspiration! Never ever give up and always be positive. My son always sets himself goals, his next goal is to pass his driving test (which is proving to be very very difficult) but he says that people told him he "wouldnt walk but he ran a marathan"! He will never give up and we will never give up on him
Thank you for your story and everyone for commenting. It is only all of you who are either the patient, the parent or friend that understands all the emotions we have all gone through or go through. My daughter was a pedestrian and hit by a car 3 1/2 years ago and suffered a TBI. Fast forward after being told she would not survive, to she would be a vegetable, to she would be in a vegetative state for life etc - she is an amazing almost 13 year old girl who is a miracle. Yes she is now my "new" daughter and yes I grieve the "old" one at times when I feel weak or look at old pictures, but we did it. She learned to eat, walk, talk, everything again. Don't ever give up on yourself or your child. We were turned away from conventional therapy so we did our own with ballet, pilates, guitar, art, voice and theater. She has now auditioned and been accepted into an arts school for drama and voice. She is a miracle and keeps working to get better and find ways to over come her weaknesses. School can be a challenge but again fight for your childs rights in school and get them the help they need. Love to all of you who have suffered a TBI or family who have stood by your child or family.
Thank you for sharing your story. My daughter is a survivor of a TBI in 2007. She is what doctors descibe as persistent vegetative state, but I have all the faith that my daughter is still " in there" somewhere and that one day I will hear that sweet voice call me mom once again.
My little brother suffered a TBI just weeks after turning 18. The accident was 2 years ago. He has a similar story to other posted, over a month in a come, another month in ICU, then several months in rehab. Now two years later I have seen a total change in personality. He went from almost childlike and hilarious to violent and distributive. I will never give up on him. Reading these stories gives me hope for his future. HE is the sunshine in my life and I appreciate all of you sharing your stories. Through these difficult days I will continue to check back here for updates and encouragement. amerchant@knights.ucf.edu
HI It\'s been 10 years since my son\'s TBI. He developed psychosis and is paranoid and delusional. It is very difficult since other than the mental illness, he is totally recovered. Linda
I am sitting in a rehab watching my 17 year old daughter sleep. 2 weeks ago today, they did not think she would make it. She was the rear passenger in a MVA which resulted in a severe brain injury to several areas of the brain. I am definitiely grieving the loss of my lexie, but am thankful to have her here and will adapt to the new her. I miss hearing her sweet voice and that beautiful laugh that could light up a room.
Thank you for sharing this amazing story, Dixie. I\'m so anxious to hear how Paul is doing after 20 years. He sounds like quite a warrior. And, you and your husband are amazing people. Thanx for sharing. Dream! Hope! & Believe! - Mark Elswick
I am the grandmother of a TBI survivor for soon starting her 28 th year. She was 3 years old when she was in an auto accident. Now soon to be 31 years old she was one if not the first to survive a traumatic brain injury in the area. She is wheelchair bound ,nonverbal, totally dependent on others.A very happy person most of the time. well loved by family and any one who spends time with her even for short periods of time.She comprehends everything she hears and sees. Responds with gestures and a very limited vocabulary. anyone who has not experienced an injury of this type truly does not understand what is entailed in caring for a TBI Patient. She is the joy of her family from the oldest member to the babies. Never give up there is always hope. Her Doctors had no idea what her outcome would be, I believe its way beyond their expectations. God can do things no one else can do. Nov.8,2011
Paul is a true hero in my eyes. His ability to overcome every obstacle is an absolute miracle. Your family's strength is astounding. I consider myself very lucky to know you, Paul, and the rest of the Coskie clan. ~SWL~
Well, this story and the people who are replying really make me fell good!! I had a TBI in August 2010 and was in a car accident. I was in a comma for 40 days and then went to TIRR rehab in Houston Texas for another month and a half and was released!!! Im one of the very lucky ones who went thru a traumatic event and have really done good!! Other than not working now. i am doing pretty good and so thankful that I didnt go thru that vegetative state. Although I do have memory problems, for almost a year Im way better than most people. This happening still makes me cry at times and I gotta learn to understand my life better. Just gotta understand that at least I did live thru it! If anyone wants to talk to me my email is melmel1972@hotmail.com. And I have a site you can visit that Im on too Melanie
Thank you for sharing your story. My son suffered a TBI on August 14, 2009 at the age of 17. He was a month and a day away from his 18th birthday. He was given less than 1% chance of survival, less than 5% that he would be little more than a "vegetable". He spent 17 days on a ventilator, and we were told not to expect him to be how he was prior to his accident; he was not going to be. After 17 nightmarish days, he was able to breath on his own, although he couldn't so much as swallow his own saliva. He slowly started his long road to recovery. He was transferred out of ICU one month after his TBI to the rehab unit at CHLA where he spent 5 weeks. There he had to re-learn how to walk, eat, speak, drink....He went from being super-polite and repetitive to vulgarities every second. After being discharged from CHLA he spent four long months at a brain injury rehab facility (CNS) where he had up to 7-8 hours of intense therapies. Seven months after his TBI he finally underwent a cranioplasty to replace his missing skull with a prosthetic (which we had to fight for because we were told it was a "cosmetic procedure"). Miraculously, my son graduated with his class (he finished his remaining high school credits on-line and with lots of help from his school), he works part-time and is a full-time student. He now gives speeches on the dangers of drugs and alcohol. He was a passenger in a carfull of teenagers that were all under the influence after attending a "rave". I'm thankful I still have my son, although he is definitely not the same as before. This experience changed him; he's a very mature 19 year old who is no longer the "popular" kid. We like that just fine. He's been able to share his experience with others his age and hopefully, he's managed to save a few lives.
Thank you for sharing your family's life. Our youngest son is also 10 years post TBI.
Thank you for your testimonial. It is so encouraging and bring tears to my eyes as I remember that last year on nov 2010 our 21 year old son suffered a hit and run accident, he was the pedestrian. Hours,days and weeks of constant agony,physical and mental tiredness to the extreme. But in the mist of all this God was watching and rewarding our faith. Yes, you are right, my son is different, he says " mom I feel like I just came out of your womb". Everything is new for him, our face complexions,birds, ceiling fan, light switch.Thank God for the support of the family which has been united more in love which has made us stronger. After five months of his accident one friend remains there ( I even gave him info about TBI to help my son better), in the mean time we are building a new world for him compossed of new friends, spiritual support thru church, showing him the world(people,places etc) and also enriching his new view towards life. Soon he will start outpatient therapy and will return home for good,he has not been home for five months and recently started coming on weekend passes.The stress level is a tiny bit lighter, but is going to be a very long journey, but God will carry us all the way.
I'm grateful for Paul's recovery and where he is today. This story gives me hope in that my very much loved boyfriend suffered a TBI on Feb. 22, 2010, and after being in a coma for 2 wks and 2 days was transferred to a rehab hospital where they keep saying he is progressing very slowly. He hasn't reached intense therapy level yet. Needs 24 hour care and not sure if he really knows who I am. I surf the internet for stories of hope and promise. Your story gave me some hope. Thank you.
Our daughter is a little over a year into TBI recovery - slow and painful. I try hard to see ten years down the road what she may be - certainly not the vibrant young woman (21) she was before March 18th, 2010. She is still on a feeding tube and trach and we fight insurance daily to get her treatment. Your story resonates with us. I'm glad to hear and see the progress your son has made - it renews my hope. God is good!
Your story is so fresh for me as a mother, yet I know I am so, so blessed. My son was injured 9 months ago and was considered 1 in 50,000 that would make a 98%+ recovery. As I read all of the comments and stories, you put into words what I feel. In 9 months we have progressed a million miles it seems. After learning to swallow, walk, and dress again we focused on the mental tasks at hand. Having a child who has suffered from TBI is huge, but it takes such a huge toll on the other children in the home as well. My son is doing great, but as the parent you see small things and know that they are struggling. You article is wonder and gives hope to people suffering as well. Any small sound that is associated with the night of the accident brings thoughts crashing back as if it were yesterday. If I can give people any advice it is to never cease in prayers because my son is living proof they will be answered. Never stop loving or searching for the answer no matter how large or small the problem. As small bumps in the road arise, I continue to be thankful for all that I have been blessed with and hope that all of you will continue to receive his healing blessings. Another person I met in the trauma unit during our stay always says 'love wins' and that statement is so true.
Reading your story brings back so many memories for me. My son was hit by a car when he was 4 and wasn\'t suppose to live and if he did he was to be a vegetable...Logan is now 11 years old and has been walking on his own for about 6 months. You know even though it\'s been almost 7 years since his accident you are right that it does change your entire life and people who don\'t live it have no idea. So many people say to me aww Logan is doing so good and yes he is and he is my miracle boy but life will never be the same and unless you live it you have no idea. Sometimes I feel so alone, I think because my family sees how far he has come that they forget that he will never be \"normal\". Like you I have 2 other children and all of my kids were young when Logan got hit although my case is a little different because my youngest daughter has severe autism. It\'s bad enough feeling torn apart from other kids while you spend countless days and hours at the hospital with 1 child but not being able to be home with a child with a disability made it even harder because she only responded to me and she had a really rough time. It makes me so happy to hear other peoples success stories. Mircles really do happen!
My son just turned 20 in January. He was riding in the back seat of a car that was hit by a large SUV in July last year. The rehab hospital sent him home in December because he hadn't even progressed enough for the intensive therapy there. He is still uncommunicative and still being tube fed. We have therapists coming to the house twice a week but I worry we are doing enough. He suffered with kidney stones and seizures all in the last 2 months. I know I need to mourn the loss of my intelligent, kind, energetic, and compassionate son that was but I'm still struggling with that on top of the exhaustion. Thanks for your blog because it really helps to know that there is a light at the end of the tunnel even if it won't be perfect.
Thank you for sharing your experience with TBI. I am new to this game as a participating recovering TBI victim, although as a former (an identification I recently forced myself to use) TBI provider identification of weakness is a bitter pill to swallow. Yet, being new I can strength from stories like yours as it shows evidence of hope and results in recovery. I am amazed in the human experience of overcoming the negative aspect that TBI presents and yet the acceptance of the potential for permanent disabling factors. I like your son it was told to my love ones that to expect me to have limited recovery, never to walk and to be wheel chaired bound remainder of my life. My injury occurred at age 58 now 2 yrs post and I am walking on my own power. Proving the medical providers wrong, being alive is a major miracle. But in my case I have experience a life time of events. The fact TBI is unique and different for each victim my purpose is yet to be defined. Most likely my age is a blessing and I hope that ten years from now the comment will be positive contribution and not one of resignation. I COMPLIMENT YOU, YOUR SON AND FAMILY FOR PROVIDING HIM THAT POSITIVE ENCOURAGEMENT. Especially with all the negative reactions, comments, obstacles and molds that others expect from TBI.
My son is 14 and 8 years ago he received a TBI. We fight everyday for his education and well-being. We move often, so friends are the biggest problem. And of the few he does meet, they realize quickly that he is not a normal teenager. They soon back off. We are trying, and will continue to try, everything and anything that might help him. Thank you!
Thank you for this wonderful article! It is the first time I have ever felt that someone had walked a mile in my shoes. Dixie, how you explained everything, is exactly how I have been feeling, but never have put into words...and the last part about the ambulances made me cry as I do that as well. I can't thank you enough!
Thank you so much for sharing your story. I suffer from a TBI as well and have had many changes in my life. My husband has left me and my oldest daughter as well. I still, thank God, have my other daughter and my son with me. They continually give me the strength to go on and continue to see the good things that have come with such a tramatic injury. Thank you again for writing your story. It was truly understood.
Thank you for your story. What an inspiration for many suffering with TBI.. My son, at age 19, suffered a traumatic brain injury and we were afraid he would not make it through. Miraculously, he was out of the ICU in 3 weeks and in rehab for one week. We got him home and he was back to normal in less than 6 months, you never would have known. We were the lucky ones. And then the unthinkable happened, 16 months after the first accident he was in a fatal motorcycle accident. What I wouldn't do to have my son back, even if it meant he had TBI. Just cherish the time with your kids because you never know when it can be taken away. kyle's mom
Thank you so much for this article. My son, Michael, suffered a TBI at 4 years old. He is now 8 (almost 9) and as we come closer to the 5 Year Anniversary, I can't help but try and imagine what his future holds. Your story gives people like me so much hope. Right now it's all a dream that Michael will walk independently, and go to college. Your son is a wonderful and true inspiration to us ALL.
Dixie-your story is such an inspiration to so many others. Glad to hear of Paul's milestones. Thank you for sharing. Karen Green
Thanks so much for writing this, Dixie. We\'re now one week into Year Three with Michael. His cognitive/memory issues continue to be his largest hurdle, but we\'re quickly learning all about the off-balance walking as he opts to put his walker aside in more settings. You, Paul and your family are a great inspiration to all!
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Thank you for telling your story, it seems that every feeling and emotion that you have had I have also gone through. My son is 24yr old and its going on 3 years this June that he had an accident while putting the clip back in his gun. He had a misfire and a bullet whent into the motor skills section of his brain. He had a 10% chance to live and he beat those odds. We are very lucky for have him with us today. I still to this day am having a hard time getting him into a rehab so that he can relearn his motor skills. He had no ins. at the time of his accident, so he was put on Medicaid, which in Alabama only give 14 days of in-patient services. He just got Medicare and now they say he does not qualify for Rehab Hospitals because of the lenght of time since his accident. He needs to go in a long term rehab facility and they do not expect Medicare. Sometimes its like butting your head against a brick wall. So when you stated that you wanted to bury your head under a pillow and big blanket, I know exactly what you mean. But of coarse I continue to search for a place that he can get some intensive rehab, and hope and pray that I can find somewhere. He goes to an out patient rehab, but he needs to be in-patient to get the therapy he needs. He only has movement in his right hand and arm, so he has to have help with all of his daily needs. I will not give up on him and will not send him to live in a nursing home. I will continue to search, hope, and pray daily that I find him help. So you can see that I understand A Mother's Story Continues.
May 16th, 2012 10:48pm