Our Happy Place

Two months ago today Mark had his second total hip replacement surgery. Out of the three most common replacement surgeries, hip, knee and shoulder, we’ve been told the hip replacement is the easiest to recover from. We saw many people during his seven weeks of in-patient rehab days who healed a lot quicker than Mark, even with a knee or shoulder surgery. It’s hard not to get discouraged. This is when I realize having a short-term memory problem is a blessing that Mark inherited from his traumatic brain injury (TBI). He lives in the moment, which is what I’m trying to learn how to do.

The pain of moving joints, muscles and tendons which have been cut and were not in good condition beforehand seemed at times unbearable. Mark’s ability to make his body move is difficult with his TBI under normal conditions, but throw a surgery in the mix and it’s nearly impossible. However, he persistently works hard to please the therapists and me, doing all that is asked of him, even when he doesn’t feel like it. He has made remarkable progress for his circumstances. When I liken his abilities to before surgery and not another patient, I am thrilled with his progress.

Often right before or during a painful stretch, Mark’s therapist would say, “Go to your happy place.” To that Mark would reply, “My happy place is any place other than here.”

Wanting to be helpful, I started naming vacation spots which hold wonderful memories. “How about the beauty of Zions, Bryce and Grand Canyon; remember the thrill of seeing the parks for the first time on our honeymoon?”

“I just want to go home.” Mark replied.

My thoughts moved to the gorgeous State of Washington where Mark grew up. “I love Deception Pass and the San Juan Islands. I look forward to our next trip there, how about you?”

“Home is my happy place so take me home.” Mark pleaded as the painful stretch continued.

As a wife and caregiver, I want nothing more than for Mark to be better. My world has revolved in this endeavor for twenty-five years next month. In the first few years after his TBI, it was a race against time because it was believed that the greatest amount of progress would happen in the first year and then slow down and plateau within the following couple of years.

Subsequent years we continued seeking for improvement with foot surgeries on both feet to correct foot drop and toe tendons cut to release curl to make standing possible. Also he’s had previous hip surgeries to clean out the joints for improved movement and a Vagal Nerve Stimulator (VNS) implant to help control his seizures along with the various surgeries in the beginning which saved his life. All told, Mark has had fifteen surgeries since the car accident.

Mark turned sixty last November so the path of our journey seems shorter than it used to, which adds a new dimension for recovery importance. It’s evident to me that striving for improvement is a lifetime pursuit. But this is not the life we’d planned and there is a certain amount of grieving that happens over the loss of dreams and honestly some dreams are harder to bury than others.

I’m human and some days I run out of patience and energy. I want Mark to be better now, but recovery is still happening. We are no longer in an in-patient facility, but are now engaged in out-patient therapy. I’m finding it hard to get into a regular routine with the interruptions of driving to and from the needed therapy sessions daily, preparing meals, managing prescriptions and doing the regular household chores. These are the responsibilities I was relieved from while Mark was at the rehab center. Don’t get me wrong, I’m happy to be home, but I’m looking forward to these common tasks becoming second nature to me again. Feeling overwhelmed makes me wish for a far-away trip, a vacation from health concerns and worries. However, the TBI and physical limitations go with us no matter where we are—so there’s really no escape.

Backyard – My happy place.

At the same time, I’m grateful to be home where we have our privacy and some control over our own time. I appreciate the beautiful place where we live, which was custom built to meet Mark’s needs. For us it is the most comfortable and peaceful place on earth, designed to make our life easier. The openness and wide hallways make it possible for Mark to maneuver in a wheelchair. The large shower which Mark can roll right into and a bathroom sink he can roll under creates independence. Even outside we have cement sidewalks around the backyard so we can enjoy the outdoors together. We are fortunate to live in such a house and we have awesome neighbors too. Whenever I feel sad about the places we can’t go, I remember, there is truly “no place like home.” We are grateful after nearly eight weeks of being away to finally be back in our “happy place.” We couldn’t be more thrilled that the surgeries are finally behind us and given a year to heal, I’m certain Mark will be entirely pleased with his hip replacements.

Where is your happy place?

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!

Angels Walk Among Us

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?

Laura’s Story, Part 5

My name is Christine Scott. I’m a forty-six-year-old mother of five children and I grew up with a mentally disabled sister. In my first segment of Laura’s Story, I recounted her birth and slow development. In Part 2, I told about the impact of her seizures and Part 3, her fight with cancer. Part 4 revealed how I learned about the accident which lead to my father’s death.

Life has a way of going on, even when tragedy strikes. You put one foot in front of the other and get through the hard times. I wish I could say my family survived the year my dad died by praying and relying on our faith, but I can’t. We weren’t the praying type. I believe it was the love and faith of others that carried us through those dark hours and days.

Laura & I

Even though I wasn’t aware of it at the time, my dad’s death shook the small community of Morgan, Utah, and those good people surrounded us with their love and support. Our house was being sold out from under us so we had to move and with Dad gone, there was no longer a reason for us to stay in Morgan. We had planned to move to Ogden, but after his death it was decided we should move in with my grandparents in Kearns, Utah.

My dad passed away on a Wednesday and we had his funeral on Saturday. It was a closed casket viewing because his head was crushed during the accident, with only a graveside service.The service was simple, the way he would have wanted it. Since he was an army veteran, his plot was donated along with his headstone.

Roland Sinfield, an angel in our lives and a colleague of Dad’s, sold equipment and hang gliders out of my dad’s shop and put collection jars around Morgan to raise money for our family. After daddy’s funeral, he gave my mom $700 from those collection jars to help cover funeral and moving expenses.

We had many other angels in our lives and my aunt Jean was one of them. Single handedly she packed up our house—which she deserves a medal of honor for this amazing feat. I’d spent the previous summer in the field by our house, catching the biggest grasshoppers I could find. I put them in mason jars and stacked them in my closet. I don’t know how many jars I collected, but the bottom of the closet was pretty full. After all these years I think Aunt Jean is still traumatized from cleaning out that closet.

Laura, age 12

We moved in with my grandparents in Kearns, Utah. In less than two weeks after my dad’s death, my mom enrolled Laura and I in new schools.When I asked my mom about this time in Laura’s life, she doesn’t remember much about how the events affected Laura. She was struggling through her own pain. She does remember sitting with a counselor at Hartvigsen, the special education school in Granite School District. While getting Laura enrolled, Eric, who was only eight weeks old, began to cry. Laura told the counselor he was crying because we needed to teach him how to talk. My mom said it was so cute and one of her favorite memories of Laura. I’m happy she’s able to look back at this difficult time and find a small amount of joy.

In addition to the angels in our lives to help us through this time, we had our habits and routines. Doing activities which were important like going to school, washing dishes, caring for our newborn baby brother Eric. By getting back to our normal lives—we began to heal.

Family photo with the grandparents we lived with after daddy passed away.

Recalling my dad’s death, I take a great amount of comfort in how we survived this tragedy, in how our family and community pulled together for us. No one wants bad things to happen in their lives, myself included. But if tragedy strikes—I know my family and I will be all right because we’ve been through some pretty rough circumstances and came out stronger in the end.

Thank you, Christine, for sharing how your family coped with the loss of your father. I know from my own experience the value of the love and support from family and friends. The kindness of strangers in a community is heartwarming and uplifting . The total impact of many is huge in carrying us through difficult times. I like the saying, “if you care and you give, you are a caregiver.” This segment of your life truly demonstrates the variety of caregivers. While your mom was the major caregiver for you, your sister with special needs and an infant, thank heaven there were angels that carried her through those dark days. Generally speaking, we often don’t realize the difference we can make in another’s life.

I’m grateful for the angels in my life and in yours.

 

Everything Can Change

I can relate to Christine Scott’s feelings and well written words in Laura’s Story, Part 4: “You should have some type of warning before your life unequivocally changes so you have the chance to do things differently—to take advantage of those last moments to say ‘I love you’ and ‘goodbye.’”

How easy it is to take for granted family, friends, life, health and abilities.

Today’s a great day to hug the ones we love and appreciate what we have. Remember, “in the blink of an eye everything can change.”

Part 5 of Laura’s Story will be published on Wednesday.

Explaining Death

In Laura’s Story, Part 4, Christine shared her memory of the death of her dad.  I imagine the caregiving aspect for her sister, Laura, presented new challenges with the passing of their dad. I look forward to the next segment and learning how they all coped.

I was touched by Christine’s words, “Our adversities don’t define us unless we let them, but experiencing the death of a parent when you’re in your childhood changes your life. You learn the world isn’t a safe place and death is very real and can strike at any moment.”

Although Laura was twelve years old when her father died, her disability made it hard for her to understand death or “going to heaven,” which is what her mom told her every time she asked where daddy was.

The death of any loved one is hard and the recovering process takes time. I remember clearly my first experience coping with the sudden death of an aunt when I was a child. Our capacity to understand death varies depending on age and abilities.

I found an excellent article, http://kidshealth.org/en/parents/death.html#, which describes a child’s capacity to understand death and their possible response to it by age. My summary of the article is as follows:

Before five or six years old, their view of the world is very literal. Therefore, explain death in basic and concrete terms such as the person’s body wasn’t working anymore and the doctors couldn’t fix it. If the death was a result of an accident, you might explain what happened and because of this very sad event, the person’s body stopped working. You may have to explain that “death” means that the body stopped working.

Young children have a hard time understanding that all people and living things eventually die and they won’t be coming back. Even after you’ve explained this, kids may continue to ask where the loved one is or when the person is returning. It’s important to calmly reiterate that the person has died and can’t come back.

The article suggested avoiding the use of euphemisms, such as telling kids that the loved one “went away” or “went to sleep” or even that your family “lost” the person. Because young children think so literally, such phrases might inadvertently make them afraid to go to sleep or fearful whenever someone goes away.

From age six to ten a child can start to grasp the finality of death, however, they don’t understand that it will happen to every living thing one day. Often, kids this age personalize death and think of it as the “boogeyman” or a ghost or a skeleton. They deal best with death when given accurate, simple, clear, and honest explanations about what happened.

As children mature into teens, they start to understand that every human being eventually dies, regardless of grades, behavior, wishes, or anything they try to do. Questions may naturally come up about mortality and vulnerability. For example, a sixteen-year-old’s friend dies in a car accident and a teen might now be reluctant to get behind the wheel or even ride in a car. The best way to respond is to empathize about how frightening and sad this accident was. It may also be a good time to remind your teen about ways to stay safe and healthy, like never getting in a car with a driver who has been drinking and always wearing a seatbelt.

Teens also tend to search more for meaning in the death of someone close to them. A teen who asks why someone had to die probably isn’t looking for literal answers, but starting to explore the idea of the meaning of life. They may experience some guilt, particularly if one of their peers died. It’s best to encourage them to share their grief with you or another trusted, empathetic family member or friend.

A young child might not cry, but react to the news by acting out or becoming hyperactive. A teen might act annoyed and may feel more comfortable confiding in peers. Whatever their reaction, don’t take it personally.

Learning how to deal with grief is like coping with other physical, mental, and emotional matters — it’s a process.

For more information on this topic see http://kidshealth.org/en/parents/death.html#

Related Article: Twelve Things I’ve Learned About Grief 

Thanks for reading. I look forward to seeing your thoughts and/or experiences with explaining death to a child in the comment box below. Sharing what has or hasn’t worked for you could help another person on their pathway through grief.

Laura’s Story, Part 4

Christine Scott

My name is Christine Scott. I’m a forty-six-year-old mother of five children and I grew up with a mentally disabled sister. In my first segment of Laura’s Story, I recounted her birth and slow development. In Part 2, I told about the impact of her seizures and Part 3, I told about her fight with cancer. Processing the memories and spending time reminiscing with my mother about my sister’s life is exactly what I needed—and my mom too.

 

How come when we finally get our lives into a good place, it seems like forces combine and everything falls apart? At least this is how I used to feel before I grasped a better  understanding of adversity and how it can work in our lives for our progression.

After Laura’s recovery from cancer, life was good for my mom. Laura’s hair came back in thick and with soft waves. She gained weight and stopped catching every virus which came along. Mom’s career at Ogden Weber was blossoming. She had a support system and was learning new things every day.

Then my dad felt like it was time to have another baby. Mom didn’t agree. That ship had sailed years ago for her.

But in the end, Mom lost, Dad won, and my little brother was on his way, which put ten years’ difference in age between us. I can say I didn’t blame my mom. It was like starting over again with another new family. This meant she’d have to quit her job to take care of a newborn and she’d have to face all those what-if’s she’d experienced with Laura.

My brother, Eric, was born on September 2, 1979, a month after his due date and weighed over eleven pounds. Laura loved him. She often touched his hand and made funny faces at him.

Dad, Klaus Hill

At this time, my dad was under a tremendous amount of stress. In addition to my brother’s birth, one of his business associates was pressuring him to motorize a previous hang glider he had built. This man weighed much more than anyone who’d flown this particular hang glider before, which was making it hard to get the design right.

We were currently renting another older home, which the owner sold out from under us. There weren’t any houses for rent in Morgan, so we started looking at rentals in Ogden and my dad would make the drive to Morgan—which meant I’d have to change schools. This was the backdrop to the tragedy which struck my family.

You should have some type of warning before your life unequivocally changes so you have the chance to do things differently—to take advantage of those last moments to say “I love you” and “goodbye.”

October 10, 1979, I woke up late and feeling grouchy. I thought I had missed my bus and daddy offered to give me a ride to school, but I glanced out the living room window and saw kids still waiting in line for the bus.  So I hurried to my bus stop while my dad’s old car rattled by. I had no idea I’d never see him again, but over the years I’ve always regretted not getting that last ride to school with him.

It was during lunch I found out. I was in line getting my food—enchiladas. It’s funny how certain details stay with you for a lifetime. Two women stood at the far end of the room glancing at all the students. When I recognized my neighbor, my stomach fell.

Suzanne, my neighbor, motioned for me to come over. I wandered over, carrying my lunch tray. She told me to leave my lunch and that I was needed at home. Those were the only words she said to me, no matter how many times I asked her what was wrong. She just walked me to her car and drove me home in silence while I silently fought the urge to scream at her.

People I’d never seen before crowed into my living room. The county sheriff was there. Everyone stood like statues. I don’t remember who told me my dad had been killed while taking the glider with design flaws on a test flight. I’m assuming it was my mom. I don’t remember if she held me while I cried, but I hope she did. I don’t even remember if Laura was there. I’m thinking she might have still been at school.

Our adversities don’t define us unless we let them, but experiencing the death of a parent when you’re in your childhood changes your life. You learn the world isn’t a safe place and death is very real and can strike at any moment—a fear I’ve always carried for every person I’ve ever loved.

Laura’s disability served as a blessing for her because she didn’t understand death or “going to heaven,” which is what my mom told her every time she asked where daddy was. While alive, he was away from us so much she thought he’d simply be home in a few days. I wonder how long it took before she stopped waiting for him to come home.

I wouldn’t trade these experiences because they have made me more compassionate. I wish my kids knew their grandfather, but the trials we must pass through are not given to us by chance—every hard time in our lives has a specific purpose, a specific design. We may not understand that purpose in this life, but some day we will, and that knowledge is what keeps me going during the dark days.

Thank you, Christine, for sharing such tender and difficult memories. I love the pictures of your dad and can see the passion he had for hang gliders in the expressions on his face.  I imagine this caregiving journey for your sister took an unexpected hard turn with the passing of your dad. I look forward to your next segment and learning how you all coped.