All Rainbows and Unicorns

My Superheroes story was written in Fall of 2007. It has now been four and half years since my dad's stroke. I wish I could tell you that life is all rainbows and unicorns but that simply isn't true. There are bad days and good days. I would like to be all inspiring and tell you that we have found a way to rise above it all but that fact is we are human. We haven't risen above it. We may put on a happy face but it just masks the pain.

I am constantly asked how my dad is and how my family is handling it. While I truly appreciate those who genuinely care, I have to tell you that I hate that question. How am I supposed to answer that question? He isn't dying but he isn't great either. How do you explain to someone that my dad had to learn to walk again, and learn to live with the use of only one hand while the other just hangs from the shoulder, and his ability for driving has been limited? He can no longer play the guitar, go backpacking by himself, or have normal cognitive reasoning like the rest of us have. The things he once loved to do, have now become challenges. He is no longer the person he wishes he was. I can see it in his eyes how badly he wishes he could go back five years.

Sometimes when people have asked me that question I have actually answered "he's alive." I know how lucky I am that he is alive when he could have died. I try to tell myself each day that I should appreciate what I have while others have lost or are losing their loved ones. I know that there are people out there who are in worse situations than the one I am in. However, this does not console me. I really try and then when I get upset or down on myself, I just feel guilty about how ungrateful I am being. But frankly, I am just so angry.

My father's stroke has affected me on so many levels that I can't begin to delve into the specifics. I ask myself and "God" why this happened all the time. Is there some important lesson that I am supposed to learn? If there is, I haven't found it yet. Someone recently told that God doesn't let things happen to people who can't handle them. I think that is some one's way of making them feel better about what comes their way. Honestly, I don't know how much more I can bend before I break. But if what this person says is true, God has a lot more faith in me than I do in myself and in him.

Despite all the anger and sadness, I keep on keeping on. I wake up each morning and take on the day. I love my family so much and I am so thankful for having them. I try to look at the positive and appreciate the improvements and the accomplishments that my dad makes. And although today may not be all rainbows and unicorns, I try to remind myself that tomorrow will be.

Conclusion to only the Beginning

I wrote this story for a class in fall of 2007. I thought after a year of not posting, that I should finish the story. It has been 4 years since my dad's stroke so I thought now would be a good time to move forward and tell you what has been happening since this story ended.

Stay Tuned...

Now back to the story

My dad had finally progressed to a point where he could go up and down the stairs. In the beginning, he always had to have someone watching him. When he would go down the stairs, he would have to go down facing backwards. Since my dad was still paralyzed in the left arm, we had to put a railing on the right wall also, since the railing we had was on his left side.

One day my boyfriend(now my husband) and I were hanging out at my house. My dad was upstairs hanging out and my mom was cleaning. My dad decided that he wanted to go downstairs. My mom was busy and had asked us to help him down the stairs. I asked my boyfriend to watch from behind and I would watch from the front. I figured that if I were to watch from the back and he were to fall, I would go down with him. It was image that I didn’t find appealing. I watched my dad has he gripped the railing firmly with his right hand. He would slowly swing his left leg out and backward and then would lower his left leg down onto the next step. His right leg was obviously moving more smoothly than the left leg. My eyes became filled with tears. I was happy that my dad was getting his life back, but I assumed the first time I was helping someone walk up the stairs for the first time, that someone would be my child. I couldn’t get the image of my dad in his hiking boots, wearing his cowboy hat with his backpack strapped on out of my mind. This man could hike for miles, and now he is struggling to go down the stairs. It was a slap in the face. Last year my dad made a comment that he wanted to get all the backpacking in he could because he thought it might be his last year to go. I thought that he was silly for making that comment. How could someone with his determination and physical stamina not go up in the mountains for at least five more years to come? Maybe in the back of his mind he knew there would be a reason why he wouldn’t go this year.

I considered my dad’s stroke to be a cruel joke that someone was playing. He couldn’t go hiking, fishing, bowling, or even play the guitar. All of which are his favorite things. If his family were to be taken away, he would be completely stripped of the things he loved. Despite the outcome, I have yet to hear him complain or put himself down. He has never told me that he would never be able to do something. We already have plans to go camping next summer. He even speaks about when he will be able to play the guitar again.

Although his determination has been beneficial in his recovery, it has also been a hazard. One day my mom caught my dad trying to climb a ladder by himself. Another time when I was over at my parents, my dad had tried to turn on the gas fire place. My mom was cooking breakfast so we were all upstairs eating. When my dad was done eating he went downstairs. When he made it down the stairs he told us he could smell gas.  Within taking two steps down the stairs, I was overwhelmed with the smell of gas. My mom ran downstairs and turned off the gas. I opened every window and door in the house to air the gas out. It was so bad they were afraid to turn on a light in fear that it would cause a spark and blow up. To make matters worse, it was cold and raining. So while we were trying to air out the house, we were freezing our asses off. Luckily since then, he has been making better decisions. 

My dad’s condition is slowly improving but at least it is improving. The next obstacle we are all facing is a financial one. Since we have been home, the medical transport company has been trying to charge us sixteen-thousand dollars. That is double the amount they told us we would have to pay. If we didn’t have eight-thousand dollars then, how in the hell would we come with eight-thousand more. Then another company threatened to send us to collections because we didn’t pay the bill. My mom explained to them that we never received the bill. When she asked where they were sending the bill, it turned out they had mailed the check to our insurance company. Why the insurance company didn’t forward the bill to us, I have no idea. Since we had not paid the bill they wanted to charge us seventeen-hundred dollars. My mom was so frustrated with what she was hearing that she yelled at the company for how they were handling the situation. As a result, they arranged for her to only pay the original five-hundred dollars. With my dad out of work and my mom having retired in March, money was tight. Both my brother and I ended up having to get additional loans for school. I even had to get more financial aid from school to help out with the rest of my tuition.

Seven months have past since my dad has had his stroke. It feels like a year has gone by. Where we will be in year is unpredictable and it feels like it will be a lifetime before life is back to normal.

The truth of the matter is there are no superheroes, just people. And villains can come in any form-- even a stroke. No one lives forever and everyone can feel pain. People can sense it, people can feel it.  We want to believe nothing bad will happen to our parents and that they will live forever. But even though parents aren’t superheroes, they are still heroes. They show us who we want to be and who we don’t want to be. They help us overcome our weaknesses to find our strengths. They may not live forever, but my “super” heroes will live on in me.

 

Adjusting

For as long as I can remember my dad was strong and could do anything. I always felt that nothing would ever happen to him, and he would live forever. Now that he was home, it was like he had regressed to a child. This is a perception that children rarely see of their parents.


He needed help with all the basics like changing and eating etc.. I am not so used to seeing him so vulnerable. For safety reasons, my mom bought baby monitors to put in the family room just in case he needed us in the middle of the night.

For the first few weeks we always had to make sure someone was home with him because it was too risky leaving him by himself. However, one day we made an exception. My mom and I had to drop off the car at the mechanic. My brother was at work so he wasn’t available to stay home. We told my dad that we would be back in fifteen minutes since the mechanic was located nearby. My mom specifically told him not to get out of the chair and to wait until we got home.

Fifteen minutes later we were back home. We walked into the house and my dog greeted us with his usual hyper self. I can’t remember who walked into the room first, but I remember seeing my dad on the floor in front of the laundry room. I could feel the anxiety immediately. My mom and I quickly picked him up and off of the floor. My mom scolded my dad. I couldn’t help but wonder if this is how it would be forever. Thankfully that was his last fall. However, he scared himself enough that he would walk around with a helmet wherever he would go. Half the time he would not even buckle it on so I would not even see the point of him wearing it. My mom would tell me that he would use it for confidence so I shouldn’t make fun of him. I figured I wouldn’t say anything because I wasn’t the one going out in public with him.

Rehabilitation

By the time he had arrived at Health South, he had begun to regain movement and feeling in his left leg. With this improvement they were going to work on teaching him to walk again. Even with the new movement in his legs, he was still going to have to rely on a wheel chair for awhile.


Every so often they were going to allow home visits. We had made changes to our house so that he could stay in the basement, which was accessible by our garage, so he would not have to rely on going upstairs. By the end of May and the beginning of June we had finished remodeling our upstairs. My dad wanted to see the finished upstairs but he still could not go up the stairs. My spilt-level home was located on a hill. If a person were to enter the house from the front, there would be two sets of stairs; one going up and one going down. However, if a person were to enter from the backyard, they would upstairs. So to get my dad upstairs, we had to wheel him into our backyard and take him through the back door. To take him through the back door we had to lift him up two steep stairs. We did not have a board sturdy enough to make a ramp. Once he was done looking at our new living room, we took him out the same way we brought him in.

It was the first time in my life where we all had to take care of my dad. When I was little, he would carry me to bed. When we were in the mountains, and I would think we were lost, he would lead the way. I had to do everything to keep myself from crying. This was not my dad and this is not who he wanted to be.

A couple weeks went by and my dad’s walking improved. He moved on from a walker to a cane that he still uses today. Health South was ready to release my dad home. My dad would still have therapy but it would all be done from our house.

I was relieved to have him in the house again. Due to his physical condition he would still not be able to go up and down the stairs for awhile. My dad normally would spend most of his time downstairs watching TV or working in his office anyway. Since we knew this would be where he would be most comfortable, we made a place in the family room for a twin size bed for him. We set a lamp at the top of his bed and hooked it up to a push button hanging on the wall. That way he could turn on and off the light without having to find his way in the dark. Any type of fall could seriously agitate his condition.

Back in Utah

We were looking forward to taking my dad to the University of Utah hospital because we felt that it was a more reputable hospital. However, my dad’s arrival was disappointing. When my dad had arrived to the hospital, they did not even hook him up to medical devices for three hours. My mom was irate. He still needed be monitored because of the blood that was still in his brain. He was still within the period where he could have another stroke. The clot in his brain still needed to be shrunk and the other part of the clot was still in his neck. In addition to that, a pipe had broke in my dad’s room and the room was flooded. The floors were still damp and the room was humid. My mom requested a room change and they denied her request. My mom finally had to go to the administration office before they would take care of my dad, something they forgot about in their job description. It took her threatening to sue to motivate them toward some sort of positive action.

After three days in the hospital he was being released to Health South Rehabilitation center. The convenience of this was that he would be no more than five minutes away. At this hospital he would have speech therapy, physical therapy and occupational theory.

Preparing to Come Home

The next couple of days were tough. My mom and I realized we only packed enough clothes for two days and we were going to be in Denver longer than that. My dad was still on another planet. He told me that when we were to go home that week that he was going to go backpacking in the mountains the next weekend. He would also repeatedly refer to my mom as “chuckles.” She finally told him that if he called her as “chuckles” one more time, that she would smack him. He had never called her that before and now he doesn’t even remember calling her by that name. Then when my uncle arrived he ended up sharing a room with us. It was the first time since I was five that I had to share a queen-sized bed with my mom. Not particularly the most comfortable situation. We felt bad for my uncle, so we didn’t feel comfortable telling him he couldn’t share a room with us.

The C.C.U. was not the most comfortable for visitors. In my dad’s room there were only two stiff chairs. The hospital does not want the C.C.U. unit too overwhelmed by visitors, but they should make it comfortable enough for who need to be there. There were only three of us there. Yet only two could be in the room at a time. They were strict about this. No reasoning made sense to me at this time. We were from out-of-state and one of us sitting in the waiting room by ourselves seemed unfair considering the circumstances. They didn’t care of course.

The bleeding finally stopped in my dad’s brain and we were ready to go home. Our goal was to fly my dad to Salt Lake City to the University of Utah hospital. My dad’s doctor in Colorado said they either needed to arrange for my dad to go to Utah, or they would keep him in rehab for about a month before sending him back. My mom looked at the options and felt staying in Denver would be too expensive. We tried to arrange with a social worker to get a medical transport home. It seemed the social worker did everything but help. My mom took it into her own hands. She called a friend in Salt Lake and we began working with a company to fly home. About after a day we were quoted eight thousand dollars for the flight home. When my mom told me the cost I could feel my stomach sink down to my feet. I couldn’t figure out where in hell we would come up with the money. As convenient as is would have been to have the money available in case of emergency, I knew we didn’t have it. I knew this was going to be overwhelming for my mom. I made sure, if need be, that I had money on my credit card for her to use. We had to come up with half down before they would transport him back to Salt Lake City.

Since the social worker was absolutely no help, my mom had contacted a friend who put us in touch with a company that would transport my dad. I think the hospital wanted to keep my dad in the hospital due to the experimental procedure done on him.

We made the final arrangements for my dad. My mom was going to fly with my dad. I had the option to fly back by myself on a commercial flight or drive back with my uncle. By the fifth day of being with him and hearing his two cents on everything, I opted out for the ten-hour drive home with him. That is saying a lot considering I am afraid to fly and this would be the first time I would fly by myself. Thank god for the forty-minute flight.

Super Heroes Continued...

A couple hours later we received a phone call from my dad’s friend Dave who was at Lake Powell with him at the time of the stroke. The past few days that they had been in Lake Powell they had experienced horrible weather. It was so bad that they had to dock at a beach in a canyon for two days. On the day of my dad’s stroke, my dad’s friend Frank ended up taking a friend to the clinic at Lake Powell. They took the speed boat they had with them and made their way to the marina despite the fact it was dangerous. That morning my dad had woken up and went to use the restroom. It was at this time my dad had his stroke and collapsed. Dave and Lee, another friend, could hear my dad and found him on the bathroom floor. They picked him up and moved him to a near by bed. With the weather being so bad, and the speed boat gone, all they could do was radio for help. In the meantime, Frank was waiting at the clinic. As he was waiting he could hear Lee over the radio that was in the clinic. He heard that my dad had a stroke and that he needed to be flown to a hospital. It was at this time when Frank contacted my mom.

On that same day we received another informative phone; this time from my uncle. He called to tell us that he was on his way to Denver to come see my dad. After he spoke with my mom, he asked to speak with my dad. Due to my dad being hearing impaired, he cannot hear on cell phones. So my mom put the cell on speaker phone. My dad began to talk to my uncle. My uncle told him that he was on his way. My dad, still not understanding the severity of the situation, told my uncle that he would see him soon. My uncle told my dad that he loved him. As he told my dad this he began to cry, followed by my mom, ending with me. At this point I got up and left the room. I didn’t want to cry, least of all in front of people.

On my second full day in Denver, my uncle finally arrived. I was alone with my dad and my uncle in the hospital room, but it was as if it were just me and my uncle. My uncle begins to explain to me he had the week off for a vacation in Oregon. I felt bad because instead of being on his vacation, he was here. But my dad's stroke wasn't really why he didn't go to Oregon. The day before my dad had his stroke, my uncle's wife explained to him that she wanted a divorce. As if I did not have enough on my mind, I had to deal with my uncle's instable life. He also tells me that I am the first person he has told since it has happened. Within twenty four hours of his wife asking for a divorce he finds out his brother has had a stroke. He might as well have walked onto the highway in front of a full speed bus. It became awkward for me, I felt stuck, and I didn’t know what to say. Thankfully my mom and a nurse walked in. This gave me a moment to slide out.