Walking in and out of a revolving door, written by: C.Dianne Lieber © 2007

Chapter 11.)

Walking in and out of a revolving door…

This whole story has been about a certain individual, however more so is the caregiver (me) that has gone every step of the way around and around in a revolving atmosphere while trying to help my son heal. My part to all of this was what I call the (caregiver), but really it’s just a Mother’s love for her first born son.

My role was to help and care for one of my wounded chicks. My little boy, who now was a grown young man, was hurting and needed my attention, just as he had his whole life. You never let go of the care and love you have for your child, no matter what age they become, no matter what they experience in life. For every stumble and fall they take along their life’s journey to include uncertain roads lying ahead, is for them to encounter. It’s a learning experience for them, not me. Well, finding one’s own path is a good thing to incorporate into any child’s mind while going up, but the fact was clear that it was me who was learning right alongside my son, throughout all the psycho drama, throughout the entire trauma, throughout all the sorrow.

Have you ever felt like there were parts of your life that were are like a revolving door? You go in and come out the same direction and get nowhere. This was my experience the whole time I was caring for my son on the 4^th floor area. I was experiencing going in and out of doctors, in and out of people’s opinions and in and out of recovery with Tye. Each rotation made for the next phase of what I was to be shown.

In the events lying ahead, I would be shown how money rules all. What it takes to make people hear you and why people do the things they do all over money. Money is paper currency, nothing more than a small flat piece of green paper rolled out in the thousands from a machine. Money, that’s all I was hearing from certain staff caseworkers this new week. Money to pay for an ambulance that I was already told was covered through the insurance. The billing department wanted money for the transfer of a patient to one hospital from another hospital. Money, money, money, was all that was being talked about and coming from everyone’s mouth, but mine. I had gone days without food, days without caring for my health or any personal needs, yet not once did I bring up the word (Money). I get the red light for my son to be transferred to the new hospital, but I have to find an ambulance all on my own that is willing to transfer this patient under a pending status with state Medicare funding or so I was told.

I’m going about my nursing (caregiving) role when I feel my son’s body and notice that he is burning up with a fever. He is hot to the touch, so I immediately call for the nurse to ask her why Tye is running a fever. I wanted to know just was how high the temperature was climbing. The staff inserted an ear thermometer n his ear, which read 103 degrees. No one could understand why he was is running such a high fever. The staff gave him a Tylenol suppository and we waited. I stood over my son all afternoon in worry. We wait and wait, until Mother can‘t take waiting any longer and I begin my Motherly instincts to give my boy an ice bath. I wanted that fever to drop; so in caring for my young children, I used to pull fevers down by sponge bathing my boys with cool towels.

It doesn’t take a rocket scientist to grasp the fact that you need to reduce the fever in an adult as fast as possible when it is this high. Children can run a good high fever, but in adults it is much more dangerous. I get the hospital washtub and walk down the hall to the ice machine. I completely fill the tub with ice and return to his room where I added about half of the tub with cold water. I took their white wash towels and I began to soak the towel in the bitter cold water, and then wring out the excess water. I gently place the towel over my son’s hot skin and begin my bathing of ice water bath to get the fever down. Each time I dipped the wash towel of chilly water, I softy spoke to my son and told him, “Mama will get this fever down, you just hang in there son.” The sitter in the room just looked on, but the nurse checked in and all she could say: “That’s great and we’ll see if the Tylenol helps too.” I repeated the cool bathing treatment until the water became warm and then I returned for more ice and cold water and started again.

In between the procedure of helping my son break his fever, I asked why is my son running this high fever, but there was is no reply from staff. By evening, when I had stood for 4 hours straight, bathing my son’s whole body, I looked at the next shift change nurse and I asked her to find me a doctor. I wanted a new doctor to figure out why Tye was running this high fever and to find out why it wasn’t breaking. They actually did what I asked this go around. The swinging revolving door was finally being put to good use.

The staff called in a bacterial specialist and I met another medical man. He was a very serious looking tall man. He talked to me and then disappeared. I waited and continued to use the ice bathing treatments. The fever would break and go to about 101 degrees and seemed to be leveling out for a few hours. I never left Tye’s room that night; I wanted to see if the fever would go to 99 degrees before I felt good about going back and getting any sleep for myself.

By the next day when the fever returned, it wasn’t the staff that became concerned, as they had no idea what to do, it was me again that raised my voice and said, “Get me that bacterial doctor back in here.” Another whole day and evening went by and I continued to bath my son in the ice water. I’d hold the cold wash towel up and wave it over his body in a fanning manner and Tye would softly say,’ “That feels good Mom.” I was so worried about him and I couldn’t figure out what was going on now in his body that made for a high fever. One thing was for certain, something wrong going on in his body. The fever was a warning sign of something not right. Did he have pneumonia again? One more long night of standing by his bedside repeating the ice bath procedure and wishing these people at this hospital would come in and tell me why the fever was happening.

Finally early the next morning, the bacterial doctor tells a nurse to give Tye three heavy antibiotics into the new lead line. I asked the doctor what was wrong now; he replied he thought it was one of three things. An infection from pulling out the lead line, an infection to his lungs or an infection from the secretion of the trach, or somewhere else that he just hadn’t pinpointed yet. He told me that the three different antibiotics were to take hold within 24 hours. When I asked, “What happens when they don’,” then this tall man looked right into my eyes and said, “Then I haven’t done my job and I need to figure out what else it could be.” He said, “You have a very sick boy here and this is very serious.” My heart sank again.

What more, I thought the day before, how much more? Just about the time my HOPE was holding, the revolving door hits me in the rear. It wasn’t even 24 hours until the fever broke and Tye was feeling a lot better. The bacterial doctor pops his head into the room for a check and I thank him for helping my son. I ask him again, “So what was it that caused the infection?” The doctor replies, “Pulling out the lead line.” What could I say? It was so clear to me two days ago that something was wrong, but I’m not the doctor. It was so clear that the day Tye was at his most angered period he pulled out the main line going into his arm and sure enough an infection set up. Was this Tye’s fault? No, once again in my mind I go back to the stupidity of an on-call doctor’s choice that resulted in more pain and struggles for Tye.

With this set back in health, Tye would not be able to be transported to the new hospital that week. Due to a fever and taking major antibiotics, the hospital would not transport him while he was so ill. We were to wait a few more days. No one ever thought that waiting more days meant more MONEY going out the door for me. No one ever considered the fact that the caregiver was exhausting her funds while staying in housing, buying food or any other things to stay the almost 40 days to care for her son. I was in hopes that my son would have been transferred to the new hospital a week earlier, which was closer to home.

Another day, another doctor, a new (gasterologist) doctor told me that Tye could have pureed foods, no water as he gets that in his IV, rather than putting a nose feed tube into his nose and feeding him that way. Tye agreed to the pureed food again with no liquids. I just get him back from the fever and then they tell me he still may need a tube going down him for the extra level of food intake. One doctor tells me he wants a stomach feed line put back in and one tells me he wants the nose feed line inserted, but what none of these doctors knew is that the new hospital wouldn’t take Tye with a stomach feed tube. So that stomach feed tube was surgically put in but that was not under the guidelines of rehabilitation. The nose feed tube they would accept. Tye didn’t pass the swallow test that weekend enough, so the nose feed tube was inserted. The encouraging story [I used to tell my son] for every line they pull out of you, it means you are that much better, was now flip flopping. Poor Tye, every area of his thin body was probed, pulled on and pricked all to keep going backwards with his recovery. I’d just hold my head up high and look right at my son and say to him, “Well we had just a tiny setback son, but we are on our way out of here you just wait and see.”

Where is home to the homeless? I would have to look into my heart once more and ask myself where in the world have I been, or have I been in a nightmare all this time? I’d have to hear the beat of my heart to know which road I was to take now. My inner pain was telling me the answers were there, I just had to look inside of me and know that my thundering rage would one day subside and my son would be taken care of once I ever got him home. Home, where was home to Tye, as he had no home. He had made his life a revolving door from one location to another for years. His personal things were scattered all over the place and he was lying flat on his back with a terrible looking contraption on his head. He was struggling to even have food stay into his body long enough to have a readout on a machine to have him pass a test, and all this before we were allowed to leave and go home.

I recall telling Tye about going to the next hospital just as soon as he was stronger. He had heard me say that before, but this time I told him that all the paper work was done, and that we were just waiting for a bed on the other end. A bed, well it sounded good at the time. What I didn’t know was that the holdup was that another on-call doctor wasn’t forthcoming with his medical notes to the new hospital’s doctor, in respect that the nose feed tube was temporary, not permanent. This led the new doctor on the other end wondering if the new patient was ready for rehab at the new hospital.

I had diligently filled out all the paper work for the transfer, the insurance and the disability for further recovery. I had crossed all the t’s, and dotted all the I’s as far as I knew. I even applied for the TBI Trust, fund in hope that my son could have some benefit through a scholarship that helps TBI patients.

The waiting period continued and I sat each day waiting, and my thoughts went to the new hospital. I chose the hospital with a great deal of assurance from researching all areas that it was going to be the better choice for my son’s recovery. The neurosurgeons would still be at his beck and call, there was a therapy specialist that could help Tye recover faster than all the other rehabilitation facilities I had checked into, both in and out of state. Tye had lived for three years in the area that the new hospital was located. His two other brothers were still living in that area. My parents had been to that hospital and most of all it was a charitable hospital. This hospital didn’t hesitate to accept my son with all his injuries on a pending status over state Medicare funding.

My revolving door gets stuck. Yes, with every rotation of a revolving door, there is bound to be mechanical problems at times. The ever evolving family flairups were increasing. What is it about distant onlookers that make them feel ‘they’ are in charge and want me to change everything to suit their beliefs? What makes people do and say things without even thinking how it is going to affect the whole system? Why would now become more like sticky gum to my foot and this was really getting to be very annoying.

In all this time, a Birthday came and went. It was my birthday, and I had turned the middle age mark. I turned 50 years old standing by the bedside of my son who was having a very difficult day. There were so many weekends that had passed while others were home watching a football game. I stood on my numb feet to just talk to my boy.

Storytelling Time. There were lots of afternoons, that I would sit down on the side of Tye’s hospital bed and tell him yet another story. I would try to think of funny things so that maybe I could see a crack of a smile develop to the side of his mouth, but that smile just never came. No laughs from my boy, no smiles upon his face, but he enjoyed my stories. There was a time when Tye went back in time himself, to a time that was nice for him. He thanked me for everything, even for covering up his feet with the blanket. He thanked me for staying while he fell asleep, even when he knew I was so tired and needed a few hours myself. He held on to my hand and we went down memory lane and created a mother-son bond even stronger than it ever was. There was a time in the past that Tye and I moved on and grew apart as any mother-son relationship should become.

Treasure Chest Gifts. Tye grew into a young man and I let him have his wings to fly. All mother’s know that feeling for the first time. The first day of kindergarten was hard, but when they leave home or get married, they leave again to fly on into their own unknown journey. For a few weeks, I had my long past-due memorable story telling time with my son as close as it used to be and I so cherished it. I felt loved and he depended on me for the first time since he was a little boy. It ended as briefly as it started, but in my mind everything was becoming a mystery to me and I was learning that the brain is fascinating to try and understand. I knew all too well that my son was just injured and when the time was right I would have to leave, to let him spread his wings again and fly. For this short period though, I held every word, every touch he gave me deep into my heart as a treasure. Tye and I were walking side by side learning about the gifts of life and what we are supposed to do with these gifts.

Hanging on to the treasure chest filled with gifts will continue in my next journal writings.

Things That Go On Under The Big Top, written by: C.Dianne Lieber © 2007

Chapter 12.)

Things That Go On Under The Big Top.

My colorful carousel of adventures was just beginning. Not realizing, I had been the center to the ringmasters whip. My story as a caregiver is flavored with a variety of circus acts. Each story has been so unique in its own right. I have to go back in the definition of the word caregiver for a moment as I know it: “A person who is responsible for attending to the needs of a child or dependent adult.” Every person I have talked to of being a personal caregiver, whether to a parent, my own mother, a spouse or foe, the stories are all the same. Sooner or later the role becomes a thankless, exhausting job and needs help from others. For those who do brave the unknown task it all ends the same. You as the caregiver get the shaft in the end. Each story that I have heard over the years has all been from very compassionate people, and they each had to give of themselves for another’s health or well being.

Tickets sold here. Admission to the show wasn’t going to be easy; there was the Hippa (Health Insurance Portability and Accountability Act) which only requires special seating for the select few allowed. A set of rules to be followed by doctors, staff and other health care providers to insure that all medical records, billing and patient accounts with regard to handling them with privacy. The Hippa rules are set up by the hospital to protect a patient’s privacy. My son had the Hippa set up the first day of admission. He was a patient suffering from serious injuries due to a serious motorcycle accident that included a death. No one from the general public would be allowed in my son’s room to take pictures, ask questions or interact in any way concerning the accident or his well being. There had already been the ‘advertisement’ of the event in all newspapers. The very first day I looked at my son in his fragile physical state, I knew the ‘Hippa rule’ was going to have to be upheld in order for my son’s privacy rights during his journey to recovery.

Act I – Ringside Show. There will be a ringside show from a talented young male Pit-bull to the all time favorite freak show. If I were to swing from the highest trapeze (which I have to tell you would be quite a feat, as I am very acrophobic), I would need to first find the nearest store that sold ballerina slippers, because my Dr.Scholl shoes were about worn out from walking on the concrete hospital floors. Years ago, I hung up my ballerina tu-tu and retired from any association of carnival behavior. Now the carnival ringmaster wanted his time in the spotlight with me. Oh the webs we weave, when we try to deceive others.

Act II – Bring In The Clowns.

If I were to pick a character in a circus that I like, it would be the clown. Clowns are put in a circus show to entertain the crowd. Little do most people know that clowns may have a happy pleasant face painted on the outside, but the clowns feelings inside may be sad. The tear so often shown dripping down the side of the white face paint is painted there for a reason. My tear was not painted for the world to see, but well hidden under a shattered mask of gloom, despair and agony, fathomed in deep dark depression and excessive misery.

I’ll never forget the phone call from my son’s ex-wife, (the Mother of his children) as she stated “The school counselor wants to have the children (ages 7 and 5) come to the hospital and visit their daddy, because it was time.” My son had just been put in the halo a few weeks earlier. He still was hunched over from the weight of the halo apparatus. His two small young children were to come see their daddy for the first time since the motorcycle accident because a School counselor said ‘it was time’. I’m a pretty reasonable person, but hearing this statement put me in pause. No amount of time on a clock could prepare my grandchildren psychologically in seeing their father lying in a hospital bed with a bruised and battered body that was being held together with barbaric iron straps on his head and plastic tubes running in and out of his body. I was scared for my grandchildren to see their father in his traumatic physical condition. The school counselor didn’t have any idea as to what condition the father was in physically much less mentally for making such a strong suggestion that could psychologically harm my grandchildren permanently.

I offered to send a picture on the cell phone to my son’s ex-wife so she could show (my grandchildren) how their daddy looked, in hopes that it would get them ready for the first visit. I was told no, it would be okay, because they both were pretty mature for their age. It wasn’t a peep show that I felt I was offering; it was to help ease my grandkids into seeing a very difficult situation. My grandchildren arrived at the hospital to have the main attraction, (their father), viewed. I was on-guard to the ‘stimuli’ factor that was drilled into my head everyday by hospital staff. Wondering, would Tye, seeing his children in his condition upset him so badly that he would regress?

My son had been so nervous all morning, he wanted me to shave his face, clean his hair and get the only clothing that he had ready for the arrival of his two children’s visit. I did as he asked and helped him get ready for the visit. We waited and waited for three people to arrive to his hospital room. My ex-daughter-in-law was late and my son’s anxiety levels had risen over her unpunctuality.

I, (the grandmother), stepped out into the hallway and saw my little grandkids get off the elevator and start running down the hallway when they saw me from a distance. After getting loving hugs and kisses from them, I knelt down to their level and began telling them “The halo is like someone wearing a cast on their arm after they break their arm, it will come off, but it it’s there to help heal the broken bone.” They seemed to understand. I said, “Just remember daddy isn’t going to have it on for very long”. They approached the entrance to their father’s hospital room, and as any young children would do, their little faces showed a look of shock. The 5 year old wouldn’t get close to his daddy and he began to cry. The 7 year old was distant, but tried to get near her daddy. The visit was very strained and emotional for twenty minutes. They left and my son collapsed with emotion.

Tye looked at me and said, “It’s too soon huh Mom?” I never uttered a word on the subject, I just asked the sitter to go get the nurse, as it was time for Tye’s medicine. Tye cried and walked the halls. He wanted to play cards, anything other than think about the emotional trauma of seeing his son so upset. It was hard to see my son with a tube going into his nose for food, a tube running up his arm for all his medications and the large halo on and not be taken back. I was used to it from a daily on-set of care, but for those two little souls, it was quite a show. After the visit, Tye was given more Ativan to calm him, more Coumadin for the blood clots and other drugs just to help him get through the day. He was only allowed ice chips for his liquids, as the feed tube was doing all the work, but Tye wasn’t moving his mouth eating and he noticed the difference.

The circus show continued from each and every member of his family overflowing to his friend’s behaviors. I often thought, if my son knew how all these people were acting around him, he’d be mad. I never let on how people acted at the hospital, never told of the freak production shows that played out. My role was to care for my son, not to upset him. If anything, just washing his arm to hard was enough to have Tye speak up and say “Don’t do that!” How would he have felt by knowing and seeing members of his family were making a spectacle out of themselves, at his expense?

Unexpected gifts for those in need of help. Some individuals are giving at a time of tragedy and loss. I would get a phone call that completely took me offguard regarding my son’s future living arrangement. My sister said she wanted to give her park model trailer to Tye as a home when he got out of the hospital and was able to live by himself. We all knew that my son would need continued long term therapy, but the home was there for when he recovered and for the comfort of knowing that he didn’t have to sleep at non-family homes anymore. This was to be a gift toward positive future goals and accomplishments of his healing and recovery. Tye could put the home any place of his choice and have a home that was all his. I was overwhelmed and I recall that evening as I sat on the bedside I began to tell my son of his gift. He looked surprised and said, “Why would Aunt Sue Ann do that for me?” For every gift offered to Tye, he always returned in a reply of why? Then within moments he would start to cry and say, that was nice and thank you. Tye would cry over the littlest of things, just having someone there in the room that he was closed into made him cry. It had been a full day, with several visitors and an overwhelming gift that was offered, so we walked the halls. Tye would put it as (walking it off) which meant that this was his way to unwind from the day.

Act IV – Lions, and Tigers, and Bears. Family wanted to see Tye when they wanted, not when it was right for the patient. 7:30 a.m. the next morning Tye called for me, as he had been up all night with bad dreams. All day he had ‘head pain’ and his left arm hurt intensely from the new line that the nurse had placed the day before. Once again, speech therapy had come in to assess Tye’s swallowing. It was amazing to me how the specialized doctor that ordered the nose feed tube said one thing and a young woman with the title of ‘speech therapist” had a whole different idea of what my son needed as far as the treatment for his food intake.

The circus carousel was revolving at a speed unknown to me. The staff was making decisions about my son’s future welfare, yet no one really was doing anything. Hours went by and I had to always ask ‘when’ are they going to insert the tube, or ‘who’ is going to do this procedure. No one ever said outright all the things the caregiver (mother) wanted to know right then and there. It was a guessing game, but it was a game I was getting so tired of, because it wasn’t a game. This was my son’s life they were experimenting on. He wasn’t a guinea pig and he wasn’t some lab mouse to pick and stick.

The antibacterial doctor stopped in again and said he was taking Tye off the three antibiotics, as he was doing so well. The wheelchair rides continued, as well as Tye was still using the walker to walk the halls each and every day. I noted in my journal notes that the blood that was all around in Tye’s left eye had finally disappeared.

For three days straight, Tye had the nurse call me at 7:00 a.m. to have me come over as he had just awakened and told of more bad dreams. He would tell me stories of the nurses taking advantage of him. There were stories, (dreams), of him being hurt by bad people and tales of dark memories in his thoughts. I never left his room for the three days of the bad dreams. I just curled up in the hard chair and waited. The sitters came and went as they knew that I wasn’t going to leave my son as long as he was going through all of this. The reassurance of having me just sit in the chair was enough to calm down my son’s emotions and have him sleep for a few hours. To open his eyes and see me resting in the chair made Tye feel safe, or so he told me every time.

The story hour continued, and I would have to go way back in time telling of memories that made Tye feel good. He didn’t want to talk about his kids, it made him feel badly and cry. He wasn’t going to talk about the accident, which made him stressed. When Tye did talk to me of about the accident, he only referred to the condition of the bike. He never went into detail about any other area of the accident. He expressed to me that he felt his whole life had come to an end, that everything he had strived for was gone. He would repeat the words, “I can’t believe I’m in the hospital.”

Talking about past things was fine. I’d tell him about his grandpa, the man that I remembered my father to be. I’d talk about when he was a young man much the same age as Tye, and all that he was doing at that age in his life and what a wonderful carpenter his grandfather was, the perfectionist that he was in his work.

Act VI – Music Therapy. To ease my son from all his discomfort, I brought in several of my music cd’s for him to hear. Easy listening music to start with and then I’d go through the list of titles and ask my son which music artist he would like to hear. I recall one evening he picked, “Brooks and Dunn” cd. We had been listening to music for about three days and everything was going fine, he even asked for the tiny earphones to be placed in his ears at night, as he said that it helped him fall off to sleep. I opened and shut the cd player about 3 different times in selecting the right song, and then as I sat across the room in the recliner I heard my son actually start to sing outloud to a tune. I listened and a big smile came to my face. I asked him what the name of that song was? He didn’t know; but he said he remembered it and liked it. I looked on the back cover of the ‘Brooks and Dunn’ cd and then looked at the song number on the player; he had chosen the song “You’re going to miss me when I’m gone.”  Out of all the songs that he had been listening to over three days, it was this song that made him open his mouth and sing the words outloud. Unbelievable I thought to myself.

[ Your Gonna Miss Me When I'm Gone lyrics found on http://www.completealbumlyrics.com ]

I’m still hurtin’ from the last time
You walked on this heart of mine
I can’t find much to believe in
You let me down so many times
Heaven knows how I love you
But I’m tired of holding on
You better kiss me
‘Cause your gonna miss me when I’m gone

Not much chance we’re gonna make it
If I’m the only one who’s trying
You know I’m running out of reasons
And we’re running out of time
Someday, girl, you’re gonna wake up
And wonder what went wrong
You better kiss me
‘Cause your gonna miss me when I’m gone

You’re good at going through the motions
All I hear are alibis
Now I get this empty feeling
When I look into your eyes
I don’t see a love light shining
I don’t know what’s going on
You better kiss me
‘Cause your gonna miss me when I’m gone

You better kiss me
‘Cause your gonna miss me when I’m gone

You better kiss me
‘Cause your gonna miss me when I’m gone

My thoughts ran fast to self, My God, you almost died out in the field, you almost died on the Fifth floor and the bad scare with the high fever and many oxygen scares and the song that resonated with your soul were the words: “You’re going to miss me when I’m gone.” My son’s heart was not hurt in the accident, but his heart had wounds that needed help too.

The next journal writings will be on healing the wounded heart and soul.

Card Tricks at the Casino Roy ale, written by: C.Dianne Lieber © 2007

Chapter 13.)

Card Tricks at the Casino Roy ale

It took a card game to put a smile on Tye’s face. It took me beating him at the game. Playing a simple casino card game of 21 every afternoon was my son’s only form of recreation for experiencing some form of enjoyment. He couldn’t sit for very long in a chair or stay upright in his bed, but for the 12-15 minutes that he did allow his body in that position, he would play cards and every time win, but the first time I won, he smiled.

A Smile for the first time. The first time I saw a smile form on his face I almost wet my pants. I jumped for joy and shouted in glee. I remember saying, “What, was that a smile? Do I see a smile upon my boys face?” Then he smiled again, and it was so good to see him smile after being in the hospital for so many days. The frown finally had turned upside down and I was so thankful.

I was worried that as a result from the accident that Tye might have injured nerves in his face and perhaps that was preventing him from smiling. We would do face exercises, he passed the tests, but still, he wouldn’t smile. He would just say to me: “I’m working on it Mom”.

The day he smiled, I couldn’t’ see any facial injury problems, because he just smiled. The best day of recovery had arrived and I noted it by drawing a big happy face with a big smile on his hospital room bulletin board. There weren’t too many people that got as excited as I did that day, but then not that many people saw my son struggle to this part of his mental health recovery. The smile was a tiny achievement for Tye’s mental health progress and it meant the world to me.

To me, that the smile meant that my son was back on the road to recovery and I figured that if one can smile, one can laugh. Laughter would be the next hurdle, but I knew my son could get there by having faith. My 50^th Birthday gifts were seeing my son pass the swallow test and to be put back on mechanical food again. Now God was showing me another grateful blessing, a smile to show me Tye’s inner spirit was alive and living well. I had my faith restored for the day, even though it would be tested time and time again, but, for this day, we all smiled.

The waiting game: 40 days and 40 nights, where’s the rainbow?

We still were waiting for a bed opening at the new hospital. The staff was giving me the run-around when it came to information on the transfer. The ambulance was a big issue and a hardship on the family, but it needed to be addressed. I remember walking back to my room one afternoon to get my laundry from the dryer and thinking, it’s been 40 days and 40 nights, so where’s the rainbow? Where are the calm moments, and the beautiful gifts of promised goodness for me during this whole ordeal?

I Believe There are Angels Among Us. As the days went by, the paper work continued. There was always something that the hospital needed me to look at or sign. Each person that I personally had any interaction with was becoming more and more ‘in my face’ as the transfer approached. Seems one always remembers the bad before the good in times of crisis. Tye and I remembered the bad nurses, but we both agreed on one special woman that made us feel good. In that large hospital we had only found one woman that made us feel good. She eased a situation, she gave informative information and she knew how to talk to Tye. Even on days when he’d say, “She talks to much Mom,” I’d laugh and tell my son, “But she’s the only one that takes time to come see you Tye.” As busy as everyone seemed to be, this one woman took her time to talk to my son and most of all to talk to me. She praised me for being a good mom, she always had a nice complement for me, and she knew dysfunctional behavior from others when she saw it.

Fighting Discrimination And Hospital Budgets For Getting An Ambulance Transport. The days grew long, the hours even longer. Everyday was the same routine in treatment of one thing or another, yet everyday was a surprise in recovery for Tye. With the ongoing sideshow of disruptive behavior from friends and family, I finally was able to concentrate on the transfer.

The ambulance was being taken care of through the hospital as first stated, but only after after a three-day butting of the heads, did it get done. First a staff person acting like a casino floor pit boss with a poker face said, “No, Tye’s state insurance wouldn’t pay for the transfer.”

The Trump Card. Then my sister called the Colorado State Department of Social Services and spoke with the Director of Transportation Services for medical transports and she was told that ambulance fees were allowed for a patient on a pending number status. The Director contacted the hospital and spoke with staff and the transfer was back on. The same staff person (pit boss) was upset over somebody going over their heads and said “No again” while at the same time they demanded money from the family for the transport.

Calling Their Bluff. Pulling a poker hand trick, by calling his bluff, Gerry and I stated that Tye would have to stay on the 5^th floor for his rehabilitation or that hospital billing could go back to the original agreement and have the ambulance paid for through state insurance funding. After that comment, the staff backed down and the transfer was back on.

The Crap Shoot. The stress over dealing with a staff’s ego and lack of sensitivity for the family crisis made me so angry. I could clearly seeing discrimination issues regarding state funding for my son’s medical needs. The same staff person had the audacity to tell me “Well you know, the new hospital will take paying customers first over a patience coming in with state insurance.” I found that statement hard to believe when my son was to be transported to a charitable hospital that did not have a problem with his pending status with state aid insurance. My choices were limited in getting my son into any hospital over the state aid pending status for insurance, which requires a medical number and a waiting period for receiving the number. Therefore, I even researched hospital options out of state too. The family wanted Tye in a hospital in the Denver metro area, but after research, the hospital would not take Tye on a pending status.

New Shooter Coming Out. I had to regroup and think ahead to future plans for my son’s recovery approaching the rehabilitation period. I never wanted to visit the small farm town in eastern Colorado again, never ever in my life time. Every thing that had happened, everyone that was part of the recovery process all became surreal to me. The family players were still holding dice in the crap game, but then they had to fold when learning that Tye’s insurance wouldn’t be approved at their hospital of choice.

As the caregiver, the freak show attractions from the carnival show acts were still happening. It was hard to keep a smile on my face and keep things moving forward in for helping my son with his recovery. The family just kept throwing the dice onto the crap table, wanting a new game to start all over, and to be dealt a new hand. When I was taught how to play a card game, you get the hand that you’re dealt and you play the game. I only had so many cards that had been dealt to me while dealing with bureaucracy of hospital paperwork and state aid rules. One has to play out one’s card hand or fold; otherwise flip ‘um over and tell me what you have that is different from my cards on the table.

The Dog’s Name is P-A-T-I-E-N-C-E. Having patience was not something I nor my son had ever been very good at handling, but me being older and wise we were was sure learning to add that word into my daily life. My son would have to be taught patience at a faster rate than he had ever known. One day while passing the hospital gift shop, I noticed a funny little item. I went in to purchase the item to give to my son and the whole time the gal was wrapping up the gift I thought to myself, I just want it to make my son smile again. It was a breathing dog lying on a sheepskin dog bed. The sheepskin material reminded me of the halo changeable pads that Tye had to have close to his skin. The dog was a comfort zone in knowing that something was still there with him during the late night hours. This funny little pet was to be my son’s new gift in an environment of white walls and silver machines. It took a size D battery to make the dog breathe, but once you inserted the battery and turned the dog over to lie on the bed, you just couldn’t believe how real the toy dog looked like a real breathing dog. The toy really looks like a small dog that’s sleeping in its bed as his stomach moves in and out showing that he is taking deep breaths.

I walked in my son’s room and had the big sack in my hand. As I stepped closer to his bed, Tye said, What’cha got there Mom?” I said “Something to make you smile again.” “Oh yeah,” he replied. “Yep,”

I said with another smile on my face, “This is your new friend. The only thing you have to do is give it a name.” I opened the box, sat the dog and its bed on Tye’s bed and waited to see how he reacted.

He looked at it for a moment and then looked at me, then looked at the dog again and said, “It’s breathing.” “Yep”, I said, “Just like you, in and out, nice deep breaths.” A smile came to his face and he said, “That’s real cool.” He looked at it a long time, then felt of the fur and petted it as if it were real. I asked him; “Okay, what are you going to name your new friend?” He replies, “Patience.”

Again I busted out laughing and Tye smiled a big smile, but still no laugh. He liked the new gift, and showed it off to every nurse and sitter. I told him, “Well now you have a best friend.” He replied, “I already have a best friends, you”. My heart melted.  It became a joke to have the night shift nurse come in to take Tye’s vitals and look at this dog lying in a comfy bed breathing. Even the nurses thought it was real and had to go over and pet the dog to make sure they weren’t just seeing things and not believing it wasn’t real.

Patience went everywhere Tye went now. Praise was often for the next two weeks, and I was thankful for so many things. I had no idea that my son felt the way he did about me and the care I was giving him, or wait…maybe it was all the drugs making him say what he did, but whatever, it sure felt good to hear it. My exhaustion level had made a turn and I got my second wind of energy to carry me through another week. Surely with all I had been through the days ahead would be uphill from here on, but only time and patience would be the true test.

Pack ‘Um Up and Move ‘Um Out Rawhide. Finally, I get the approval date that on Friday, or no later than the coming Saturday, we were to be going to the new hospital. Tye was so excited. I had talked in great detail and asked Tye (the brain injured patient) where it was that he wanted to go for his rehabilitation and therapy. It was Tye who made the final decision to go closer to home; it’s all he talked about. I told him the (family) wasn’t in agreement with where we were going and all my son would say: “Well the family isn’t taking care of me now are they Mom, you are!” I weighed the therapy location as far as I possibly could, I took everyone’s concerns and comments into my overflowing pocket of duties and then came back to the same heartfelt answer. It is what Tye would want, not me, not the family, not friends or even the hospital staff. It’s where Tye chose to go. I could see that my son was getting better, but that he still needed care with areas that only a rehabilitation facility could deal with for him to progress. He didn’t need to be in a hospital bed forever, he needed rehab weeks ago, but I felt the current hospital had hindered this rehabilitation recovery progress a great deal.  I was told that my son was at level 6 now. His blood sugar level had risen to 180 when it should have been at 100. He was grouchy most of the next few days of that week. He was anxious about getting out of this hospital.

The speech therapist would have to conduct one more swallow test before we had the okay to put Tye back on regular food, with the back up from the nose feed tube. He needed all the extra calories he could get. He had lost about 25 pounds the whole time he was in the hospital and for Tye that was a lot, as he already has been a bean pole, now he was an extra thin string bean. He could travel and go to the new hospital with the nose feed tube as it was to be taken off that in a few days.

Check out day was getting near, so as a celebration I decided to take Tye for a wheelchair ride and take him outside into the sunshine. I found him a pair of sun glasses and we rode the elevator to the ground floor. Tye was the only patient in the hospital to have a halo on, so when he arrived anywhere in the hospital, everyone had to look and stare at him. Tye is so true to his astrological sign the Taurus, the bull. I often would kid him and say, he was the like a bull in a china shop whenever he came into the room. His voice carried a loud tone and when he arrived, everyone knew it. When the elevator door opened, he may have been in a wheelchair, but he had arrived in a new atmosphere of living.

He felt alive, in good spirits and to everyone’s astonishment, he was considered a miracle patient. One of the pulmonary doctors that he had in ICU was walking into the entrance of the hospital and noticed Tye in the wheelchair. I couldn’t believe the doctor actually stopped and turned and walked over to greet Tye. I bent down to whisper into my son’s ear; “This man coming towards you is one of the four doctors’ that helped treat you when you first came in here Tye.”

My son rose from the chair, stuck out his hand and shook the doctor’s hand as he said, “Thank you for saving my life.” A shocked, perhaps more astonished look came to the doctor’s face. This was the same doctor that said, “This might be as good as it gets” as my son lay in his hospital bed having seizures in what appeared to resemble a vegetative state with little progress for a full recovery. A miracle patient, you bet a walking, talking miracle from a traumatic accident leaving him with brain injuries and he was on his way to rehab and to finding a way back to living life again.

The Plan. Oh there were still many concerns, but we had hope again. We had a plan; Tye was going to start his new life for Tye this time. No more helping everyone else, no more demands from others in his life, this time, this go-around Tye was going to live just for Tye.

He had a plan, to get better, to get stronger with rehab and find whatever it was that made Tye happy in his life. Everyone, especially his whole family, wanted Tye to be well again, but it was going to be hard, as there was still much work to do and Tye needed help from so many medical resources.  I just kept praying every night, “God please light the way for my son who is still so lost. I wanted my son to find his way in what currently was appearing to be a dark and cruel world lying ahead of him, a world that was hard to find one’s way with disabilities. What was lying ahead for Tye?” The answers were not for me to know or understand, but for Tye to figure out. Perhaps someday, Tye would be given signs or messengers and the reasons as to why the accident had occurred and why it had all happened at all.

My job was coming to an end, but far from over. The nursing tasks for helping my son back to health were still ongoing, but not to the degree it had been for the past 40 days. I still had concerns, worries and questions arising over how things would be handled for Tye at the new hospital after his transport. What would it be like for Tye? How would he adjust? How long would we to be there? I was told rehab (which included speech, occupational and physical therapy) would be at least 6-8 weeks or longer. I continued with the ice packs to help with the pain in his left arm. The pain was coming from the lead line that had to be reinserted. He still complained of headaches and still couldn’t sleep at night.

My next journal writing will continue on family visits before transfer.

Going home to the Western Slope, written by: C. Dianne Lieber © 2007

Chapter 14.)

The Sun Is Shining On Tye, He Is Going Home.

Going home to the Western Slope:

Going Home to the Western Slope. Tye would be transported by ambulance in a continued fragile physical condition, which warranted him under hospital care throughout the transfer. The new hospital location was a 5 ½ hour drive away. He had to travel by way of Interstate highway traffic through the city of Denver, enroute up and over the Continental Divide, enter and exit a mile long tunnel through a mountain, cross rivers and move through the canyons just to get home to the Western Slope of Colorado.

The Count Down Begins. My son and I had three more days to go before leaving the hospital in eastern Colorado. We had lived at the hospital for 40 days. Living in a hospital, had been quite an experience each and every week, day, hour and minute. My son was so tired with anguish finally about getting to go somewhere. Anywhere was better than what he had experienced during his journey of recovery. There was hope, new expectations and a feeling of being scared all rolled up into one. The halo was still on his head and the nose feed tube was in his nose. All the main lines in his arm were finally removed. It was a period when we would have to wait some more. Just three more days, but it felt like another week away to us.

The Patients Physical Condition. Tye still had some treatments that he was going through as we waited for the transport. The trech had been taken out a few weeks prior. The trech left an open hole in his neck area. The constant cleaning and sucking out of the secretion was easing down. I had made it my job to constantly clean and replace the bandage on the open hole in his neck. This went on for the entire two weeks that the trech tube had been removed. At the time of transport, the hole didn’t need a bandage, but it still did need to be cleaned daily.

The hole had a sunken look, which was disturbing to me. Tye didn’t want anything touching that area or his neck. He was still on sleeping meds, pain meds and was taking his Coumadin once a day. The anger episodes had subsided, but were still a worry to me. We continued to take the wheelchair rides and used the walker to walk down the hallways, so he could get exercise. He still had a hard time sleeping at night, so any sleep (naps) during the day were much needed and welcomed.

Back down the hallway we all walked to go see the gold fish in the aquarium that was in the larger waiting room. Tye liked the gold fish. Watching the gold fish swim gave us something to do rather than just sit in a boring hospital room. Tye had his routine down very well. He knew the route that he wanted to travel when walking the hallways. He wouldn’t let me stray from the route or he would always ask, “Where are we going?”The route changed when I wheeled him up and down the floors of the hospital,as we were going to travel to new areas of the hospital now. I’d show my son new locations in the hospital, such as where I ate lunch (the few times that I did), then I’d show him different waiting areas. I wasn’t allowed to take Tye out of the building, or I would have taken him to the hospitality house. He had patient rules to follow, so I tried hard to adhere to them for his recovery.

Departure Visits. Some family members decided they just couldn’t get down to the new hospital location (where Tye was to have his rehabilitation) so they wanted one more visit before we left. Others were busy getting their job schedules re-arranged so they could be at the new hospital location upon his arrival. Other family members drove from miles away to visit Tye in his new hospital location back home on the Western Slope. After the family visit, Tye took another nap and then we played cards.

I remember one of Tye’s very special friends called me every week. Each and every week, Tye’s friend placed a call to ask how Tye was doing and then he always extended support or offered a helping hand to me. It was so nice to hear someone ask, “What do you need or how can I help?” There was nothing that Tye’s friend could do at that moment, but on his visits to see Tye in his physical state it truly was upsetting for him. He was Tye’s best friend, his true friend that made an effort to call me each week.

Tye’s children came for a second visit. The visit went a little better than the first visit. The visit was still upsetting to Tye. When he saw his children and ex-wife, he would become so emotional. Like the first scheduled visit from his children, Tye wanted to prepare by grooming as though he was going out on his first date. He asked to wear a certain soft green flannel shirt. He wanted to wear his heavy flannel gray colored sweat pants. He wanted to be sitting in the recliner chair when they came in the door. He stood and this time walked over to his ex-wife and gave her a big hug. Tye couldn’t put his arms all the way around her. He wanted to give her a bear hug. His arms were not cooperating well having a halo resting on his shoulders. He did extend his arms out and it became very apparent that any person standing in front of Tye would have to offer the hug to him. I ordered ice cream for the kids and we all sat down on the carpeted floor and had an ice cream social as a goodbye before we left the hospital.

There Are Better Days Lying Ahead For My Son. The morning had arrived and Tye was up early, very early. I had ordered breakfast for him as I was told we were to leave right at 7:00 a.m. Tye didn’t want any of the breakfast, as he was just too excited. The anticipation of finally leaving was building by the minute.

I helped my son get dressed and wait for the ambulance paramedics to arrive. I had gathered up all the hospital memorabilia that was in my son’s room. Anything and everything from the time we had arrived in the hospital was packed up and ready to go. The pictures that had been taped up on the walls of Tye’s children to gifts received throughout his stay were all placed in plastic hospital bags and carried to the car.

I was handed a large stack of papers wrapped in two heavy rubber bands on each stack. The stack of papers was all of Tye’s medical records. I had asked for all of my son’s medical records on the Friday before the transport. I was told everything was in the stacks. All paperwork was in order; his medical reports were ready which allowed the transfer to the new hospital. Then I signed a release for transport and we waited to go.

Finally, at 8:00 AM, the hospital administrators said we could go. Walking and looking down from the elevator doors, going around a corner, looking out a window, I saw the transport ambulance. I saw two paramedics and the ambulance gurney.” I told my son, “We’re just about ready son, here comes the gurney.” We waited a few more minutes’ while one of the paramedics walked all the way down the hall to get one more paper and instructions from the nurse. Tye was so anguished; he just can’t take it sitting and waiting. It’s was 8:20 AM. In walked two men rolling in the ambulance gurney bed. The gurney bed mattress looked hard. Tye looked at the gurney and then at me saying, “I have to lay on that the whole way?” “Yep”, one paramedic stated in a low stern voice. I asked if it is okay for my son to have some pillows behind his back and the paramedics agreed that the pillows would help with the ride. Tye proceeded to get up on the raised bed and started to lie down and then said, “This isn’t going to work Mom”. I replied, “Why is that?” He stated, “I need to sit up, I just can’t handle lying down.” “Okay”, I replied. Tye’s statement made one of the paramedics aware that he should raise the back head area on the gurney and then all was well.

“We Were Blowing This Scene” as my children so often say. After what seemed like 15 minutes, the paramedics began rolling Tye down the hallway passing the nurse’s station. The regular nursing crew wasn’t around at the nurse’s station. For all I knew maybe they had planned it that way, but we weren’t going to wait around for anything or anyone again in the hospital. Three nurses looked at Tye and told him goodbye. Walking fast recalling when Tye was wheeled to the fifth floor and going through another near death experience, I thought back to many horrific days with uneasy feelings and then quickly focused on “we are out of here at last”.

Tye was loaded into the back of the ambulance. I looked at him and said, “See our car over there?” He looked and said, “Yes.” Assuring him, I said, “Well, I will be right behind this ambulance the whole way. All you have to do is look out the back windows and you will see me. I won’t leave you son.” In reflection, the words that resonated with my son in a song were about how he felt people would miss him when he was gone. For now, my son wasn’t gone and my last spoken words to him knowing that I wouldn’t be by his side for the next 5 ½ hours were “I won’t leave you son”. The paramedics closed the back ambulance doors.

No One Knows What Goes On Behind Closed Doors. This would be the first time that I wasn’t right near my son. It felt strange, but I needed it. I needed my time to reflect, regroup and just to think. I had a 5 ½ hour drive to think about the entire traumatic experiences of being at the hospital.

As I passed each and every cornfield while leaving that area that felt like an unforgiving place, I thought to myself, “I never want to see this area again.” Never do I want to be around cornfields or come to the Eastern Slope of Colorado again. My feelings were deep in a well, in a dark hole of loss as I reflected on the past happenings. I was taking my son home, back to an environment where he belonged. The only thoughts about riding in the car were to make sure I was right behind the ambulance as we left and all the way to the new hospital.

The Front Range and Eastern Colorado farm towns aren’t my son’s home. His ex-wife relocated to one of the nearby towns where the accident happened; thus, his children had been moved 4 ½ hours away from him. Work had slowed down for him, so he spent two months in Denver on a job. From my point of view, he was spending way to much time commuting between towns trying to see his children, work and rebuild his life. As a result, his life had fallen apart over a motorcycle accident, a death of a friend, and serious harm to his health. He was out of work, and facing longterm rehabilitation on his journey back to recovery.

My son was raised in Northwest Colorado on the western slope. The Western Slope has a different culture from the Front Range. The culture of the people are more down to earth, family oriented; loving, caring people that would give the shirt off their back if you needed it, yet in trying not to make a comparison, I only experienced the opposite from whom Tye and I met during his recovery for 43 days in a farm town on the Front Range. I was never so thankful to be leaving a place in all my life.

Just as I think we are rolling along down the Interstate, all of a sudden the ambulance signaled right and turned off an exit ramp onto a side road. My anxieties were as high as the altitude as we climbed the descent to the Eisenhower Tunnel on Interstate 70 westbound. I couldn’t communicate with the ambulance drivers. I didn’t know what to think. Was Tye sick? Was he not doing well and did they need to care for him, what was going on? Was the altitude climb bothering him? Quickly, staying right on the ambulance’s rear end, I stopped, jumped out of the car and walked over to the ambulance side door and opened the door. I asked the paramedic what was wrong.

The paramedic looked at me and said, “Nothing other than Tye had to go to the bathroom and he just couldn’t use the (cup) in the ambulance.” I was in total disbelief, the wind was blowing hard, we had stopped at a gas station and my traumatic brain injured (miracle) boy was walking to the entrance of the gas station door.

Leaving Deaths Door to Opening Your Own Door. I stood in the wind watching my six foot two tall son walking, talking and breathing all on his own. On a high mountain top, on his way home, my son opens his own door. It had taken 43 days and a lot of work, but Tye was on his way to recovering. He still had no memory of the accident. I still had several areas of concern, but on that day he was the true (treasured) pot of gold at the end of the rainbow.

Clear Skies And A Beautiful Day.

The rest room stop finally completed; we climbed back into the vehicles. In the blowing wind, I was opening my car door when I noticed one of the paramedics waved me to come back to the ambulance. I walked back over to the side ambulance door stating, “Is there something else wrong?” They smiled and Tye looked at me and asked, “Mom can I have a smoothie”? Tye still wasn’t allowed to have a regular drink. All drinks had to be thickened due to his swallowing problems. I laughed, saying, “Sure, I’ll be right back”. Walking in the blowing wind towards the gas station convenient store, I was on a mission to find a smoothie drink. I find just what he wanted as well as I saw a large Three Musketeer candy bar. I grabbed the candy bar and smoothie and returned to the ambulance. Climbing up into the ambulance area (where my son was resting) I looked at the two paramedics and said, “You didn’t think we were going to have any fun, did you?” They smiled, but didn’t laugh. The lack of laughter reminded me of Tye’s non-laughter too. Because the whole scene of events wasn’t a laughing matter up to this point, I guess we were going to have to work on the smiling thing with the ambulance people too. I handed my son the smoothie drink and he smiled.

Then I realized that mom forgot the straw. So, back out into the wind I went to get a bendable straw, which I had in my car. I climbed back into the ambulance, to hear a giggle from a paramedic whom was located in the back area near Tye. I guess he thought my actions were funny. I handed Tye a treat.” I looked at him again and told him, “Well son, you really shouldn’t have this, but today is a special day, so here is a treat”. I pulled out the candy bar and I saw a big smile come upon Tye’s face. He said, “You’re kidding” “No, but you are going to have to eat it slowly and in tiny bites”. He said,” What’s tiny to you Mom?” I pinched off a half inch piece of the chocolate candy and told Tye, “That’s about what you should be eating – slowly chewing each tiny piece of candy before swallowing”. Now, the paramedics might have thought I had lost my mind, but they hadn’t gone through the ordeal that I had for 43 days on this ‘swallowing’ issue.

Tye had come so far, I sure didn’t want him to have to go back to that farm town hospital again. I left the ambulance thinking to myself, wow… a candy bar lit up his face and made him smile. Maybe when we get to the new hospital I can come up with something to make him laugh.

Stops Along The Path. Down the road we drove, going around the corners and up and down the mountain passes. All of a sudden, the ambulance signals to turn off the highway again. I thought to myself, there wasn’t that much liquid in that 4 ounce smoothie drink. We pulled into a rest area. This time getting out of the car, the day was quite beautiful. We stopped along side the Colorado River amongst the vast canyon rock walls. The ambulance driver pulled into a handicap parking spot and got out and started walking down a pathway. Once again I got out of my car, walked over to the side ambulance door and looked inside to see what was happening. Tye was getting up from the gurney and told me he needed to use the rest room again. We climbed down out of the ambulance. The paramedic returned and stated that it isn’t far to the restroom area. I looked onward and thought to myself; well it looked far, but guessed we have no choice. I then look at the second paramedic and asked him, “Where is the wheelchair?” He looked surprised and said, “We don’t have on.” My thoughts were: “No wheelchair, no walker, nothing to help a patient walk down and around a pathway to the bathroom.” It didn’t surprise me, why would this problem be any different than anything else they have done to us. I told the two men to hang on to my son on each side arm, because I didn’t want Tye to slip and fall with his halo on his head.

Back in the ambulance, back onto the gurney, Tye asks me where we are located. I looked at him and said, “Almost there son, just another hour and a half, are you alright?” He tells me he is fine, but that he isn’t comfortable on the gurney, and I replied, “Well just hang in there and before you know it we will be there”. I asked him how he liked going in the tunnel backwards and he said I don’t remember. The paramedic told me that Tye only looked and talked about my car. He only looked at what was behind the ambulance, so he only saw the car. In pause of his comments, my son never took his eyes off of me and Gerry the entire way home.

Rehabilitation : The ripples begin.

Memory Ripples, written by: C. Dianne Lieber © 2007

Chapter 15.)

Welcome Home To The Grand Valley. The transfer happened over a weekend. My sister drove from California to be at the hospital upon all of our arrivals. She knew we had left the Eastern Slope sometime early in the morning; therefore she planned to arrive at the hospital at 12:30 PM and await our arrival. Not knowing if we had arrived, she walked to the rehabilitation floor and asked a nurse what room Tye was in for rehabilitation services. We hadn’t arrived on time, due to the two road stops, but I knew that my sister would be waiting for all of us.

We’re finally here! The ambulance followed a circle driveway up to the emergency entrance. The paramedics helped Tye out of the ambulance, still keeping him on the gurney bed. The paramedics followed hospital staff to the rehabilitation floor. Once again, we were traveling down halls and going around corners in a hospital. The new hospital had an environmental décor reflecting nature in symbols (trees, rivers, bears, and deer) and words (canyon, book cliff) on the floors, walls and elevator doors. Immediately we knew the names and symbols. Both Tye and I were nervous, not knowing our destination. We were filled with much anticipation as to what next was going to happen.

Arriving on the rehabilitation floor, looking down the hall, I could see my sister in a chair. She stood, upon seeing us arrive. Later she told me that Tye saw her and never took his eyes off of her. As soon as he was within talking distance, he spoke: “Hello Aunt Sue Ann.” She replied, “Hello Tye, welcome home and I’m happy to see you made the trip.” My sister noticed that our faces were fatigued from the drive as well as deep grief rested in our eyes. All in all, just arriving, coming home and being at the hospital were happy feelings for us. Everyone looked at us with a smiles on their faces. They all were a happy staff, something I hadn’t seen for the last 43 days. They were so happy doing their job and helping the patients that when Tye arrived, they knew him by his first name. The two paramedics wheeled Tye into his new room. Tye stepped off the gurney onto the floor. He was standing in his new surroundings. The room was in the inpatient area for rehabilitation services. A head nurse assigned to my son was standing right in back of me. She said in a very pleasant voice, “Hello there and welcome.” Welcome! Boy that was different for me to hear those words. I hadn’t heard anyone say that to Tye and me the whole time that we were at the past location.

Tye laid down on his new hospital bed and I stood near him holding his hand. I looked at him as the paramedics wheeled the gurney out of the room. One of the paramedics came back in and shook Tye’s hand and said “good luck.” Those words spoken to my son from a medical staff member were really nice to hear.

The Welcoming Committee. It had been a long trip, (almost 6 hours) and Tye was tired. He was in a new place after spending 43 days at the last hospital. He was totally surrounded by new hospital staff that had unfamiliar faces. I could tell by just by looking at him that he appeared to be afraid. First to arrive were the rehabilitation therapy therapists. Many more of the staff came in the room asking Tye questions about his health. I didn’t understand why the staff was asking so many questions when his medical information was in his file. I thought the other hospital had sent all the paper work earlier in the week so that the new hospital would be up to speed about taking care of my son’s recovery. But I was wrong. The hospital in Eastern Colorado did not send ample records for helping the rehabilitation therapists. Quickly, I jotted down a few helpful notes to the nurse and one rehabilitation therapist.

The Home Coming With Family. Tye’s nurse explained everything about the room and all the hospital rehabilitation services for Tye. She was most informative about the rehabilitation facility rooms and amenities. I stood in shock to hear the nurse tell us where the towels where located, and what was on the meal menu. The staff appeared to be so accommodating to all of us upon arrival of my son’s health care.

The nurse excused herself to go get Tye’s meds and I looked around the room. It looked very much like a young college dorm room. There was a nice double window facing out to the south. There was a writing desk in the room. Above the desk was a large round clock and also a nice bulletin board. There was a big sink and mirror in the room with a view of the Book cliff mountain range. The overall appearance of the room wasn’t like a hospital room, but more like a school dorm room. The room was filled with all the new hospital décor from what we had been living with for the past 43 days.

As I walked down the hallways, I viewed the other rooms. The rooms had patients of all ages, but I didn’t see anyone my son’s age of 28 years old. The patients on the rehabilitation floor were there for their own rehabilitation, but I noticed it didn’t seem like anyone was in nursing home care. I tried to speak uplifting comments to my son and tell him that he was in such a nice place, it really did feel good and we were going to be okay.

The rehabilitation therapy people left. Standing near the door, I turned and noticed my youngest son standing in the hallway looking for Tye’s room. He was just glowing in his face. He was happy to see me. He came right into the room and Tye got up from his bed and hugged him.

Tye seemed better, but I could tell he was still scared. He returned to his bed and everyone was talking in the room, everyone that is, but him. He looked around, looked at everyone and seemed to just be taking in the moments. I stepped back over to his bed and said, “Everything alright Tye?” He looked at me and said, “I don’t know, it’s weird.” I said, “I know, but this is the start to your entire rehab son, as we had to leave the other hospital and come here for rehab.” He said, “Yeah I know, but it still feels weird”. Tye had a routine at the other place; he knew every hallway, every nurse and every sitter. This was a different place, strange surroundings and he just wasn’t sure about anything. Once again, I took hold of his hand and said, “It’s going to be fine son, I’m right here with you and I’m not going away.” He cried and squeezed my hand and said, “YOU BETTER NOT.”

The nurse returned with Tye’s 6 o’clock evening Coumadin pill and a pain pill. The rehabilitation doctor was standing in the hallway and while the nurse was giving my son his meds, I went to talk with the new doctor. The rehabilitation doctor was a young man to me. He was leaning on a hall hospital wall and looked at me. He shook my hand. A few words were spoken to me from him and then he stated, “I just can’t get over it”. I asked, “Over what?” Tye’s new rehabilitation doctor told me that when he saw Tye coming down the hallway, he noticed him walking around and thought to himself that Tye should have been sent to their hospital at least two weeks earlier. He was so impressed with him that he apologized for not having Tye sent there sooner. I didn’t know what to think other than I asked him if he knew about all of Tye’s medical records and history? He said, “Well the other hospital wasn’t very forthcoming in their information, but he had enough to go by for no.”. He was going to take Tye off the hard narcotics, no more Dilated, it would be Vicodine for his pain. No more Ativan, it would be Busbar and an antidepressant to help him sleep. He was going to get Tye some new x-rays. My heart was overwhelmed with joy for the first time in over 43 days, I thought to myself, he will be off his meds, oh oh…wait a minute. I had to think about this, you can’t do rehabilitation when you’re over-medicated on heavy pain knock-out pills. You can’t go forward with your treatment if you are under sleeping aids. The new doctor had assessed Tye’s current physical and mental condition within minutes of our arrival and I had to admit that I was relieved at his approach of medical treatment.

Tye’s younger brother was talking to him and my sister was also there to ease the feeling of me being overwhelmed. I had to sign more papers and gave new information to the nursing staff. My medical proxy duties were still oncall for helping with my son’s health care.

A Welcome Tour. Then another nurse wanted to take us for a tour. She was so nice and wanted Tye (the patient) to feel right at home. This was to be his (home) during his rehabilitation. The staff wanted us to feel at home in a hospital atmosphere on the rehabilitation wing. We walked to a large room that was the rehabilitation gym. There was a kitchen area for patient’s to cook and help them prepare anything that was stocked in the refrigerator and cupboards. If a patient wanted a cup of coffee, the coffeemaker was there and they could help themselves by making it. The refrigerator was stocked with thickened drinks and ice cream.

Everyone, and I mean everyone, was friendly. The friendly demeanors felt a little strange. We hadn’t experienced hospital staff being this nice to me and my son throughout the tragedy. In reflection, I recall stepping into the nurse’s area and a nurse asked me where I was staying? I said, “Well I’m set up at my other son’s home, but I feel so uneasy leaving Tye right now.” She put her arm around me and said, “Honey you don’t have to leave your son, we can bring in a cot right now to his room. You can stay here as long as you or Tye needs you.” I fought back the tears and said, “That sounds great, how soon can we get the cot?” She said, “I’ll have one of our staff members bring one right now to his room.”

The cot was being wheeled into the room and Tye looked at me and asked, “What’s that for?” I said, “Well Tye for your first night, I thought you might like it if I stayed here tonight.” Big crocodile tears ran down his face and he said, “That’s just what I wanted you to do Mom.” With a crackling voice, he said, “I love you Mom.” I looked at him and said, “I love you more and I told you from the very beginning, I won’t leave you.” and I meant it. He really thought he was going to have to share the room with another patient. I made the cot up as comfortably as I could and then went back to visiting with the family.

Another family member arrived to see Tye. My second son, (Tye’s other younger brother), put Tye in smiles. Tye couldn’t believe both brothers were with him. Tye immediately wanted both brothers to walk down the hallways to show them the gym and the refrigerator stocked with ice-cream. Tye was so impressed with where he was for healing and wanted to show off his ‘stash’ of goodies that the staff had placed in the refrigerator for him. The whole right side of the freezer was filled with chocolate ice cream cups, all for Tye. No more chocolate pudding, as Tye was turned onto chocolate ice cream cups.

All three of my sons were sitting in the kitchen area eating chocolate ice cream cups and laughing about the equipment in the gym. I listened from afar and watched my boys bond. They were acting like brothers again. It had been a long haul, a very stressful time for everyone, but here were, all were back together again, and it felt so right. At that moment, I knew in my heart that the transfer to this hospital in Western Colorado was a healthy choice for my son’s recovery. I had made the right decision which was based on staff at the former hospital telling me to put Tye back around what he is familiar with for helping him heal or for him to arrive at his awakening back into life. By bringing him back to Western Colorado’s environmental surroundings, this would help with his memory losses. Having family and familiar surroundings would also be a good thing and would help in his recovery.

Memory Ripples. The book cliff mountain range was a familiar surrounding to Tye, due to him having worked for one year in construction. Upon viewing the book cliffs, Tye said, “I worked up there Mom.” Another memory ripple was when he heard construction workers outside his hospital room window using pylon drivers to build an addition onto the hospital. He stood at the window for a good five minutes telling me everything that the men were doing on the job, in detail, as if he were the foreman. Being a foreman had his construction job. I was amazed at his mental thoughts, because back at the former hospital he couldn’t remember what his job description was or what he did for work. He had been at the top of his game in his career field when the accident had happened.

The day had been long, the drive was hard on Tye and he was tired, so the visitors left. Each family member took turns giving Tye hugs and kisses. Then at evenings rest, the hospital room surroundings became quiet.

My sister had delivered a new bouquet of fresh flowers and I had placed all the funny gifts on the window shelf, so Tye could see them. Because we had arrived on a Saturday, the staff had told us that Sunday was rest day around there, so no therapy sessions would be done on Sunday. We had a whole day to just relax and gather in all our thoughts and feelings before the rehabilitation would begin.

The Rehabilitation Schedule. The nurses had advised me that rehab time for Tye would be hard. Tye would be spending four hours a day, everyday doing physical therapy exercises. The physical therapy would tire him, the occupational therapy would help the arm and hand, and the speech therapy was to get his swallowing better and help him with the memory area. Each treatment had a certain goal, and each treatment was very important in helping my son regain a normal way of living life. The gym room had every piece of equipment required to restore the patient’s recovery issues. It was up to the patient to work hard at reclaiming their body again. At days rest, we weren’t thinking about Monday’s rehabilitation schedule. That evening we didn’t have to think about anything at all.

Laying my tired bones down on the cot, Tye talked to me just like we did at the former hospital. I would remind him that he was the most important person in the world to me right now. Nothing was going to make me leave him or go away from him. The cot was lumpy and sagged in the middle, but I never conveyed my discomforts to Tye. He asked me, “Is that really bad, that bed you’re on?” I’d just laugh and say, “Not too bad”, not too bad at all as I would sink down into a crevasse of the bed.

Tye was lying in an exhausted state. He asked me how long he would he be like this? He’d ask why it all had happened. We would talk about the day and getting to the new hospital and I’d try to say funny things in hope that he would laugh. When I thought he had just fallen off to sleep, I would begin my journal writings. I’d hear his voice again. “Mom, will you please stay right here with me?” I’d quietly reply, “I am right here with you son.” “No,” he’d softly cry out, “All the time, for as long as I am here in this place.” I thought to myself, I recall my son Trevor telling me that had a nice queen size bed that was set up at his place. The bed was waiting for me to use it. Then I softly spoke and said, “Tye I’m right here with you, right next to your bed in this room, I’ll be here as long as you want me to be here, okay?” He quietly spoke again and said, “Okay Mom, thanks. I’m just not ready to be left alone”. I answered, “I know son and its okay. I won’t leave you.”

The sagging bed was taking its toll on my body. I couldn’t get to sleep. My thoughts went back to when my son was standing at the window having a nice adult conversation about the construction workers. I went back in my thoughts to a time when Tye called me every day, sometimes 5 to 6 times during the day to talk to me. He’d be at the job site waiting for the trucks to bring him ‘a load’ (as he put it) and he’d stop what he was doing to call me. I would laugh and ask him, “Aren’t you working?” He’d reply, “Yep, just waiting on these idiots to do their job,” then he would insert into the conversation, “They dumped the dirt right onto the project that he had just finished grading and he would have to clean up their mess again.” He’d always tell me about the mess-ups that the other workers did and how he would have to ‘fix it’. If some hole that was dug by a worker wasn’t to Tye’s satisfaction and he’d have to ‘fix’ it all over again. My son, the perfectionist.

The perfectionist personality was showing up as my son grew older. There was a call from Tye telling me how he really liked his job and was going to stay in the Grand Valley area for a long time. He liked the valley and was getting to know the town well. He liked the seasons too. The valley didn’t have severe winters but it sure had hot summers. I’d just hang up the telephone and before I turned around twice he was calling me back. He’d talk to me about everything and anything, we were very close. I knew about all his love life attractions, I knew about his future housing plans, even down to what he really wanted to achieve in life.

My son opened himself up to me in areas where most Mom’s have no idea what their child wants or likes or has a passion for in life. The telephone calls were ‘our’ time talking about his concerns, worries or dreams in life. Tye had deep feelings and even though he opened up to many people, it was not the same way he did with me. My son had a way of telling me just what was on his mind about everything and everyone in his life. I was proud of my son, as I was proud of all of my children. Each one of my children have achievements that are unique and special to me.

Tye’s construction career wasn’t new to me, as his father spent many years in the construction field. My only worry was that construction jobs were short-lived, that he would travel to and from each job site and not too many 60+ men are still behind a loader or scrapper. I worried that by the time my son was in his 50’s, would he retire at a construction job or would his health prevent him from being at the top of his game?

Tye had advanced quickly on his job by learning the computerized construction equipment. His precise accuracy of grade cuts gave him high paying jobs. He won first place in a competition of ‘equipment operation accuracy ‘ for the entire western state range, and the head of the competition coordinator wanted Tye to go to Las Vegas were they have the ‘World’ level competition. I’ll never forget him busting in the door one weekend and showing off all his gifts that he had won, from a nice jacket, thermos mug, logo patch, to a baseball cap with their logo from the competition. His face beamed with pride and achievement that he alone had made it and won. I would lie on my cot and think to myself, would my son ever get back to those days again? Would he ever go back to construction work? Would he ever be at the ‘top’ of his game after this horrific injury to his body and mind?

For all of our family and friends kept telling me that Tye was going to go back to his former job in six months, back to his former lifestyle and be back up on a loader. This was completely in direct opposition of what the doctors were telling me. All doctors had been telling me that Tye would not be able to return to his work, due to his injured cognitive abilities, particularly math skills. He would have to find a new kind of work.

Rippling along:

Rest Day Had Memory Ripples, written by: C.Dianne Lieber © 2007

Chapter 16.)

Sunday morning began at 3 a.m. to take vitals, 5 a.m. to draw blood. Each nursing task woke me. Tye began the new day with a routine at the new hospital. By early morning, the breakfast tray was set on a bed table. Tye looked at the tray making comments about how the food would taste in the new hospital.

Tye was settling into the new place very well. He had only been at the hospital one day and an evening. He had a new routine going. He knew the way up and down the hallways, he knew where the kitchen (ice cream supply) was and he knew I was never very far away from him. I recall when I would walk several steps behind him that he would stop and turn around to see where I was located. No longer was he using the walker, the hospital didn’t think Tye required the support of a walking tool. He was there to learn how to manage by himself in a daily routine of gaining self assurance and confidence. The continued use of a walker meant being handicapped. Walking without the walker was a challenge for Tye.

The accident had broken Tye’s front teeth. He was missing half of the two front teeth. He couldn’t sit in a dentist chair and have a vibrating drill work on his teeth. Dental work wasn’t going to happen for Tye with traumatic brain injuries and a halo attached to his head. The longevity of his stay in the hospital made the teeth decay and ¾ of his teeth were missing. It didn’t matter to family how Tye looked in appearance. We cared that he was alive.

Family Visitors. More family visitors’ came to assess Tye’s new surroundings. Tye and I just went with the flow, each family or friend had their own opinion about the recovery treatments, but none of them cared for Tye on a daily bases. None of them took on the 44 day nonstop caregiver role. Early evening and Tye’s brothers came for another visit. They brought Tye new clothes and stayed to talk. The conversations were general in nature. We all spoke with caution hoping not to trigger a memory that could set Tye back in what the Doctors had been telling me was known as ‘regression’ in healing. No one wanted to upset Tye, so we found neutral topics for conversations.

Laughter Was The Best Medicine. Something said made Tye laugh. It had been 44 days into Tye’s recovery, but finally we hear the sound of laughter coming from Tye. Everyone in the room laughed and I went right over to the bulletin board and wrote a number one on the board followed by the word laugh. One laugh happened, would there be more? I prayed that his brother or anyone could get more laughs out of Tye. The scoring on the board continued as Tye’s laughter happened. The laughter went on throughout the evening visit. I noted 6 full laughs on the bulletin board and in my journal. It was so exciting to see my boy smile and laugh again. He may have looked crippled, but my boy had such strong inner will and strength, I just knew he would do fine at the rehabilitation recovery.

Monday Morning Surprises. Rehabilitation began with a schedule. Each day the hospital staff would bring in a printed schedule of assigned times for Tye to meet with different therapists. First session was another barium test to check Tye’s swallowing. The test showed a weak swallow; therefore, the therapist advances him to regular from the mechanical food with small portions. The new meal plan was to add drinking water in between meals.

Off to the rehabilitation gym he went. I’m asked if I want to watch him. I thought to myself, wow I was asked to belong to something; again this was a new concept different from the former hospital environment. At the new hospital, the staff encouraged family to get involved. I said, “I would love to watch my son’s therapy”. Tye walked to the gym room.

I find a stool to sit on for observing. Tye was asked to sit at a machine. The machine was to help him move his arms in a rotating motion. He began the exercise and did fine. The woman running the machine asked him if he would like a cup of coffee. Tye looks over at me and then at her and said, “Yeah I used to drink coffee, I like coffee.” She asked him to stop the exercise, take his arms out of the holders and then she asked him to help himself to a cup of coffee.

She walked over to the coffee pot and told Tye where the Styrofoam cups were located. She told him to pour himself a cup of coffee. I looked on in amazement. Tye is tall and didn’t have a problem reaching the second shelf where the cups were located. He favored his left arm quite a bit, so he would take his right arm and hold his left arm for support while he reached or held anything. He set the cup beside the coffee pot and reached for the handle of the coffee make. He bumped the cup and the cup fell over. He said, “Well I’m off to a great start aren’t I”. There was my fragile boy just now beginning life skill tasks that I never thought he would get to in the first days of rehabilitation exercises. In observing others, the hot coffee had been poured from a patient that couldn’t use his left arm and had trouble with his right arm as well. The therapist was so encouraging, and nice to Tye that he felt okay with her helping him in awkward situations. We were there only 10 minutes and Tye had poured himself his first cup of hot coffee and had advanced to the next higher level of occupational therapy. Each test the staff put him through was to help encourage him to do even one more harder task. He would always start the conversation with, “I don’t know if I can do that”, followed by but “I’ll give it a shot”. Every task was accomplished with flying colors. I recall telling Tye how proud I was of him. He had so much desire to accomplish the therapy exercises.

For me, to see him go through the different therapy treatments told me that the rehabilitation exercises were needed all along. Rehab was needed in all areas for healing. The exercises for speech were working on his memory while keeping an eye on his swallowing. Occupational therapists were working hard with his arm and hand, and physical therapists were doing everything to help the entire body move and get back into physical motion.

Tye didn’t care for the speech therapy part to his recovery; the exercises were difficult for him. He could do the tests that were cognitive skill based to some degree of passing. I watched each therapist do their job. In the back of my mind, I thought about the psychological treatment needs for helping Tye cope. I wanted another Neurophysiologist to see my son at the new hospital. I felt his memory recall was getting stronger; therefore he needed to be seen by a mental health professional that dealt with trauma issues and TBI injuries. I wanted not just any mental health practitioner. I wanted someone to truly understand brain trauma and would know how to talk to Tye for helping him find ways to cope.

Being the first real day spent at the new hospital, the evening nurse on call limited the visitors to only two in the room. The stimuli rule was still very much a daily part of Tye’s recovery, even at a new hospital. Tye wasn’t that happy about ‘the stimuli rule’ as he wanted everyone in his room. He knew the visitors tired him. His best friend and wife came to see Tye that evening and only stayed a few minutes; they could see he was so tired.

The next memory ripple in Tye’s recovery was about his bills. He had possessions that needed taken care of, even though he was in a hospital. He asked questions of how his bills were being paid, even asked about his truck again. He wanted Gerry to go get his truck and bring it to him with his bed in the back of it. He thought that if he had his truck and his bed, he would be going home soon and felt he needed them. He didn’t wonder about the accident, he didn’t ask about any specific questions about the accident. He was only questioning how his bills were being paid and wanted to know about his truck. His mind was clearing, but far from being clear from the fog in the storm. His memory was slowly coming back to him. While his mind was slowly putting pieces of his life back together, all he cared about in his journey of recovery was pain meds and could he have another ice cream cup.

The Scavenger Hunt. Who doesn’t like a good hunt? Who would have thought the second day during a rehabilitation session Tye would be going on a scavenger hunt. He was to walk around the hospital and pick out all the things the therapist had written down on a list.

For Tye, the game was for helping his mind. Tye was ready for a memory game. He was to find a picture with a flower, well he said out loud, “There’s a picture right outside my door, does that count?” The therapist looked at Tye and asked him, “Does the picture have flowers in the picture?” He said, “I think so, let’s go look”. Sure enough the item on the list was identified and checked off as correct. Tye was recalling objects around the hospital and finding things quickly. He didn’t even realize the game was for testing his memory skills.

The memory game was all part of the rehabilitation therapy that helps an amnesia patience restore their memory. There was a statue somewhere in the hospital, could Tye figure out where? He thought for just a moment and then answered, “I think I saw one down stairs by the front door”, he was correct again. He was to locate a fire extinguisher too. No problem and he aced the test question again. He smiled, laughed and his face glowed from accomplishing the tasks. His next scavenger hunt was to be outdoors. Nothing to pick up, reach for or bend over to get, just spot the item and that was all the memory game was about. The therapy personnel sure knew how to have fun with their patients.

The next day’s obstacle course would be a challenge to the therapist running the show. On a different floor from Tye’s room, we traveled to an area that was set up with an obstacle course. There was a wooden ramp with stairs, a board with carpet, gym mats and carpeted boxes that varied in size. He started at the ramp with stairs. The occupational therapist asked Tye to climb the stairs and then do it again. Up and down Tye climbed so that the therapist could see how he did. He would move on to the floor mats, walking over them to check on balance. The carpeted boards and boxes were to check on his balance too. The object of the exercise was to see if Tye could walk around, in and out of the boxes without swaying or getting off balance. Once again, Tye said, “I’m sure I can do this” and then he would begin the task. Each obstacle exercise Tye did fine and passed.

Then came the hard part. The therapist set out 8 bowling pins on the floor in a straight line. She asked Tye to walk in and out of the bowling pins, bend down and pick up the pins. That’s all she said. Tye looked at the bowling pins and asked her, “You want me to go in and out of the pins and pick up the pins”. Yes, the therapist states. Tye begins his walk through the pins in and out of the first pin, he bends down without wobbling and picks up the pin, and he continues through each pin and picks up each pin in his arms and holds them in a cradled position. Then he looked at the therapist and asked her what do you want me to do with all the pins. The therapist was shocked and realized that she forgot to tell Tye he was to pick them up and then set them back down on the floor. Tye had not only walked through each pin correctly, he had gathered up the pins just as he was told. Perfect instructions carried out to the end. I remember smiling very big and thinking, you’ll have to do better if you want to keep up with my son, as he is pretty smart.

We all laughed. The therapist grinned saying, “Well Tye, I’m going to have to come up with some harder things for you to do. I can see you are more advanced than what they told me”. Tye was once again gleaming with pride. He was ready for the next task, but the therapy was over for the hour, he had done everything and was still waiting for more. I’ll never forget how funny it was to see the look on the professional’s faces whenever Tye amazed them, Tye was moving forward faster than they had thought in his recovery.

There were still many hurdles in Tye’s recovery. My son was working hard on his rehabilitation exercises. It helped to have therapists guide and support him with fun activities that made him want to go to therapy. Tye looked forward to his therapy time, because each day was different. Oh the physical end to working with all the machines in the gym wasn’t that fun for him, but greatly needed. The staff mixed up the exercises. There were days the staff took Tye outside on walks around the hospital.

Tye’s daily routine of taking his medications as well as putting thickening stuff in his liquids continued. Each day I saw improvement in my son’s health. Our talks continued every night; we went over the day’s events. We talked about a lot of things. The talking seemed to give Tye a peace of mind that was comforting to him.

His brothers continued to visit; his best friend came to see Tye every night after work. He’d only stay a short while, but he made a point of coming every evening. He told Tye he would come every evening to see him and he held to his promise. Tye was very touched about his friend’s commitment. Tye cried a lot and showed overwhelmed emotions. Everyone that came to see Tye couldn’t believe how fast he was recovering, but there still were problems.

Spaghetti Day. It may sound strange but the rehabilitation therapist assigned a spaghetti day for a traumatic brain injured patients. The therapist’s told the patients, “All of you are going to cook a spaghetti dinner for your therapy for the day”. Tye looked at me and I looked at him puzzled. I thought, how could Tye cook a spaghetti dinner, particularly when his left hand just wasn’t working in a normal way. He couldn’t stand or sit for very long, so how was he going to fix a dinner? Only the pros knew. About 8 or 9 people gathered around a large table in the kitchen area. My son sat at a table by himself due to his halo and not wanting to be sitting close to another patient and having them hit his halo. He was very self conscious.

Each patient sat at the table and listened to the therapist talk about the spaghetti dinner exercise. There was a large paper flip tablet on an easel. The therapist asked, “What do you need to make the spaghetti dinner?” Each patient took turns in answering. One person said, ‘spaghetti sauce’, another person stated, and ‘spaghetti noodles’. The therapist asked another question, “What do you add to the spaghetti dinner (as a side dish)?” They all sat there saying nothing, but Tye said, “A salad”.

The meal was being organized by showing the patients supplies needed for starting to make a spaghetti dinner. In steps, the therapist talked about getting the dinner ready. Each patient had a duty. One sat and grated cheese; one was busy spreading butter on French bread. Tye volunteered to set the table. He went all around the large table and the long banquet tables and put each place setting with great intention and care. Everyone received a plastic plate and silverware and a napkin. Tye was asked to help stir the sauce; he added salt and pepper and asked where the sugar was for the sauce. The therapist standing by Tye laughed and said, “You want the sauce sweet?” Tye replied, “We always add sugar to our sauce at home”. I just stood on the side line and watched with a grin. Anything and everything just to make me comfortable.

The dinner was complete and staff asked me to join Tye in the spaghetti dinner. Tye went over and took a hold of a chair; slide it over to his table for me to sit. I sat in the chair to have spaghetti dinner with him. He stood up to get me a package of salad dressing. Everything tasted good and my son was handling everything so great.

Tye once again volunteered to clean up after the meal. He gathered everyone’s plastic plate and placed each one in the trash can. He folded the table cloth and asked where they wanted him to put it. It was quite a site to see, my once bed ridden son that was fighting for his life was now cleaning up after people and doing the task very well.

The day’s activities ended and evenings were long for both of us. I had time to think about new things to occupy the time. Tye wasn’t into watching TV, even though his rancho level had moved forward into the area where he was allowed to do so. About the only thing he even wanted to watch on TV. was the CSI Miami show. After the daily evening visits, Tye and I would walk all over the hospital. We had to tell nurses that we were going down stairs for a walk. Tye was still under the Hippa rules and on medications. They didn’t want him to just walk off.

We began raiding the hospital cafes.

The Heavens Have Eyes, written by: C.Dianne Lieber © 2007

Chapter 17.)

Raiding The Hospital’s Late Night Café.

One evening Tye and I were walking in the halls when a nurse stopped us. She told us about the late night café down stairs. It seemed that every night at 10:00 p.m. the café reopened with fresh food. The local police and fire officers all knew about the late night café. The café was a place to get a fresh hot meal.

Tye and I decided to go try it out. I hadn’t eaten all day. I just wanted a bowl of soup. We walked into a cafeteria-style-café and sure enough all the cooks were serving people hot dishes at 10:00 p.m. at night. I looked at Tye and said, “Get anything you want son”. He went over to ‘the goodie’ section. He focused on a huge chocolate chip cookie. I laughed and said, “Is that all you want?” “No,” he replied. “I think I’ll take a slice of that pizza to.” He was smiling and seemed excited that we were raiding the café late at night. There weren’t any nurses or staff telling him that he couldn’t.

The hospital had a ‘do as you want policy,’ making us feel right at home. So, we did ‘do as we wanted’. We placed the food choices onto a large tray and returned to Tye’s room to enjoy a late night treat. We did this a few times; it was great just to do something different.

Outings.

It had only been less than a week and Tye was to go on his first outing. The therapy staff took patients outside of the hospital setting to different locations for recreational activities. Tye was more than ready for an outing. I recall telling Tye’s brothers about the first outing. They both were in shock, replying, “Are you sure he’s ready for that Mom?” I replied, “The hospital therapists think he is ready.”

Where would he be going for his recreation activity? Bowling! Yep, the staff scheduled a bowling day. Tye was to be gone for two hours. The staff wanted him away from the hospital atmosphere and all the gym equipment. He was to do something different.

There were many patients from the rehabilitation floor. Adding a patient wearing a halo to go bowling was a little different from others injuries. For the two hour time slot, I figured I could get a lot done while my son was off bowling, but then a feeling came over me. At times, mother’s can have a deep inner feeling of uneasiness. I did go and get a few errands done, but then something just told me to go see how things were going at the bowling alley.

Tye’s younger brother wanted to watch him bowl, but couldn’t get off work in time. I pulled up next to the small hospital bus and noticed that the bus door was open. One of the therapists was standing at the door of the bus. I got out of my car and asked, “How’s my boy doing at bowling?” The therapist stated, “Tye is inside the bus.” I wondered why! It had been a good half hour into the bowling outing, so why wasn’t Tye inside bowling with all the other patients?

I stepped up into the bus and saw my son sitting in a seat with his head down drinking a drink. I approached him and said, “Tye have you already bowled and I’ve missed it? I came over to see you bowl son.” He looked at me and said, “I got thirsty and I don’t know Mom.” I sat down in the seat next to Tye and took his hand and said, “Come on son let’s give it another try and this time I’ll be right there with you.” I shared memories of us going bowling and having a good time. I said, “Remember how we use to bowl together?” He said, “Okay, but I have to use a ramp.”

We left the small bus and walked into the building. I could see that the bowling alley had set a time slot for the hospital patients that was separate from the regular crowd. I noticed a silver metal ramp next to where you picked up the bowling balls. Tye walked over to get his ball. He set the ball down on the ramp with the help of the therapist. The ball rolled down the alley into the gutter and into the back area of the bowling pin rack. He bowled a couple of times more. Then he asked if he could bowl without the ramp. The therapist said, “I don’t see why not as long as you pick out a 6 pound bowling ball.”

Tye went through all the bins until he found a 6 pound ball. He walked back to where we were sitting and smiled at the therapist and said, “I found one.” I wasn’t sure about him bowling with a ball and thought, he has a halo on his head, his left shoulder is healing from a broken collarbone and the left back scapula was a concern as well. He walked to the front of the lane and dropped the ball. The ball slowly rolled to the gutter, but he is so excited. He turned around and looked right at the therapist and said, “That felt so good.” The therapist smiled.

Tye returned to where I was sitting and took another sip of his drink. He looked at me and said, “You don’t know how good that felt.” I said, “Yes I do son and you did very well. Do you know why I know it felt so good Tye?” He said, “No why?” I said, “Because you were in control.”“Yep,” he said and I agreed. Then he went on to say, “When I arrived here Mom, it was a cultural shock.” I looked at my grown up son and replied, “Yes, I bet it was for you.” Tye was used to going bowling with his friends and children. He was used to walking all over the bowling alley and going to get food and drinks for his children. Now, he was in an environment with people that had disabilities that were all trying to do the same thing he had always done, but now with restrictions.

We laughed and then Tye wanted me to bowl. I took the ball in hand and said, “Only if you stand right beside me son.” He smiled and we both walked up to the lane together. My Mother instincts were correct. My son was scared and felt uneasy about his outing by himself and I knew it. Just having me there to support him made all the difference in the world. Driving back to the hospital I following the small hospital bus and thought to myself, this was the first outing, what would it take to make my son really get back into the swing of life again? How many more outings will he need to go on before he felt comfortable in a social setting and not experience any form of social anxiety?

Family outings: brothers make dinner for Tye. The outing continued with family passes. All you had to do was tell the nurse you wanted to go on a family outing and you were allowed to leave the hospital atmosphere and do whatever you wanted. Tye’s brothers wanted to make dinner for Tye. So, off we went to the ‘boy’s’ home for a night out. We were scheduled to return at 6:00 p.m. so that Tye could have his Coumadin medication. The evening ran a little longer than we thought for returning to the hospital. Tye said to me (as he was comfortable in resting on his brothers couch) “Aren’t we supposed to be back at 6 Mom?” I said, “Yes we are Tye.”

He said, “Well I don’t want to go back at 6, can’t we call and ask if we can stay longer.” I said, “I don’t see why not.” I then thought to myself, we are going home in a few days. Tye would be returning to somewhat of a normal regiment; therefore, it would have to start now. I thought my son needed to do many things without me being around all the time. I wasn’t going to be able to be right by my son’s side every moment of the day for the rest of his life, as he was a big boy, but yet he still needed help.

I turned and looked right at him and said, “Why don’t you call the nurse’s station and talk to the nurse yourself and ask her if you can stay a little longer?” So, he did. Tye had a hard time holding the telephone receiver. He had even more of a struggle remembering numbers. It took him three times to even get the phone numbers in sequence correctly. All these little things were what I was watching the entire time as his awakening unfolded.

Ice Cream at Grandpa’s Place.

There was a certain place that Tye remembered going to when he lived in the Grand Valley. That special place was an ice cream shop that his Grandpa took him to when he was only 13 years old. Grandpa always said, “They have the best ice” and any time Grandpa wanted a nice chocolate ice cream cone, they were off to the ice cream shop together.

Each outing, whether it was for dinner or lunch, seemed to end with the last stop at the ice cream shop to get a chocolate dipped chocolate ice cream cone. I was amazed at how Tye remembered where the shop was located. He told me where to go by navigating through the streets. His memory was becoming clearer everyday it was returning at lightning speeds.

Discharge Date. Another day went by, and another hour of therapy was needed for Tye. A surprise was about to happen. The manager of the rehabilitation floor walked into Tye’s room. I was making up my cot for the day. The manager looked at me, while holding a few papers in her hand. I commented, “More papers for me to fill out?” She replied, “No” and had a great big smile. She said, “Did they tell you your discharge date yet?” Folding the cover spread over to my cot, I looked up and said, “Discharge date? No, they haven’t.” I looked at her and asked, “When it is about 6 weeks from now?” A shocked look came upon her face and she replied “Oh no, it is on the 14^th”. I said, “Of what month?” She replied looking puzzled, “Of this month.” I stood right up and went over to her where she was holding out the discharge papers that had the date on them and I said, “Oh no, that couldn’t be right.” “Yes. Tye’s doctor and all the therapists had set that date. “Is there something wrong with the date she asked?” I said, “No, but I was told from the other hospital that Tye would be in rehabilitation for 6-8 weeks. We’ve only been here a little over a week.” She didn’t back up, she just said he is passing all his tests and the therapists think he will be ready by next week to be discharged on an out-patient status. He would need outpatient therapy, but he wasn’t requiring ‘inpatient’ any longer.

After she left, I had about 5 minutes to wait for Tye to return from therapy. I went over to the window and looked outside for a few minutes; my mind was going a mile a minute with thoughts. Tye was moving fast, his therapy sessions were going very well. I could see a great change in Tye already. But only two weeks of ‘inpatient’ therapy and we get to go home? I went over to the printed calendar that the speech therapist had taped to the wall. The calendar was there so that Tye could read and look every day at his schedule. I took a red marker and drew a big heart around the number 14. I went to the chair in his room and sat down; I was still in shock.

Tye walked back into the room and lay down on his bed. He was tired from the therapy session. I looked at my son and thought to myself, how will he take this news? I softly said, “Tye do you see anything different about your calendar?” He had to sit up and look at the calendar and then he said, “No what?” Speaking right at him, “Do you see the red heart that is on the calendar?” He replied, “Yea, what’s that for?” I said, “That’s when you get to go home.” He looked at the heart for few seconds and then at me. He said, “You’re kidding, are you joking Mom?” I replied, “No, son I’m not. The head lady just came in and told me. You get to leave this place next week.” “Wow, that’s great!”, he said.

Then without another word of joy, he looked at me and said, “Mom it’s just a few more days, would you please stay right here with me until we go home.” I knew what he meant. He was talking about me staying overnight on the cot, staying next to him, which was reassuring him in his comfort zone again. I said without hesitation, “I hadn’t planned anything differently”. He then added, “Thanks Mom, I love you. You are the only one who has stayed right with me all this time and I needed that.” I replied, “I know son.”

It was hard to go through another week knowing that we were going home on a certain day. Tye wanted to leave the day I told him. We had to wait it out again. The hospital had to have a few days to coordinate everything for another transfer, only this wasn’t a transfer it was a discharge. Sometimes I wondered if my son was ever going to get out of a hospital setting, but as the weeks went by my hope and faith were restored by watching a miracle advance to higher goals.

Having been told the new information, I had work to do. I immediately got on the phone to set up more therapy sessions for Tye on an outpatient status. There were services provided to me back home. Doctor’s appointments had to be made for meeting a new neurosurgeon and other medical practitioners. I was still looking into the mental health services for my son.

Every therapist that I called was helpful in sharing what they could provide regarding continued occupational, physical and speech therapy treatments for Tye. I had the choice of staying with the current doctor’s and medical staff where we were, or to go home and set up new appointments for Tye. Home was a three-hour drive away.

The day of Tye’s discharge was approaching and the staff set up a family meeting on a Friday. We were to go over all of his needed treatment care and discharge information. Tye and I were ready to hear what each staff had to say about his ongoing therapy recovery. Each therapist took their turn in giving treatment goals. They shared notes of his achievements, as well as his weaknesses. The nurse’s had input as well. So did his doctor’s. Every medical helper gave Tye good reports. Each asked me questions too.

During Tye’s journey of recovery, I had the role of his medical proxy. Everyone at a hospital knew that the proxy had the final say about medical treatments for a patient. I was going over all the medical treatments that had been set up for Tye the minute he was discharged. The whole staff was impressed with how I had organized and set up all the appointments on such short notice. I’d just laughed and said, “It’s my job, I’m just the Mom.”

One of the doctor’s asked Tye if he had any questions. I knew Tye had one question. The big one! He wanted to know why the 14^th date had been set, and he wanted to know if it could be changed. The doctor looked at Tye in puzzlement and replied, “Well we just set a date, and it really isn’t anything other than having the staff get all the paper work completed. Why?” the doctor asked. Tye said, “Well I don’t see why we can’t go on the 12^th.” The 14^th was on a Wednesday, the middle of the week and Tye wanted to go home on a Monday. The doctor looked at me and then at Tye and said, “I don’t see why not”.

That’s all it took, the ‘patient’ asked to go home. The patient was in control and that patient was taking his life back. Well, trying to take his life back on a few things, anyway. He still had a long way to go, but Tye was on the road to recovery. None of us knew the outcome of his healing. One thing was still bothering me as a mother; my son’s mind. Yes, he was passing all the physical, occupational and some parts of the speech therapy, but he was far from being healed from the traumatic brain injuries. He was far from getting well in his mind, due to the head traumas – the blows to his head, and he was far from regaining parts of his memory. He would be asking-no demanding answers to his past memories.

Fractured Therapy. It took a few days to get everything set up so that the minute we arrived home I would feel comfortable about my son’s continued health care. It was difficult to deal with holiday schedules at doctors offices. Thanksgiving was approaching and most of the doctors and therapy personnel were off for the week. I couldn’t get Tye into any therapists for five or more days.

Tye still had about a month to go before the halo would be taken off his head. He was to go home with me and recover through his therapy treatments and I still wanted mental health practitioners to help him cope with the horrific accident. I wasn’t sure how he would handle the whole thing, once his mind awoke and he recalled things. I felt it was important for my son to get care to help him down the road. Family or friends just weren’t going to be able to deal with the ongoing up and down journey my son was going to be going through for dealing with his health and trying to find his new life path.

My son had been in a motorcycle accident. It was a horrific accident that had left my son with TBI and the death of his friend. No one was ready to address the onset of pain my son would go through upon him being told about the tragedy. Every friend and family member still had opinions about the whole thing, but no one really knew what happened the night of the accident. No one knows but my son; however, the heavens have eyes.

I prayed that God was still watching over my son, because a miracle had happened for Tye. His journey of recovery had been long. Just about the time I thought his road was paved with fresh asphalt, there would be tiny cracks in the asphalt that put him in danger once again.

My caregiver days were coming to an end. Once my son was well into his therapy treatments, I would be stepping back in caring for him. As a mother, I did what was needed of me. I was operating under severe stress and not forgetting to mention the incompetence’s within the health care system.

Tye put me and many others around him on quite a learning curve. I had achieved many hurdles myself. I tried to master selfcontrol. I was tested on patience. The gift given to Tye by me, (the little stuffed battery operated breathing dog) had quite an affect on both of us. To breathe is showed us that one is alive, whether sleeping or walking tall.

I ‘hope’ my son remembers me being there for him. I was with him every step of the way during the journey back. I did as he wished, and I never left him. He will go on in his life, but I am not very far from him in my heart, mind and soul. I reminded myself that the caregiver role was coming to an end.

The mind wakes up!

The journal writings have come to an end for now. This is the last chapter of 17 stories. One needs to start at the beginning in order to understand how the caregiver learned that the TBI was holding her back from letting go. My story as a caregiver was a heart-wrenching journey that was straight from my heart.

Personal Notes by C. Dianne Lieber © 2007

Seeing Myself In A Rear View Mirror.

Did I go the distance for my children? Yes, some said and beyond. Do all Mother’s go the distance for their child? No, I found this alarmingly true, particularly when my children rock my world.

I was blessed to have four healthy children – all boys! One child was born a month too early and another one was my easiest birth. The third child born was my most painful delivery and the last child born was positioned on a nerve which pinched a nerve in my right leg. For one month, I actually drug my leg. When I delivered the fourth child, I had walking pneumonia.

What is a Mother? There are tons of definitions and one definition told to me included words of ‘a good loving’ mother. The words of ‘a good loving mother’ were a natural feeling for me. “I’m just the Mom” I often said. People asked me how I coped through my son’s journey of healing. My answer is: I choose to heal myself through expressive arts therapy. I wrote in a journal everyday. The writing of feelings and each days events helped me process the traumas that were giving me much stress.

Another person told me about experiencing vicarious stress. People who are exposed to traumatic images, witnessing any shocking, horrific or life threatening events; or even have to hear about the traumas can experience vicarious stress. I was experiencing vicarious stress as a parent and as a caregiver due to my son’s tragic accident.

My healing would go through several stages. My writings continued for seeking some kind of closure. My son’s journey of recovery had taken a toll on my body. I was exhausted, yet, as I helped my son heal it left me with lasting impressions on my heart, mind and soul. Over the years, I have had so many unusual experiences raising four sons, but this past journey will forever be branded on me. A brand sort of a forever imprint upon me that I can never wash away, or burn off.

When I had my doubts about being at the hospital for so long on the daily routine schedule, I was told in response “I would be right by my child if this happened to my child.” Would their words truly be done, really? I have seen mother’s and father’s that didn’t hold their child’s hand through a bad experience. Many parents, when dealing with severe and stressful situations walk away from their children. However, I am not talking about other Mother’s or Father’s here, I am talking about just one, me and how I chose not to walk away from my son.

For me, it will take a long time for my wounds to heal. My stressed physical health that I had to endure. My mind had not slept since the accident. Then there is my fractured spirit, the very essence of who and what I am, which had been shattered. I was painfully hurting; one could call it a broken heart.

My broken heart, wounded spirit and traumatized body had to endure the horrific fractures that modern day super glues just can’t withstand in a permanent hold. Holding me together was walking with faith.

Total strangers told me to ‘get away’ from it all. Completely take myself out of the surroundings from which I had been imprisoned. Other folks called, wrote or spoke about the ways to self heal. The comments were spoken in hoping to find a cure to the pain.

What each person didn’t know, what each may or may not have thought about, was how my inner heart had to heal on my own rhythm at my own planned time. My best statement was to always say, “I’m on cruise control.” I’m a fifty year old woman that has four children, three grandchildren and every day, while I’m still alive, I’m now finally living life at a comfortable speed.

My personal belief, which I think is the true test of things here on earth, is to see if you can figure out for yourself what it is that makes your life journey worthwhile. These could be to do a good thing for someone else, to make someone smile, to lift a person’s heart or to just be in their life for a moment in time. I once said I never had anything spectacular happen to me. I never have had an accident or had broken even one bone. Well, I can see that wasn’t to be, as what was to be shown to me in my life were happenings far more important than a casual conversation of comparing notes about an injury or any personal mishaps.

I have seen three miracles happen right before my eyes; some have called me a hero to an unfortunate accident victim. I have viewed an unexplainable sight that only my eyes were to be shown. No, I have never had the near death experience, never experienced any unknown phenomena’s, but little by little I have come to realize it’s not those experiences as to why I am living life. There are so many other things I’m being shown that make me remain on this planet Earth.

In trying to explain the ripples in my life, the ripples are like standing on a riverbank shore and dropping a pebble or small rock into the shimmering blue waters before you. Waves of circles begin to expand and then they carry out into larger circles as the ripple fades into the vast open unknown.

Dropping the pebble starts the ripple. The impact of one pebble piercing the water starts the ripple effect. It’s like leaving its own mark upon the very thing that started the cycle, that’s a ripple.

To me, life is like a ripple. If you take the time to look at everything you do, say or are trying to become, it is a ripple. You are traveling through ripples from one to the other. Every person you meet can have a ripple effect on you. Every decision you make will have a ripple effect.

I found this out after a two and a half decade marriage that died and yet still every person in my past has had a ripple effect on me in the present. I truly believe we are all put here for different reasons, each having their own role in another rippling experience in their life journey.

Why are certain people put in one place at one time? Simple, the ripple effect begins again. Why does one have a hero “come out of nowhere” to help them and then never to be seen again? You don’t realize how you touch another’s life until one touches yours.

The time spent helping my son walk through his journey of healing seems like now an eternity past, but really it is like moments in a span of things that traveled by me. When you look back in time, having memories, you are looking in the rear view mirror at the many ripples. It’s like looking back and seeing a mirage that is overflowing with rippling effects.

So, my ripples are fading with each struggle that I have endured. My lessons that I learned came from each ripple, while caring for the very one person that is the center to all things, my son.

At mid life, I am still learning patience. By helping my son heal, I slowly but surely have gained the strength to heal my pain within myself. I have been traveling on a long journey of suffering. My journey included a walk in self discovery that pulled every heartstring.

The “Dark of the Moon” is about learning to go the distance in life. My son still rocks my world. He like me will continue to find ways to heal the wounded soul.