The reality of nightmares.

I woke up to Jared starring blankly at the ceiling. The look on his face seemed to say "How long before this woman wakes up and gets me out of bed?". On the average day I have to drag Jared out of the bed and force him into life, not today.

When I approached Jared's side of the bed I saw a man I used to know. He was bight eyed and fully awake, ready to jump into life. Jared doesn't usually talk in the mornings and especially not laying down, this morning he was rather chatty.

I dressed him, helped him out of bed, and asked him what he wanted for breakfast. He gave me the usual shoulder shrug and mumbled "ice cream". I smiled at his response as I rolled him down the hall to start breakfast.

Tyson woke up as we passed the door to his room and we all went to the kitchen to make something to eat. Catlin had slept over at my parent's house the night before so it was just the three of us.

Tyson being his usual self was desperately trying to get the eggs off the counter, casually I told him I was going to make him eggs and to sit at the table. Jared chimed in and said he wanted eggs too.

For a while things continued to be eerily "normal".

Tyson cried when I took a roll of wrapping paper from him that had been left on the counter. Jared started so sweetly call Tyson's name like he wanted to comfort him. Jared said "Tyson...come over here boy..." so I picked Tyson up, still crying and sat him in front of Jared on the table.

It always hurts me to see Jared's efforts go unnoticed. I guess because he doesn't usually talk Tyson is oblivious to it when he does.

As I stepped away from the table Tyson cried a little louder and Jared snapped.

Jared started screaming for Tyson to shut up and then grabbed is face and pushed him over backwards. A cup of water flew off the table, spilling everywhere as I tried to wrestle my son away from my husband. I finally pulled his hand off of Tyson's face only to have him snatch up Tyson's arm, screaming "Shut up" and "Quit crying!" the entire time.

I was in tears holding Tyson when I started in on Jared. I spent a few minutes trying not to scream at him as I explained that it was not okay to treat other people that way. I told him that he couldn't do these things to the children or he would have to leave and live in a nursing home.

I read somewhere that people with brain injuries don't have emotional responses like they should. The article said that we (caretakers) should model appropriate responses at the correct times to help the brain injured person "remember" which ones to have when.

My correct emotional response was apparently hysterical terror.

I thought a lot about how I should deal with Jared's violent outburst these last few weeks. Knowing Jared can make new memories if the memory is significant I decided to allow my raw emotion show. I thought maybe if he saw how upset I became he would remember.

I don't know what else to do.

Jared stared at me with a confused look as I had my break down. When I realized he had no idea what was going on and that he didn't remember what he had done just moments before I gave it up and finished cooking breakfast.

When Tyson finished eating I took him outside to play for a few minutes so I could call Jared's mom and tell her what had happened. I left Jared sitting at the table to finish eating.I didn't expect his mother to help me in anyway, I just needed someone to know what was going on.

After the call I went inside only to find that the dog had snuck onto the table and licked Jared's plate clean. If anyone deserved an outburst it was the dog. Jared apparently sat there and watched her eat it.

I've been trying to figure out what Jared's triggers are. I know that pain is the biggest trigger for his violent episodes. I think he may also be sensitive to noise. He has been upset with me several times for talking to loud to close to his ear. Today I asked him if loud noises hurt his ears and he said "yes". Trough a series of questions I found out that loud noise only hurts his left hear. Maybe Tyson crying on the other side of the room didn't hurt his ear? Maybe when Ty got closer and the crying was louder it started to hurt?

I'm clueless. I plan to call the doctor tomorrow.

I've had nightmares about days like today. I know that I can't keep Jared here if he hurts the kids. This is the only thing I can't fix, control, or adapt to. The risk is too high.

I never let myself believe he could hurt a child. I thought children would be different knowing how much he loved them, he always has. I wanted to believe Jared would only lash out at me because I'm the one that made him do all the things he didn't want to, I guess I was wrong.

What now?

Hope is dwindling and frustration levels are at an all time high. Curiously this has nothing to do with Jared himself.

A few days ago I was sitting in the neurology pain clinic waiting to have Jared's Baclofen pump refilled when I picked up "Neurology Now" magazine. I began to read an article, "Walk This Way" by Amy Paturel, M.S., M.P.H., the article was focused on gait disturbances after stroke. Jared relates to stroke victims very well considering he suffers from paralysis on the left side of his body.

I read about Dr. Richard Macko's exercise training study at the Maryland Exercise and Robotics Center of Excellence in the Baltimore VA Medical Center. According to the article, and the study, consistent repetitive motion of walking on a treadmill can help the brain "rewire" itself and develop new connections to compensate for the damaged ones.

Suddenly I became excited. I knew that doing the motions could potentially help Jared relearn how to use his body again, I had never seen a study with an actual program. I began to think about how to do this with Jared at home and started my research. Dr. Macko is a VA doctor so I looked up his email and wrote him explaining Jared's condition. The study he did wasn't for just stroke victims, it also included Parkinson's, incomplete spinal chord injury, and traumatic brain injury. I looked up the study he did and saw Jared met the criteria to participate in the study or program. When I wrote Dr. Macko I explained Jared's condition and asked him if he could help me get him into a similar program. I also asked if he couldn't then maybe he could send me some guidelines to do it myself.

I don't know if I will receive a response from Dr. Macko, I'm only hoping he believes in his work enough to help Jared. I hope that he jumps at the opportunity to have a Diffuse Axonal Injury case study subject.

I don't know if I have a right to demand Jared be placed in such a program. I need to call some people at the local VA and see what Jared's rights are for medical care. I want to call Dr. Mac from Richmond and ask him if he knows about the study and program, I'm pretty sure he may know of Dr. Macko.

Today horror struck again as I opened Jared's disability check. His benefits are being garnished for unpaid co payments at the VA. We struggled before, now I'm not sure if I have enough money to keep Jared here at home. I hope that I can get Jared into a inpatient rehabilitation program for a few months so I can work. I need to pay off the debts that are garnishing our checks so that we will have enough money to survive. If all efforts fail I may have to place Jared into a "Nursing home" so that I can work.

Again I have to choose.

I hate this. I am sick. Anxiety had gotten so bad for me just thinking about things like this send me into a hacking, dry heaving, puking, fit. I can't eat and I can't sleep. I can barely speak of things like this before bursting into tears.

I don't know what to do. I have a problem and it isn't Jared. The world around Jared is collapsing and I can't seem to hold it up.

I asked myself today if I was being selfish. Does it really matter if Jared is here living with me? It seems like I am the one who wants and needs him here. It's me that doesn't want to bear the guilt of letting him go some where else.

Is quantity better than quality? Would it be better if I relieved myself of these burdens and just enjoyed Jared on the weekend? I can't imagine I'm terribly enjoyable on a daily basis. I do get frustrated and snap at the kids, I don't spend as much one on one time with anyone because I'm stretched so thin trying to do everything on my own.

I have good intentions to help Jared recover. I set up his gym membership and we had good results when we were able to go and work out. The problem is that I don't have a baby sitter for my kids, I can't take them with me.

Is there a facility out there that can work with Jared more consistently than I can? Would it help him?

Today I sat and thought for a bit. Mentally I asked myself why I'm doing all of this? After much thought I decided it was because I missed Jared. As time passes and he recovers I get a little glimpse of the Jared he used to be. I loved that man so much. So many people lose loved ones, I know they think "If I could just see them one last time.", I keep wishing to see him one more time.

For the past few weeks Jared has become more aggressive and violent a times. He keeps having episodes and kicks, bites, punches, and swears at me. The angry episodes only last for seconds and sometimes a minute or two. Jared calms down as soon as I can get him to talk to me. He tells me what is wrong and then we talk it out. I'm trying to avoid the whole violence thing and just use words. He always agrees with me that hurting me is bad. He says he doesn't want to hurt me but when he gets angry all that goes out the window. Just moments after his last violent outburst he looked at me, and asked "What's wrong?". I was sitting on the bed crying after he punched me several times, he had no memory of the incident.

Aggressiveness and violent behavior are common after head injury. I've been told this a thousand times, no one told me what to do in the event that it does happen. The only solution anyone has offered me is medication. I won't allow it. Jared had a hard enough time staying awake as it is, I don't even want to know what those drugs will do to him.

After a bit of research on Dilantin (anticonvulsant medication) I found out that it can cause behavior changes. I'm hoping we can blame it all on the medication and take him off of it and solving all of our problems.

It might be a fat chance but I'll take it.

I don't believe Jared ever had a seizure condition and I think the medicine is making him more tired than he would be with out it. I've noticed Jared is more awake, aware, and better functioning in general before taking his dose of Dilantin. I want to see what he is like off of it completely. Hopefully the neurologist will agree with me on August 5th at his next appointment.

Just a few pictures.

Jared in therapy.
This woman changed his life forever, I will always have a place in my heart for her.
I miss her so much.
My first time seeing Jared walk.

Flying home from Richmond.
Finally sleeping in his own bed!
Memorial Day weekend at Crystal Springs.

Jared and Tyson hanging out.
Jared being a man.

Jared being a dad.


I know now that home isn't a place, it's a feeling. Home is the sigh of relief when you walk through the door. It's having your family with you and not worrying about where or how they are. Home is the ability to be lost in mindless tasks as you sift though all the thoughts in your head.


I wasn't truly home until Jared was here, for good. It feels wonderful. I no longer have second hand news from a tired nurse, I know exactly how Jared's day was. I know what and how much he ate and weather or not he liked it. I was there when he called for me and I'm there when he needs me. He was able to hear the children laughing and playing as he drifted into an afternoon nap.

Finally a chance to live OUR life TOGETHER.

Our live is a series of graceful falls. Nothing ever goes as planned but somehow everything falls into place as if it were meant to be.

I figured out I can't do it all. Everyday I'm forced to choose between Jared, our children, or cleaning the house.

I told Dr. Mac before we left that Jared's true recovery will happen at home. That statement held true, Jared has improved so much.

Jared talks to me everyday. He yells my name from across the house just to ask me what I'm doing. He says "Hey baby" when I walk through the door. He has an opinion on what he eats and drinks. He tells me when he feels bad or if he's hurting. Sometimes we talk for hours about what's going on in our lives. He can tell me almost anything.

Jared doesn't talk much to anyone else. I think the reason is because I know how to talk to him and he knows that I can understand him. He struggles with his speech. Most of the time he speaks in a soft voice and his words run together. He has a problem
describing things or thinking of the right words. With a lot of practice I've learned how to draw the words out of him.

Sometimes I feel like the crazy lady when I tell other people about the things he says. Our family and friends come by for visits. It's a bit
awkward for them to talk to Jared I guess.

Usually he
doesn't say or do much of anything when other people are around. They don't know him like I do and it hurts me so much. It hurts me when people talk or treat him differently then they would have before the accident. I guess that is part of it though.

In the last few weeks Jared has been aggressive at times. Usually something physical happens to provoke these episodes. Today when I got him out of bed (he wasn't ready to get up) he swore and punched me in the stomach. Later on at the pool I upset him when I grabbed his chin to hold his face out of the water and he tried to bite me. I couldn't let him go to get away from him so we struggled for a bit. When I asked him what was wrong he said "I want to bite you!". I tried to get him to tell me what was going on and all he could tell me was that he was mad. We sat for a while on the bench in the pool and talked until he calmed down.

So far the anger and aggression have been the hardest to deal with. It's like someone flips a switch and he goes nuts for a moment or two. It's hard to tell what is going to set him off because sometimes somethings are okay and other times they are not. I'm trying to be more careful and communicate with him more. Things go smoother when I tell him what to expect.

For the most part Jared is sweet and loving. I think the change in is temperament has something to do with the reality of his situation setting in. He's more self aware these days. I few days ago I broke his heart, and mine, when I told him the left side of his body was paralyzed. He has significant short term memory loss so I have to tell him what's wrong with him often. He's kind of like Drew Barrymore in "50 first dates".

The day before yesterday I was finally able to get Jared to walk for the first time since being home. He walked about 10 feet all together. His left knee isn't strong enough for him to stand on, it collapses every time he puts weight on it. I was able to get him to walk holding on to the rail on the deck and blocking his left knee with mine forcing it to stay straight. I've asked his PM&R doctor to order a
KAFO brace for him. That's a fight I have yet to win. The doctor flat out told me no. I've debated with her on the matter and she agreed to look in to it.

I've been waiting for over 2 months now for an answer.

I'm at a point that I feel like I'm rambling. I'll continue to write but I can't imagine it will be very exciting. From here I suppose I'll write about the daily aspects of our lives and my fight to recover Jared.

Thank you for reading our story, I hope to give it a happy ending.