Laura’s Story, Part 4

Christine

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.

Laura's Dad2

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.

Laura's Dad3

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.

Laura's Dad

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 Dad4

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. 

 

 

Laura’s Story, Part 3

ChristineMy 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 Laura’s Story, Part 2, I told about the impact of her seizures. Processing the memories and spending time reminiscing with my mother about my sister’s life is exactly what I needed—and my mom too.

Laura Piano

Laura 1973

Cancer is a six letter word no one wants to hear. It’s the fear on everyone’s mind when anything abnormal happens to a loved one’s health. And no one wants to hear the word cancer associated with their child.

At the age of seven, Laura had this reoccurring lump on the right side of her neck. Our family doctor thought it was a puss pocket inside the gland and whenever it became enlarged he’d treat it with antibiotics.

Laura’s whole life up until that point had been a series of illnesses, which included reoccurring strep throat. After about two years, the lump stopped responding to antibiotics and she never really got to a point where she felt good. Children usually have boundless energy, but she was often lethargic. Even after the lump stopped responding to antibiotics, our family doctor didn’t suspect the possibility of it being cancer although Laura’s health continued to decline.

Mom was tired of not getting answers and she took Laura to another doctor who was Dad’s friend. He diagnosed the lump as Hodgkin’s lymphoma, so she took Laura to LDS Hospital where she underwent her first surgery to have the lump removed. Biopsy of the lump was sent to five different hospitals to be tested; two diagnosed it as cancer.

It took six months from the time the lump stopped responding to antibiotics until a formal diagnosis was made. Luckily the cancer was only in stage two and very treatable.

Laura was admitted to Primary Children’s Hospital to have her spleen, appendix, and gallbladder removed in preparation for radiation treatments. The doctors chose to treat Laura with radiation because it was believed to be less invasive than chemotherapy.

Laura & Chris Christmas.jpg

Christmas- Laura & Christine

During this time I had become a wild thing. This seems very fitting considering Where the Wild Things Are, by Maurice Sendak, is my all-time favorite children’s book, except my mom was too busy taking care of my sister to send me to bed without my super. I remember chewing up a carrot and spitting it all over the TV screen and then blaming it on Laura. Since she lacked the communication skills to deny the accusation, my mom believed me. I’m sure this blaming Laura for my foul deeds was a common occurrence.

We lived in a hundred-year-old house and behind it there was a wooded area where I would play for hours by myself or with the neighborhood kids. My imagination went wild. I caught snakes in the ditch and went on many adventures, which I’m sure would make good children’s stories if only I could remember them in detail.

Another memory which reflects my wildness is when Laura was in the hospital following her second surgery. I was left in the care of an elderly neighbor while my mom stayed by Laura’s side. At the end of her hospital stay, I remember being quite proud of the fact I’d managed to go a whole week without a bath.

Mom drove to Primary Children’s Hospital three times a week for six weeks for Laura’s radiation treatments. She would get me out of bed at some horrible hour, long before the rest of the world stirred. We’d drive the hour to Salt Lake. It’s funny how a child’s memory perceives things on a much grander scale. My recollection of this drive is of us winding through the mountains, which Mom told me was Memory Grove. At this time Primary Children’s Hospital was located in the avenues. I waited forever on hard chairs where I often fell asleep. We stopped at a convenience store and bought breakfast—pickled eggs—which I loved! Then my mom drove another hour to Ogden Weber so Laura could attend a few hours of school. After dropping her off, we drove twenty-five more minutes back to Morgan so I could go to school. I often arrived late for class.  Miss Compton, my first grade teacher, usually got upset with my mom for bringing me late. If she knew the circumstance surrounding my tardiness, I wonder if she would have been so quick to pass judgement on my mom.

Laura & Chris picnic.jpg

Oshkosh, Wisconsin at the EAA convention (Experimental Aircraft Association. The long silver trailer at the side of us held my dad’s ultralights (motorized hang gliders). Laura was still recovering from her radiation and too weak to walk around so we pushed her in the wheelchair.

Many, many months later Laura was pronounced cancer free. I can’t imagine how my mom survived those surgeries and the six weeks of radiation treatments. My dad’s hang gliding business had really taken off and he couldn’t take the time away from work to help her, so she did it all alone. Yesterday I asked her how she did it and she said, “You just have to pull yourself up by the bootstraps and take it one step at a time.” Then she smiled and added, “I’m made of good pioneer stock where the fittest survive.”

At that moment I realized how much I love her and appreciate all she sacrificed for our family.

Thank you, Christine, for sharing more of your sister’s story. I love seeing this caregiving journey through a child’s perspective. It helps me understand what my own children went through because so much of my time and energy went to caring for their dad. I realized to a degree how hard it was for them and felt concerned about it. It’s so difficult to juggle all the responsibilities. Your mother is blessed to have you and I’d be willing to bet you brought her sunshine on those dark days.

I look forward to your next segment.

 

Laura’s Story, part 2

Christine

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. Processing the memories and spending time reminiscing with my mother about my sister’s life is exactly what I needed—and my mom too.

In 1970 with only a few days left until Christmas,  my mom loaded Laura (three years old), and me (eighteen months) into the car and made the hour commute from Morgan to Salt Lake. Laura had been running a slight fever, which wasn’t out of the ordinary. Ear infections and sicknesses had become a common occurrence. Once in Salt Lake, she left us in the care of my grandparents so she could go Christmas shopping with Aunt Jean—my mom’s younger sister.

Enjoying the anticipation of the holidays, my mom and Aunt Jean began their shopping trip. While inside their first store, my mom heard her name over the store’s intercom. Since this was during the time before cell phones, it’s easy to imagine the anxiety which must have overtaken her at that moment. She doesn’t remember exactly what the store’s employee said, but easily recalls the anxiety-filled trip to the hospital where Laura lay unconscious.

Laura young

Laura

This was Laura’s first seizure. She did not convulse, like one typically assumes happens during a seizure, but passed out and stayed unconscious for twenty minutes or more. At the hospital they administered phenobarbital, an anti-seizure medication and later antibiotics after diagnosing strep throat.

It’s hard for Mom to remember the timeline and the events which happened so many years ago and unfortunately she didn’t keep records. I remember as a child feeling very disappointed when we left the swimming pool or a playground early or didn’t get to go at all because certain activities seemed to induce seizures. This is when I began to figure out Laura was different from other children, which was beginning to make me different as well.

Laura swing

Laura & Christine

My mom took Laura to Primary Children’s Hospital for multiple evaluations. Laura most likely had started school during this process and was exhibiting some behavior problems. The doctors ran tests and put her on Ritalin. My assumption is that the Ritalin was introduced to help her in the classroom. Laura started having grand mal  seizures and mom directly blamed the progression of her seizures on the Ritalin.

Laura & Chris Easter

Christine & Laura in matching Easter dresses Mom made.

Life went on and Mom did her best to provide a good life for us while dealing with the challenges placed before her. Living in the small town of Morgan, Utah, the elementary school was not equipped to handle Laura’s disability. Since Laura couldn’t function in the classroom, she only attended school a few times a week for a couple of hours. Dissatisfied with the services Laura was receiving, my mom chose to drive twenty-five minutes to Ogden Weber, a special education school. This is where Mom finally began to receive the support she needed for my sister. She was hired on at the school as a teacher’s aide and joined a community of individuals who cared for children with disabilities. When I look back on this time, I remember the happiness and peace my mom experienced. With the money she earned she was able to buy a more dependable car and a dishwasher. When I recently asked her about the time she worked at Ogden Weber, she said, “I learned so much.” The people she worked with respected and treated her as an equal—which I believe made a huge difference in how she felt about herself.

Laura & Chris 2

Christine & Laura

Since Mom worked outside the home and had to leave early in the morning, my care fell to my dad. Luckily at this time I was a first grader and attended school all day. Dad owned his own business where he designed and built hang gliders. I left early with Dad and stayed at his shop until it was time to catch the bus. These were cold and lonely mornings for me. A wood stove made out of a half metal barrel heated his drafty work area. I stood so close to the stove to keep warm that it melted the fake fur which trimmed my coat, forming ugly burned clumps. Mom trimmed them off the best she could since we didn’t have enough money to buy a new coat.

Another memory I have of Dad’s workshop is when I had the measles. For two weeks I laid in a makeshift bed up in the loft of his shop while I recovered. I missed my warm home and my mother’s care. Looking back, this is when my detachment from my mother began, when I started making myself small in order for our family to survive.

Life goes on and we do our best to work through the challenges placed before us. Medication controlled Laura’s seizures and my mom continued to work at Ogden Weber. At Laura’s young age of nine a suspicious lump on the side of her neck stopped responding to antibiotics and was diagnosed as Hodgkin lymphoma. My quiet, stalwart Uncle Bob was diagnosed with cancer along with my cousin, Rick. After a commendable fight, Bob recovered and returned to work, but my cousin didn’t. He died of Hodgkin lymphoma.

Laura's family

Mom, Me, Dad, Laura & Grandparents

At the time, I was unaware of all the hardships my mom faced and my heart goes out to her as I think of the superhuman strength it took to face another new challenge. She had already overcome so much. I will always be thankful for the example she set as she showed me what it means to be strong in the face of adversity and to not give up no matter how hard life gets.

Thank you Christine for sharing your sister’s story. I appreciate getting a child’s perspective on the caregiving of a close sister and realizing how a healthy child could be overshadowed by the concerns of health and financial worries. It’s amazing  the variety of challenges Laura endured and reminds me that no person is an island. What happens to one affects every member of the family. I look forward to your next segment.

 

 

Laura’s Story

ChristineMy name is Christine Scott. I’m a forty-six-year-old mother of five children and I grew up with a mentally disabled sister. I know Barbara was inspired when she asked me to contribute to the Uniting Caregivers blog. Processing the memories and spending time reminiscing with my mother about my sister’s life is exactly what I needed—and my mom too. Thank you, Barbara, for listening to the Spirit’s promptings.

It’s time to share my story.
When babies makes their entrance into the world, fingers and toes are counted and soft cheeks are kissed. That newborn scent is inhaled and it feels like those in attendance have been transported to heaven—at least for a moment.  Expectations are high. Parents look into their beautiful child’s face and eagerly watch for a glimpse into what the future holds for their precious little one. They picture milestones: that first smile, that first word, and that first step. They can’t wait to see how their beautiful child is going to grow and progress.

But what happens when those long awaited milestones don’t happen, when friends and loved ones question your child’s progress, and maybe suggest something is not quite right? When illness and hospital stays become commonplace, how do these parents cope?

Laura & MomMy sister, Laura, was born on July 3, 1967, the first child of Klaus and Elaine Hill. Laura didn’t come into the world in the anticipated way. My parents lived in Hoystville, Utah, an hour’s drive from the nearest hospital. Since it was my mom’s first baby, she didn’t know what to expect. She didn’t realize the back pain she was experiencing meant she was in labor, and when she finally figured it out—there wasn’t enough time to drive to the hospital. As a result, my sister was born in a parking lot at Parley’s Summit, in Parley’s canyon. And that’s what it says on her birth certificate. “Place of Birth: Parley’s Summit.” No joke.

No one thinks they’re ever going to have to deliver a baby on their own in the car, right? My young and inexperienced dad rose to the occasion like my mom’s very own knight in shining armor and the delivery went pretty well. I don’t know if he drew on his experiences of living through World War II in East Prussia, but he safely delivered his daughter and drove his wife and baby to the hospital.

My dad passed away when I was ten and I wish I could go back in time and ask him about his fears and worries at this moment in his life. I’d like to know about the strength he drew on to provide for his daughter in wife in the face of such scary and uncertain circumstances.

There was one problem my dad didn’t realize, but he couldn’t have done anything about it anyway. My sister was born three to four weeks early—and as a result—was not getting enough oxygen. As a result, the cells in her brain were damaged during the remaining thirty-minute drive to the hospital.

Laura BathMom and baby were released from the hospital in the typical way and everything seemed to be fine despite Laura’s rocky entrance into the world. My mom quickly settled into the life of a new mom, enjoying her beautiful daughter and running her tiny home. As time passed, Laura didn’t crawl, she scooted on her bottom, and at twenty months she wasn’t walking or talking and didn’t show any interest in being potty-trained.

Well-meaning family and friends commented on Laura’s lack of progress, but my mom refused to believe them. Her response: “She isn’t that delayed for an eighteen-month-old. She’s just a late bloomer.”Laura was beautiful. Laura was perfect. She was everything my mom dreamed her to be, so she didn’t listen. Even the family doctor supported my mom’s theory about my sister being a late bloomer.

Looking back, my mom admitted she didn’t want to know. She didn’t want to face the hard, cold reality that something was seriously wrong with her baby.

Laura & ChrisTwo years later I was born, which helped my sister developmentally more than anything else. She now had a living, breathing model of how a normal child progressed constantly at her side. Besides, she couldn’t let her little sister show her up. She walked within weeks after I took my first steps, but she still never crawled. Up until the time I walked, scooting on her bottom got her where she wanted to go. She began to put together simple sentences. Things were looking up for my sister. My mom’s worries were finally being laid to rest. She could now breathe a little easier and look those family members and friends in the face and say, “Look, she’s fine, just like I told you.”

LauraUntil Laura experienced her first seizure.
As I reflect back on that time in my mom’s life, on her fears and how alone she must have felt, I wish I could put my arms around her and my dad and pull them into the embrace of a loving God and having that supreme guidance and comfort the Holy Ghost provides. It would have made all the difference. But they were both strong and they did the best they could, and I love them for it.

This ends the first part of my story of growing up with a mentally disabled sister, which I will continue over the next few weeks. I hope I will provide some insights which may help you with some struggles you face as a caregiver.

Thank you Christine for sharing part 1 of Laura’s Story. We look forward to your future segments. 

The Blessing of Adversity

adversityWhile organizing some files, I found and read a talk Mark wrote and gave in church, November 1990, five months before our car accident. The title, The Blessing of Adversity, grabbed my attention and my heart started to pound as I read on. By the time I got to the last few paragraphs tears were flowing as I realized twenty-five years later the prophetic nature of his words. The talk is well over 2,ooo words so I decided to publish only part of the talk. I try to keep these articles around 1,000 words.

If you didn’t know my husband before the car accident, this gives insight on how he was before and you’ll see the core of his soul hasn’t changed. He is an example of enduring to the end and appreciating life and the lessons learned along the way.

Written by Mark Wilson

Many blessings are obvious. Our families, friends, homes and the country we live in are all blessings most of us recognize and are grateful for.  But I’d like to talk about some blessings that aren’t always so obvious.  You see, I believe that very few things happen in this world that aren’t blessings, even being asked to talk in church, for instance. Like many of you, I am terrified of talking in public.  While serving as ward clerk, I sat in on many a bishopric meeting, wherein the topic of discussion often was “who can we get to speak in sacrament meeting?” You know, not once did I volunteer.  Come to think of it, I don’t remember anyone else volunteering either. How can giving a talk in sacrament meeting be a blessing, you ask? Well, if you do it enough, chances are you’ll learn not to be scared. Not being afraid in front of large groups of people would be a plus, I think. You see, what I’m really talking about is adversity, or rather the opportunity to overcome it, can be a blessing. We’ve all been taught this sort of thing before. The scriptures give many examples of how people have been blessed or how we can be blessed by “enduring to the end” or overcoming adversity.

In my line of work, I have on a number of occasions had to serve as job foreman, with anywhere from one to a dozen other electricians in my charge.  Being a foreman is a job that I’ve never liked.  The raise in pay (usually a whole dollar an hour) never seemed to compensate for the added worry over doing the job right, along with the pressure of getting the job done on time. There are always problems with getting the manpower, equipment and materials you need on time.

My first experience along these lines was a real disaster. When the first phase of the new minimum security men’s facility at the state prison was built, the company I was working for at that time was contracted to wire it.  This involved not only the power and lighting systems, but also some very involved security, communications and life safety systems as well. My boss asked me to be in charge of four of the seven buildings.  Up to that time, I had had no prior experience on jobs of that nature.  In fact, I was still only an apprentice.  I consented and before I knew it, I found myself desperately trying to figure out all these systems that were my responsibility. I was reading from blueprints that were rain-faded and wind-torn because the weather was so bad. The general contractor was literally pouring concrete down our boots as we worked feverishly to stay ahead of them on the conduit work. One conduit left out or plugged with concrete would have spelled big trouble and a great deal of expense to correct.

I was so nervous and uptight that I found I couldn’t eat my lunch. I was actually sick to my stomach with worry. I couldn’t sleep at night. I was a nervous wreck. After a few weeks of this, I called my boss one night and told him I couldn’t go on. He would have to find someone else to take my place. He did and I got my sanity back, but I’ve regretted that I didn’t stick with it. What a tremendous growing experience this could have been for me had I been able to “endure to the end”.

Several years have passed since that awful prison job and I’ve been in somewhat similar circumstances a few times. Although I haven’t quit, I’ve never really gotten used to being a foreman and I avoid it all together whenever possible.

About a month ago, I was called into the office and asked to run a job. I thought, oh brother, here we go again. Next the boss starts telling me how important this job is because we’re looking forward to the people we’re working for to throw us a lot more work in the future if we perform well on this job.  That’s all I need, more pressure. One of the reasons I agreed to be the foreman was because he said we had three months to get the job done.

Shortly after I arrived on the job site, the general superintendent informed me we had three months to do the job, but that was two months ago. It took the lawyers, owners and engineers the first two months to get the paperwork done. We only have one month left!

That day, lunch was a little hard to get down. That one month is over in four more days. There’s a chance we might not finish on time. But whether we make it or not, I feel good because I managed to “endure to the end” and just did the very best that I could. The feeling that gives me is downright terrific. What a blessing trials and tribulations can be!

We’ve all had problems at one time or another that we thought at the time were insurmountable.  How did we handle it?  How about the times that we’ve given up?  How does that make us feel?  What a difference it makes when we persevere or “endure to the end” and win! Even during the times when we don’t give up and lose anyway, we still learn a valuable lesson. It’s not the end of the world! The sun will still rise the next day.

We should thank our Heavenly Father for this wonderful life He’s given us and all the problems that come with it. When we are faced with adversity, we should wipe the frowns from our faces and the tears from our eyes and with appreciation in our hearts for a God that loves us enough to test us to our very limits. With gratitude we should dive right in head first knowing that all things give experience for our good.

Note:

Scriptures and doctrine examples have been left out due to the length. If you’d like to read it in its entirety, let me know and I will email it to you. My email address: Barbara@UnitingCaregivers.com

Dancing with Class, part 2

On Friday, July 2, 2004, Judith lost control of her bike and flipped into a ditch. Her back was broken. Last Sunday, Neils Knudsen, her husband, shared the emotional and physical impact the accident had on both of them. Today he shares part 2.

Written by, Neils Knudsen

Our search for a new home for ourselves ended when we found a development with new construction. A site was chosen and the contractor was eager to make the changes we needed for Judith. In January of 2005 she removed her clamshell brace for the last time and we moved in to a home with a view.

Judith at glacier (3)

Judith at glacier 2006

Judith was excited for the new beginning. Although the doctor visits, medications and surgeries continued for some time, life for her became more peaceful and satisfying. She was free of her constraints and could now test her new wings . . . and wheels. That cruise to the inside passage of Alaska was realized and she began to see a larger, more magnificent world.

The home scene, though more comfortable soon clashed with my work schedule. My normal work hours grew longer along with mandatory overtime on weekends. I couldn’t meet the demands of home and work.

We discussed our options and in April of 2006 I took an early retirement and Judith decided she would return to her old job part-time. I quite enjoyed the change and got a lot of insights into her career.

Construction of other homes was still underway in our development. Hammers, Skill saws, heavy equipment and tons of dust covered the streets and vehicles. It was difficult for Judith to be heard at a distance during the day.

“Neeeeeeee-ills.”

I lifted a handful of clothes out of the washing machine and paused, listening.

“Neeeeeeeeeeeeeeeee-ills.”

I tossed the wet laundry into the drier and ran upstairs in a panic.

“What?” I clutched my knees and panted breathlessly. “What’s wrong?”

She sat at the kitchen table and took a sip of her coffee, the morning paper opened to the daily crossword puzzle. “Hey you,” she smiled, “what’s a 6 letter word for ‘Spring’?”

“Neeeeeeeeeeeeeeeeee-ils.” The unmistakable sound of a power saw knifed through my mind. It turns out, if you stretch my first name out as if you’re calling for me it sounds much like a power saw cutting wood. Add a touch of nasal cavity to it and it truly becomes a power tool.

“I didn’t call you,” she guffawed and pointed out the door. “They did.”

We began to travel, mostly by car. Judith had always been an easy traveling companion and that didn’t change. We no longer rushed to go places, often stopping to explore as we went. She sometimes grew wistful as she watched others strolling together at a scenic overlook. That prickly, stubborn and ‘always in a hurry’ woman had changed. She came to appreciate that what she had gained was equal to what she had lost and accepted a more measured and contemplative attitude. Soon, that new life would include painting the scenes which she now saw with new eyes.

The visits to doctors and hospitals subsided to an occasional check-up. She learned to touch and be touched. Gentleness and acceptance of life grew to replace her ambition. She retired from her job and began to focus more on her art.

Judith is also an avid reader and has a degree in English. She has distinct tastes in what she selects as a reading subject. Unfortunately we don’t share those tastes to any notable degree. So when I started writing as a hobby I chose Science Fiction and Fantasy as my genre. She once tried to read “The Hobbit,” but got bored with it. The same with “Lord of the Rings,” though she loved the movies.

Four years later I finished my first book, The Singing Stones of Rendor. Credit for that project, including all its awards, would likely not have happened if not for Judith. Her gentle prodding, encouragement and constructive criticism was the gas in my tank. I repeatedly tried to kill off one character, but she argued against it—often to the point of bloodshed. I’m glad I listened to her. The arc of the story would not have developed and garnered so many trophies, if any, without her insights and skills at knowing what makes a good story.

My wife is, for the most part, independent and needs little in the way of any physical help to do things. I still help her with some of her transfers on occasion, but not often. The day will come when she’ll need more help. I expect I’ll need some help by then myself. She is the light in the tunnel, the gentle whisper in my ear, my tease, my best friend and motorized mentor who runs over my toes when I get curmudgeonly.

Alaska Cruise 2006 (3)

Alaska Cruise 2006

Judith has never given up. She always listens to people’s stories and encourages them to fight on. The impact she has had on the people around her is best illustrated by a young man she mentored while she worked on Wall Street. He went on to establish his own hedge fund and became a wealthy man. When he heard of her accident he flew here to visit her in the hospital. Later he would establish a scholarship fund in her name at Utah State University which is awarded annually. It is a fitting tribute to this woman who has given, and still gives, so much of herself to help those around her.

My part as a caregiver is insignificant compared to what Judith offers. So, I ask again, who is the real caregiver?

What I can say for sure is that I have been dancing with class.

Thank you Neils for sharing your heartfelt journey. I appreciate getting to know you and Judith better. I agree, you have been dancing with class. 

Dancing with Class, part I

Written by, Neils Knudsen

2004, Neils Judith. Picture taken a few months before the accident.

Neils & Judith 2004, a few months before the accident.

I’m not sure who the caregiver is in this marriage. My wife, Judith, who suffered a serious spinal cord injury in 2004, has given back more than I’ve ever given her. It didn’t always seem that way. In fact we were near divorce at the time of her accident.

We met one cold Tuesday night in February, 1997 during a dance class at the Murray Arts Center. I was two years into the single life after divorcing my first wife of 23 years and still trying to rediscover myself. She had seen ten years since her marriage ended.

Since there were more women in the class than men we were supposed to change partners from time-to-time. I tried to avoid her. She was clearly too much for me. That tall, slender and quite buxom woman would eat me alive and steal my lunch money. She fit a stereotype which I couldn’t afford, financially or emotionally. No problem, I thought. Those other guys are clamoring for her attention.

They tried . . . oh how they tried, but to my horror she shunned them and zeroed in on me.

Why me? I don’t have anything she wants, I thought.

Over the course of that evening, and many more to come, we became partners. This woman actually had a sense of humor similar to mine. She bantered with me. She teased me and, more importantly, I could actually tease her back. I was hooked. We married in October 1997 and moved to New York City where she worked once again on Wall Street for a young man who was once her protégé.

Judith grew up in a large Wyoming farming family. They were poor which only made her stronger, harder working and more determined to pull herself out of that circumstance. She was the middle child between four brothers and four sisters who gave no quarter and expected none in return. Competition was not new to her, but ambition would pull her out of, not only poverty, but an abusive marriage.

I relate this part about her life because it helps illustrate who she really is . . . a woman of strength and good character, of love and deep compassion. It also helps to tell you of where she was in her life when the accident happened.

As usual, Judith was prickly, stubborn and controlling the morning of Friday, July 2, 2004. She didn’t want to be and said as much, but life had pushed her there and it was hard to put aside.

A year of marriage counseling and an on-again, off-again relationship was coming to a close. I was working a weekend graveyard shift. She was beginning a long Fourth of July weekend.

She had gone on a bike ride with her cycling club. When I got home that morning I unplugged my phone, closed the windows and drapes, went to bed and quickly fell asleep.

My daughter shook me. “Dad, wake up.”

I hated to be wakened during my work week for no good reason. There never had been before, why now? “What?”

“Judith’s been in an accident,” she said as she plugged my phone in. It rang.

I answered it. It was Judith’s best friend, Gloria. The story she told chilled my bones. “Judith lost control of her bike and flipped into a ditch. Her back is broken. She’ll never walk again.”

“Are you sure it’s permanent?” I asked, hoping for some good news. “Sometimes these injuries are temporary.”

“Yes,” Gloria said.

My heart sank, but I still held out some hope. I got dressed, called my workplace to let them know I wouldn’t be in that night and then drove to McKay Dee Hospital in Ogden with my daughter.

The news of Judith’s bicycle accident had preceded me. Her mother and most of her siblings waited in what I soon learned was the ‘cry room’. They told me others who lived in far flung states and countries were on their way.

I joined them as we waited and hoped for a chance to see her. I cried.

An eternity later Judith’s daughter, Aimee, emerged from the ICU. She updated us and then turned to me. “She wants to see you.”

“Me?” I searched the bewildered eyes of her family. They seemed as surprised as I was. I followed Aimee through those impassable doors that led to . . . what? I held onto a prayer that I could hold back the tears when I saw her.

The nurse came out of Judith’s room as we approached. She said something, warning me about something, and something, something, something and I could only stay five minutes. “So little?”

She seemed asleep when I saw her. Scrapes covered her face. Bandages shielded her nose and forehead. Tubes strung from her mouth.

I leaned over and caressed her temple.

She opened her eyes and looked at me.

God denied my prayer. I wept.

Her eyes glistened and smiled.

God answered a prayer I did not know I made.

I saw deeper into her soul than ever. I saw the gentleness she always wanted to have. She would let go of her past.

(Editorial Comment from Judith) “At this point, I have to give you the other side. I knew almost at once when the bicycle flipped me head over heels and I landed on my back that I was paralyzed. When Neils came in, I was battered and bruised and hadn’t even begun to deal with what it all meant. When our eyes locked I smiled mostly in wonder because I could see love, a physical manifestation, as a light with many colors streaming from his face. I knew that we were together, united and I was safe, as I had never before been safe.”

The five minutes I was given became an hour. I thanked the nurse for letting me stay.

Aimee would later ask me if I could deal with being her mother’s caregiver.

“I will do this,” I said.

The next day Judith’s daughter April arrived from Arizona. The day after that her son flew in from New Zealand. The three of them took charge of insurance, doctors, the hospital and things I knew nothing about.

A week later she moved to a regular hospital room. The family continued to visit and her friends and coworkers often filled her room. As word of Judith’s accident spread, flowers flooded in and spilled into the hallway.

I did not, until that moment, know how well loved and respected she was.

“Why me? Of all the men on that dance floor, why did she pick me?” This woman who was so well regarded at her work and had such a wide ranging set of friends chose some dolt like me. Doubts about my ability to be a suitable caregiver crept in. She had a lot more support and resources available than I could give her.

Judith, 2004

Judith with her granddaughter, 2004

Eventually she left the hospital and went to a rehab center. We put our home up for sale and began looking for something more wheelchair friendly. At this point my real caregiving skills were yet to be tested.

The day finally came for her to come home wearing a clamshell brace which covered her from chin to tailbone. She hated that device, but at least she was out of the hospital. Home healthcare services were set up and I continued to go to work. My shift work and 14 hour workdays weighed me down. The physical issues Judith had were not unlike that of a newborn baby. The changes in her body functions required frequent attention. Preparing meals, bathing and nurturing were not unfamiliar, but the intensity of it was.

Judith has never been a complainer, but she did have days when her outlook suffered terribly. I tried to give her some hope of new adventures with stories about the wonders I’d seen while in the Navy. We soon planned a cruise to the inside passage of Alaska.

More doctor visits, hospital stays and surgeries added to the time demands. The emotional impact on Judith of these trials stressed her ability to cope. There seemed no end in sight.

Word soon came that my mother, who lived near Seattle, had developed dementia. She wanted to return to Utah. I couldn’t deal with it. Fortunately, after weeks of searching for a facility to care for her, my brother accepted that challenge and looked after her. Nevertheless, as the years went by, watching her decline was difficult. We were by her side when she passed away peacefully in 2010. I’ll always be grateful for that.

Thank you Neils and Judith for sharing your story. We look forward to next Sunday, part 2.

 

Greg Nordfelt’s Story

Laura & Greg

Image credit: Greg & Laura 2011

One of the benefits of my caregiving journey is the people I meet and have the privilege to rub shoulders with. I met Greg and Laura Nordfelt at the 2013 Annual Brain Injury Conference. Immediately, our hearts connected when they shared their story with me. The circumstances which caused Greg’s traumatic brain injury (TBI) were different from Mark’s, but the feelings and experiences with therapy and the fight to return to a familiar way of life are very similar. They agreed to let me share their story on Uniting Caregivers in March of 2014, Greg and Laura Nordfelt’s Story. We have kept in touch over the past two years and I’ve enjoyed my friendship with them. Watching this couple grow and seeing the amazing outreach they both give to others inspires me. Thursday, September 17, 2015, Greg shared more of his story with Channel 4 News. With their permission, I share what Laura writes and the Channel 4 News interview.

“I am so proud of Greg Nordfelt and this interview on Thursday with Channel 4 news. Most of the recording ended up on the cutting room floor, but what showed was a glimpse of what he has been through in the last 4 years with his recovery process. More than all of this is the amazing job he has done volunteering with the TBI patients since then at TOSH, who meet twice a week working through their aphasia issues. On top of all this, three weeks ago he started volunteering at Intermountain Medical Center (IMC) on the very floor where he learned to get his life back with Physical, Occupational and Speech Therapy, giving hope to TBI patients and their caregivers. This is my sweet, giving and incredibly loving husband. xoxoxo .”

http://www.good4utah.com/news/local-news/new-study-provides-better-treatment-for-traumatic-brain-injury-patients

Greg & Laura

Image Credit: Greg & Laura 2011

I appreciate the inspiration Greg and Laura give to everyone who knows them. I am grateful for the awareness of TBI they spread by sharing their story. Together they are a powerhouse and are making a positive difference in our community. I can’t wait to see what they accomplish next. They are wonderful and I’m blessed by their friendship. Ride on Greg and Laura!

It’s Not About Me

It’s my pleasure to introduce you to my daughter’s father-in-law, Chuck Ferguson. Chuck was a caregiver to his wife, Susan, until she passed away from cancer in May of 2003. He cared for her in their home in Richfield, Utah. When she died, they had four grown children and five grandchildren.

Written by Chuck Ferguson

It wasn’t supposed to be that way. Of course, I suppose it never is. When Susan was diagnosed with cancer, it seemed like the end of the world. It was a devastating blow.

Nurse Susan Ferguson, 1972

Susan Ferguson, 1972

It also was a reversal of roles. As a nurse, Susan had been a caregiver since before we were married. She had helped countless patients who were suffering through hard times with a gentle touch and a heart of gold. Now it was suddenly I who was cast into the role of caregiver. It didn’t come easily.

This past July 11th marked 45 years since Susan and I were married in the Oakland LDS Temple. Marriage to Susan was the best thing ever to happen to me. She was the best part of me, and her spirit still is.

It was just before our 29th anniversary that Susan was diagnosed with breast cancer. It came as a shock to our entire family. Susan had regular mammograms every year, always coming up negative. Nevertheless, she had a feeling that something was wrong and decided to have a biopsy. The results showed her at stage 3 breast cancer. Apparently, calcification had masked the cancerous growth.

Despite the bad news, we tried to maintain our normal routines while sandwiching in Susan’s treatments. We tried to keep a positive outlook, pinning our hopes on an experimental stem cell program that seemed promising.

Susan first received four regular courses of chemotherapy. The program then required Susan to be in the hospital for about a month, then another couple of weeks in offsite housing. Between the collecting of stem cells, and the procedure of intense “near death” chemotherapy followed by reintroducing the collected stem cells for recovery, the whole experience could be described as nothing less than torture. After all that, surely the cancer would be defeated.

And so for several months after the treatments we carried on a “normal” life. However, within myself there was a constant undefined feeling of uncertainty, near inner chaos. Looking back, I can see that it affected me in everything I did. I think I knew that, as much as I hoped otherwise, I had a certain sense of inevitable doom. And with it there was a selfish feeling of, “why me?”

Not long afterwards, Susan started having an ache in her hip that would not go away. X-rays showed a fractured hip caused by bone cancer. An oncologist made it clear that the cancer had spread and that Susan was terminal.

It took me a while to overcome the “poor me” syndrome. But finally I began to realize and internalize what became my mantra – “It’s not about me.” It was difficult to be in the ironic position of caregiver for the woman I considered the best caregiver I had ever known. Trying to live up to the standards that she had established as a caregiver were often frustrating. I was required to do many things for which I had very limited training. Fortunately I had the best possible teacher, Susan.

Ferguson Family, 2002

Ferguson Family, 2002

The next three-and-a-half years were the best years of our marriage as we made the most of the time we had left together. We traveled the world and enjoyed special times with our children and grandchildren. It wasn’t always easy for Susan. Sometimes she was sick, sometimes confined to a wheelchair, often tired, or in pain from the medications and treatments. I did my best to meet Susan’s needs, whatever they might be. Frustrations became challenges, and challenges became opportunities to serve the woman that I loved so dearly.

Being a caregiver for Susan demanded a lot—physically, mentally and emotionally. It demanded more than I ever imagined I could endure. But it was easier whenever I looked into my Susan’s eyes and reminded myself, “It’s not about me.”

Thank you Chuck for sharing your story and for reminding us that our challenges are opportunities to serve the people we love. I’m grateful for you and Susan and the four wonderful children you raised together, especially Eldin, who happens to be my favorite son-in-law. When Katie Mae and Eldin were engaged, I knew it was a good match. They both grew up with a parent giving care to another. I love your reminder that caregiving, marriage and life in general, is not just about me.

Chuck remarried the following year and lives with his wife, Suzie, and their daughter, Katie, in the Salt Lake Valley. I appreciate him sharing this heart-felt message with us!

Learning the Languages of Love

Written by, Katie Wilson Ferguson

Love Language1The most life-changing book I’ve read is “The 5 Love Languages” by Gary Chapman. In less than 200 pages, Chapman taught me how to better understand every relationship I’ve had. While the original book is targeted to married couples, the information has also helped me in my relationships with family, friends, clients and business associates.

In short, we usually show kindness in our own love language. Those expressions might not be fully understood if the recipient doesn’t share the same love language. The two biggest points the book taught me are:

  1. My love and care for another individual is better understood when I express it in his or her love language rather than my own.
  2. I better recognize others’ love and care for me as I remember they are expressing themselves in their own love language rather than mine.

In my last article, A Village of Support, I shared how family and friends showed support to my family after my mom had surgery and while I was taking care of my dad. These kind loved-ones were probably expressing their concern for us in their own love languages.

The 5 Love Languages taught throughout the book are:

Words of Affirmation

Loved ones sent my mom cards with encouraging, thoughtful messages. My parents showered me with gratitude by thanking me and complimenting me several times a day.

Quality Time

Some friends showed they cared with a personal visit or phone call.

Receiving Gifts

My maternal grandma and other family and friends sent my mom flowers. My paternal grandma sent a box of homemade cookies.

Acts of Service

Friends and family showed us love by bringing dinners. I showed my love by caring for my parents and doing some housework.

Physical Touch

Some great examples of this love language are backrubs, snuggles, kisses and holding hands. This isn’t just applicable to romantic relationships. 

I have two love languages: Acts of Service and Quality Time. I appreciate compliments, gifts are nice, hugs feel good, but nothing says I’m loved more than these two questions: “How can I help you?” and “Want to go to lunch on Saturday?” Likewise, nothing frustrates and hurts me like an unfulfilled promise or last-minute broken commitment.

love LanWe express all the love languages at different times and often express multiple love languages on one occasion (for example, visiting a friend and taking a gift). However, some love languages feel more natural than others, so those are the ones we use most frequently.

What is your love language?

To learn more about The 5 Love Languages and to discover your own love language, visit: http://www.5lovelanguages.com