2 Yr Update on Nicole-teen with traumatic brain injury was in coma.

To learn how Nicole has recovered, one must take the journey as to how she got to where she is today. ….Come on..don’t be afraid. Wait till you have some time to read it. It’s not contagious. All you have to do is read….all of us had to live it. All updates so far have been all about Nicole. This one is different. As her journey progressed it became also about the effects it had on her little brother, parents, relatives and all who love her:

I can’t believe I’m even here. Two years ago yesterday, a nurse looked at me and said “Why don’t you and your husband go home and get some rest, it’s 3:30.” I thought she was saying it was the middle of the night. She opened the curtain a bit. I saw out the window a bright white industrial type hospital roof that made my eye’s squint from the sun. I guessed then that she must have been telling me it was afternoon. We’d been up for 2 days stairing at our daughters 16 yr old lifeless body. Her face was dirty with dirt from the wreck. Her false eyelashes were in little clumps across her big beautiful eyelids. Her Cinderella yellow dyed hair was separated into sections, taped in different directions to make room for the hoses and monitor things that were attached all over her head and face. She had one eyelid that was purple like grape juice is, and the same size as a golf ball. It was kinda loud in there, a bunch of machine’s making all different kinds of noises. Psssst, beeeeep beeeeep beeeep, psht psht pussssshhht pusssssshhht, a little siren type noise. Then it would all repeat. There had been someone that came in and told us no one else would be allowed into her room. And please do not have any flowers or cards sent to the hospital, it was too unsafe for her. I was relieved to hear they were in charge and I couldn’t let anyone in our family see her. It was too bad to look at. Diagnosis: traumatic brain injury. I’d heard of that before. But it was never in my life though. I guess on the news or newspaper I heard it. I didn’t recall a movie about it or anything. This was no different than any other time I’d had a problem. I’d thought…”Ehhhh, ….I’ll take care of all this, and we’ll all be home in a few weeks and back to normal.” …..”Man, wait till I tell her all this that’s happened while she was in this coma!” “I have to make sure I finish watching American Idol so I can tell her what she missed before she watches the finallie.”

PSSSSSTTT..Ehhhh, ….. hey Bonnie…..YOU’RE STUPID!!!! That’s what I wish I wudda heard from an angel or a devil sitting on my shoulder. Yes, I sure wish I wudda heard that. Yeah, I do. Then I might have had more of an insight on what kind of a disaster had just taken place with my daughter. And her family.

About 2 months later, still in the very same room of that ICU, one of her eyelids flickered. You ever sat intensely, staring at something waiting for signs of any motion at all ….on edge all 24 hrs of the day and night for 2 months? Waiting for ANYTHING. ANYTHING to move. ANYTHING. Have ya? Was it your first born? It was mine.

5 months to the day, we drove her home from a serious and intense hospital stay that was 3 hrs away from our home. There was a smile as wide as our faces, that went from our chin to our nose! Mine, her daddy’s, and her little brothers….the entire 3 hr drive!. We were so happy, this ordeal was finally over! 8) Gosh, us hillbilly’s don’t dig the city. We’ve lived out of one room at the Ronald McDonald house for months. We put our boy’s elementary school just plain on hold…you ever heard of that? Just telling the school to wait? Someone doing that would’ve really been in some kind of major ordeal…that’s unheard of. It was a major ordeal. ……..More than we knew…..

It wasn’t quite 4 weeks I had her home when I started calling that hospital 3 hrs away, I knew she needed to go back, and I knew all of us, her caretakers weren’t going to last, it was already way to depleting. It was the first week of November. I remember on Christmas Eve, leaving a message on their voicemail…my words broke, I cried to them like a baby begging for help, knowing that they were all home with their families…enjoying the time. The lady I was calling had a baby, bout 9 months old. She’d bring her to work hanging in a sack on her front. She’d talk to me while kissing that baby. She didn’t even know she was doing it. The kissing. When I’d see her doing that, I knew how much she loved her first born, that beautiful baby girl. I knew that because that’s how I was with my daughter. When I was breaking down on her voicemail…I asked her to please call me after she returned from the holidays. That there was a day I carried my baby like she does, and kissed on her the same way. And I loved my daughter as much as she loves hers, …”Please help me.” I said. ….all broken up. “Please”. Click.

A word from the wise: DO NOT EVER….IN ANY CIRCUMSTANCE….FOR ANY REASON, EVER take a loved one out of the hospital going off of the original dates the insurance approved upon admition. Make the hospital discharge the patient on their own, in their own good time. If you take them out by your own choice, the insurance won’t let them go back in. DO NOT EVER let anyone you know do this. LOOPHOLE…DON’T DO IT.

On the 4th month after we brought her home, I started calling around to my county’s health departments, disabled programs, home assistance services. Anywhere I could think of for help. I’m not sure how much of the ugly details I can share of what had happened to my perfect family in our happy home. Ummm..let’s see. Uhh, here: I’ll just use word descriptions. Disturbing. scary. sorry. uncapable. unsafe. scared to sleep. misery. violence. Bad things out of thin air at all hours. blood. filth. Is this legal? guilt. Will we make it? My son is to affected. My husband is too unhappy.Our home is not good. I am too tired, unhappy, afraid of both my kids diving, drinking too much, needing more help than what’s available from my family, friends, neighbors, and strangers that are all too maxed out. I worked tirelessly. I mean there were days I hadn’t showered. Hours.. I spent 9 hrs a day on the phone with the state, county, medical field every business hour….following my daughter around so she’d stay safe while I begged with a phone in my ear. There was a year, year and a half window period for improvement for traumatic brain injury recovery. You have to get all you can in then, after that improvement slows way down or stops entirely. In a 9 month period, we took her to over 200 appointments. Therapy’s, massage, doctors, family therapists. Anyone who would see her. Any idea anyone had. Anything anyone read. Anywhere. Anything. Our motto: Leave no stone unturned. My husband and I left no stone unturned. Neither one of us knew if we were all going to survive. But we were stuck. The only thing we could do was persue. We were all heading for the other option; falling apart. Our family, marriage, kids, relatives, friends ,business, money, in-laws, outlaws. It was all going down. It was a 24 hr crisis that wouldn’t end. The days were bad. The nights were worse. Once when the hospital told me they were taking her for a 3 day stay, I got a phone call from mental health about 30 minutes later saying that if I didn’t go back down there and pick her up, they would have me arrested for child abandonment. WHAT??? That’s the closest I’ve ever come to being arrested. When I got there, child protective services pulled me aside for my explanation. After I was finished, the guy said…and I quote “You two aren’t bad parents, sounds to me like you just need some help.” PS-my husband was home at the time with our son so we wouldn’t get arrested for leaving him home alone. The professionals heard us talk in a foreign language when we’d explain what happened and what we needed for our daughter. No one got it. No one understood. No one knew traumatic brain injury. Why don’t they know? Why don’t us, regular people know? Why doesn’t ANYONE KNOW? … There are so few that survive and end up this way. There are few places educated. That can help. That know. She isn’t in a bed in a coma. She can walk and talk, think that’s great? She has no safety filter (that’s what it’s called). All people have a safety filter. It’s the voice that tells us: it’s too hot, don’t walk there. Don’t get involved with that. Don’t do that to people. This type of brain injury also has no impulse control. Do before you think. Except there is never a “think” before during or after the incident. You know how you have to watch every move a 1 yr old baby makes? They don’t have mature safety filters or impulse control yet. There is no, or very little short term memory. Short term means now, a few minutes ago, a week ago, a month ago. I you ask her what she had for lunch she’ll say “I don’t know” or else TBI people are famous for fabricating, making up the answer to make the conversation flow along in a way most would be fooled. But the memory prior to the accident is very good. The best way I can describe it is like dementia. Then we went to the last update meeting, ….report said she’s diagnosed with….dementia. So a lot of people can relate to that. It’s the best way to understand how Nicole is today. The only difference I can see: Don’t be too sad about an older person that got to live the fullest life, fulfilling their goals, creating a family, making their dreams come true. My teen daughter got dementia before she ever got to do any of those things.

An option for help came. Group home. Nicole would live with a small group of special needs people. Have a schedule of fun and entertaining events by day, help with evening meals, games, and chores by night. That’s the option? Me and hubby Glenn wanted serious medical attention….for the RECOVERY. So she’d get better. YOU know….WE WANTED REHABILITATION DAMB IT…..WE WANT THEM TO WORK WITH NICOLE SO SHE’LL GET BETTER. THERE’S ONLY A COUPLE MONTHS LEFT!! HURRY. FIX HER!!! PLEASE!!!!. Take it or leave it. The special needs people were capable of following schedules, instructions, riding public transportation, and being happy while doing so. Nicole was like a fish out of water. Her disability wasn’t the same. It was too much for her, the special needs people, the staff at the homes, the everything. She was lost twice in town. Still don’t know exactly how each time it happened. By the grace of God both times because we live in a small town, people would recognize her, or her name when she’d tell them. They’d call a friend of a friend of a friend, and my call phone would ring. Both times I called the one’s in charge of her life and told them she was at so and so, with so and so who found her. If it would have been in a city she would have been dead. Once she had bruises, scratches, bumps all over her knees, hands and elbows. Trying to track down by investigation what happened..the info. was that she fell off the seat on a bus. I’d myself told all the bus drivers how much you had to watch and care for her, the stairs, etc. she wasn’t buckled in. I guess I was asking the bus driver too many questions about the details. I was trying to learn. To help for the future. He hung up on me. If he would’ve thought about it, he would’ve realized I wasn’t and couldn’t sue him…that’s what he was worried about. Don’t sweat it. My star witness is unable to remember what happens to her. She can’t tell you what happened to her 5 minutes ago. If I’m correct, I believe she went through 2 or 3 group homes, and at least 2 crisis homes. Those are emergency placement when no on else will have you. When it was so apparent that her safety was such a factor and her behavior was so socially unacceptable, like other brain injury people, a new option came. Put her in a brain injury rehabilitation center! Yea! She’d be with others very similar to her. The staff is educated on exactly the needs that she requires. It’s overseen by the best medical professionals in the traumatic brain injury field in the State. She’d be a day long drive away. We jumped on it.

It took my husband and I 4 months of recovery at home after we placed our daughter in a life long, live in rehabilitation program, It took us 4 months before we could take even 2 or 3 tasks in a day, make a plan, carry it out, and do those 2 or 3 tasks. After that, it took about 3 more months before we could produce a 4 to 6 hr productive day, which is still our max. today. It was then that I said to him “Hey I was talking to someone today and I was laughing and smiling, and I had fun for a couple minutes and forgot.” He told me he’d just done the same thing. It is super hard for us to schedule, produce, carry out, even meeting someone at a restaurant at a certain time is hard. It’s only the priorities that get taken care of. Even our friends and relatives get impatient with us at times, then they chill down, nothing we can do, were in crisis, we’re doing the best we can, and no…NO ONE is more sorry than us that this happened. NO ONE. Describing it isn’t easy. And people think it’s over. It’s like being on one of those flat excalator moving sidewalk things at those big airports and you’re being carried through a whole bunch of hustle and bustle and big groups of people and all kinds of activities and noise are going on around you and your just flowing through. You’re inside. They’re all outside. They don’t see you flowing through. A family therapist said that’s PTSD and overwhelm-ment. I looked it up, she’s right. Our son has developed OCD, also he controls what foods he eats. There is a half sunken aura about my family now. It a wonderful thing seeing an old friend of Nicole’s in town, working somewhere, telling me they’re moving away for college, progressing in their lives. I love hearing that from them…..uhhh… ..For a minute or two..then my heart sinks. Because I am reminded that she too, would be doing that now. If you are telling me or my husband about your child or grand-child, their award, good report card, how strong or smart they are.. after the 3rd sentence, you’ll loose me or Glenn, either one. We are very happy for what you say…until it reminds us of what we lost. And what our daughter lost. Our daughter graduated high school on her own free motivation at 16, with all A’s and B’s…..Look what happened to her. And no, I don’t think we’ll be heading to anyone’s wedding anytime soon.

To help with the soul of our daughter that we lost as a result of her accident, a certain chain of events happened after we brought her home, all within that same 1 year or so period of time:

One evening I was on the phone with my closest neighbor, Walt. He’s the one that travelled with 4 or so higher ups in his church to bless Nicole shortly after the accident. I never asked, they, all on their own, traveled on their own and did that. Really touched me and Glenn. After a little B.S….he asked me if I thought Nicole would want to start cleaning his house again, like she did before. For the first time, I was forced into explaining to someone that Nicole wasn’t, and probably never will get to that point. And just how much care she needs. And that we were in the process of looking for a facility to put her in. I didn’t want to tell anyone that, but I knew it was time. Walt cried. So did I. The next day Glenn and I drove by Walt’s house, saw the same church higher ups, and a sheriff car in his driveway, I knew instantly that Walt was dead. To this day, I feel that a broken heart had something to do with it.

The first time after the accident that I brought Nicole to Frank’s house, one of our best friends, he’d been sick for a while, I’ll never forget looking at him while Nicole was jabbering on and on to his family in the room. Frank was taking these huge, deep breaths. Like the kind you have to take when the doctor is using a stethoscope on your lungs. Frank’s big, tall, dark, Italian body wash shaking. I knew it wasn’t his sickness…I realized he was trying not to break down and cry while he watched the little girl he did cry over for so many months, talk and laugh. He made a big sign that said “Welcome Home Nicole..We Love Ya” he put it in our front yard while we were in route taking her home from the hospital that very happy day. The sign is still out front of our house. Frank died right after that. I think he took a part of Nicole’s soul when he got to heaven. To care for it. To nurture it. To love it.

Nicole had an uncle that was the world’s biggest drifter. He moved close to us just before her accident and tried so much to help with her after it, and for the first time in his life, Uncle Butch connected with his family. He especially connected with Nicole before her accident, she was a teen ager trying to clumsily find her way through, and trying to figure out just how to fit in.…just as he’d always done. He died suddenly couple months after we brought her home. I think he took a part of Nicole’s soul when he got to heaven. To care for it. To nurture it. To love it.

Our grandson died suddenly and unexpectedly of an unforeseen illness. He was the one that always used to play with Nicole when they were both little, he had the patents of Jobe with her and loved on her constantly. He’d play with her for hours entertaining her, he made her laugh and Nicole loved him. Later in his life he made some bad lifestyle choices and got into trouble. I would get mad and impatient with his ignorance. Nicole never would, she’d always correct me, and give him back the extra support, patience, and love that he always showed her. Always . I think he took a part of Nicole’s soul when he got to heaven. To care for it. To nurture it. To love it.

Our best friends had no kids, our kids were like theirs. When I brought Nicole over to their house after we brought her home, Larry literally slipped down over the couch while his voice trembled and he broke. He was the one who helped me during the day when everyone else was working, he’d take Nicole when it got to be too much for me to bring her out anymore. He’d string beaded bracelets with her, and listen to her ramble on and on about things he knew were fabrication. When I’d walk in to pick her up Larry’s light blue eye’s would be twinkling and a big smile would be parked across his face while he listened and listened, he was thrilled to take care of her. He died of a sudden illness. I think he took a part of Nicole’s soul when he got to heaven. To care for it. To nurture it. To love it.

One of the first people I talked with on the phone from the hospital when this all happened was a friend that happened to be in our office when I called there to check in just days after the accident. Roger was there asking about Nicole and they put me on the phone with him. Nicole and her daddy had just been by Roger’s house a few days before out on a pleasure ride in the 57 T-bird. Nicole always thought that her dad and his friends and their old classic car hot rods were pretty stupid. But that day, when they stopped in to say hi to Roger, Nicole was happy to be in the old bird….All the guys had just been staring at “her” when they’d cruised through the shopping center a few minutes earlier! When I said Roger’s name on the phone to him that day, he broke down and cried to me like a baby. Neither one of us could speak a word to each other for about 4 minutes as we cried to each other over the phone. A handful of months later I called Roger and he wanted to know all about what Nicole’s condition was and how we were doing all of the care and stuff like that. He took his time with me, he wanted to know, I didn’t want to tell him, but I did. Roger died that night from a short unexpected illness. I think he took a part of Nicole’s soul when he got to heaven. To care for it. To nurture it. To love it.

Nicole and her grandpa had a love-hate relationship, he’d challenge her constantly on what she was doing in her life and why she was doing it…. only to educate her. …Just when she’d get sooooooooo mad at him after she’d just finished hollaring out to him her chain of thought…he’d beam and jump up with pride…”Yes Nicole…..Yes !!!!! ……That IS the right decision for that situation!!!!!” Then she’d let her breath out and tell him….”Grandpa ….I already knew that, God!!!!!” He was heartbroken from that accident. He’d call me on my cell when he knew it would only be me….and through his drunken, messy voice……he’d say “Bonnie…..tell me about Nicole” and I would. Didn’t want to tell him, but I did. He died a couple of months ago. I think he took a part of Nicole’s soul when he got to heaven. To care for it. To nurture it. To love it.

A handful of big, strong, men. All needed to care for, nurture and love my baby’s lost soul. Can’t think of any other reason it all happened.

Yes. Nicole’s recovery will always continue. It’s best if she stays in a scheduled, repetitive environment. She stopped making real progress about a year after her accident. But continues. I am sure she’ll remain in the facility for life. She, like the rest are stuck in time where they were just prior to the accident. So she’ll continue to remain 16 yrs old. Stuck on exactly the issues she had at that time. She’ll always talk and go over her career choices with us, and what she’ll do in college, and which college she should go to, and what she’ll be as an adult. We’ll discuss this with her over and over as long as we live. Then she will discuss it with someone else.

Now you’ve taken the journey. Thank you for riding along. You’re attention, concern, love, and curiosity have been what has kept us going. I don’t like to say we move on. I like to say we move forward. You see now, I hope, why it’s turned into not only just about Nicole, it’s also about all of us that love her. The ripple effect of a tragedy. The life long ripples. Thank you for your part in our process. Thank you for the help. And prayers, please keep them coming. We need them badly. I’ve been deathly afraid to pray for a long time now. Someone said to me “Oh, you’re afraid, so that tells me you’re still a believer.” Hmmm…”Yeah, I guess so.” I said back. Later to myself I thought for a while, why was it I’m afraid to pray? I used to do it all the time…. Then I pinned it down ….. for so long all’s I prayed for was for my daughter to walk and talk again.

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