Embrace Your Fears

LauriA good friend, Lauri Schoenfeld, spoke at our caregivers group on April 20, 2017 at the Intermountain Medical Center (IMC) in Murray.  She gave an excellent presentation on embracing fear to move forward. She addressed what holds us back and how to overcome it so we can be our best selves. She is positive, fun and energetic.

Lauri is a wife, mother of three, child abuse survivor, scoliosis survivor and has dealt with massive depression. She revealed four tips to help us overcome our fears to enable progression. 

Written By: Lauri Schoenfeld

1. Recognize your fear and call out to it. Get clear what you’re afraid of. It can be anything. A lot of times our fears are like an onion that has multiple layers. Is it spiders, clowns, natural disasters, death, being betrayed, getting too close to someone, loss, or rejection.

  • What happened to create this fear?
  • How is it holding you back?

If you’re going to let go of fear you have to recognize it first. It’s called gaining consciousness. When you start to feel yourself getting a little anxious or fearful, stop and take notice. Think to yourself, “Oh, here it is. I’m starting to get freaked out.” Then instead of reacting on your instant emotion, breathe and see what’s going on around you that could be creating this element for you. Watch how your body reacts to the situation for future understanding. By doing this you start to disengage from the fear as the ultimate reality. It helps you to realize that you are NOT your fear.

Fear is like a fire alarm alerting you to check something out. It propels us into action. This is good, not bad. We need this. Julia Cameron says, “Fear is not something to meditate and medicate away. It is something to accept and explore.”

Elizabeth Gilbert, author of Eat, Pray, Love and Big Magic, says that when she’s writing and feels fear sit on her shoulder, she acknowledges it and says, “Thank you for worrying about me today, but I don’t need you” and then she continues working. She doesn’t allow fear to control her choices or future because she is aware that she needs fear at times, but at other times she does not.

The ego is the part of your mind that stays focused on the past. It feeds you all the time with messages like “Watch out. It’s going to happen again.” It’s a sly trick which uses our fear that we will indeed hurt again. Instead of being open to different experiences and outcomes, we halt. Most of us are afraid of fear because so many of our experiences with fear have been negative. In reality, it is a very positive and useful tool.

Fear2. Face your fears. You have to surrender to them and become willing to create a different reality. Your life will not turn out differently unless you do something different.

  • What are your truths? (Example: Mine are being a child abuse survivor, scoliosis survivor, a writer, speaker, and a mom.)
  • Write down your truths and start peeling back the layers of the onion one step at a time. Don’t try to take it all at once as your truths are going to be deep, hard and emotional. Be gentle with yourself as you unfold each layer.

Courage

  • If you’re afraid of speaking, go speak. If you’re afraid of snakes, pet one, read a book about one or go to an aquarium and stand in front of the tank.
  • Encourage yourself to do one scary thing each day. It doesn’t need to be large. Every step forward is something to be proud of.
  • Courage, confidence and even fearlessness are the result of facing, embracing and dancing with fear, looking it straight in the eye and having a partnership with it.

3. Learn to love yourself and appreciate all that you are. Once I began nourishing myself, the fears I felt didn’t seem to control my life anymore. I began to have clarity on how to handle tough situations and challenges with more grace, patience and positivity. I began taking charge of what I wanted in my life.

Love YourselfIdeas that work for me:

  • Motivational videos – Brene Brown, Elizabeth Gilbert, and Tony Robbins are a few of my favorite speakers. Check out TEDTalks.
  • Gratitude journal – No matter how tough things feel, there’s ALWAYS something to be grateful for. Looking for those things gives us the opportunity to see that we can indeed find beauty even in the darkest moments.
  • Positive Affirmations – Write five things that you want to start shifting in your mind in a positive fashion. One positive thing per card. If you have negative internal dialogue that you don’t think you’re very smart, write on your card “I’m Smart.” Use reverse psychology and say these five affirmations EVERY SINGLE DAY. It’s important to say those five things like you mean it.
  • Take time out to breathe – I call these moments “Lauri Time.” Depending on the week, sometimes I can do an hour or sometimes its fifteen minutes, but do something that calms your spirits, is enjoyable, fun or creative. Whatever you need in that moment, give it to yourself. You deserve to be treated with gentle loving care too. Write a list of twenty things that you really like and once a week, treat yourself to one of those things.
  • Read uplifting books – There are so many to check out. Chicken Soup for the Soul books are some of my favorite. Form a book club with a group and read a different inspirational book each week.
  • Get an accountability/support buddy – It’s important to find someone you can share your progress with. Every step, whether it’s big or small, is important to acknowledge.
  • Surround yourself with people who can relate to you and the things you’re going through – Having this support system and team will help to keep you grounded, supported and appreciated.

Move Foreward4. Be present and realize that this is your life.

If you were told that you had six months to live, would you live in the present or the past?

What kind of things would you do? Travel to a dream destination, swim with dolphins, spend more time with family, start taking a class you never allowed yourself to do?

Why are you waiting?

Why not start now?

Put on your shield and cross the monkey bars. If you fall, get up and try again until you’re on the other side. You are NOT your fear! You’ve got this.

Lauri and I connect through writing groups and conferences. For more articles by Lauri check out, https://thinkingthroughourfingers.com/. Type Lauri Schoenfeld in the search bar. She’s written many articles for that website.

Thank you Lauri for sharing your tips on how to embrace fear to move forward.

Related Articles:

https://unitingcaregivers.wordpress.com/2015/08/27/overcoming-fear-of-failure/

https://unitingcaregivers.wordpress.com/2015/07/12/feel-the-fear-and-do-it-anyway/

https://unitingcaregivers.wordpress.com/2015/01/21/five-ways-to-overcome-fear/

https://unitingcaregivers.wordpress.com/2014/07/08/overcoming-fear/

What Doesn’t Kill Us Makes Us Stronger, Part 2

I met Greg and Laura Nordfelt at the 2013 Brain Injury Conference, just two years after Greg’s motorcycle crash. I’ve enjoyed our friendship and watching this couple get stronger through their traumatic experience. They spoke last week at a combined Survivor and Caregivers Support Group sharing what they’ve learned.

Written by Laura Nordfelt

Greg & Laura-landing pad.pngThe medical helicopter which came to life-flight Greg was very old and small. In fact, half of his body was in the nose of the aircraft. The ventilator was broken and one of the paramedics was trying to bag Greg (it seemed sporadically) while trying to preform many other tasks. I mentioned to her I was an EMT and asked her if I could do the bagging for her. She agreed and I continued on every 4 seconds like I was trained to do in school. The flight seemed to take forever (I worried we were going to Canada!) and only looked out the window once or twice. When we started to land, all I saw was a “tough shed” structure on top of a roof.  Medical people ran out to get Greg and down an elevator we all went and into the Emergency Department. By the time I felt comfortable enough to leave his side, I asked, “Where are we?” When they told me Coeur d’Alene, ID, I told them I needed to take Greg to Salt Lake City, but the doctor told me he would not survive the flight. I slumped down against the wall and lost it.

I made mistakes. I am fiercely independent and a stubborn woman. In the beginning I turned family and friends away. I said “don’t fly up here, I’m fine”. Then, “we don’t need meals, I’ve got this covered.” Not only did I watch him crash, but I kept him alive for 45 minutes until the paramedics arrived. I was a mess! I had post-traumatic stress disorder (PTSD) and I was in a cocoon as much as Greg was in a coma.

An Executive Vice President from Greg’s work came to the hospital to visit and I cut her off down the hall and visited with her. There’s no way I was going to let her see the condition Greg was in. I was so worried that he was going to lose his job. I posted a sign “Family Only” on Greg’s door at the hospital. Visitors had to check with me or the nurse before entering his room. I took the phone off the wall and put it in a drawer and took his cell phone away from him. He wanted to call his office to “check on things” all the time. I was worried he’d say something inappropriate.

Greg & Laura-tableWhen Greg left the hospital, I sent out a message on Facebook telling our friends that Greg needed time to rehab and recover so if they could wait to visit, that would be much appreciated. I really only meant it for acquaintances, thinking our close friends wouldn’t take it to heart. A few months down the road some dear friends of ours called and asked if they could bring dinner and come for a visit. I was thrilled! Frankly I had wondered why they hadn’t called sooner.

While we were setting up dinner, she told me they would have come sooner, but wanted to respect my wishes of giving us our space. I said, “Oh, I didn’t mean you guys!” I realized then that I had alienated the very people Greg and I needed the most. Greg’s co-workers later expressed the same emotions. If only they’d known what to do. They wanted to help in any way, but we pushed them away.

I own a business and I needed someone to sit with Greg or run him to therapy appointments, but I said “NO, I’m fine”. I really wasn’t fine, but I wanted to be and I didn’t know how to let them help. Most of it was my fault, but some of it was not.  Caregivers leave the hospital with their tool bags pretty much empty. I had to earn my hammer, saw and screwdriver the hard way. I felt neglected, isolated, abandoned, ignored, lonely, unsupported, disrespected and misunderstood. When I needed family and friends the most, they were all gone.

Greg & Laura-walkIn order to heal, I had to get outside of myself. I started the first ever Caregiver Group in Utah as a survival mechanism. As much as I wanted to give back to the community, I needed other caregivers. As I spent time listening to their stories, I felt not so overcome by my own problems. I felt empathy and compassion. When “in the moment” of caring for caregivers and survivors, their hurdles felt more important than my own. When we get caught up in these “feel good” experiences, we don’t need anything in return. I also joined the Board of the Brain Injury Alliance of Utah. This is my passion now!

Another way I healed is a couple of years ago a friend asked me to join her book club. I love to read, but I was scared at first because I only knew her and no one else. I went one time and almost did not go back, but forced myself to hang in there. These women are now very near and dear to my heart. I’ve read many wonderful books which I never would have picked up on my own. The social setting has its benefits as well. We trade off hosting dinner so I’m learning new recipes. I work on my listening skills and forget my problems for a few hours. By the very nature of getting together with women, it forces me to get out of my pajamas. Therefore, I get semi-dressed up, put on my makeup and lipstick and wear my fun jewelry. All of this is very good for my soul!

Thank you, Laura, for sharing your experiences and what you’ve learned. Friedrich Nietzsche was right, “That which does not kill us makes us stronger.”  I see that in Greg and Laura’s life and hope you see that truth in your own life.

What Doesn’t Kill Us Makes Us Stronger, part 1

A German philosopher, Friedrich Nietzsche, actually said it more eloquently: “That which does not kill us, makes us stronger.” I thought this title was fitting for the couple I’m highlighting this week. I met Greg and Laura Nordfelt at the 2013 Brain Injury Conference, just two years after Greg’s motorcycle crash. I’ve enjoyed our friendship and watching this couple get stronger through their traumatic experience

Written by Greg Nordfelt

Greg headshotI am a three time Traumatic Brain Injury Survivor (TBI). By looking at my picture, you’ve already noticed I have a huge forehead. Many have told me I could rent space out on it as a billboard. Well it’s also a magnet to immovable objects. That’s why I’ve had three TBI’s. The first was in high school when I was skiing at Alta. I fell on a mogul run and hit the post of a sign that ironically said, “SLOW SKIING”. I hit it head on with the left side on my forehead. The second time I was racing heavy bicycles in England downhill on the wrong side of the road. I didn’t make the turn at the bottom and my front tire hit the guard rail. I hit a lamp post head first, again with the left side of my forehead. The third time I crashed my motorcycle into a bed of Lava Rocks and, again, I hit them, you guessed it, with the left side of my forehead. I am an adrenaline junky, but unfortunately my forehead had a crazy attraction to all of those immovable objects which eventually caught up to me.

Last August was our 5 year anniversary of my accident. We drove to Coeur d’Alene, this time in a car, to meet with Kootenai Health’s executives, two surgeons, and the critical care team that save my life. This was my first time to meet them consciously. I wanted to thank them individually, face to face, and hug them so they would know how grateful I am for what they did for me and my family!

Greg & Laura-Gala

2016 Greg & Laura, Festival of Trees

The press showed up and articles were written. We were on the cover of magazines. They asked us to be their “Spokespeople” for their Festival of Trees. It’s a black tie fund raising Gala.  They asked us and we agreed to help them set a donation record. They were expanding their Emergency Department and Operating Room, the two areas that saved my life. They called us the “talent”. Put us in wardrobe and makeup. They ran out of spray for my face and said I’m “Ruddy” and “Scaly”! I’ve crashed into too many immovable objects and my “talent” and “cover” days are over! We helped them set the record they asked for and raised over half a million dollars!

My primary focus after I got home from the hospital was keeping my marriage with Laura because the TBI divorce rate is huge at 70%. My second focus was keeping my family together. Everything else I had was intently driven into relearning how to speak, read, write and walk again in Neuro Rehab. I worked harder than they asked me to so I could get my job back!

Unfortunately, I lost most of my friends and communities. They became the casualties of brain injury. As a survivor, I ruminate, isolate, avoid loud noise, bright colors, confusion, strangers and crowds. I fatigue easily.

As a result, I was no longer the late night party animal I used to be. I wasn’t as apt to go on long road trips on a whim. I avoided situations where I would get over stimulated and fatigued – the exact opposite of my old self.

I woke up one day after fighting to recover and realized I was a newer version of my old self and I had lost the human connections I once had. The good news is our neuro rehab physicians and therapists not only helped me remap my brain, but gave me tools which helped me nurture my most valuable relationships. Now it was up to me to reach out to friends and family and hold fast to the human connections that were dear to me.
On my second outpatient speech therapy session I learned my biggest lesson after my accident and it had nothing to do with learning how to talk again.  It had everything to do with being taught how to nurture the most important relationship I had – my marriage! I showed up complaining about having my first disagreement with Laura since the accident.  Remember I didn’t have my wits about me yet and could barely speak, so disagreement was a huge stretch!  I sat down across the table from Kim with a huff.

Greg & Laura-landing pad.png

2016, Greg & Laura Coeur d’Alene Hospital Landing Pad

“What’s wrong?” Kim asked. I tried to explain what happened the night before with Laura. After a few minutes she said, “Greg I’ve heard enough. Where’s Laura?”

“In the car,” I said.

“You need to stand back up in your walker, walk to your car and ask her nicely to come and stand next to you.” Then say these words to Laura.  I’m sorry.  I love you.  Thank you for all you are doing every day to take care of me and then HUG her.

This was the most important thing I learned in all of my therapy, by far!  It was an awakening moment for me. I learned that day I was a traumatic brain injury survivor and others were working their butts off to take care of me.  And, I need to thank them – often.

Thank you Greg for sharing and to your therapist, Kim, who told you what caregivers need to hear often. You are an inspiration and definitely stronger by your experience!

Greg had a 35 year career with Zions Bank and was Senior Vice President before the accident. Now he is a motivational speaker and a professional member of the National Speakers Association. The year 2016 was a big year for Greg as he was the Utah Speech and Hearing Association’s (USHA) Ambassador was awarded Survivor of the Year by the Brain Injury Alliance of Utah (BAIU) in October. He is a mentor and volunteer with Neuro Rehab patients and caregivers at IMC and is writing a Memoir expected to be published in 2018.

 To see Greg’s website visit: www.gregnordfelt.com

On Wednesday, Laura’s will share her perspective.

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.

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.