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.


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 (68)

Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

Hello everyone my 8 year old step-daughter was hit by car this Monday, the doctors say she has severe brain injuries, i can’t describe the feelings of hopelessness and uselessness that i feel, i wish i can take her place.

Hi everyone I’m a mother of 5 boys 1 girl on oct 13 2017my second oldest son at age 21 was in a car accident he was thrown from his vehicle due to no seat belt he was pronounced dead at the scene they revived him he was then sent to the hospital worst day of my life got a call from his best friend my heart just dropped couldn’t even see him as he had cops surrounding his room after a week of causing scenes and demanding I finally got the Sargent to release the visit charges omg I seen my son and he was on a ventilator in a coma and I hated this nurse he kept telling me he was very sick he wasn’t gonna make it he is suffering to pull the plug we talked to the dr and he stated tht he damaged his brain stem tht he was gonna be in a vegetative state for the rest of his life my son was in a coma for a few months he had a ventilator in him and was showing no progress they then sent him to a rehab facility after a month still in coma he one day woke up didn’t talk didn’t move after a few weeks they worked on his breathing to removed the trachea he did awesome after a few months he was then started on therapy and they placed a feeding tube months went by he progressed to an extent tht the rehab couldn’t help him no more he still didn’t walk talk nothing so he was then released to me and his step dad we got him in home therapy ot and pt therapy I was starting to think my son was Nvr gonna get out of bed and I prayed and prayed started to feed him purée food and had his feeding tube removed as he was always pulling it he was not all there talking all muffled limited movement after a yr he is now able to feed himself ,change,use his commode,shower with assistance to walk he has shown progress but his cognitivity and speech is still off he gets aggressive some days don’t sleep some days laughs alone I just pray he will be some wat the way he was before it’s been 3 yrs And he has not shown any vegetative symptoms God is good I just keep praying every day for him to be like befor even tho he shows me he rather be dead Stay strong everyone God is good keep the faith

I am a TBI survivor, 20 years ago. I was in a coma for 2 months and woke up paralyzed on my right hand-side. Long story short I have recovered well and very grateful.

My life has changed considerably and I have learned one should roll with the punches.

I live in Somerset West and am keen to pay my good fortunes forward. If you know of any hero can give to current sufferers or their families please be in contact.

Thank you kindly in anticipation
Ulrich Kotzenberg

Thank you for sharing your story! My neice was in an auto accident last year. She is in her early twenties. She is communicating more and becoming more aware. She still has a feeding tube and is fighting hard to regain her muscle strength and control. This is one of the worst things that can happen to a person and their families. I try my best to support my sister and her husband as well as their children even though they are grown. I have so much hope for her and all of you to move on with peace and to find life after these horrific events. God Bless all of you.

9 years of living with a TBI anoxic brain injury.. I had an amniotic embolism auguy31 of 2010.. I’m grateful for my strong family but cannot stay in a relationship with a man . I get upset too easy and It’s like my care senseless just flip off like a Switch and it’s terrible. I’m best left alone with my family and friends ..my brain still has pressure and I’m thankful God has kept me around to help others in their walk with faith . That is two separate subjects but I live day by day just .. here :) God bless all of you who are going through this alone and struggling to find true hope in the personally experienced trauma.. you are very strong .

Hello dear, our prayers are with you. i just wanted to know how did u get TBI and I have heard that, people with TBI usually gets seizures, is it so?

My 29 y/o step son sustained a TBI in 9/2018 (motor cycle accident.) We have a couple major challenges. 1) The accident left him permanently blind along with the congnitive deficits of the TBI. AND we cannot seem to find help for him in both areas. There are tons of resources for the blind, tons for the brain injured, but for the blind AND brain injured? Not so much and I am constantly looking for help. 2) my husband and I were married about a year before his accident, and he and his 2 kids (who he shares custody with) live with us. This has not been easy on our marriange. I am so thankful that he is alive, can now talk, dress and feed, bathe himself. I am equally thankful that he does not remember the days when I had to do that for him. I am also thankful for this post and to read from others experiences. Thank you all.

My son was running PT in the service & his heart stopped & he had an anoxic brain injury. He is now in a semi-conscious state. They are trying to wake him up. He did a couple weeks ago but they thought he was having a seizure & put him "under" again. He since has had a hard time waking up again. I think sometimes putting someone in a drug induced coma can be worse than seeing if they can make it through the ordeal. Now it is uncertain if he ever will restore consciousness or recover. Although I am praying for it. He has a small window of recovery. This has been devastating to our family. We love him so much!

My son was assaulted and left for dead the man that did this to him is still out on bail it will be a year on March 24th. He had 3 heart attacks several seizures and was without oxygen for 20 minutes he had his own business HVAC he made very good money, but on the day he was attacked everything was gone. He, too, was in a coma. I was told he would never move wake up or recognize me he has done all the above, but the hospital so bad they're not giving him the physical therapy he needs so he lays in bed. I do the best I can and his long-term memory is coming back. His short term memory is not that great. I want to bring him home and I want to find out how I can care for him , I am 65 and I've had five back surgeries that one of the employees from the hospital shared what really happens and my son is being neglected when I'm not there being left lying in his poop not cleaned up for hours. I just wanna know how to bring them home and take care of them if anybody has any suggestions, please help me. I was able to get him on Medi-Cal and I just receive disability for him. I need help to find out how I can bring him home and give him the care he needs.

hi my son too has same brain injury hospital are hardly any help and we moved my son to nursing home less then 2 weeks bad shape neglected him so back at hospital i am talking to lady in hospice every one thinks this is just for short term until they pass but no this is so they can help take care of my son i do alot too but we know our son will out live hospice its just better then nursing home and also this lady said look in to brain injury hospitals so they can help your son they have so many i was unWARE OF NOW IM CALLING AROUND TRYING TO FIND SOME HELP TOO I TOO AM NOT LETING MY SON GO.

My husband is 43 and his heart stop on him 6/26/2020
And stuffed global anoxic brain injury
And he's in a coma.
I'm loss not sure what way to go please help us

April how is your husband now my partner suffered anoxic brain injury on 13july 2020 it’s so hard his still classes as vegetative state I got 2 small babies and we on our own no support it’s hard

My 52 year old brother has been diagnosed with an anoxic brain injury - here looking to hear any info you might share - good or bad- the doctors keep shoving palative care but we just don’t want to make that decision after 4 weeks. All the research we have done on our own says it takes months to show signs of recovery

My son Sincere, suffered an Anoxic Brain Injury On August 11,2019! He was with his aunt and his cousin for a 1 night stay, hours before I was going to pick him up I got a call from his aunt screaming saying that he had choked and that he was on his way to the Hospital via Ambulance, he suffered an Anoxic Brain Injury at the age of 4 Years old. My heart hurts everyday, it has been 5 months, he has a Trach and G Tube, he is on the ventilator at night! The Dr Said that he will remain in a vegetative state. The Dr also wanted me to let him pass away, but I couldn’t stomach not being able to see him anymore! It is so hard. I am 23 years old, and I really hate that anyone has to go through Something like this.

Look into hyperbaric chamber

Please don’t use this I’d your son, Sincere has a acquired severe diffuse, axonal traumatic brain injury. His brain is still growing and could injure his brain more than it has been injured. I’m still confused how he acquired a DAI TBI by choking. Are you aware how that happens? Your brain must shift in your skull horizontally or vertically. Please get second opinion on type of TBI. You don’t is very young and children are resilient and can heal better than adults who acquire a severe diffuse, axonal (DAI), TBI (traumatic brain injury), as it’s the worst possible brain injury you can acquire.

Anoxic brain injury is when someone goes without oxygen so long that parts of the brain start to die. It doesn’t have to a hard jolt. Once that tissue is deadened it doesn’t come back, however there is such a thing a neuroplasticity, where the brain can form new pathways. Anoxic brain injury isn’t always death. Sometimes there is hope. God bless.

My 27-year-old son was in a motorcycle wreck back in June that left himWith a Trumatic brain injury. He was in a coma for 28 days they went in and removed part of his skull to relieve the pressure on his brain after eight days. Since then he has been sent to an L tack back to the hospital to have his bone flap or police and from there to a skilled nursing facility supposedly to get him off the ventilator when I let him get a Pneumonia and almost killed him. He is now back in the hospital being treated for that. I am so lost and confused and scared no one is helping me I have no clue how to help my son Virginia has no places to send him I just need some help. My son is slowly slipping away for me his responses are decreasing and I need some help is there anyone out there who could point me in the right direction please

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.

Hi how is your son now. My husband is in a coma now after a car accident

Hi I’m going through the same thing now with my partner we got 2 kids too how is your partner now it’s really hard I feel so lost

My husband is in the same position. I wanted to search and get what is going on and find ways to help him. He is on ventilator and they think he needs it for sure, but can't be positive. He had asthma attacks, to cardiac arrest, to brain hypoxia. But it's his whole brain is damage. But they not certain he will be impaired, or needs ventilator forever, or bed ridden. So they will be putting a endotracheal tube. In a couple days. Find a longterm treatment center.

So this what I'm going through.

I am currently in a similar situation with my wife. We have 2 kids together and have been married for 12 years. She suffered a severe traumatic brain injury and also oxygen deprivation. If you don’t mind me asking, how has the recovery been for your spouse?

Omg! I would love to hear more of what did happen an like everything you have said is the situation I am going through now which oh my .. Its my brother 24 years old he had his wreck on Jan 15 2020 here it is March & I can name just about most of what all is an has happened these two months! & on going! Well he had 4 brain surgeries he opened his eyes short period an at 1st was cracked a inch wide but u could see him following dr said was a normal reaction.. well he started taking commands like wiggle toes.. he did.. then wiggle toes he did again. He gave thumbs up when asked he squeezed hand he started improving well to the family compared to the outcome to dr was putting out there... well he was put n nursing home for recovery an two days later his oxygen level dropped and they sent him back to the hospital where as I speak am laying n waiting room, well they went 5o put tube n an his heart stopped well they brought him back. Well vent was doing little breathing so today they was gonna try winging him back off which is now breathing 100% for him! I'm interested in this story.. I need guidance an some help building some faith. Its killing me!!!

First and foremost never give up hope and faith. Rely on God and ask for ongoing prayers to fight the battle. My son to was in auto accident with TBI and skull was removed. They sent him out of iCU way to soon to LTECH and he acquired hypetension bleed that caused a stroke. Big set back two months . no movement after stroke huge relapse from initial car accident. He went back to acute hospital for month then to inpatient rehabilitation center. He came home after 4 months in hopsital and started outpatient therapy. He is making slow progress and not able to walk independantly yet and struggles with right side movement. Have to give praise and thanks for any improvement not matter how slow. Remember all in Gods time not ours and everything is life is happening for a reason we have to accept and continue to rely on God. Praying for a miracle still for my son and for all of your loved ones.

My partner had a hypoxic brain (40 mins no oxygen) injury and I’m pleased to say after 5 months he woke up from coma . And went through the various stages of no reaction Glasgow scale 2 to 99.9% full cognitive abilities! He is as he was before . So it took 1.5 years but it was worth the wait and I’m so glad I fought for his life when drs just wanted me to switch his life support off! Please don’t they always give you the worst scenario and with bedside therapy ( audio, touch, smell, taste ) daily you WILL make a difference to the brain re routing and healing. It takes ages but pls be patient and never give up prayer. The first few months of seeing no response is hard but you just have to wait till brain is ready to surface . Seizures although frightening are a sign of brain connection and healing. We had 10 seizures an hour at times ! Extreme Bp fluctuations and horrendous scary episodes of kidney problems and heart problems too.
I hope who ever is reading this takes my experience as hope . Your loved one will come back . They are just healing damage and need to shut down for a few weeks months.


Your message does give hope .. my brother diagnosed with anoxic brain injury and they are trying to tell us no hope. How can they determine that such short time.

Can you tell me what the MRI and EEG were showing for your partner after his injury? My husband suffered a cardiac arrest in January and had 22 mins no oxygen . He has sort of woken up but remains in a minimally conscious state. (sleep/wake cycles) . He seems to hear us. But we are not allowed to see him due to covid. The Neurologists say his brain is severely impaired and they do not think he will make a good recovery. It is heartbreaking. We have hope but the doctors obliterate it with their prognosis.

Sounds exactly like what we’re dealing with - without oxygen for 8 mins from cardiac arrest - doctors giving no hope

Reading your story sounds just like what I'm dealing with almost to the T. Only 1 month in still in the hospital would like to ask you some questions.

Thank you for sharing this story... my dad is currently in ICU after suffering a cardiac arrest while on his way to work. The doctors tell us it’s anoxic brain injury while his brain stem cells are still functioning. His kidneys, heart, lungs and vitals are undamaged... after 3 weeks, they told us there was nothing else they could do for him as he was suffering Myoclonic seizures and told us the seizures were a result of the severe damage done... your story has given me some light and am grateful. I pray so very hard everyday despite what the doctors are telling us.

Thank you Annie for sharing your story. Our 45 year old daughter suffered widespread brain damage due to sepsis and swelling in her brain. It's been 5 months and the hospital released her this week into a nursing home with therapists and doctor on call. Her husband has reduced his working hours to take care of their 2 young children. Everything seems so overwhelming. Sometimes she seems like she's doing better and then for weeks will not react to much. She is being fed through a tube and not able to eat by mouth. She uses a few words from time to time and occasionally will try to stand up with minimal assistance. She loves music, is a singer-songwriter pianist. Recently she began to sing along with one of the songs she wrote years ago, she knew all the words. But the Dr. said that there is no evidence that she will improve more than she has and recent MRI was devastating. Parts of her brain have atrophied and others responsible for memory, learning, emotion and speech have been destroyed. I take great encouragement in your story, and pray we will see further progress for our daughter. We have people praying all over the globe and so many are convinced that God will bring her back to us. That we pray for. Bless you and your partner.

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.

Please keep Faith with God he will prevail for you can manifest healing and reverse what is seen with the visible eye youand your family are in my prayers.

Our daughter 90 days ago went into er due to high heart rate, Cardiac arrest and had no heart beat for some 20 minutes. She was revived with anoxic TBI. She is awake, cannot speak, or voluntarily control her body and functions. She is in rehab and there are times we think she is aware the others not. She is 30 years old, has spastic contractions, she has to be lifted from bed to a wheelchair, have her diapers changed by strangers, and is fed by a tube. Agree with the writer that we have lost our child. I also believe that the girl that loved the wind in her face and always on the go would want to live this way. There is no quality of life and doesnt appear to be any. Eventually we will either warehouse her at home or in a nursing home. God Bless!

Never give up. God bless your family.

Hi so sorry to hear about your daughter. I know all so well how this situation feels. My son 4yrs ago had a heart attack playing basketball and he loss 20mins of oxygen to his brain and now suffers from Anoxic Brain Injury. These last 4yrs have been a living hell but as his mom I never gave up. My son was in a coma for month and he is partially blind, have no memory of his life, loss all mobility. But through it all He ia still here. You can’t let fear of your daughter situation get the best if you. But a positive mind and outlook does make a difference. Yes you will lose friends and sone family support but keep pushing. Im my son’s primary caregiver with no help but he is home with me and were doing our best to live our best life. I surround my son with all the things he loved and His face lights up. We get out and enjoy life like going to movies, dinner. It took time for us to get there but I was determined but he is doing things they said he would never do. I say to you stay positive and strong and things will get better the doctors don’t always have the answers but a parents love for there child is the best medicine to make miracles happen just trust the process.

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!

Please don’t despair
My partner was predicted worse situation and is cognitive 99.9% back as himself. Just keep praying and don’t give up. The brain will shut down and take its time to heal. It took 1.5 years for my husband to be ‘ normal ‘ he went through all the stages of
No response, veg state ( months ) to semi-conscious, ( child-like response) to teenage brain etc and every 4 weeks we noticed a new change to brain as it healed. It seems take forever and it’s like watching grass grow. The not knowing is the worst.
But pls don’t give up. Your loved one is healing and will come back when she’s healed.
Seizures, etc are normal and part of brain reconnecting. Just wished someone told me that as I was terrified for months seeing him like a lost ghost and then worried sick as he spoke like a child. He’s back as normal now with his personality and jokes and sarcasm.

Wow Annie, Your story gives me so much hope You are a light! I have one question tho'... my son is a month in after cardiac arrest and an induced coma then a removal of the sedatives over a period of about 2 weeks. They are giving him Kepra to prevent seizures and I'm wondering... should they take him off of that? Allow the seizures? I couldn't help wondering that as I read your amazing story. If you get this message and have any idea I would love to hear your thoughts on that. And again... you're a light! Thank you to the moon!

Cardiac arrest is different from TBI, she did not say which one her partner had. In TBI the brain can sometimes rewire connects around the damaged parts of the brain. Cardiac arrest typically causes wide spread damage to the brain, there is nothing to work around.

My partner has suffered a hypoxia brain injury 16 minutes 3 weeks ago and the hospital want to remove his feeding tube I’m so lost your post gave me hope thank you

My hubby went into a cardiac arrest 5 weeks ago.. suffered 45mins from oxygen deprivation and has hypoxia as well.

I hope your daughter has begun a journey of recovery.
My son is 13 days in induced coma, after a car crash
I am full of fear
My heart aches
I try to stay positive
I tell the doctors he will amaze you
he has too

I love your message. Thank you.