Laura’s Story, Part 9

Written by Christine Scott

It’s with mixed emotions I sit down to write this last segment of Laura’s Story. As I search for the appropriate words to explain the concluding years of Laura’s life, I pray for courage to confront the painful memories surrounding her death.

Life changed as my family grew. In the early years of my marriage and family life, I included my mom and Laura. It was easy. My family was small and young. We made time for them. We fit our lives into theirs. As the years progressed my kids became involved in various activities. Soon sporting events, dance recitals and school activities crowded our schedule. It was never easy for my mom to bring Laura to these types of activities. We drifted apart, but sometimes we’d go out to eat and we always spent the holidays together.

Nate, Christine, LeRoyne, Laura, Eric, and Mom at Silver Lake

Weeks went by where I didn’t talk to my mom. I stopped inviting her to my kid’s activities because she always had a reason not to attend. I think she felt relieved when I stopped asking, but my heart ached for her to be a part of my kid’s lives.

While Mom worked, Laura attended a sheltered workshop where she assembled kits. Laura’s behavior at home was still pretty bad. She often spent all day refusing to get dressed and making it so my mom missed work and important events like my kid’s baby blessings and baptisms. She never hit or pulled my mom’s hair, but she would get in her face and yell. Eventually the doctors listened to my mom and prescribed medication for Laura’s behaviors. They improved a little, but medicine rarely fixes years of ingrained behaviors.

Laura’s health began to decline in her late thirties. She battled pneumonia once or twice a year, requiring hospitalization. Eventually she needed to be on oxygen at night. Many times when she was hospitalized we wondered if this would be the time she didn’t recover. I remember thinking maybe Mom could be a part of our lives after Laura passed away, when the demands to take care of Laura weren’t her main focus—and then I felt guilty for thinking such a thing.

Mom, Laura, Eric holding baby Dallin

When Laura was hospitalized for the second round of pneumonia in less than six months, my brother, Eric, confided in me that he thought she wouldn’t be going home this time. She recovered enough to be placed in a long-term care facility. During this time Mom retired from her job.

After a few weeks at the care facility, Laura contracted HA-MRSA (Healthcare Associated Methicillin-Resistant Staphylococcus Aureus). The MRSA went into her lungs and the doctors said it had torn them up. They had her in ICU on a BiPAP machine.

A few days passed while the reality of Laura’s death loomed over our heads. I spent hours at the hospital with Mom. There was a time when Laura seemed to be getting better, but the doctors talked about putting in a feeding tube, saying she’d never be able to eat again. The best case scenario for Laura was being released to a long-term acute care facility where she’d always be on a BiPAP machine (which was considered life support because she couldn’t breathe on her own).

After considering the counsel from various doctors, including Laura’s primary care physician, Mom made the very difficult decision to take Laura off life support.

The next evening, we all gathered in Laura’s hospital room. The chaplain met with us first. I don’t remember what she said, but remember her warmth and support. After she left, a nurse came in and administered heavy doses of pain medication so Laura wouldn’t feel anything. After the medication had enough time to take effect, they removed the BiPAP machine.

Laura was the most alert she’d been in weeks. It was probably a relief not to have that machine over her face. And that’s when the doubts started flooding through me. Had we made a mistake? Maybe the doctors were wrong. Maybe she could recover. I’m pretty sure the same doubts were racing through Mom’s thoughts a hundred fold.

I don’t think we ever said goodbye and I don’t know if she would have understood if we did.

As Laura became depleted of oxygen, she was less coherent until unconsciousness overtook her. We watched and waited as her heart continued to strongly beat. The nurse told us the heart would often beat long after the patient stopped breathing.

This made me wonder, if Laura had been normal, would we have run together.  She obviously had the heart of a marathon runner. I felt cheated of having those kinds of memories with my sister. I missed her being whole and beautiful.

Slowly her heart stopped beating and she quietly passed away. One minute she was in the room with us and the next, she was gone. As I look back, the experience didn’t seem real to me. It was like watching someone else go through the steps of losing a sibling.

My grieving process was different after losing a mentally disabled sister.  First there was some guilt because I really didn’t miss her in the sense you miss someone who was close to you. Because of her disability, we never were close and my love for her was different. She was my sister and I was supposed to love her, but there were times, if I’m completely honest with myself, that I hated her. So after she died, I felt guilty for those emotions. Also, there was a little bit of relief—that maybe our family could finally be normal and feel peace. And I felt guilty about that too.

I came across this quote by Elder Jeffrey R. Holland a few years after Laura had died when I was asked to give a talk in church on the resurrection of our Savior. Writing and giving that talk helped me through my grieving process. The knowledge that someday Laura will stand before me in her perfect form and we will be able to build that sister relationship we were denied in this life because of her disability brings me great comfort.

 

In February, Christine Scott started sharing childhood segments of her life with her mentally disabled sister, Laura. It’s been inspiring to get a child’s perspective on her family’s caregiving journey and the trials they had to withstand. The first segment of Laura’s Story, recounts her birth and slow development. In Part 2, Christine recalls the impact of Laura’s seizures and in Part 3, details of Laura’s fight with cancer. Part 4, reveals how Christine, at age ten, learned about the accident which lead to her father’s death and Part 5, recognizes the community of angels who helped her family get through their darkest days. Part 6, illustrates the importance of building fun memories with our loved ones, which can ease the grief of losing them. Part 7, Christine remembers her mother’s extreme demands as a young widow caring for three children on her own with the oldest having mental and physical disabilities and the youngest an infant. Unfortunately, Christine, the middle child who didn’t require attention was sorely neglected and often responsible for taking care of her baby brother. Part 8, reminds us of the importance of advocacy and the difference it can make in our lives.

Thanks, Christine, for being a guest author and sharing your life story of living with Laura. You have shown us that growing up with another person who needs a lot of care and attention is difficult. We appreciate your honesty and for sharing your grieving process with us. As a caregiver, your story has made me realize that I need to be more mindful of my own children, parents and other loved ones who may need me. Sometimes it’s hard to see their needs when I’m so wrapped up in the care of Mark. I appreciate your insights.

Laura’s Story, Part 8

Written by Christine Scott

Christine Scott

This post is much easier to write because I can finally include my happily ever after. Weeks ago I was thinking about the story of Cinderella and how, out of all the fairy tales, it’s been told and retold the most. I believe this is because Cinderella’s plight resonates with so many people.

Looking back on my childhood and growing up years, I lived a story similar to Cinderella. My dad passed away while I was very young, leaving my care to a mother who prioritized another sibling’s well-being over mine. I don’t fault her for choosing to put Laura’s needs before mine because my mom’s dedication was necessary for Laura to receive the care she needed. If a mother doesn’t fight for her disabled child, who will?

What distinguishes my story from Cinderella’s is that my mom wasn’t the villain and neither was Laura. In true life, people aren’t easily identifiable as the black and white stereotypes of villains and heroes. They come in every shade between and more often than not, their choices for good or ill, are a result of trying to make the best out of the less-than-stellar circumstances they’ve been given.

For the most part, that’s where the similarities end between mine and Cinderella’s story. I didn’t sing to the animals, have mice as friends, or receive a visit from my fairy god mother. I won’t lie, a visit from a fairy god mother would be very nice. But I did find my prince, and in very unconventional way—Laura helped with that

To catch you up to speed on the timeline of our lives, my grandma recovered from her stroke and was able to independently live in her own home for many years following my grandpa’s death. She never did obtain a driver’s license and with becoming a widow, she became very proficient at public transportation.

When I was thirteen, my mom made a down payment with the royalties she received from my dad’s hang glider plans on a new house. This home was built in West Valley, so we moved about fifteen minutes away from my grandma, but Mom kept in daily contact with her. She continued to be an integral part of our family, taking family vacations with us and helping with my brother. She also shared her love of flowers and history with me whenever given the chance, which fueled my passion for writing and yearnings for her green thumb.

Life went on and I started dating, got my first job at Harmon’s grocery store, graduated from high school, and attended Salt Lake Community College. The doctors eventually controlled Laura’s seizures with many modifications to her medications. She continued to have a lot of behaviors such as picking her face, tantrums, and repetition of certain phrases. She carried around toys and talked to them and she loved Richard Simons workout videos and watching Wizard of Oz.

Dating and having Laura for a sister made for some interesting times because she loved to answer the phone and then repeat her nonsense phrases to whoever was on the other end—usually stuff she’d memorized from shows she’d watched. I learned that letting her answer the phone when guys called who I didn’t want to see again was a great way to get rid of them.

I believe having a mentally disabled sister served as an effective screening process for the guys who came into my life. It took someone understanding and tolerant of disabilities. It required acceptance of differences to be in a relationship with me for an extended amount of time.

Eventually, I met my husband, Nate and he hung around through Laura answering the phone and her tantrums. He even stuck up for me. Laura usually was well behaved in his presence because he expected her to be kind to me.

Laura holding Jessica

After we were married, Laura treated me different. She never physically picked on me again. Maybe it was because I didn’t live with her and our roles had changed, but I don’t know for sure. When my first daughter, Jessica was born, Laura was fascinated with her, except when she cried. I would have to take Jessica out of the room so it wouldn’t upset her.

Marriage brought a freedom and peace which had been lacking in my life. I was able to progress and explore my talents. From the first time we met, Nate believed in me and my abilities. I will forever be grateful to him for not judging my family situation and loving me through all the strangeness. He was my prince who rescued me and keeps rescuing me every day.

Mom holding Jessica with Laura

Together, Nate and I have faced many challenges and grown together while caring for our five children. I have absolutely loved being his companion through this craziness I call our life.  He has put up with my marathon running, dreams of becoming a successful author and finishing my occupational therapy assistant degree. I appreciate him for standing by my side through my anxieties and plethora of self-doubts while I’ve struggled to believe in myself and my abilities. And for this, I will love him forever and back again.

 Thanks Christine for being a guest author and sharing your life story of living with Laura. This segment reminds me of the importance of advocacy. While your mother was involved in being an advocate for Laura, you missed having one in your childhood. I’m glad Nate came into your life and was your champion and promoter. As independent as we all want to be, I believe we all need someone to encourage and back us up. You have shown us the difference an advocate can make in our lives. I’m so glad you found your prince.

In February, Christine Scott started sharing childhood segments of her life with her mentally disabled sister, Laura. It’s been inspiring to get a child’s perspective on her family’s caregiving journey and the trials they had to withstand. The first segment of Laura’s Story, recounts her birth and slow development. In Part 2, Christine recalls the impact of Laura’s seizures and in Part 3, details of Laura’s fight with cancer. Part 4, reveals how Christine, at age ten, learned about the accident which lead to her father’s death and Part 5, recognizes the community of angels who helped her family get through their darkest days. Part 6, illustrates the importance of building fun memories with our loved ones, which can ease the grief of losing them. Part 7, Christine remembers her mother’s extreme demands as a young widow caring for three children on her own with the oldest having mental and physical disabilities and the youngest an infant. Unfortunately, Christine, the middle child who didn’t require attention was sorely neglected and often responsible for taking care of her baby brother.

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.

 

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. 

 

 

Laura’s Story, Part 3

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 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 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.

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.

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 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

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 & 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.

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.

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.

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

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.