Laura’s Story

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. 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?

My 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.

Mom 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.

Two 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.”

Until 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. 

Modern-Day Pioneers

July is fantastic in Utah, full of outdoor activities and celebrations that last all month-long. It’s my favorite time of year and I always look forward to all the festivities. The sun rises early, which makes it easier for me to do also. The weather is usually sunny and the daylight lasts until 9 pm, making this month the one I can accomplish the most outside. After a wonderful Independence Day celebration of carnivals rides, energetic music, food trailers and beautiful fireworks, our state gets ready for Pioneer Day.

Image credit: http://www.daysof47.com/events/days-of-47-parade

There are parades, rodeos, pioneer reenactments, outdoor concerts and/or movies at the city parks and contests of all kinds put together by many cities and communities throughout the state all month-long. All these festivities are gearing up for an even bigger state celebration. The best contestants of the cities qualify for the state and we all come together every year on July 24^th for a massive parade containing school marching bands, police academy on motorcycles and marching military soldiers often with their tanks. Community groups, businesses and churches design and build colorful floats for the parade. Gorgeous horses prance down the street, while others are pulling restored wagons. City officials and beauty queens are on floats or riding in convertibles. There are always funny clowns to please the thousands of people who line the two-mile parade route. Many families camp on the street the night before to ensure the perfect spot for viewing the parade. It’s a big deal here in Utah and fills the month with entertainment. Why do we do this?

Image credit: maidensmission.zionvision.com

In 1847, Brigham Young and a group of Mormon pioneers arrived in the Salt Lake Valley on July 24^th. When Brigham first saw the valley, he declared, “This is the right place.” After pulling handcarts or driving wagons with oxen or horses across the plains more than a thousand miles, the pioneers were happy to settle the desert landscape now known as Utah. We celebrate in honor of their hard work and the sacrifices made to till, cultivate and make this new frontier into the beautiful state that it is. Their trek exemplifies courage, faith and foresight and their stories inspire me as they are retold.

They endured harsh weather, death of loved ones and starvation as their food and water supply diminished.  Nothing had prepared the majority of these travelers for the exhaustion and illnesses they would suffer. They were beginners, in a new territory, learning a new way of life.

I see similarities between my caregiving trek and my pioneer ancestors who walked approximately 1,248 miles from Nauvoo, Illinois. Although we have the comfort of a home with plenty of food and water, nothing had prepared me for the anxiety and exhaustion of caring for another or the many illnesses that would arise. I’m a beginner, in a new territory, learning a new way of life that most people do not understand. I am a modern-day pioneer and so are you.

Gratefully, I haven’t seen wolf-pawed graves of the dead or the putrefying carcasses of mules and oxen on my journey. However, worry and heartache has come from the pain and suffering I’ve seen in hospitals and rehab centers. Only faith for improvement keeps one enduring through such difficult times.

Splintered wrecks of discarded carts or wagons have thankfully been absent on my journey, but I have worried about individuals whose family and friends have abandoned them in their illness. It saddens me and makes me wonder what happened to drive their loved ones away. Was it the ailment itself or the attitude of the afflicted person—either way, it’s troublesome.

The pioneers traveled in groups or companies. They rallied around each other, helping one another in their journey. They needed and depended on each other for survival. There are many stories written of selfless, helpful acts that saved another’s life. They mourned and rejoiced together. Likewise, I appreciate the help and support I get in my journey from friends, family, church and support groups. In return, I strive to give back the same to those around me.

The handcart plan was for seventeen miles a day for sixty days, but none of the ten companies could reach that goal. Despair and frustration must have come from the slow journey of seven to fifteen miles on a good day, making the trip tedious and wearisome. Today we can make the drive from Nauvoo to Salt Lake City comfortably in an air-conditioned or heated car in nineteen and a half hours. However, we know the disappointment which comes from unachieved goals and have felt the discouragement from slow progress, along with the worry that comes from an uncertain destination.

The pioneers didn’t know how or when their journey would end. Similarly, we don’t know how or when ours will end either, but like our ancestors, we can carry on with faith in every footstep and hope in a brighter future.

We modern-day pioneers celebrate small victories just as the cities in Utah party a few weeks before the state’s grand celebration. Some of us modern-day pioneers are still waiting for the grand celebration with trust that it will come. If not in this life, a belief that we and our loved ones will be blessed beyond the grave, free from the harsh physical ailments. With confidence, I believe this celebration will be far grander than I’ve ever witnessed and possibly can even imagine.

Feel the Fear and Do It Anyway

In May, my daughter, Katie had her hands full as she cared for me and her dad. I’m thrilled she accepted to be today’s guest author. 

Written by, Katie Wilson Ferguson

2015, Katie on the zip line at Park City, UT

My recent caregiving experience reminded me of a chilly afternoon on March 1, 2015 when I stood on top of a 65-foot high tower in Park City, Utah. The mountain air smelled fresh. Some of the snow from the previous day’s storm was melting. The view was gorgeous.

With my helmet on, I was strapped into a harness clipped onto a 377-foot long rope. Just one step off the platform and I’d be zip lining above the treetops to the second tower.

What if the rope breaks? I thought to myself. What if my harness comes undone?

Feel the fear and do it anyway, I told myself as I stepped off the platform. I gasped and held my breath until I felt the rope catch my harness. I looked down to enjoy the mountain scenery as I glided above the pine trees.

I made it to the second tower where a young man greeted me. “How was it?”

“It was scary!” I replied, knowing the scariest part was about to come. The only way down from the second tower was to step off the platform for a 65-foot vertical drop.

“Just walk off the platform. Don’t run or jump off. If you’re scared, don’t look down,” he said as he fastened my harness to another rope. The rope went straight to the ground where another employee and my husband were waiting for me.

Feel the fear and do it anyway, I reminded myself. I walked off the platform before I could talk myself out of taking the plunge. I heard screaming, then realized the racket was coming from my own mouth.

2015, Katie plunging from the drop tower, Park City, UT

I didn’t stop screaming until I made it to the ground safely. I was shaking from fear, excitement and the pride I felt from conquering my fear. I smiled at my husband. “Did you hear me screaming? I wanna do that again!”

“Feel the fear and do it anyway,” is a saying I picked up at a personal development seminar several years ago. It’s also the title of a personal development book by Susan Jeffers, which I haven’t read yet. The statement reminds me it’s okay to feel scared, but it’s important to accomplish what I set out to do before I talk myself out of it. I’ve learned my confidence grows when I achieve goals that scare me. As I prove to myself I can accomplish an intimidating task, my comfort zone expands and I feel it’s possible to do even greater things.

A of couple months after my zip lining adventure, I moved in with my parents for five weeks to take care of my dad while my mom recovered from hernia surgery. Because I’m a self-employed graphic designer, I had the ability to pack up my home office to work and live at my parents’ house. My husband and I decided it would be best for him to continue living at home with our dog during weekdays and they would stay with me at my parents’ house on the weekends. Shortly after making the commitment, my mind became consumed with fears.

How will I stay on top of my work while caring for my dad? What if the experience creates friction in my marriage? What if it causes contention between my parents and me? My biggest worry was—What if I drop my dad while transferring him into his wheelchair or bed?

Dropping my dad might seem like an unusual fear, but I felt it was well justified. In October of 2011, my dad fell off the side of his bed twisting his ankle, which resulted in a bad sprain and torn ligaments. My mom usually stands my dad up when she transfers him, but he couldn’t put weight on his injured ankle. It was difficult for my mom to take care of him, so I stayed with my parents a few days after the injury to help my mom.

My dad is already prone to seizures, but his susceptibility heightens when anything else goes wrong in his body. Even when he catches a common cold he has more seizures. My dad had to endure the pain of his sprained ankle in 2011 and the additional seizures.

I knew if I dropped and injured my dad it could cause him pain, which could cause him to have more seizures. I was worried I wouldn’t be able to care for him on my own.

Those fears and dozens more were buzzing around my head for days following the commitment I made to take care of my dad. I decided to hush my fears by typing them out as they popped into mind. The worries spewed out of my head, through my fingertips and onto my computer screen. I reversed my list of fears by writing a story about the outcomes I wanted. I turned my worry of dropping my dad into statements like: “I am able to transfer him safely and with confidence. I take excellent care of my dad.” I re-worded my concerns of feeling contention with my husband and parents into, “My parents, husband and I communicate effectively…so there can be peace in our homes and lives.”

Being a spiritual and prayerful person, I took what I wrote and prayed for God to help me be successful.

A couple days before my mom’s surgery, my husband and I went to my parents’ house to learn how to transfer my dad in and out of bed and to discuss his daily and weekly schedules of care. I helped my mom dress him many times while I was growing up. As children, my brother and I helped get my dad into our family car before we got a van with a wheelchair lift. I’d seen my mom transfer him hundreds of times. Because my dad is tall and stiff, I never wanted to transfer him by myself. My mom is stronger than the average woman and I didn’t think I had the physical strength to transfer him on my own.

My mom gave my husband and I some pointers on how to successfully transfer him and then asked who wanted to practice first. Eager to get it over with, I volunteered. My dad leaned forward in his chair. I faced him, squatting to keep my back straight. I put my forearms under his armpits and my palms on his shoulder blades. His hands were on his armrests so he could push up. Feel the fear and do it anyway, I thought.

“Okay Dad, ready? One, two, three.” I pulled my dad up as he pushed off his wheelchair to stand up. He and I pivoted his body so I could sit him on the side of his bed. We did it! I conquered the fear before I could talk myself out of it. My comfort zone expanded and I had more confidence to move into my parents’ house and put our plan in motion.

Katie, I love you and this analogy, but you obviously didn’t get your sense of adventure from me. Just looking at the pictures makes me gasp. I’m glad that’s crossed off your bucket list and hope you don’t do it again. However,I appreciate your ability to overcome fear, especially the one of transferring and taking care of your dad. I enjoyed reading your point of view and imagine most caregivers at first feel the fear of that plunge and do it anyway. I can’t wait to hear the rest of the story next week!

The Blessing of Comfort

April 27, 1991

“I know what you’re going through,” said the EMT at my side while the other one drove the ambulance to the hospital. “I just lost my wife three weeks ago,” he said in a somber voice.

“Mark will be okay,” I said as he placed the oxygen tube in my nose and checked my heart rate and blood pressure. He has to be okay, I thought. I can’t live without him.

“Is there anyone we can call for you?”

“Yes,” I replied and recited my parents’ phone number.

No answer confirmed my earlier fear they had already left with our two kids to pick up my 14 year-old niece, Linda. She had agreed to watch Christopher and Katie for the evening until we returned from our all day house hunting adventure in Ogden, Utah. I envisioned Mom and Dad in the front seat of their 1979 gray Chevy car with the three kids in the back seat.  Like a snapshot pictured, I saw all five of them happy, healthy, and unaware that our world had just turned upside down as they made their way to our home in Sandy, Utah. They were sixty miles away and I knew it would take at least an hour for them to get to us. They were uninformed of how much I needed them and how far away they all seemed to be. Yet in that moment, I wanted to protect all five of them from this devastating news.

After several rings, the EMT interrupted my thoughts, “Is there another number we can call?”

Still struggling to breathe from the blow to my shoulder and chest, I simply recited my brother’s home phone number. I was surprised by my memory of phone numbers and calmness under such horrific circumstances. I knew God was blessing me.

“Hello,” I heard my sister-in-law, Dianne’s voice over the speaker.

“This is the paramedics in Roy City. Do you know Mark and Barbara Wilson?”

“Yes,” Dianne said, sounding apprehensive.

“They have been in a very serious automobile accident and we are transporting Barbara to McKay-Dee Hospital in Ogden and another ambulance will take Mark there. We have tried her parents’ phone number, but there was no answer.”

Dianne anxiously assure the EMT she would let them know and the quick call ended.

She immediately called my oldest brother, Mick, at work. Since Dianne was home, she knew when my parents had picked up her daughter, Linda and realized they probably had time to drop the kids off at our house and were in route to their home. Mick told Dianne he wanted to go to the hospital with our parents so he called their phone number and since they didn’t have an answering machine he just left it ringing for several minutes until they returned home to answer it. As soon as they got the news, they cancelled the dinner date they had and headed for Salt Lake City to pick up Mick and the three of them drove together to McKay-Dee Hospital.

McKay-Dee Hospital in Ogden, Utah

After the x-rays and removing pieces of glass from shattered car windows from my ears with tweezers, a compassionate nurse asked me if there was anyone she could call for me. I knew it would be at least an hour before my family could get to the hospital. I didn’t even know who knew at this time other than Dianne. I thought of a close childhood friend who lived in Ogden. I told the nurse I did not know their phone number, but if she could look up Darlene and Dixon Pitcher’s phone number, I would appreciate it.The nurse left the room to make the call while another one fitted a patted figure eight brace which wrapped around the back of my neck, under my armpits and fastened in the back to secure my broken collarbone. Broken pieces of glass were all over my body,but not one cut. How strange, I thought as I looked at my bruised body while the nurse cleaned the glass off. Next she brought a sling for my right arm and adjusted it to my size.

“Would you like some medication for the pain.”

“No thanks, I don’t need any,” I said numbed to any feeling.

The nurse was just finishing up with me when Dixon and his friend came to the hospital. I was relieved to see a familiar face. Recalling the frightening words from the surgeon just before he took Mark into surgery, I was terrified of what laid ahead. I asked the two men to give me a Priesthood Blessing. I didn’t know Dixon very well and had never met the friend he brought with him. It was Dixon’s wife who had been my childhood friend, but he knew just what to say and his blessing brought solace. They sat with me for a while after the blessing. I was so stunned by the experience I don’t remember what was said, but I do remember the comfort these two men brought. My broken heart was full of gratitude for them.

The nurse came back in the room and handed me a large plastic bag with Mark’s belongings. Inside was his cut clothing, shoes, wallet and watch. She explained to me in the rush for Mark’s MRI and surgery, they cut the jacket, shirt and pants from his body. She told me Mark would be in surgery for a while and I was free to wait in the waiting room.

I thanked Dixon and his friend for the blessing and visit and assured them my family would be on their way. I didn’t want to keep them from their Saturday plans any longer and told them I’d be fine, so they left. I sat for a moment on the edge of the bed in the emergency room, alone and oblivious of the other crises going on in the other rooms. I wondered how I’d make my body move. I didn’t feel pain, emotion or drive. I felt dead and consumed with despair. This must be a nightmare, I thought. Surely I would awaken soon and life would go on as planned.

Divine intervention must have given me the strength to grab the plastic bag of Mark’s belongings with my left hand as I mustered up the will to get off the bed and walked aimlessly out of the  room into uncertainty, still wearing the hospital gown for my shirt. I looked down the hall and saw some swinging doors at one end. Unaware of anyone else in the hallway or in the rooms I passed, I walked devastated and all alone through the swinging doors into the main area of the hospital. To my relief, there stood my brother, Mick, at the information desk, talking to the receptionist. Mom and Dad stood behind him and noticed me. Immediate comfort came from the sight of them. Gratefully, I was no longer alone in this nightmare, but unfortunately…that also made it more real as my family poured love and life back into me.

The Unthinkable

It’s Saturday, April 27, 1991. The alarm went off at 7 a.m. and as I wiped the sleep from my eyes, I turned off the alarm. I looked out the window at an early spring, stormy day, which only added to the desire to stay in bed. Lying next to me was my husband of twelve years. Mark was slender, tall, with dark hair, which was thinning on top. His handsome face was complemented by a dark, well-trimmed beard and mustache. He liked to defend his facial hair by saying he had to grow it where he could.

Mark had a terrific sense of humor, which was another one of my favorite traits.  He was not only quick-witted but smart. He got straight A’s in college and passed the three-part test for his Master Electrician’s License on his first attempt which was uncommon.

At age thirty-five his career as an electrician was going well. He loved his work and couldn’t imagine doing anything else. His new dream job of just a few months was located in Ogden, Utah, about 60 miles from our home in Sandy. The hour-long drive each day to and from work became tiresome quickly, so we sold our home and were looking to buy a new one closer to Ogden.

After a stressful, long week of driving to Ogden every day with Mark, I just wanted to stay in bed and rest a little longer. But we had a major decision to make this day. The closing on our Sandy home was scheduled in three weeks. Our goal was to meet with the realtor and show Mark my three favorite homes and make an offer on one of them.

Mark anxiously got the kids up and after a quick breakfast, we all got dressed and rushed out the door to our Hyundai Excel. Our two children—Christopher, eight years old and Katie, seven—were sending the day at their grandparent’s house while we completed our house hunting search. We dropped them off on the way.

We arrived at the Realtor’s office and he drove us to three different locations around the Ogden area. We looked at my three favorite homes. Each one was nice and by lunch time we were still uncertain which home would be best. We decided that Mark and I should go to lunch and discuss our options and drive past each home one more time. We told the Realtor we would definitely get back with him in a few hours to make an offer on one of the homes.

As we finished our lunch, Mark suggested I drive since I had spent the past week with the Realtor and was more familiar with the area. He handed me the keys. Back in the car, we put our seat-belts on as we always did. We drove first to a home in Uintah, and then headed west to Hooper. After driving past the second home, we headed east towards the third home which was located in Ogden. We were driving on a country lane and stopped at the sign on the intersection.  Mark pointed at a subdivision across a main four-lane road in front of us.

“I think the home is just over there,” he said while looking down at the Realtor’s list to double check the address.

I pulled forward, not realizing a full-sized pickup truck was coming from the right, and unfortunately the intersection was not a four-way stop. I don’t believe Mark ever saw the truck that hit his side because there wasn’t even time for a gasp. The truck pushed us across the intersection and into a power pole which crushed the area just behind my seat, which left both sides of the car smashed. I realized we were pinned in the rubble and immediately I thanked God that the kids were not with us.

Mark was in the passenger’s seat when the accident happened.

Drivers side where power pole hit

Mark, still seat-belted in the passenger’s bucket seat, was forced behind me by the impact of the truck. I don’t remember the powerful blow his head obviously gave my chest and right shoulder as he was forced behind me by the impact.  All windows were broken and gone. The hatchback door was pushed open by the collisions on both sides, and Mark’s tools were scattered all over the road. Even though I couldn’t see Mark’s face, his complete silence told me he was unconscious.

I was aware of many people around the car trying to give assistance.

“Are you ok?” they asked.

In shock I said, “Yes,” but realized something was definitely wrong with my shoulder or collarbone because my right arm was hanging abnormally and I really struggled to breathe.

Anxious people, trying to help, reached through the empty window frames for Mark. I couldn’t believe the murmuring I heard.

“I can’t find a pulse,” one said.

And another; I can’t find one either.”

One was so bold to say, “I think he’s dead!”
Since Mark was pushed directly behind me from the waist up, all I could see were his strong hands resting on his thighs where he had been holding the Realtor’s list. I gently held his left hand and prayed silently and more sincerely than I had ever prayed before.

Please Lord, let Mark live. I can’t live without him. Please let him live.

An answer to my prayer and a sign to me that he was alive, I heard a quiet gurgle from behind me.

My struggle for each breath made me wonder if I would live. I thought of our young children, we have to live for them! Keep breathing, don’t die and don’t pass out. Please Lord, help me breathe, help me stay calm and alert. It was fearsome to have to concentrate on each breath.

I was aware of the paramedics and police approaching our car with a big crowbar and saw. One EMT asked me if I was okay, as he pried open the door.

I said “yes”, too shocked, too sick to show any emotion. I was unnaturally calm and I knew it. I felt I was having an out-of-body experience; like I was watching all these people administering to us rather than being in their midst.

“Can you walk to the stretcher?” the EMT asked as he helped me out of the car.

“I think so, but what about Mark?”

“We have another ambulance for him.”

“But he isn’t even out of the car yet, I can’t leave him.”

“They’ll get him out. We need to get you to the hospital.”

I am sure the stretcher was just a few steps away, but it felt like a long distance. I looked back at our unrecognizable car with many people around it working to get Mark out. In this unthinkable moment it was impossible for me to realize just how drastically our life would change and what we had expected would not be fulfilled. Nor did I realize the grace and love I would see in other people and the blessings that would be ours because of it.

This day effected me like no other and hopefully changed me for the better.

The words of “Beautiful Heartbreak” perfectly express how I feel about this day.