Feeling Lucky

I appreciate Christine Scott sharing her story over the past five weeks of growing up with her mentally disabled sister and the challenges they faced as a family. It’s been insightful and very helpful for me while Mark has been recovering from his second total hip replacement.

We’ve been at the rehab center for the past seven weeks and we’re looking forward to returning home on Saturday. This second battle of recovery has been easier and harder. Easier because we knew what to expect and Mark was in better physical condition to start with.  Harder because we knew what lay ahead of us and right from the start we were still tired from the first surgery.

We were tempted to wait awhile until our vivid memory of the surgery and rehab had dimmed. We moved forward with the original plan because we were anxious to get it behind us and we didn’t want the therapists who worked with Mark on the first recovery to forget what they’d learned about him the first go around. We saw more pros than cons in doing it sooner rather than later, which meant there were six months in between the left and right hip surgeries.

It was a good decision. We’re glad to have it behind us and fortunate to have the same therapists. Their previous experience working with Mark and knowing his physical limitations and capabilities have proven to be beneficial. We’re leaving the rehab center after 52 days rather than the 60 days it took with the first rehabilitation.

Mark in therapy

Physical Therapist, Brandi

We’re happy with his progress and the new range and mobility he now has with both hips done. Last August, I wrote an article, A Man with True Grit, which is my favorite way to describe Mark. He reconfirms his grit daily as he works hard through painful therapy. Since I’ve watched and encouraged Mark through rehabilitation for nearly twenty-five years, the pain is both heartbreaking and tiresome. It’s easy to wonder why it has to be so hard.

Sam & Mark with their crazy hair hats

One of the benefits of being in a care facility is that we are surrounded by people with similar struggles. Most of the patients here are overcoming a knee, hip or shoulder replacement. A few have a more serious struggle like cancer or a stroke. As I get to know each patient, my heart goes out to them and I rejoice in their progress conquering their individual health challenges. We’re encircled by people with true grit and a few of them are still here from our first stay and feel like family now.

Mark wasn’t the perfect candidate for total hip replacements and we were told it would be a tough recovery for him. He had several tests to determine whether it was even a possibility. Every test revealed a new problem such as severe degenerative disc disease, osteoporosis and scoliosis of the spine. The results were discouraging and overwhelming. The bone density test revealed he was a high risk for a break.

The orthopedic surgeon gave Mark only a 50% chance of the surgery being successful. Mark replied, “I’ve beaten lesser odds,” and wanted to go through with the surgeries despite the risks. Mark’s continuing optimism and determination for betterment is one of the reasons why I love and support him so much. He’s taught me you don’t have to be a cowboy to be a man with true grit.

If you’re old enough, you may remember one of my favorite John Wayne movies made in the 1969, True Grit. The fearless, U.S. Marshal, Rooster Cogburn, was hired by a determined young girl, Mattie Ross, to find the man who murdered her father and fled with the family savings. Rooster was cantankerous and drank too much, but his shooting ability was flawless. He was known as a man with true grit.

The scene that runs through my head as Mark valiantly works in therapy is the one where Rooster rides his horse into an open area and faces alone the gang of four outlaws he’s been tracking down for days.

One of the outlaws shouts, “What’s your intention Rooster? Do you think one against four is a dog-fall?”

Rooster hollers back with sincere determination.“I mean to kill you in one minute or see you hang in Fort Smith at Judge Barker’s convenience. Which one will it be?”

The gang unwilling to surrender to this one-eyed, pot-bellied marshal moves forward on horseback.

Rooster puts the horse’s bridle reins in his mouth, drawing his rifle in one hand and his shotgun in the other as he charges towards the four men, shooting with both guns.

Despite the unlikely odds and with one heart-stopping mishap, he does take all four gangsters down.

This comparison may seem a bit uncouth and a little irreverent, but it’s what goes through my mind as I watch Mark courageously combat rehab. He boldly confronts each challenge with every ability he has. He fearlessly fights for improvement and gives little thought to it taking him down. He may ride on top of a different kind of saddle, but he is indeed a man with true grit. However, I must add he’s much better looking than Rooster Cogburn and his language, manners and conduct are much nicer too.

Right now I’m surrounded not by cowboys, but warriors with true grit and I’m particularly fond of the one I’m married to. Just like Rooster, Mark has come out the winner thanks to his surgeon, Dr. Rasmussen and his staff, along with the great therapists at Rocky Mountain Care Center. The fight isn’t over yet, but the end of this ride is near and that’s why I’m feeling lucky. A bright rainbow is in sight!

How to Recognize Angels

In Laura’s Story, Part 5, by Christine Scott, she remembers the angels in their lives who came to their aid after the death of her father. We often think of angels as beautiful beings with wings, but Christine was referring to family, friends and even strangers who helped them through a difficult time. A friend of her father sold equipment and hang gliders and put collection jars around town to raise money for their family. An aunt single-handedly packed up their belongings to help with the move and grandparents who welcomed them to live in their home.

These were angels who walked among them on earth—real people with mortal bodies. These wonderful people seemed to be sent from above and knew just what was needed at the moment. How can we recognize the angels in our lives? The answer is simple: acknowledge the kindness and help given to you. Those people who have made a positive impact in your life. I’ve been thinking about it and have listed a few.

• Our biggest angels are parents. They brought you into the world and most of them sacrificed time and money for your care and well-being. They spent sleepless nights when you were sick or out too late. They were your advocates in sports, music and/or drama. They were your cheerleaders in school and other activities.
• Our littlest angels are children. They are pure and wise beyond their years. Their innocence and curiosity gives us a new and delightful outlook on things which are often taken for granted.
• Friends who are honest and loyal and lift you up when you’re feeling down.
• Teachers who taught you how to read, write and do arithmetic. Most have angelic patience and without their help, you wouldn’t be able to read this right now.
• Doctors and nurses who attend to your medical needs and help you feel better.
• Therapists who help you overcome hardships and improve your abilities with their knowledge and encouragement.

We can all be angels by lending a helping hand. As we appreciate and recognize the good in others, more angels become apparent.  When I think of the angels in my life, I realize they all have at least two things in common. First of all they are thoughtful and caring and second, they don’t always seem like angels. But how can they? They are people with mortal bodies and not perfected yet.

It reminds me of a “standing joke” Mark and I have. When I help him stand up I often say, “Look up at my halo,” to encourage him upward. To that he replies, “Oh there it is, resting on top of your horns.”

It’s true, sometimes I’m sweet and sometimes I’m not. However, by recognizing and appreciating the helpfulness in others, it usually triggers more kindness.

Who are the angels in your life and why?

There’s No Place Like Home

Image credit: http://www.sundanceresort.com/summer/

Nestled in the gorgeous Wasatch Mountain range is the beautiful Sundance resort. For the past several years my brother Steve has pampered us along with our parents and other siblings to a delicious dinner and outdoor theater tickets. Just a few days before Mark’s surgery in July, we found peace and entertainment surrounded by the huge pine trees as we enjoyed the Wizard of Oz. The storyline and music were perfect timing for the turmoil ahead. A few tears streamed down my face as Dorothy sang, Somewhere Over the Rainbow. The promise of blue skies, dreams coming true and troubles melting like lemon drops gave me hope for a brighter future. I’ve reflected on the story often through Mark’s recovery.

Image credit: http://www.sundanceresort.com/summer/

In the classic story written 77 years ago, of Dorothy and her dog, Toto, being caught in a tornado’s path which took them to the magical Land of Oz where life is strange, but beautiful. Wishing to return home, she is helped by the Good Witch of the North, but in trouble with the Wicked Witch of the West. She follows the yellow brick road to Emerald City where the great wizard lives in hopes he can take her back to a familiar way of life with the people she loves. In her travels she meets a scarecrow who wants a brain, a tin man who yearns for a heart and a cowardly lion who desperately needs courage. They all hope the Wizard of Oz will help them before the Wicked Witch of the West catches up with them. There are many twists and turns in their journey to meet the wizard who everyone says can help Dorothy return home and grant her new friends their wishes for a brain, heart and courage.

It’s common to hear in the halls of a rehab center, “I want to go home.” I’m quite sure it is the sentiment of most patients and the motivation for everyone who works hard in therapy. Some landed in rehab after surgery, while other storms such as a stroke, illness or loss of limb brought them there. All have left the comfort of their home in an effort to improve or save their health. The physical condition cyclone has taken each of them to a life that’s strange and unfamiliar. It’s made beautiful by a caring environment and other patients who understand the pain and share the goal of recovery. Wishing to return home, each is helped by good doctors, nurses, aides and therapists. The patients follow their advice like Dorothy followed the yellow brick road in hopes to get the help they need to return home. In real life there’s no Wizard of Oz who can magically get you home with all your goals achieved. Instead it takes persistent and painful work. Just as the scarecrow, tin man and lion found out, most patients learn from the journey they have within them what it takes to obtain their desire.

Dorothy was right, there’s no place like home and on Friday we were finally able to return. There is nothing more restful than sleeping in my own bed. However, I appreciate wonderful places like Rocky Mountain Care when we’re not capable or safe to be home. I’m filled with gratitude for therapists who work a bit of magic with their knowledge, and a caring staff that is all heart. I value the friendships we made there and am motivated by their life stories and courage. The environment there is very different from home, but it’s made beautiful as people improve and friendships form.

It’s hard to say goodbye to people we may never see again, who have inspired us in our lowest hours and have been with us daily in the pain and success of recovery. We return home changed by our experience and blessed by many people’s influence.

I am grateful to Steve for a wonderful annual summer tradition and for this years play which reminded me that Somewhere Over the Rainbow, skies truly are blue.

Current Situation

I’d be willing to bet every caregiver has had to make a difficult decision concerning their loved one’s health and it’s hard to give thanks for all of it. For the past several months we’ve been struggling with what to do about Mark’s hip pain and the lack of movement in them, which makes every transfer tough. Because he can’t bend his hips at 90 degrees, his sitting posture is poor, causing spine and neck issues. We finally concluded that the situation isn’t going to get better on its own and without a total hip replacement his general health will decline. With his osteoporosis bone loss he has a risk of a hip fracture, which is why this decision for a total hip replacement has been difficult. Also, his muscles need to be strong enough to hold the hip replacement in place, which is an additional risk. When we weighed the risks against the probability of decline in his movement if we don’t go forward with the surgery, the scale tipped slightly in favor. Therefore, next month Mark is scheduled to have his right hip replacement done and in October he will have the left hip done. He will have a three day hospital stay and three weeks in a rehab center. This year will have major medical expenses, but we can give thanks to a skilled orthopedic surgeon, nurses and therapist who we put our trust in for his care. I’m sure there will be more lessons to be learned from this journey. I hope we will be a quick study.

Closer to Home

by Katie, May 1991. One month after her 7th birthday. A picture of Katie and Christopher. Our cat, Spook in a picture on the wall. She expressed her biggest fear, “I hope you will remember us.”

Mark’s neurologist explained that it’s difficult for any physician to predict the outcome of traumatic brain injury. Along with family members, they have to “wait and see” how the patient progresses. They encouraged me to bring Mark’s favorite music and surround him with familiar people and things.  After meeting each one of the therapists assigned to work with Mark, Mom drove me home.  What a huge difference it made having him only 2.3 miles away. What used to be an hour drive to see Mark now took five minutes. This relieved the pressure of feeling like someone needed to be at the hospital at all times. Knowing I could get there quickly in an emergency lightened the stress. My dad, brothers and brother-in-law would no longer need to take turns spending the night at the hospital. I will be forever grateful for the weeks they did so.

May 1991, Christopher’s drawing of the swing set Mark built for the kids

I picked up the kids from the neighbor’s house and they gathered pictures they had drawn and colored for their Dad over the past seven weeks with get well notes to him. They were excited to decorate his room with them. Christopher put his prized pinewood derby car in a bag, along with the first place trophy he had won the week before. I packed up some family pictures, clothes and dinner for us to eat in Mark’s new hospital room. We were all anxious to be together again as a family and we went there with the intention of making Mark’s hospital room feel like a second home. Our excitement made the memory of their fearful first visit disappear.

At the hospital, the kids helped me tape their pictures on the salmon colored walls and closet door right in front of Mark’s bed. I put framed school pictures of the kids and some family pictures on the shelves above the drawers. We hoped these pictures would be the first thing Mark would see when he opened his eyes. While I placed underwear and socks in the drawers, I encouraged the kids to read to their Dad, which was the nightly routine before the accident. I hung a few pullover shirts and sweat pants in the closet before taking a seat in the room. There was a small, round table with only two chairs in the room. I asked  the nurse if I could bring in one more chair from the recreation room so we could each have one. The three of us sat around the table and we ate our first meal by Mark’s bedside. It felt so good to all be together again and the kids seemed to be happy to see their dad. Christopher pulled the pinewood derby car and trophy from the bag and set it on the night stand next to his dad’s hospital bed. A touch of home was now in the room. We knelt by his bed and said our prayers with him before leaving the hospital. This became our nightly routine which enabled me to sleep better than I had in the previous seven weeks. Having Mark so close to home was indeed a big blessing.

Struggling to understand this complicated condition, I made sure I was at the hospital every morning for Mark’s therapies. On my way, I would drop the kids off at the neighbor’s home or my parents would take them to their home or their cousin’s home to play for the day. Before dinner, I would pick up the kids from wherever they spent the day and we’d take dinner up to the hospital. After our meal together, the kids would play with the other children in the hospital playroom; some of them were patients while a few were visitors. They enjoyed playing and helping the children. The nurses and aides were friendly and caring in helping our children adjust to our new situation. They helped the kids become comfortable in the hospital setting, encouraging them to sit in the wheelchairs and learn to maneuver them.

The uncertainty of Mark’s health condition was frightening. Each family member and friend dealt with this crisis in his or her own way. Being responsible for Mark’s well-being,  I felt an urgency to learn everything about his condition so I could make wise choices in his behalf. All the stress and worry made it difficult for me to concentrate and remember explanations given to me. Keeping a journal of events, feelings, concerns, and questions became my way of coping. Overwhelmed, I felt the need to write down my questions and the answers I received from therapists, doctors and nurses. Some of the staff were fine seeing me doing this, while it made others feel guarded and suspicious of my motives. I was constantly taking notes because I didn’t want to forget what I was told and it helped me understand and stay focused on what I felt was most urgent at the time. I was aware of each staff member’s concern, but I just focused on the most critical ones at a time. I believed Mark would come out of his coma once his other injuries and infections healed, but for his therapists, the coma was the most concerning.

After three weeks of the powerful intravenous medication, Amphotericin B, Mark’s red and white cell counts were in the normal range and it was another victory to complete this treatment. The next focus for improvement was weaning Mark off the ventilator. The respiratory therapist came three times daily. I asked and kept record of his respiratory rate and the breaths Mark initiated on his own. I was encouraged every time the preset pressure value was turned down. After one week of weaning him off of the ventilator, the tracheotomy tube was downsized and a smaller tube was inserted. The smaller size allowed for the stoma site to shrink. The next step towards removing the tracheotomy was to plug it. The purpose of this cork was to insure that he was able to clear his own airway effectively without the need for suctioning. After a couple of days without any complications, the doctor ordered the trach tube to be removed. Glorious news, but I was taken by surprise when they pulled the tube out right there in his hospital room and then covered it with dressing and taped it in place. I was unprepared for the gasping, high-pitched sound he made and I panicked. It was hard to watch him struggle. The respiratory therapist kept a close eye on him and tried to reassure me the hole would close up on its own quickly. Since I had no previous experience with this, I doubted him. It was the first night since Mark had been at Western Rehab that I didn’t dare take the kids to see him nor did I want to leave him. Thankfully, Mom and Dad were able to keep the kids overnight and within twenty-four hours, Mark was breathing more easily all on his own.

Conflicting Viewpoints

With my collarbone healed and my right arm free from the sling, I started writing daily notes about Mark’s progress. I recorded his red and white cell counts, temperature, heart rate and respiratory pressure support. I did this so I could recognize the improvements no matter how small they might be. It helped me stay focused on just parts of the recovery instead of thinking about everything Mark needed to overcome.

Mark’s white cell count was high and since the increase indicates an infection, they did a body scan. Mark’s liver was abnormal. With his weakened immune system, they treated the liver infection aggressively with a powerful intravenous anti-biotic because they were worried the infection would spread quickly to other organs, causing death. Within a week his white cell count went from 50,000 down to 11,000, which was an answer to our prayers. He was schedule be on this medication for two weeks with the goal range of 5,000 –10,000. In my mind he had almost reached the elevated end of the goal range.

With high blood sugar levels, Mark was now on insulin and with a large blood clot in his right leg, he was getting heparin. He was now in a floatation bed to help with the blood clot problem. There were so many health concerns that at times I thought I’d lose my mind from the anxiety. I found it helpful to write down the worries and the normal or goal range for his white and red cell counts, heart rate, temperature and the respiratory pressure support. I tracked the numbers daily. I recorded when they did a test and then the test results. Gathering all the information I could helped me understand the process and what was happening with Mark’s body. I recognized and celebrated every little miracle that happened.

Mark’s low red cell count was a cause for concern because it could indicate internal bleeding, bone marrow failure or kidney disease. Within this same week his red cell count increased from 3.3 to 3.8 million with the goal range of 4.0-4.5. I saw the numbers as a great improvement.

I also noted on one day I saw Mark move his finger, on another he held his head up slightly to cough and another time he yawn. I rejoiced in every movement and recorded them in my journal. Unfortunately, Mark wouldn’t do these things when the doctors, nurses or therapist were there so my joy had no merit by their standards.

Without meaning to, I annoyed the doctors and nurses with my records and positive notations. It became a daily routine when the doctor walked into Mark’s room with the hospital records and stated, “No change.” I would then read from my records and report what I had witnessed. The doctor then left the room as frustrated with me as I was with him. We definitely did not see Mark’s progress in the same way. He never specifically said, but it was written all over the doctors face, who was I? A young 32 year-old spouse, uneducated in neurology, who had the audacity to question and challenge his words. I was truly grateful for his knowledge and skills which saved my husband’s life, but I didn’t appreciate his bedside manners. My observations were not taken seriously. The doctor was the medical professional, reading and understanding what the results of many tests were telling him. However, I knew Mark and was the one spending many hours with him day in and day out. I felt his spirit and knew he felt mine. It was so frustrating that what I witnessed had no value with the professional caregivers. I wanted us to be on the same team, working together in Mark’s behalf, but instead it felt like we were on opposing teams. There were a few days I was tempted to throw my shoe at the doctor as he walked out the door. Equally frustrated at me, I’m sure he was tempted to stitch my lips together.

The day after my 32^nd birthday, they did a Brain stem Auditory Evoked Response (BAER) test which measures how the brain processes the sounds you hear. The BAER test records brainwaves in response to clicks or other audio tones that are played. The test can help to diagnose hearing loss and nervous system disorders in people who are not able to participate in a standard hearing test. While Mark was lying in bed, a technician placed small electrodes (sticky patches with wires attached) on Mark’s scalp and earlobes. The electrodes were connected to a machine which recorded his brain activity while he heard a series of clicks and tones played through earphones.

I was elated as I watched his brainwaves being recorded in black on the continuously fed white sheets of paper. He was reacting to the noise he heard, which confirmed my belief that he could hear and his brain was processing it. My spirit jumped for joy with each spike his brain activity made every time he heard one of the clicking sounds or other tones. The printout of the test results was something tangible which showed the spikes. I didn’t know what a normal or abnormal test looked like, but the report appeared wonderful to me. I was excited to hear what the doctor would say. I was positive it would be good news.

The next day the doctor told me that the test indicated significant damage to the brain stem, which is responsible for breathing, sleep patterns, hunger and thirst, blood pressure, heart rhythms, and body temperature. It regulates the central nervous system. “Mark has bruising and injury throughout all parts of his brain, but the most severe damage is to the brain stem. When you go to sleep, it’s the part that wakes you up. With the amount of damage he has, I don’t expect he can ever wake up.”

A chill ran up my spine while a flashback flooded my mind. After I gave birth to Katie, I hemorrhaged and had to have an emergency surgery. When I was coming out of my sedated state, I heard doctors talking about all the blood I had lost. I felt one of them pull down the bottom part of my eyelid as he commented on how white the area was, which should be pink in color. Inside I panicked, but could not make my body move. I worried they thought I was dead and I felt helpless to show or tell them otherwise.

With this doctor’s words, I felt Mark’s terror. He, too, was trapped in a body unable to respond. I followed the doctor as he left Mark’s room. “Please don’t ever give reports like that at his bedside again. I prefer we meet in the conference room to have these discussions. After all, the BAER test confirms he can hear, right?”

“Yes, he can hear, but I don’t believe he understands a word that’s said. However, if it makes you feel better, we can meet in the conference room from now on.”

Experience is a Great Teacher

While I appreciate the years of education a professional caregiver has, it’s still really hard for me to leave Mark at the hospital. I realize they can be an expert in their field working with people who have a wide variety of disabilities and illnesses. They may have the education and the skills of an excellent doctor, nurse or therapist, but that doesn’t make them an expert on the person they are treating. Even though I know this, it’s difficult to stay calm when they don’t know how to do something which seems obvious because it’s common to me such as transferring, bathing and the other daily tasks of caring for Mark.

The memory of three hospital admissions in 2013 for blood clots is still etched perfectly in my mind. They didn’t know how/or want to transfer him so he was bedridden for a few days. I watched him get weaker as they treated him like he could not move. I asked the doctor if the nurses and aids weren’t getting him out of bed because of the blood clots. He said no, in fact, lack of movement brings on blood clots. I asked him to please order Mark some therapy, which he did. To my surprise, the therapist wheeled in a bedside lift.

“I don’t use a lift to get him up,” I said.

“Well this one will not only help me get him up, but he can walk with this lift stabilizing him.”

I watched anxiously to see how this would work. The harness was complicated and appeared to be new to the therapist. Mark was in a weakened state and this method of getting up took little effort on his part. He wanted to help, but was confused by this foreign process. It took nearly thirty minutes to get him in an upright position, leaving little time for walking.

“He can walk with a walker,” I stated.

The therapist looked at me like I was crazy.

“I will bring it tomorrow and we’ll show you,” I said and the next day, I did just that.

With assistance from the therapist and me, Mark took steps the length of the hospital room. The therapist was impressed and amazed he could do it. I was shocked at how fast he had weakened because he usually walked better and much further.

It took the full month of August 2013 in a rehab center to build up his strength again. This hospital experience taught me I needed to let them know immediately Mark’s capabilities and I took the walker to the rehab center.

With the bitter taste of last year’s experience still fresh in my mind, I was worried about how this year’s hospital stay would go and decided I needed to be more assertive with the professional caregivers. Shortly after we entered his room and met the nurse and aide who’d be caring for him for the next two days, I asked, “Would you like me to show you how I transfer Mark into bed?”

“Sure,” they replied in unison.

Standing directly in front of him, I lifted his foot and I swung the leg rest to the side to move it out of the way. I followed the same routine with the other foot while Mark unfastened his seatbelt. With his feet on the ground and carefully positioned with the foot closest to the bed out in front of the other, I placed my feet in front of his to hold them in place. I wrapped my hands over his shoulders and tucked a few fingers under his arms. With my knees pushing against his legs, I pulled upward with my arms as he stood.  He’s 6’2” when he’s upright and his height usually surprises people when they see him stand for the first time. I used my legs to help direct him as we pivoted to the side of the bed and I lowered him to a sitting position. As he lay back, I picked up his legs and swung them onto the bed.

“You do this by yourself every day?” the nurse asked.

“Yes. It’s really not that hard after the initial pull. I use my knees against his to help him straighten upward.”

“It looks hard; you must be really strong,” she said.

Some people may take that as a compliment, but I felt like she was saying, that’s too difficult for us to do. I left for work worried that he would be confined to the hospital bed all day long and when I returned at night my worry was confirmed. Someone had even written on the white patient information board in his room “bed rest”.

My blood nearly boiled, but I took a deep breath and asked who wrote the “bed rest” order. No one knew, so I wiped it off the board. “He can lose strength so quickly and with me being the only one to transfer him at home, I need him to stay as strong as possible.”

“You have your routine and you’ve been taking care of him for a long time. It’s second nature to you, but it isn’t to us,” the nurse said.

I knew she was right, it is second nature to me and not to them, but I was also right, he needs to move to keep up his strength. By both of us being assertive and expressing our concerns, we came to an understanding with a plan for physical therapy while he was there. I didn’t necessarily like that they wouldn’t get him up and it’s hard for me to understand that some nurses and aides are not comfortable doing transfers, but we found some middle ground. I realize that rehab centers are different than hospitals where the majority of the patients are capable of walking or transferring into a wheelchair with minimum assistance and transferring Mark does take more assistance. However, I do it every day so it’s an obvious part of caregiving to me.

It’s not always easy to express what I think and feel in a positive way, creating mutual respect, when I view things differently than another. I don’t want to be passive by giving into what I don’t believe is right. If I don’t express my feelings, I get upset inside and after time it can build until I explode or become aggressive by yelling or being sarcastic. I don’t want to be disrespectful of others and their opinions. Being assertive is the ideal middle ground—where I want to be. Sharing what I have learned through my experience with professional caregivers can be intimidating and difficult. Tuesday I’ll share some great information I found on how to be assertive without offending another.

What positive experience have you had sharing what you know in a difficult situation?

Miracles Happen

Some miracles take time and aren’t always what we hoped for, nevertheless, they are still miracles. Mark’s life is a miracle, but it’s not the full recovery I hoped for. I was discouraged and hurt by doctors, nurses and the therapist who tried continually to squashed my hope with their negative statements and statistics because they didn’t believe I was facing reality. Concerning Mark’s recovery I was told I looked through rose colored glasses because I remained optimistic and hopeful. Twenty-three years later and with more life experience, I understand and have forgiven them for their pessimism. They were doing their job and I was adjusting the best I knew how with the strong feelings I had about his recovery. I’ve thought a lot about “false hope.” As shocking as the statement was to me, I recognize the spot the therapist was in, but that doesn’t mean I agree or like the statement. I truly appreciate their knowledge, which kept Mark alive, but couldn’t understand their lack of hope for improvement. I feel without hope life loses purpose. I closed my Sunday Story asking if there was such a thing as false hope. I loved Laura Nordfelt’s comment:

“This is a thought provoking question for me now. I realize that for the first year, I don’t think I placed any expectations on Greg’s recovery. I lived one day at a time. Go to the hospital. Go to appointments. Work with him on his therapy. Go to my job. Cook for him. Encourage him. Love him. Watch him nap. Watch him play brain games on his iPad. Go for walks up and down the street. I just went through the motions.

Then all of a sudden one day, he went to work for 3 hours. Pretty soon, it was 4 hours and so on. One day, he got his driver’s license and a whole new world opened up for us. Our lives began to take on a different meaning. Independence crept back in piece by piece.

I don’t think I ever had feelings that our lives would ever be the same because his physicians set me up from the beginning with cautious expectations. So hope? I tried to set the bar low and decided we would be grateful for whatever we were given. We (Greg) worked as hard as two people could possibly work with all the tools that the therapists had in their boxes and any more we found along the way. I believe it helps tremendously that we are hopelessly optimistic people! Just try and tell us we can’t do something, nope, not having it!”

Thank you, Laura, for sharing Greg’s miracle. I think being optimistic, hopeful and having faith is the most important tool in the box. It is the fuel that drives us to work hard for something. Twenty-three years ago, I set the bar high. Part of it was my lack of experience with life, but most of it came from being an optimistic, hopeful person full of faith. A person who proudly looks through rose color glasses and realizes there is a higher being in charge of life. I’m grateful I set the bar high and I’ve never regretted it. Have I been disappointed? Yes! But I wonder where we’d be today if I didn’t have high expectations and a belief that only God knows all.

We are all on a different journey with different experiences, however the feelings and emotions are the same. No one should tell another how they should feel or react to a given situation, especially when it’s a traumatic experience.

What miracles have you witnessed?

False Hope

On April 30, 1991, Dr. Hinchey walked into the I.C.U. room and said to me, “We only gave Mark a five to ten percent chance to live and given the extent of damage done to the brainstem, we do not expect him to come out of his coma. A tracheotomy is needed for people dependent on mechanical ventilation for a long period of time. Since we don’t expect Mark will be capable of breathing on his own, I recommend we do this procedure now.” Reaching up and pointing to the indent at the base of his own neck, he explained, “Through an incision in the neck we will cut in the front of the trachea and make a small hole for a trach tube.”

The words were foreign—a tracheotomy and trach tube? In my nearly 32 years of life, I never knew or heard of anyone who had this procedure done. I might have learned about it in one of my health classes at school, but I couldn’t remember. As my brain scrambled in search for information to understand the meaning of a tracheotomy, what came to mind was a M*A*S*H episode on T.V. where Father Mulcahy performed an emergency tracheotomy which was guided by the surgeon Hawkeye over the radio. Great, my brain could only recollect a tracheotomy from a T.V. series filmed in the 1970 – 80’s based on three doctors in the Korean War on a temporary army camp.

Doctor Hinchey interrupted my thoughts by handing me the form to sign giving him approval to do the surgery. The M*A*S*H flashback made me appreciate the skilled doctor who brought me the shocking news and approval form to be signed. No matter how bad it seemed, I knew it could be worse. I was grateful the surgery was not being performed by an army priest getting directions over the radio by an absent surgeon. Fortunately, it wasn’t being done in a temporary operating tent which had several beds in it and usually a few operations going on at the same time in the same tent while the sounds of war explosions were in the background. Yes, life could be sadder.

Mark survived his second surgery in three days, but seeing the plastic trach tube coming out of the base of his neck, which was connected to a ventilator, was unsettling to me. Mark was peacefully in a coma, unaware of the pumping sounds of the tubes which kept him alive. It was hard for me to watch the nurses when they came with a sterile container which held supplies to clean the tracheotomy twice a day. They had to clean around and replace the gauze under the curved wings on each side of the trach tube. This holder was secured in place by ties that went around his neck. The tracheotomy seemed invasive and the sight of it disturbed me, but the suction of his secretions was worse. I shuttered every time they used the catheter to suck out mucus and fluid.

I missed hearing his voice and now the tracheotomy made it impossible for him to talk. I kept hoping every day would be the day he’d wake up and end this nightmare. After a couple of weeks passed and he showed no sign of gaining consciousness, my dad and brothers took turns spending the night with Mark so I could go home to be with the kids. They often told me how much they missed Daddy and I’d tell them I missed him too. It was hard for a seven- and eight-year-old to comprehend how I could miss him because they knew I spent all day with him. It seemed strange to me also. They wanted to see him and asked me nearly every night when they could, but I was afraid the sight of the tracheotomy and other tubes would scare them.

On my first night home, after the kids were in bed, I pushed the incoming message button on our telephone answering machine to listen to the messages recorded. After returning the calls, I pressed the outgoing message button to hear Mark’s voice on the second cassette tape. “You’ve reached the Wilson residence. Sorry we missed your call. If you leave your name and phone number, we’ll get right back to you.” Tears escaped my eyes as I longed for him to “get right back.” This became my nightly routine. I loved hearing his deep voice while each word was pronounced clearly. I didn’t want to forget the sound of his voice and hearing it helped me sleep at night without him by my side. This simple, but now treasured recording made me feel close to him.

The longer he was comatose the less likely it seemed he’d come out of it, but as anxious and impatient as I felt to see his eyes and hear his voice, I realize he had too many serious health issues to wake up. I knew all his energy needed to go to fighting infections and healing his traumatic brain injury, but all the knowing and understanding didn’t stop me from wanting him to respond to me. Every day I’d read to him and hold his hand. I brought a cassette tape recorder from home and played his favorite music. I whispered sweet nothings into his ear, hoping he would open his eyes. When that didn’t work, I tried provocative or shocking words. Anything and everything that I thought would arouse or surprise him to the point he’d open his eyes—but no response. I was powerless to wake him up, yet every day I tried.

My days were filled with talking to the doctors, nurses and therapists caring for Mark. I got to know them and appreciated their skills. At least twice a day the physical therapist would do simple range of motion exercises to stretch Mark while we visited. I felt like I knew her pretty well after a month, so I was surprised to learn from a nurse that the physical therapist had a brain injury herself.

“I’ve heard you were also in a car accident a few years ago and were in a coma yourself for a short time.” I stated.

“Yeah.”

“Why didn’t you tell me,” I asked.

“My injuries were not as extensive as Mark’s and I didn’t want to give you false hope.”

“False hope? Without hope what is all this care for,” I asked.

I was hurt and discouraged. It seemed that not one doctor, nurse or therapist believed Mark would improve which felt like a betrayal. They were continually squashing my hope with their negative statements and statistics. Their knowledge kept him alive, but I began to realize that without hope for improvement, life would be worse than death…because this was no way to live!

Without hope life loses purpose. Is there such a thing as false hope?

Let Go of the Things You Can’t Control

A few weeks ago I got a call from my daughter, Katie. “Hi Mom, Eldin and I are in the neighborhood. Can we stop by for a few minutes?”

“Sure, what’s up?”

“Just thought we’d return the book we borrowed.”

“Sounds good. I’ll look forward to seeing you soon.”

When they arrived she handed me the book and said they had some bad news and some good news. This news was the real reason for their visit.

I suggested we all sit down. Katie hesitated, then took a deep breath and looked at Eldin. He softly said, “You can do it.” She took another deep breath and announced they had just come from the doctor’s office and she had thyroid cancer.

In total shock a hundred thoughts darted quickly in my head: How could this happen to my daughter? How could I have had no warning? Why didn’t she tell me she wasn’t well? Am I so caught up in Mark’s health issues I don’t notice my own child’s health? Was she afraid to tell me because of Mark’s health? I want to be the kind of mother my kids can come to and count on. I thought we shared important things. We used to be close or at least in my mind. What have I done for her to keep such important information from me? Why wasn’t I there for her during the testing? The horrible thoughts kept darting in my brain and in my heart. I tried to fight the tears, I wanted to be strong for her, but they welled up anyway.

Katie said, “The good news is the doctor said if you’re going to have cancer, this is the best kind of cancer to have. It has a 95% cure rate.”

I thought of my dear friend, Michelle, who had part of her thyroid removed and I knew she lived a healthy life. But the tears kept coming, not just because of the diagnosis, but also because my daughter hadn’t turned to me for comfort or strength. I felt like a failure as a mother.

Katie said the testing just started a couple of weeks prior just as a precaution. She really didn’t think anything would become of it. She hadn’t been feeling pain. The only symptom she had been experiencing was fatigue. She was surprised when her doctor discovered the lumps in her neck.

I’m realizing once you’re a mother, you are always a mother. The feeling of wanting to make it all better never goes away. For an unreasonable moment I resented my son-in-law for taking away my daughter at the young age of nineteen. I wasn’t ready to let her go then and even now that she’s been married nearly eleven years—I still struggle with letting her go.

As my children age, I become less needed. Their lives are busy and filled with opportunity. I’ve heard my own mother warn about this cycle and know she struggled with it too, so at least I know I’m not alone.

When our children are young it’s physically draining meeting all their needs. As they get older and don’t need you it becomes emotionally hard. Letting go is a difficult thing to do and it starts when they become teenagers, struggling for independence. It wasn’t easy then and now that they’ve gained their independence, it’s still hard at times. My guess is it will never be easy.

When you love someone it’s just hard to let go. I raised my children to be independent and productive adults, and they learned it well. I should be grateful. I am proud of them, and as hard as it is to let go, it’s rewarding to watch them fly independently!

 

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