Laura’s Story, Part 7

Written by Christine Scott

Christine

Christine

Everyone is familiar with the pop song, Stronger (What Doesn’t Kill You) by Kelly Clarkson.  I’ve heard the quote, “what doesn’t kill you makes you stronger” repeated a lot over the past few years. I don’t know if the popularity of the quote came from the song, but I’ve decided to make it my mantra as I approach the very difficult topic of sharing my adolescent and teen years with you. Since the fact I’m here writing this, I’m living, breathing proof that those years didn’t kill me—so I must be stronger.

In many ways I was a normal adolescent girl. My hang-ups were typical. I fought with my mom. I felt awkward. I wanted to make friends and find a boyfriend. I liked all the popular music and wanted to dress in the current brands. I wished I was prettier, funnier, and more popular. I didn’t know my talents. In a lot of ways I was lost—similar to many other kids my age.

Laura teenager

Laura

However, I had a mentally disabled sister I didn’t want others to know about. I’d moved past the point where she was my sister and I’d stick up for her—my reputation was on the line. I was afraid if someone found out about her they’d think something was wrong with me too.

I remember my sister chasing me down the aisle at Harmon’s grocery store and pulling my hair. I remember the humiliation. I remember feeling that maybe it was my fault for not standing up for myself. My brother was bigger than her and she didn’t pick on him like she did me. Should I have been more of a fighter? I’ve always felt like I should be more of a fighter. That I’m too weak, that I let others take advantage of me. And maybe I have.

But I suffered a unique form of abuse—one you don’t hear about. One that doesn’t have a name or a definition.

It wasn’t until just a few years ago that I realized I was an abuse victim. I suffered abuse at my sister’s hands and neglect from my mom’s failure to act in a way that protected me. I realize my mom was overwhelmed with Laura’s behavior problems, but it wasn’t until later she sought help by medicating Laura—and I don’t understand why she waited. I do remember her saying that Laura was so sweet mannered at school that the teachers and whoever else she sought help from, didn’t believe her about the behavior problems at home. Maybe if my mom had a support system, maybe things would have been different.

Laura teenager1

Laura

Laura ruled the roost at our house. Mom did everything to appease Laura. From letting her watch the shows she wanted to Mom staying home from work or whatever outing we’d planned when Laura was having an “off” day. She didn’t expect her to do chores or respect the needs of others. Mom’s coping strategies allowed Laura to have terrible tantrums, which were often focused at me.

To keep the peace, my mom told me to go to my room. If I was out of sight, Laura didn’t torment me as much. From my alone time, I learned to love reading and I read a lot of romance books. I became an introvert, which isn’t necessarily a bad thing.

The worst part was the important interactions I missed. Family time. Time spent with my mom teaching me and believing in me and my abilities. I wish my mom would have made more time for me instead of taking the easy road with disciplining Laura. I wish she would have made time for herself, for friendships, for exploring her own talents and interests. Maybe if she had, she would have expected more from Laura. Maybe she would have disciplined her so our family could have been more functional.

But these are only wishes for a different outcome. To be healthy in this life you have to take what you’ve been given and make the best of it.  In retrospect, I wouldn’t trade growing up with Laura. The experience gave me insights I wouldn’t have had otherwise. It’s led me down the path to become an occupational therapy assistant so I can make a difference in situations such as these.

And there’s the proof that I am stronger, but what’s even better—I found a way to thrive despite the challenges I’ve faced.

Thank you, Christine, for being a guest author. I enjoy reading your insights on the challenges and rewards of growing up in a caregiving household where another family member requires so much of the care due to mental and physical health disability. I imagine there’s others who can relate and have been neglected due to the main caregiver’s extreme demands. I’m sorry you were one of them.

For me, as a caregiver, this article spotlights the importance of respite care. Time away from the problems can clear the vision. However, it’s hard to find people who qualify or are willing to take care of the needs of our loved one while the caregiver gets that much needed break.

For our Tip next week, we will brainstorm and list some ways a caregiver can find the help needed for some time to refuel, recharge and be revived.

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.

Laura’s Story, Part 6

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,  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.

Christine has agreed to share a few more insights on the challenges and rewards of growing up in a caregiving household where another family member requires so much of the care due to health issues and concerns.

Written by Christine Scott

Christine

Christine Scott

To be honest, I want to be finished writing Laura’s Story—and I don’t want to dwell on the next segment because it was such a difficult time in my life. When sitting down to write this, the sadness and loss makes me tired. At this point, I wish the story took a happy twist and I could report on how we all lived happily ever after. However, this story isn’t one of my works of fiction and processing the hardships I experienced is an essential part of my recovery process. Not to mention—many of you have expressed your interest in finishing the story and I don’t want to let you down.

We lived with my grandparents for six weeks after my dad died and then we moved into a rental house around the corner. My mom wanted to stay close to her parents so she could lean on them and have help raising us.  My fondest memory of this house was the crab apple trees planted in front. My grandma would have me pick the crab apples, and then she’d make the best jelly out of them. However, I struggled with the move. The kids at my new school weren’t as friendly as in Morgan. And the kids in the new neighborhood openly made fun of Laura, which didn’t seem to happen as much in Morgan. I missed riding horses with my friend and the bike rides from one end of the Morgan valley to the other. I dreadfully missed living in a small town where there were wide open spaces and next to no traffic. I still do. Some things you never grow out of.

About a year after my dad died, my grandma was hospitalized for pneumonia. After she was released, my grandpa had a minor heart attack and was hospitalized.

A few days later they were getting ready to release my grandpa from the hospital and when my grandma and mom arrived to pick him up, they discovered he had sustained a major heart attack. When the hospital staff approached my grandma to sign the paperwork to treat him, she collapsed. My family always assumed she had suffered a stroke. She was admitted to the hospital.

The doctors operated on my grandpa and put in a pacemaker, but his heart was too damaged. He passed away a few hours later. Grandma was unable to attend his funeral due to her hospitalization.

Laura12

Laura Hill

My mom had moved close to her parents for their support, but within a short year, the situation had reversed and she was the one helping them. Mom rose to the occasion and pulled through even more challenges—once again proving her strength and resiliency. Much of my baby brother’s care fell to me. Laura had reached puberty, which threw her seizure medications off balance so she started having seizures again.

A few weeks ago while reminiscing with my mom about this time in her life, expecting to hear about her struggles, I was surprised by her positive attitude. We discussed the family trip we took to Disneyland shortly before my grandpa died. It was a trip my parents had planned to eventually take, but with my dad’s business struggles there had never been enough money. At this point my mom’s financial situation had significantly improved due to the royalties she had received for my dad’s hang glider plans. So she decided it was time to take her dream vacation to Disneyland. My grandpa didn’t want my mom to go alone, so he and my grandma accompanied her.

My mom packed us all up in her Ford Granada and we headed to Anaheim, California. I remember being excited about staying in hotels and swimming. I loved Disneyland and was completely disappointed when grandpa insisted we leave before dark. My mom loved this trip. It is one of her fondest memories of my grandparents.

Speaking with her about the Disneyland trip made me remember the trip my family took to Lagoon on the Sunday before my dad died. It was a mild fall day and the lines for the rides were short. We were able to go on our favorite rides as many times as we wanted. My dad was attentive to my family and mom was happy. It was day I wished would never end.

As I relived these memories with my mom, I realized that these times we have with our families are precious gifts that transcend the challenges and heartaches. It is when we are together and for a brief time, when life is in rhythm and we feel at sync with the life around us. These moments are beautiful gifts and evidence of Heavenly Father’s hand in our lives—and when remembered—outweigh the grief.

Thanks Christine for sharing another segment of your life with Laura and your family’s caregiving trek. When I read this article, the importance of taking time to play with our families is what stood out to me. As a caregiver it’s easy to feel like you don’t have the time or the money to so. Good memories are important, as you have so eloquently described. A break from responsibilities is essential for the family’s well-being. I’m grateful for the reminder.

 

Laura’s Story, Part 5

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 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 & Chris1

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 12

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.

Laura's family

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.

 

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.