Cindy Kolbe

@cindy-kolbe | contributor
A lifelong disability advocate, Cindy Kolbe is on a mission to share the power of hope and connection with those in crisis. Her new memoir, Struggling with Serendipity, tells about the road of hope she traveled after her daughter's paralysis— from a small town in Ohio to Seattle, Harvard, Capitol Hill, and around the world. And if you never give up? Hope wins. Check out her new book at bit.ly/memoiroffer.
Cindy Kolbe

How Our Children's Experiences Define Their Passions

I was a new mom responsible for a tiny 6-pound human when I was 23 years old. I often wondered if I was doing anything right. With the passage of time and two more babies to love, I appreciated the comfort of familiar routines and tasks. I was passionate about trying to be a good mom, but I didn’t give a thought to how I would help my children find their passions. My kids were grown before I realized the crux of the matter: parents set a powerful example for children from day one. My kids didn’t grow up with a silver spoon. We lived in a small town in Ohio. Our old house had character with books everywhere. My husband John taught elementary school. I was a stay-at-home mom until my youngest started first grade. Then, I taught literacy at a state institution, and later, I managed group homes.Siblings have their own unique identities and ideas (of course!), with personalities that can be night and day apart. So regardless of the impact of life experiences and the argument for nurturing, the set of genes they were born with factored in. My first child, Ben, was born with an old soul — calm and thoughtful yet driven by insatiable curiosity. As a toddler, he made many charts and was drawn to endless books. He had been fascinated by “The Electric Company”, a children’s show on PBS, and taught himself how to read long before he started school. My daughter Maria’s personality contrasted with her brother’s; she popped out ready to rock and roll. She woke up around midnight, wide-eyed, happy and looking for toys. On dark quiet nights, I carried an alert baby girl and wore a path around our dining-room table, softly patting her back to encourage her to go back to sleep. At 9 months, she walked fast, with a persistent fondness for daredevil acrobatics. During Maria’s first story hour at the library without me at 3 years old, she somehow talked her way onto the librarian’s lap. At home, she grabbed books and a stool to “read” to her baby sister, Beth. Our kids visited their dad’s classroom, but Maria was the only one who talked about being a teacher, a vocation John loved. Beth was shy, inquisitive and on the quiet side. She talked a little later than usual, because her big sister talked for her. At 4 years old, Maria lived in her Snow White dress and often announced the cast of her princess story: I was the wicked queen, Ben was the handsome prince, and Beth was the dwarf Dopey — which Maria pronounced “Dupey.” Our youngest liked to pat our backs during big bear hugs. We called her our little lawyer for her ability to talk her way in and out of most anything with a big dimpled smile. When Beth was 14, our lives changed in the blink of an eye. A car accident left her with a cut spinal cord and quadriplegia, and I expected her to lose her smile. I’m so grateful she didn’t. Like her brother and sister, Beth found her passion on her own: giving back to the amazing disability community. Today, she is a lawyer with ongoing pro-bono work for disability nonprofits and businesses. Maria is passionate about education and supporting children with disabilities. Like her dad, she cares deeply about her students. Ben became an avid reader in college and graduate school. He coaches high-school robotics, took his team to state for the first time and works as a librarian. I love books as much as he does, and I’m thrilled to see my first book in print, a memoir about our family’s new directions after Beth’s injury. Maria, Beth, and I are proud to be disability advocates, each in our own ways. John and I didn’t set out to help our children find their passions, but I’m so glad they found them on their own. Actions really do speak louder than words. The best way to help children find their passions? Share yours with them.

Cindy Kolbe

How Our Children's Experiences Define Their Passions

I was a new mom responsible for a tiny 6-pound human when I was 23 years old. I often wondered if I was doing anything right. With the passage of time and two more babies to love, I appreciated the comfort of familiar routines and tasks. I was passionate about trying to be a good mom, but I didn’t give a thought to how I would help my children find their passions. My kids were grown before I realized the crux of the matter: parents set a powerful example for children from day one. My kids didn’t grow up with a silver spoon. We lived in a small town in Ohio. Our old house had character with books everywhere. My husband John taught elementary school. I was a stay-at-home mom until my youngest started first grade. Then, I taught literacy at a state institution, and later, I managed group homes.Siblings have their own unique identities and ideas (of course!), with personalities that can be night and day apart. So regardless of the impact of life experiences and the argument for nurturing, the set of genes they were born with factored in. My first child, Ben, was born with an old soul — calm and thoughtful yet driven by insatiable curiosity. As a toddler, he made many charts and was drawn to endless books. He had been fascinated by “The Electric Company”, a children’s show on PBS, and taught himself how to read long before he started school. My daughter Maria’s personality contrasted with her brother’s; she popped out ready to rock and roll. She woke up around midnight, wide-eyed, happy and looking for toys. On dark quiet nights, I carried an alert baby girl and wore a path around our dining-room table, softly patting her back to encourage her to go back to sleep. At 9 months, she walked fast, with a persistent fondness for daredevil acrobatics. During Maria’s first story hour at the library without me at 3 years old, she somehow talked her way onto the librarian’s lap. At home, she grabbed books and a stool to “read” to her baby sister, Beth. Our kids visited their dad’s classroom, but Maria was the only one who talked about being a teacher, a vocation John loved. Beth was shy, inquisitive and on the quiet side. She talked a little later than usual, because her big sister talked for her. At 4 years old, Maria lived in her Snow White dress and often announced the cast of her princess story: I was the wicked queen, Ben was the handsome prince, and Beth was the dwarf Dopey — which Maria pronounced “Dupey.” Our youngest liked to pat our backs during big bear hugs. We called her our little lawyer for her ability to talk her way in and out of most anything with a big dimpled smile. When Beth was 14, our lives changed in the blink of an eye. A car accident left her with a cut spinal cord and quadriplegia, and I expected her to lose her smile. I’m so grateful she didn’t. Like her brother and sister, Beth found her passion on her own: giving back to the amazing disability community. Today, she is a lawyer with ongoing pro-bono work for disability nonprofits and businesses. Maria is passionate about education and supporting children with disabilities. Like her dad, she cares deeply about her students. Ben became an avid reader in college and graduate school. He coaches high-school robotics, took his team to state for the first time and works as a librarian. I love books as much as he does, and I’m thrilled to see my first book in print, a memoir about our family’s new directions after Beth’s injury. Maria, Beth, and I are proud to be disability advocates, each in our own ways. John and I didn’t set out to help our children find their passions, but I’m so glad they found them on their own. Actions really do speak louder than words. The best way to help children find their passions? Share yours with them.

Cindy Kolbe

Gifts of Caregiving as a Profession and as a Parent

  My career in caregiving began in an unusual way. A few weeks after my wedding, newly 19, I accepted my first full-time job as manager of my first group home in Ohio. My husband and best friend, John, moved with me to a lovely old home where we lived with four men with developmental disabilities. What I lacked in experience I made up for with heart. It was 1977 during the first wave of the exodus from Ohio’s institutions. The residents sent to group homes initially were the very best candidates for community living. Even so, the transition challenged everyone involved, every day. Years later, John and I raised three children in Tiffin, Ohio. When my youngest child started first grade, I re-entered the work force at an institution. I provided direct care for several months on a ward where most of the residents had grown up without a family. I watched and listened to better understand the residents. I learned that everyone, verbal and nonverbal, communicated in many ways. My job was difficult and humbling. It began in November, and on Christmas Eve, I clocked in at 3 p.m. to work a double shift until 7 a.m. the next day. A conversation with a co-worker that night made a lasting impression on me. She had recently returned from maternity leave and told me how being a mom changed her perspective. When she thought of each resident as someone’s son or daughter, she cared for them as though they were her own child. Seven years later, I still worked at the institution, but in a better job teaching literacy and community skills. One weekend, I drove home from my son’s college concert with my youngest daughter asleep in the passenger seat. I woke Beth, 14 years old, in an effort to keep my eyes open, giving her a front-row view of the accident that followed. She was paralyzed from the chest down with a cut spinal cord at C6-7, quadriplegic. I started a new job as a 24/7 caregiver for my teenage daughter. I desperately wanted Beth’s life to be easier, but it wasn’t about me. She decided early on that she would become independent again, no matter how long it took. I supported her goal. I resisted the urge to jump in and help. I learned to step back and wait for cues. I erred on the side of fostering independence, though it was always hard to watch her struggle. Help wanted and help needed could be two different things. When Beth graduated from high school four years after her injury, she had figured out how to be independent as a quad. What a wonderful thing, to take care of yourself, by yourself! I worked at two more group homes as manager where I supervised other staff and worked with residents. More than 25 years after my very first group home job, the exodus from the institutions had slowed; the residents new to community living often had multiple disabilities and challenges. Regardless, it was my responsibility to do everything I could to improve their quality of life. Not an easy task, especially when a resident became violent or refused to cooperate. Remembering my earlier Christmas conversation, I aimed for a level of care that I would want for my son or daughters. With few staff and fewer resources at the group homes, I fell short, but I took a measure of pride in trying. My career in caregiving led me to a deeper understanding of the connections that add meaning to our lives. Few jobs are more significant. Given or received, I hope the gifts of caregiving are truly appreciated. 1. Listening 2. Empathizing 3. Connecting 4. Encouraging 5. Improving Quality of Life — ideally, for the person needing help and the caregiver!

Cindy Kolbe

Gifts of Caregiving as a Profession and as a Parent

  My career in caregiving began in an unusual way. A few weeks after my wedding, newly 19, I accepted my first full-time job as manager of my first group home in Ohio. My husband and best friend, John, moved with me to a lovely old home where we lived with four men with developmental disabilities. What I lacked in experience I made up for with heart. It was 1977 during the first wave of the exodus from Ohio’s institutions. The residents sent to group homes initially were the very best candidates for community living. Even so, the transition challenged everyone involved, every day. Years later, John and I raised three children in Tiffin, Ohio. When my youngest child started first grade, I re-entered the work force at an institution. I provided direct care for several months on a ward where most of the residents had grown up without a family. I watched and listened to better understand the residents. I learned that everyone, verbal and nonverbal, communicated in many ways. My job was difficult and humbling. It began in November, and on Christmas Eve, I clocked in at 3 p.m. to work a double shift until 7 a.m. the next day. A conversation with a co-worker that night made a lasting impression on me. She had recently returned from maternity leave and told me how being a mom changed her perspective. When she thought of each resident as someone’s son or daughter, she cared for them as though they were her own child. Seven years later, I still worked at the institution, but in a better job teaching literacy and community skills. One weekend, I drove home from my son’s college concert with my youngest daughter asleep in the passenger seat. I woke Beth, 14 years old, in an effort to keep my eyes open, giving her a front-row view of the accident that followed. She was paralyzed from the chest down with a cut spinal cord at C6-7, quadriplegic. I started a new job as a 24/7 caregiver for my teenage daughter. I desperately wanted Beth’s life to be easier, but it wasn’t about me. She decided early on that she would become independent again, no matter how long it took. I supported her goal. I resisted the urge to jump in and help. I learned to step back and wait for cues. I erred on the side of fostering independence, though it was always hard to watch her struggle. Help wanted and help needed could be two different things. When Beth graduated from high school four years after her injury, she had figured out how to be independent as a quad. What a wonderful thing, to take care of yourself, by yourself! I worked at two more group homes as manager where I supervised other staff and worked with residents. More than 25 years after my very first group home job, the exodus from the institutions had slowed; the residents new to community living often had multiple disabilities and challenges. Regardless, it was my responsibility to do everything I could to improve their quality of life. Not an easy task, especially when a resident became violent or refused to cooperate. Remembering my earlier Christmas conversation, I aimed for a level of care that I would want for my son or daughters. With few staff and fewer resources at the group homes, I fell short, but I took a measure of pride in trying. My career in caregiving led me to a deeper understanding of the connections that add meaning to our lives. Few jobs are more significant. Given or received, I hope the gifts of caregiving are truly appreciated. 1. Listening 2. Empathizing 3. Connecting 4. Encouraging 5. Improving Quality of Life — ideally, for the person needing help and the caregiver!

Cindy Kolbe

Self-Care Strategies for Caregivers

Caregiving is handed down through our heritage and woven through our genetics and instincts. We take care of others through different stages of life, a meaningful expression of love for family and friends, young and old. I sought out that role as a mom of three little ones. However, I never expected to be a full-time caregiver for one of my teenaged children. “Life can change in a moment” is a common phrase, yet only some of us experience tragic events that alter literally everything. My moment arrived in the last dark minutes of a chilly spring day when I fell asleep at the wheel and nearly lost my youngest daughter, Beth. She survived with a C6-7 spinal cord injury. I quit my job at a state institution for a new one as a full-time personal care assistant. Beth took on the world with stubborn teenage determination. She led the way in her new wheelchair while I struggled to keep up, saddled with guilt, pain, anxiety and depression. At the time, I needed a caregiver, too. Who takes care of the caregiver? You guessed it. On top of caregiving — always a challenge — caregivers need to fend for themselves. But how? The responsibility of the job is often demanding, time-intensive, exhausting, and uncertain. Beth’s first days back at home after her injury, I couldn’t sleep at night, afraid of losing her. Every morning, I worried if the day would end in the hospital. Bone-tired and deeply sad, I joined the ranks of caregivers who neglect themselves, particularly through the toughest times. Here’s what I learned: 1. Be bold. Develop assertiveness to better represent yourself, and to be a strong advocate for others. Use your voice. 2. Connect. Build a partnership with the person you are assisting based on mutual respect. Try to understand their perspective. Empathy. 3. Prioritize. Decide what matters most. Not everything is important. Keep it simple. 4. Relax. Do gentle stretching and deep breathing several times a day. Look for and appreciate the good things. Keep it simple. 5. S.O.S. Ask for help when you need it. From doctors, too! With family and friends, use tact and be specific, whether it’s changing sheets, picking up groceries, a meal out, babysitting, or a much-needed foot rub. Be grateful. 6. Me-time. Carve out a little time for a favorite hobby or book. At the rehab hospital after Beth’s injury, we read a “Harry Potter” book out loud to each other in the evenings. Create bright spots on difficult days. Small great things. Don’t learn the hard way that self-care for caregivers is a necessity, not an option. Gi ve yourself the best gift: self-care! Follow Cindy and Beth’s journey at Struggling with Serendipity (www.strugglingwithserendipity.com).

Cindy Kolbe

Self-Care Strategies for Caregivers

Caregiving is handed down through our heritage and woven through our genetics and instincts. We take care of others through different stages of life, a meaningful expression of love for family and friends, young and old. I sought out that role as a mom of three little ones. However, I never expected to be a full-time caregiver for one of my teenaged children. “Life can change in a moment” is a common phrase, yet only some of us experience tragic events that alter literally everything. My moment arrived in the last dark minutes of a chilly spring day when I fell asleep at the wheel and nearly lost my youngest daughter, Beth. She survived with a C6-7 spinal cord injury. I quit my job at a state institution for a new one as a full-time personal care assistant. Beth took on the world with stubborn teenage determination. She led the way in her new wheelchair while I struggled to keep up, saddled with guilt, pain, anxiety and depression. At the time, I needed a caregiver, too. Who takes care of the caregiver? You guessed it. On top of caregiving — always a challenge — caregivers need to fend for themselves. But how? The responsibility of the job is often demanding, time-intensive, exhausting, and uncertain. Beth’s first days back at home after her injury, I couldn’t sleep at night, afraid of losing her. Every morning, I worried if the day would end in the hospital. Bone-tired and deeply sad, I joined the ranks of caregivers who neglect themselves, particularly through the toughest times. Here’s what I learned: 1. Be bold. Develop assertiveness to better represent yourself, and to be a strong advocate for others. Use your voice. 2. Connect. Build a partnership with the person you are assisting based on mutual respect. Try to understand their perspective. Empathy. 3. Prioritize. Decide what matters most. Not everything is important. Keep it simple. 4. Relax. Do gentle stretching and deep breathing several times a day. Look for and appreciate the good things. Keep it simple. 5. S.O.S. Ask for help when you need it. From doctors, too! With family and friends, use tact and be specific, whether it’s changing sheets, picking up groceries, a meal out, babysitting, or a much-needed foot rub. Be grateful. 6. Me-time. Carve out a little time for a favorite hobby or book. At the rehab hospital after Beth’s injury, we read a “Harry Potter” book out loud to each other in the evenings. Create bright spots on difficult days. Small great things. Don’t learn the hard way that self-care for caregivers is a necessity, not an option. Gi ve yourself the best gift: self-care! Follow Cindy and Beth’s journey at Struggling with Serendipity (www.strugglingwithserendipity.com).

Cindy Kolbe

Self-Care Strategies for Caregivers

Caregiving is handed down through our heritage and woven through our genetics and instincts. We take care of others through different stages of life, a meaningful expression of love for family and friends, young and old. I sought out that role as a mom of three little ones. However, I never expected to be a full-time caregiver for one of my teenaged children. “Life can change in a moment” is a common phrase, yet only some of us experience tragic events that alter literally everything. My moment arrived in the last dark minutes of a chilly spring day when I fell asleep at the wheel and nearly lost my youngest daughter, Beth. She survived with a C6-7 spinal cord injury. I quit my job at a state institution for a new one as a full-time personal care assistant. Beth took on the world with stubborn teenage determination. She led the way in her new wheelchair while I struggled to keep up, saddled with guilt, pain, anxiety and depression. At the time, I needed a caregiver, too. Who takes care of the caregiver? You guessed it. On top of caregiving — always a challenge — caregivers need to fend for themselves. But how? The responsibility of the job is often demanding, time-intensive, exhausting, and uncertain. Beth’s first days back at home after her injury, I couldn’t sleep at night, afraid of losing her. Every morning, I worried if the day would end in the hospital. Bone-tired and deeply sad, I joined the ranks of caregivers who neglect themselves, particularly through the toughest times. Here’s what I learned: 1. Be bold. Develop assertiveness to better represent yourself, and to be a strong advocate for others. Use your voice. 2. Connect. Build a partnership with the person you are assisting based on mutual respect. Try to understand their perspective. Empathy. 3. Prioritize. Decide what matters most. Not everything is important. Keep it simple. 4. Relax. Do gentle stretching and deep breathing several times a day. Look for and appreciate the good things. Keep it simple. 5. S.O.S. Ask for help when you need it. From doctors, too! With family and friends, use tact and be specific, whether it’s changing sheets, picking up groceries, a meal out, babysitting, or a much-needed foot rub. Be grateful. 6. Me-time. Carve out a little time for a favorite hobby or book. At the rehab hospital after Beth’s injury, we read a “Harry Potter” book out loud to each other in the evenings. Create bright spots on difficult days. Small great things. Don’t learn the hard way that self-care for caregivers is a necessity, not an option. Gi ve yourself the best gift: self-care! Follow Cindy and Beth’s journey at Struggling with Serendipity (www.strugglingwithserendipity.com).

Cindy Kolbe

Advice for Parents of a Child With Spinal Cord Injury

A friend asked me to share what I wish I had been told at the beginning when my daughter Beth was injured. She has a spinal cord injury at C6-7. My first list began with three thoughts: Breathe deeply. Hug. Rest. Repeat. Find a good listener. Share your feelings with someone who cares. Let other people help. Get comfortable asking for help until you are back to being the one who can give instead of receive. Then I had to stop writing the list. I realized that I had been told these things, in one way or another. Thankfully, family and friends had rallied to support us. Even so, I didn’t sleep during the first days and was unable to talk about my feelings. I also could not ask for help. I had to rethink my list. I started over with things I had not heard soon after the accident. 1. Find the best medical options. Begin with a top hospital. Take time to research rehab centers. For example, consider the Chicago Shriners Hospital for children up to 21 years of age for rehab (or outpatient treatment). Be where you need to be. After intensive care, Beth transferred to a Toledo rehab center. It didn’t feel right, so we soon moved to another. The second center in Green Springs was perfect for physical therapy, but the doctors on staff had no experience with spinal cord injury. We had to wait until Beth came home to connect with great doctors. 2. Seek support right away. Find local disability groups. For spinal cord injuries, contact the Reeve Foundation’s Peer & Family Support program. Personal mentors and a paralysis resource guide are available at the Christopher & Dana Reeve Foundation. Also, check out AbleThrive. I didn’t reach out to the wonderful spinal cord injury group in Toledo until months after Beth’s injury. Sooner would have been better. 3. Trust the experts. Believe what the top doctors and physical therapists tell you. Through the first weeks after the accident when Beth could not move, I thought that the experts were giving her false hope about things like sitting up unassisted. I wanted to believe them, but I didn’t understand that progress after a C6-7 spinal cord injury takes sustained effort over an incredibly long time. 4. Don’t lose yourself in fear. The first year after the accident, I worried endlessly about the health risks of quadriplegia, ready to drive to the emergency room at any moment. As Beth did everything she could to be healthy, she showed me that I didn’t need to be afraid. Professional counseling helped me, too. 5. Look for hope, even when it is out of sight. In the beginning, too much time passed before I truly believed that Beth would be OK. She believed it from the start, and hope is a powerful thing. I could not imagine her becoming independent or traveling the world or loving her life. I’m happy that I was wrong. Cindy and her daughter, Beth. Follow this journey on Struggling With Serendipity. The Mighty is asking the following: Write the article you wish you’d found the first time you Googled your or a loved one’s diagnosis. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Cindy Kolbe

Lessons in Independence From My Daughter With a Spinal Cord Injury

My daughter lost her independence with a C6-7 spinal cord injury — for good, or so I thought. After the car accident, she tapped into a well of hope and focused on the prize of increased physical ability. Beth, 14, left inpatient rehab early to start her first year of high school on time in our small Ohio town. She insisted on a manual chair she could barely push, instead of a power chair. Friends sat next to her in class, took notes, handled her books, broke her leg spasms, and left class early with her. I met her at school mid-day and drove her home when the fever of another infection spiked. She needed total assistance with almost everything, including transfers into a car. The beginning of high school and outpatient physical therapy exhausted Beth. Even so, she raised her goal from more to complete independence, against all odds. I admired her persistence, but the bar seemed too high. After the first year of high school, she no longer needed help from her friends. They continued to sit by her in class simply because it was more fun that way. By her senior year, she thrived with a non-stop schedule of school, swimming, friends, volunteering, and mentoring. We traveled to swim meets and she depended on my help for flights. Beth’s stamina and strength continued to increase, bit by bit. At my insistence, my daughter started her first year at Harvard College with an assistant. After I left her in a freshman dorm room, she refused to ask for help with any aspect of personal care. With stubborn teenage determination, she pushed herself to do it all, which required a significant amount of extra time and patience. …In addition to challenging classes and swim training as a member of the U.S. Paralympics National Team. The beginning of college overwhelmed Beth. After the first year, taking care of herself took less time. She competed on the Harvard Women’s Swimming Team and dressed efficiently in her wheelchair in the varsity locker room, sometimes taking an extra minute for the zipper on her skinny jeans. Eight years after her injury, she still needed a boost to get from her wheelchair to the seat of a car. Beth graduated from Stanford Law School and accepted her dream job at a law firm in Washington, D.C. I helped with the move to her favorite big city. She wasn’t worried about living alone for the first time or the inaccessibility of her apartment. With a stackable dryer on top of a washer, she literally threw wet clothes into the dryer and bent a metal hanger into a hook to get the dry clothes out. The new job stressed Beth, but only during the first months. Passionate about health policy work, she also volunteered for disability cases. She wheeled several blocks to and from the firm in every kind of weather, and rode taxis and Ubers on her own for dates and other social events. She opened the back door of the car and placed one hand on the back seat. The other hand pushed down on the closest big wheel of her chair to lift her body over the gap. No help needed. Sitting on the backseat, she lifted her legs into the car and told the driver how to fit the wheelchair in the trunk. A sweet success after a decade of trying and failing to transfer into cars by herself. Today, she often travels on her own by plane for work — and loves to fly with her fiancé to vacation spots around the country and the world. Independence? Priceless. 6 Things Beth Taught Me About Independence After Spinal Cord Injury 1. Reject conventional limits. Things are not what they seem at first. 2. Accept daily challenges and cultivate patience. Progress can be very slow. 3. Fail often. Persistence is the key. 4. Stay active and strive for good health. Reduce health risks. 5. Pursue passions. Help yourself by contributing in some way. 6. Embrace positivity. Life is good! Follow this journey on Struggling With Serendipity. We want to hear your story. Become a Mighty contributor here . Thinkstock image by Katarzyna.