Scary Confessions

At this time of year, there’s a lot of discussion about what you what to be for Halloween. When you enter most department stores, there are isles of costumes for every imaginable character, but my favorites are the homemade costumes conceived by a clever individual.

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Wonder women shirt at Walmart

I want to be a superhero and not just for Halloween, but every day of the year. I know they’re fictional characters with super human powers, but that’s what I need. It takes a wonder woman to be a successful wife, mother, caregiver and have a professional career at the same time. I want to be friendly and helpful to all those around me. Having a perfect figure with a tiny waistline would be another wanted image when I look in the mirror.

Being a ninja who excels in a particular skill or activity with flawless strength and coordination would come in handy. My trip and fall accident in July proves I’m no ninja, but rather a silly clown who feels clumsy and not too bright.

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Witch costume at Walmart

My reality is that I often come up short in what I’d like to be or want to accomplish. This brings overwhelming feelings, which too often lead to actions and/or behaviors more like a witch. Sometimes the inadequate feelings nearly paralyze me to the point that I can’t decide what’s most important or the best direction to fly.

Yes, there are monsters inside me and they are discouragement and depression. Sometimes my mind dwells on life’s unfilled expectations and what I’m unable to accomplish. And then the ghosts of past memories or future worries come to haunt me, which sink my spirit into despair.

vampire-dress-costume-from-target

Vampire costume at Target

Sometimes I’m like a vampire – not just because I have to draw Mark’s blood every two weeks for testing, but because I can’t go to bed at night. I know my body needs rest, but I lack discipline and think I have too much to do and deprive myself of sleep. This brings out the zombie in me the next day, which should only be found in the horror and fantasy genre—not real life.

What I appreciate about real life is I don’t have to wait until next year to change my character. Every day is a fresh start. I have the choice to get out of the character I don’t really want to be and strive to become the desired ninja or wonder woman. I’ve heard it said you are what you repeatedly do. As long as we’re breathing, I don’t believe we’ve run out of times to get back on track, so I can at least do that. Realizing that I’ll never become those fictional characters with needed super human powers is a good reminder to be more understanding of others around me who are also facing challenges, which may be bringing out their less desirable character. I imagine we all have “set backs” which don’t bring out the best in us. However, that doesn’t mean we can’t “come back.”

ninja-costume

Ninja costume at Target

Please forgive me if I act like a witch, clown, monster, ghost, vampire or zombie from time to time. I’m really striving to be a good daughter, sister, wife, mother, neighbor, friend and employee by showing and giving care to those around me. Yes, I keep falling short because I don’t have the super human powers I need to accomplish all I want to do, but I can repeatedly get back on track.

Although Halloween isn’t my favorite holiday, I sure can relate to some of the character costumes which I see this time of year. What are you planning to be? A ninja or wonder woman is at the top of my list.

Carry On

July is full of outdoor activities and celebrations that last all month long in Utah. It’s my favorite time of year with family reunions, outdoor plays, concerts, parades and many festivities to look forward to. 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 to accomplish the most outside. I always have great aspirations for this month.

This year we started the month out by driving to Vancouver, Washington with our daughter, Katie. We enjoyed visiting with Mom Wilson, Karen and Mark Ray. Lucky for us our son, Christopher, lives just across the Columbia River in Portland, Oregon making our visit quadrupled the fun. We enjoyed an Independence Day celebration at the park with energetic music, food trailers, beautiful fireworks and the great company of family. It’s always hard to say good-bye to loved ones especially without knowing when we’ll see them again. We made the long trek home in about fourteen hours, which includes our fuel and rest stops.

My asthma flared up during our trip and I struggled more than usual to get it under control. When we returned home I went to the doctor for what I thought would be just a medication change. I left Mark home alone, expecting it to be a short doctor’s visit since I was her second appointment of the day. My oxygen level was low so they gave me a breathing treatment and oxygen, which confined me to the room until my oxygen level reached normal.

Two hours later, I left the room anxious to get back to work and to Mark. Remodeling construction had started near the large entrance/exit sliding glass door of the building. With no cone or sign before it, I didn’t see the piece of metal track that had been attached to the tile floor during my doctor’s appointment. I tripped and fell on it, landing hard on the tile, dislocating my right shoulder.

Dislocated shoulder 1

Dislocated Shoulder 07/08/16

My body wrenched in pain like I’d never felt before. I tried to get up, but couldn’t. A man came to my aide and before I knew it, I was sitting in a wheelchair and whisked to the Urgent Care Clinic in the building.

I heard someone report I was in and out of consciousness and my vitals dropped. “Call an ambulance; she needs to go to the hospital.”

“Please put my shoulder back in place,” I pleaded. “I need to get back home to my husband.”

The look on the doctor’s face helped me realized how silly the statement sounded, so I explained. “My husband has a traumatic brain injury and is confined to a wheelchair. He depends on me to get him in and out of the chair.”

“I don’t believe you’re going to be able to lift him for six to eight weeks,” he said while placing an IV for fluids and another one for morphine.

The first stranger who rushed to my aide looked at me drenched in perspiration from the pain and in sympathy said, “I’m sorry. Don’t worry about the medical cost. We’ll take care of you.” I assume he was the job foreman.

Submissive to all the medical team requests, I moved every which way they asked as they transferred me to the stretcher and rushed me to the hospital. For the next three hours the only thing on my mind was getting my shoulder back in place. My right arm went from feeling like it weighed 100 pounds, to numbness, to sharp, shooting pains running down it. I was sure my arm was dying and at times I thought death would be my only relief. No matter how many times I begged them to fix my shoulder there were tests that needed to be done to make sure I didn’t need surgery or an x-ray that had to be taken to show the best way to maneuver it back in place. Finally I was given a conscious sedation and like Humpty Dumpty who fell off the wall, I was put back together again. Instant relief followed, but then came the body shakes, which I will take anytime over the pain of a totally dislocated joint.

Located Shoulder 2

Healing shoulder, 07/19/16. The bump on my clavicle is from the break 25 years ago. I’m glad it didn’t break again!

I’m an aging caregiver who is dedicated to the love of my life. My worst fear is not being physically capable of caring for him. I’ve always known it’s a possibility, but I don’t know how to prepare for it. I know the options and none of them feel right. Even the option of relying on family and friends for help ties my stomach up in knots.

This year the sunny month of July has been the darkest I have felt in a long time. Depressing thoughts linger because my body can’t do what it wants to do. With my arm splinted in a sling and strapped to my side to allow torn tendons and ligaments to heal, my mind keeps focusing on the negative aspects of my life. Having to depend on others to help with Mark’s care for several weeks makes it hard for my heart to find hope in a brighter future. How do I dig out of this gloomy place and feel the sunshine in my life again?

brigham-young-and-pioneers-entering-the-valleyAnnually on July 24th, our state honors the Mormon pioneers who arrived in the Salt Lake Valley in 1847. I imagine 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. Last week our celebration reminded me their trek exemplifies courage and faith. Their stories inspire me. They endured harsh weather, death of loved ones and starvation as their food and water supplies diminished.  Nothing had prepared the majority of these travelers for the exhaustion, illnesses and injuries 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 thankfully 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 illnesses and injuries which keep arising. As we make it through one challenge only to receive another, I continue to be a beginner in a new territory, learning a new way of life that most people can’t fully understand. I am a modern-day pioneer and so are you as we struggle through our own personal trek. This connection gives me courage and faith to carry on.

The pioneers didn’t know how or when their journey would end. Similarly, I don’t know how or when ours will end. Like my ancestors’ examples, I’m committing to carry on with faith in every footstep for a brighter future. Even if we don’t reach our desired destination in this life, I believe we’ll be blessed beyond the grave, free from the harsh physical ailments which we have endured. With confidence, I picture this celebration far grander than I’ve ever witnessed and possibly can even imagine.

Just as I started the month of July with great aspirations, I end it with the same for the future and will carry on as best I can.

 

Dad, I Love You

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Dad holding me. Rosanne & Mick on the porch.

Dad, I love you and do you know why?

Because of that special gleam in your eye,

Which tells me something significant and true:

That I’m an important part of you.

 

 

 

Mom & Dad

Mom and Dad 2014

 

I love you because I know there’s no other,

That you love more than the one I call mother.

I love you because you are always there,

Extending a hand to show that you care.

 

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My first filly, Ginger, a dream come true

 

 

I love you for all the things that you teach

Like nothing I want should be out of reach.

You’ve taught me to work and to save my money

For things that I want to make my life sunny.

 

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Dad riding Chili the mother of Ginger. I love the hard hat he always wore.

 

I love you because you are honest and strong;

You’re courageous and steady when things go wrong.

I love you because in your steps I can trod,

Because I know you’re clearly a man of God.

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2014, One of Dad’s many talents, leading music.

 

Dad, I love you and do you know why?

Because as a man you are never shy.

You’re friendly to everyone you meet,

And as a friend, you just can’t be beat.

 

 

 

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2008, Mark and Dad

I love you because your in-laws you truly love,

Making them fit in the family like a glove.

And with your grandkids you always have fun

With work or rain, but mainly snow and sun.

 

 

Dad & I Snowmobiling

1980, Dad and I

 

I love you for these and so many other reasons;

Thank you for all the joy—no matter the season.

For dancing, camping, horses and snowmobiles too,

Boats, 4 wheelers and swimming, just to name a few.

 

Dad, 2015

2013, Dad on his backhoe

 

 

I love you for being the perfect dad for me.

I value your opinion and your wisdom I see.

You listen while I hash out my crazy ideas,

Then you help me achieve them, I cannot tell fibs.

 

Dad and Mark

1980, Dad & Mark boating

I’m the luckiest gal ever, I know,

Because I have a dad that loves me so.

And I married a man a lot like my dad,

They’re the best of friends for which I’m so glad.

 

Dad, Mark & I

2009, Me with Mark and Dad

 

I love you both and do you know why?

Because as fathers you’re quite the guys.

And because on earth you’re what fathers should be,

I’m blessed to be yours through eternity.

 

 

Joy of DadHappy Father’s Day!

Links to my favorite story’s about Fathers:

My Home Delivery

A Blessed Life

My Two Favorite Men

Dad Creating Beauty After Tragedy, Part I & Part II by Katie Wilson Ferguson

Laura’s Story, Part 9

Written by Christine Scott

ChristineIt’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.

Laura's Family, Silver Lake

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 and baby Dallin

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.

Breathtakingly PerfectI 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

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

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, Laura & Jessica

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.

A Better Today

Memorial DayFor decades, Decoration Day was observed on May 30. Businesses closed their doors to honor and decorate the graves of the American soldiers who had lost their lives in battle. It wasn’t until 1971 when the Uniform Monday Holiday Act passed, declaring Memorial Day to be observed on the last Monday in May in order to create a three-day weekend to honor our fallen soldiers. While the federal holiday isn’t about the start of summer, it has evolved into that over the past forty-five years.

May is also the month of graduation for many students and for many more it’s the end of a school year which adds to the excitement for the beginning of summer. The anticipation for summer activities and vacation brings some level of stress to most families and when you have a family member with special needs, the anxiety level may increase. Physical, mental and financial limitations can bring disappointment and frustrations when family time doesn’t work out the way we’d hoped.

Often the demands and responsibilities weigh heavily on just one person. Possibly without even realizing it, all of the caregiver’s attention and energy is directed on the one person who seems to have the most needs. However, as Christine reminded us in Laura’s Story, Part 7, there are others who need our care and devotion. As a caregiver, how can you meet the needs of the one with disabilities and not neglect your other loved ones? It’s a very difficult balancing act.

My children had a wise elementary school counselor who was concerned about their needs not being met after our tragic car accident. She recommended I spend some one-on-one time with each child weekly. Following her advice, I took turns taking one child out for ice-cream, bowling or some other activity while the other child stayed home with Mark for an hour or two. At the time, it seemed like a lot of effort on my part, not because I didn’t want to be with them, but I worried about Mark and the child left at home. Although I regret not being able to be more carefree with my children, I treasure the memories of the one-on-one time I spent with them.

In Laura’s Story, Part 6, Christine reminisces about their trip to Disneyland and another fun day at the local amusement park, Lagoon. This article reminded me of the importance of taking time to play with our families. As a caregiver it’s easy to feel like you don’t have the time or the money to do so. However, good memories are important for building a strong family, one that can withstand hardships.

Including Mark, even with his limitations, we tried to continue our summer traditions of barbeques, camping, roasting marshmallows over a campfire and a summer day trip to Lagoon with our kids. We also took a few extended trips over the years to Washington and Arkansas to visit parents, sisters and grandparents. Every outing was much harder and required more planning with Mark’s disabilities. I remember the stress of preparing to leave the house and feeling like my energy was completely drained when returning home from these family activities. However, my efforts are rewarded by good memories that far out-weigh the difficulties. Now that our kids are grown, I cherish those times more than I thought possible. I now realize the benefits of taking a break from our everyday responsibilities and the impact it had on our family’s well-being.

Memorial DayMemorial Weekend is more than looking forward to the start of summer and creating family memories. It’s a time to remember those who gave the ultimate gift. In their honor we should pursue peace and happiness. There is no better place to start than within our own families and building meaningful experiences.

Thank you to all the American military who died in wars fought for our freedoms so we could have a better today and tomorrow.

Please feel free to add any soldier remembrances or ways you’ve created worthwhile family memories.

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.