On the fifth anniversary of my mother’s passing…

I opened my email today to read these words from a reader, and I knew my mommy was smiling.

Letter below (edited to remove identifying features since it mentions children):

Dear Darcy,
I finished From My Mother this morning and was so very moved by it.  How do I begin to thank you for the unselfish gift you have given by sharing your heart-wrenching journey and your precious family especially Jo Lyn and Dustin and Randy.  Your family became very real to me and I was lifted up by the incredible strength, humor, honesty and spirit moving through their lives as well as yours.  I was 38 when I lost my mom and I cannot imagine being in my teens and mid twenties experiencing what you did.  What wisdom you have already gained and what an amazing thing you have done to honor the lives of your brother and your mom by sharing what you learned with others.

I feel blessed that our paths crossed this year at the conference because I could see your face and smile often while I was reading.  I had no idea when I left home for the conference,  you and your book would be what I’ll remember most about my time in DC.  (One of my dearest friends always tells me there are no “coincidences” only “God-incidences” and meeting and talking with you last weekend was one of those times for me.) 

As I reached the end of the book this morning still in my pajamas with tears streaming down but a big smile on my face, I realized today is September 20th and your mom’s 5th Heavenly Birthday.  I truly love writing to you today knowing I can be a small part of such an important day in your young life.  My family will celebrate my mom’s xxth Heavenly Birthday on (month and date) next month, and now my grandkids celebrate along with us.  We have worked to help them know Mom through stories and pictures and it thrills me when they ask their questions about her life and imagine her life in Heaven!

I think I told you I did a small writing piece about the day of my mother’s passing while I was teaching middle school, and it was so difficult to do.  My respect and admiration for you in writing your book is hard to put into words.  I know it was a labor of love — not to mention very fine writing.  What a gift for Eli and Hannah one day when the time is right.  How proud they will be.

My granddaughter is 7 now and I thought of her often while I was reading.  With her mom, my daughter-in-law, having the adult onset and her only brother diagnosed at 4 with congenital DM1, one day I will share your book with her.  You have helped and inspired me more than I can express as I try not to worry about what is ahead for her and her brother.

Sending much love to you and all of your family,

a friend made at the MDF conference


Jo Lyn Bartz – August 24th, 1960 – Sept 20th, 2016

May my mother rest in peace and her story help others. Love you, mommy!


Photo Blog for Myotonic Dystrophy Foundation Conference

This is my brother Dustin. He was born with congenital myotonic muscular dystrophy.


He inherited myotonic muscular dystrophy from my mother, Jo Lyn. She had adult onset myotonic dystrophy.


My brother lived 13 years, and my mother 51. I did not inherit from my mother and live a “genetically typical” life with my husband and two children. However, there is a beautiful story in the life of my brother and mother, and I’ve spent almost the last five years working to share it.

3d book cover

From My Mother was released March 29th of 2016. This last weekend, I took my story to my first Myotonic Dystrophy Foundation conference in Washington, DC and shared my family’s stories with the myotonic dystrophy community.

Me and friend Mindy Kim

I got to share From My Mother with women affected by the same rare genetic disease as my mother.


I got to speak with multiple senate health policy advisor staff and leave a copy of From My Mother with Senator Pat Roberts.

Me and friend Eric Wang

I got to talk with people I look to as heroes, medical researchers searching for a cure, including a special one, Eric Wang, who is the child of a father who has myotonic dystrophy and the sibling to an affected brother.


In fact, the medical myotonic dystrophy community showed so much support for a first person family narrative that follows the full life arc of a child affected with congenital myotonic dystrophy and a woman affected with adult onset from diagnosis to death that From My Mother went home to six different countries after the conference.

Me and friend  Tina Dailor Pinsonneault

I formed lifelong friendships with people I care about and hope my story helps like my roommate Tina, a woman who works hard to raise her children and take care of herself while affected by myotonic dystrophy.


I got to see medical researchers dance right along side their patients.


I shared From My Mother with MDF board members like Jeremy Kelly, a husband, brother-in-law and father of loved ones affected with myotonic dystrophy.

Me and friend Rob Besecker

I got to talk “shop talk” with a friend affected by myotonic dystrophy type two and in the final stages of finishing a book about his own life story.


I got to browse top research by young medical professionals budding into the next great grant proposal or research projects for the myotonic dystrophy community.


I got information about a brain study looking for participants from families affected by myotonic dystrophy and have a stack of paperwork coming in the mail to look over.


I got to listen to highly influential individuals like Dr. Stephen Katz, Director of The National Institute of Arthritis and Musculoskeletal and Skin Diseases, speaking at our congressional briefing on myotonic dystrophy research funding.


I got to hear stories from people I hope read my story. I got to listen to people who had read the story tell me how it helped them understand something about human nature and disease… I got to cry over a video about heroes in the myotonic dystrophy community and realize how special the people involved here are, how each person matters, and how each life counts. I got to feel validated in childhood experiences that before I felt so alone in, supported in my passion to care about a rare disease, and connected to people in families like mine.

I got thanked by a mother for writing my book because she read half of it overnight and was going to finish on the plane home… I got to hug a woman who thanked me for writing From My Mother as she said “thank you for sharing your story, because it’s our story.” I could name some authors who actually make money in writing in a book, but how many writers actually get that?

I completely sold out of my book stock at the conference (and should have taken more…), but I did a little better than break even on my trip the Myotonic Dystrophy Foundation‘s conference financially, and that only because I had a roommate split the hotel cost with me. However, I found readers with whom I belonged, an audience that deserved a book about a family like theirs when one quite like it didn’t exist before, doctors who wanted the book to share with families in Italy or Sweden and researchers who wanted the book because it would make the data points more human, more meaningful…

This trip was part of my purpose, part of what I’m meant for, part of what makes me human, and part of what connects us all – it was a trip to share my voice in this montage of the human story with others willing to share their own.

Next year the Myotonic Dystrophy Foundation‘s annual conference is in San Francisco, and it is supposed to be twice as big in attendance. I’m already making plans.

And on the plane ride home, I wrote the first few pages of my next book…

God bless those who hope. There’s humanity in that.

MDF Conference Day 1

Tonight I got the amazing opportunity to spend time in real human conversation with two of the most important researchers in the scientific myotonic muscular dystrophy community – Dr. John Day (https://med.stanford.edu/profiles/john-day) and Dr. Jacinda Sampson (https://med.stanford.edu/profiles/jacinda-sampson) of Stanford’s Neuroscience Health Center. These are some of the most experienced and published clinical researchers in the community. I’ll tell you what – for me this was cooler than meeting Chipper Jones.

A friend told Dr. Day and Dr. Sampson separately about From My Mother and my family’s story, and both took an active interest, yes in part in the book, but in me as a person. It was so gratifying to have genuine talk time with Stanford renowned researchers spending time listening to stories of my childhood, my dreams of advocacy, and some of my concerns with care.

It was humanizing that both Dr. Day and Dr. Sampson took the time to listen to me. I mean it, they listened. They asked questions. They let me finish sentences. They let me ask them questions. They looked me in the eye and smiled. They understood.

In fact twice in the night someone else came over to talk to Dr. Day, and he came back and found me to continue our conversation and apologized for getting pulled away. The second time Dr. Day spoke with me, he asked “so how are you handling this? I know that first conference must be hard.” His empathy and authenticity in our short time together left an impression I’ll never forget. He cared about how I was doing. His background let him anticipate some of my potential difficulties, and he cared to reach out to try to make my existance a little easier, a little warmer.

Dr. Day didn’t treat me with a prescription or diagnosis, and I didn’t need that. He treated me with care. He was interested in me as a person. And honestly, he helped me feel well.

Dr. Sampson listened to me tell her about my experiences as a child with the Primary Children’s Hospital in Utah and how Dustin’s time with them in research trials was the best time for me as sibling because the staff took the time to educate me in the process of treating my brother. Turns out she had done her internship, residency and fellowship there but not quite at the times where our paths would have crossed. But we talked and shared an important common memory. She validated a part of my childhood that few other people could.

Doctors like Dr. Day and Dr. Sampson who care genuinely about people and put effort, energy and empathy into families – even families that were never their patients – these type of doctors can make a world of difference.

Empathy matters and it filled my heart with a hopeful satisfaction to spend time with a whole room of people who know how important the human aspect is in working with families affected by genetic disease. As a sister and a daughter, I’m grateful doctors like Dr. Day and Dr. Sampson give their efforts and empathy in care and a cure for myotonic muscular dystrophy.

Myotonic Dystrophy Foundation Annual Conference 2016

Right now I’m sitting alone in the Chicago O’Hare airport. In a few hours, I’ll be in Washington DC checking into my hotel which is hosting the 2016 Myotonic Dystrophy Foundation Annual Conference.

I’ve never been to an MDF conference before, and to tell you the truth, I’m not really sure to know what to expect from my emotions. I’m going on invitation from the MDF program director, Paul Formaker, who invited me to share my book, From My Mother (https://www.amazon.com/My-Mother-Surviving-Thriving-Ravaged/dp/1632132249/ref=sr_1_1?ie=UTF8&qid=1473948236&sr=8-1&keywords=from+my+mother), with the conference.

The prospect of meeting in person people I’ve grown to care about through Facebook myotonic dystrophy support groups is exciting, but also intimidating. Learning more about myotonic dystrophy and current research intrigues me, but I’m afraid so much of what I was told when I was young and my brother was alive will feel out of date or wrong. I want to share my story with families like mine, but there is a part of me that fears what a woman like my mother might feel in reading a story at least partially about her death.

I’ve lain awake at night lately thinking about these next few days, trying to role play how some of the conversations might go. What will it be like to shake hands with a woman affected by the exact same rare disease as my mother? Will I cry if I see a boy like my brother? What would I say to another adult sibling like me? How do I get to know someone who read my life story before meeting me? When we go as a group to Capitol Hill, will I want to talk or just listen?

With all the questions, I have very few answers. I will probably cry at some point, hopefully in private. I don’t think I’ve been in the same room as a woman with myotonic muscular dystrophy since my mother passed five years ago. September has been a hard month for me over the years. The weather changes, routine changes, and memories flood in.

When I was 16, my brother passed away at age 13 on September 23rd, 2002. When I was 25, my mother passed away at age 51 on September 20th, 2011. Her funeral service was on the same day my brother died – the anniversary of which is eight days away.

I don’t think I show much of what I feel anymore, but I feel it, and sometimes I write about it. I’ve never really learned how to contain those pangs of loss, or to control the stray thoughts. I feel it every year; I feel it in the quiet moments, when I’m alone, when no one will notice, when the thoughts in my head are louder than the noise around me.

My dad and I visited the gravesite of my mother and brother Monday. I left flowers and said a prayer. Then I went to share the story of From My Mother with the Minneapolis PEO, a group of women who prayed for me on my journey. That prayer helped immensely. I thought “This is where I’m meant to be. I can do this. I can be brave enough.”

That feeling lasted through the first airport, while my dad was still next to me. And I still feel kind of brave, but I’d be lying if I said I wasn’t afraid.

Some moments are bigger than our conscious brain can comprehend. “Life changing” is a hard word when you have two children and a mortgage. I’m not necessarily looking for life changing. If I was I might be in Chicago permanently. A few months ago I showed my husband a job posting with the Muscular Dystrophy Association looking for a social media director for their national branch in Chicago. I spoke to someone on the phone about it and daydreamed, but ultimately decided not to apply. I like the life I have and it just wasn’t the right time to join the urban jungle with my 10 month old daughter and 5 year old son. I don’t need life changing, at least not in logistics. But I do think this expereince will be transformational.

I already know I’ll come back a different person, and God willing, after this, I won’t have to decide what’s next so much as submit to what’s next and do my best to follow the call.

I’m okay with having fear inside me today. Fear comes when we are standing at the edge of something transformational. While this fear is a bit uncomfortable, it’s not unwelcome. This conference, this weekend of opportunity to interact with people I care so much about from a Facebook profile or shared family experiences, this is one of those tender moments in life where vulnerability is preferable – necessary.

I’ll blog more as I go, but for now, I’m going to embrace the uncomfortable edge of being so close to something I was meant for and make sure I’m ready for my next flight!

I’ll be in DC soon!

Breaking Up with Perfect: Kiss Perfection Good-Bye and Embrace the Joy God Has in Store for YouBreaking Up with Perfect: Kiss Perfection Good-Bye and Embrace the Joy God Has in Store for You by Amy Carroll
My rating: 5 of 5 stars

Having come to realize that from my childhood I tried to escape the stress of what was beyond my control by trying to control my own success through overachieving, this book jumped out at me when I visited a local Christian book store. I needed the read.

My path of burying myself in achievements, tasks and “success” as defined by a resume and society at large has done well for putting me logistically in a good position, but sometimes it makes me hard on myself. More importantly, it makes me hard on others. To try to be a better person, more kind, less judgmental and more merciful, I picked up this book. I’m hoping I can have more realistic standards for my home, my children, my husband and those around me. There is something to being able to achieve, but there is also something to being able to love without conditions, to be gracious instead of measuring and guiding other’s behavior.

Sometimes, prayer is more important than society’s view of progress. Often, enjoying the blessing is more important than trying to make the situation better. And this book will help me capture more of those moments.

View all my reviews

To my daddy…

Dads are special. Many dads deserve a mention, a hug and appreciation today. In fact, my two children and I took my husband out to lunch today and showered him with hardback copies of the new Star Wars offical cannon.

(I’m going to read Rey’s part of Before the Awakening myself at the least…)


But this note is for my daddy, and men like him who sacrifice so much of themselves to be caregivers.

Daddy, you are a man of strength, a man who has over and over again had to use emotional endurance to support and care for those around you.

You came to all my home games for volleyball, basketball and softball then cheered on the weekends for summer league. You played catch with me each day after work when we lived in Utah. You coached my softball team for years and instilled in me a love for the game, but also a love for hard work and being a teammate.

You spoke candidly with me on long trips to the hospitals, told me the truth when times were hard, and respected my intelligence and treated me as a decision maker in the family with conversations that built me as a person. I was able to come to you with my problems because I had seen your honesty in your struggles, your faith when you stood against your fears, and how you loved wholeheartedly even in the toughest of times.

randy family
Dad as caretaker in 97

You carried my brother on your back so we could hike mountains together, pushed his wheelchair through sand so I could enjoy the beach as a child. You took me to the Fun Dome for lazer tag regularly with friends so I could feel the joys and adventure youth should find. You were the coolest dad on the block and my friends were easier to be around because you created opportunities for me with coaching and traveling trips. Somehow in all the chaos of what our daily life was, you carved out for me a spot to play, to mature, and to be myself.

I saw you share your Cheetos with Dustin and drink your Mountain Dew even after Dustin backwashed those Cheetos into your drink. As a habit of life, you put others first, and the unnecessary conveniences second. I’d like to learn more of that as I mature. I know I fail in worrying too much about things that don’t matter. There are times I wish I could be more like you in keeping Ultimate Worth in perspective and not chasing life’s goals past the goal of loving others well. You are a wonderful model of a man who inherently values each human life and wants above all else to touch another life with smile and simple joys.

You held mom’s hand at softball games, sat next to her, walked her pace, and involved her in real relationships you could both share joy in with other parents. So many times, you drove all the long hours from Kansas to New Mexico yourself to help mom enjoy her family. You taught me the manners of please and thank you and ma’am so I could fit in with the Southern Hospitality style of my mother’s family.

You were the anchor for mom as her world shifted and ultimately her earthly life ended due to a genetic muscle weakening condition that had been building in her since birth.  You took on all the burden of a man who married discovered a genetic disease in your family after the birth of a son with congenital myotonic dystrophy, poured love into your children no matter how different we were from any original expectation, and stayed married till death did you part to the most wonderful mother and a good woman.

randy and jo lyn
Mom and dad in 2010 era

You comforted me in the hospital when mom lay on her bed with a ventilator hooked to her neck. In fact, you tried to play caretaker for me and my newborn through the process. You tried to look after everyone else first before yourself. You have endured so much of what other men could and have walked away from. You embraced the boy Dustin was and loved him unconditionally. You embraced the woman Jo Lyn was and loved her unconditionally. You embrace the woman I am and love me unconditionally. You may be the most patient man I know.

randy and jo lyn2
Dad comforting mom in her final days in the hospital in 2011

You have helped me raise Eli to be a boy with a caring heart and curious mind. Hannah lights up every time she sees you enter the room. My children are the beneficiaries of your abundant love. You have been a gracious house partner in living with me and Daniel, and added wisdom and calmness to the mess that comes with parenting young children and being married in the modern era. We have learned so much from you. I have learned so much from you.

randy and darcy
daddy at my wedding in 2008

As I write this, you are preparing for your second mission trip overseas since losing mom. I admire how you have been a caretaker so much of my life. You have taken a heart shaped by what could be considered a tragedy, and turned into one of the most giving, understanding and patient men who lives life by following his heart’s yearning to serve. I hope you find a piece of your heart in Haiti. May there be many blessed by the intention in your heart as you practice servant leadership overseas.

I can’t tell you how blessed we are to have you living in our house and helping raise our children, a man defined by the desire to live a life of service, a man who so easily places others above himself, a man who could have been defined by grief but has rewritten his story around love.

You are amazing daddy, a true hero, a defining character, and no small part in how I can stand today to try to share my heart with others.

randy and hannah
Daddy with my children in 2016

I look up to you, admire the sacrifices you have made, am grateful for your love, and supremely blessed to be your daughter.

However, I want you to know, that the trait I see as most special in you, something I think not many could do as well as you, is your resilience. Some say that “what must be endured, can be endured”, but what I see embodied in you is beyond endurance – it is a redefinition of what is good and worthwhile in life. You are so resilient that after you outlived your caretaker role for your wife and son with a genetic and terminal disease, that you became caretaker for my healthy children, for me, and for those orphans in Haiti you are going to visit.

You have written your story in a way that enabled me to write mine.

I love you daddy!

I hope today finds you blessed.

I am forever inspired by your choice to live, live well, and live for others.

I love to see the joy my father shared with my children.

Moving and Shared Experiences

I moved. About a year ago.

You know, I was a military brat growing up, so this should probably be no big deal. I’ve moved a lot in my life. But the last place I lived, Salina, is the one place I had lived longest in my life. I had been there from 99-2004 for 8th grade through high school. I went to college 20 minutes away and spent a good amount of time in Salina because it was the biggest town around the college. Then, I went back to my high school and taught for 7 years. People know me in Salina, or did. As a military brat I always think you can’t go back and still know anyone.

If I went to Wal Mart in Salina, I’d know 3-4 people on the trip. I might even want to avoid someone. Where I live now, I go to Wal Mart just hoping someone will recognize me and smile. I love where I live, don’t get me wrong. We moved for the right reasons and things are going according to plan. We are financially ahead, still near enough to family, advancing our careers, and in a great neighborhood to raise a family in. These feelings I am about to express are very much 1st world, no more than that, middle class “I have all my needs met” small town problems.

You see, I go to playdates scheduled on this orange sheet of paper I have magneted to my fridge, and I’m the only one there. And my kids want to play, but I don’t know what mom I can call to get them someone to play with. Or it’s 100 degrees out at my boy has been inside all day asking to play Minecraft and I want to socialize him with other children but don’t have the same social network or local indoor play resources to know where to take him to find someone he will feel comfortable playing with.

I miss my women’s Bible study I attended the last four summers that met 10 blocks from my house and was lead by my mentor teacher and department head. I even kind of miss going to the gym and putting my headphones in just so the regulars would stop trying to make conversation. I miss going to McDonald’s and seeing a former student or two there while I eat.

To be honest, this feeling is more prevalent now than other times. With my teacher’s contract, I have summers off. I’m about a month in to summer. I have book events, I taught some Google Workshops, I’ve had things to do. I’m not bored – this feeling isn’t boredom. But, when I’m working 40 hours a week, I don’t notice these things as much. I don’t actively seek desire playdates and coffee chats as much because I have regular adult interaction at work.

What I miss – it’s the sense of belonging to a community, of being known to the people around me, to having a shared history with those I share time with. It’s the relationships that are more meaningful because they believe as an educator I gave them or their family something, or the people who know they gave me something because they were part of my education as a Mustang. I miss the places in my community having a sense of belonging to me because I run into people I know there, people who want to ask me questions, people who know my family.

This sense of community I had in Salina, I have parts of already here in Great Bend. My kid starts kindergarten next year. I’ll make mom friends that way. I’m getting to know more teachers in the district after doing some district wide workshops. I’ve met most of my block of neighbors. I am developing relationships at church and have already been to two different Bible study groups. I’m resilient, well connected with my family and our circles, and generally socially acceptable (generally – I do have some weird quirks, work a tech job, and met my husband playing Magic the Gathering if that gives you any hints to my social graces).

But my mother – after my mother moved from Salina to a small town, she didn’t tell anyone she was affected by a rare, genetic and incurable disease. People didn’t know about her son and the implications for her. They didn’t know her past, and she didn’t want to define herself by something perceived as a weakness.

The sense of community I will inevitably grow back into in my small town, my mom didn’t regrow quite as quickly. She was older, quiet, grown kids, and couldn’t work in the same way she use to. She fatigued in the heat, slurred her words more than she use to, and felt awkward trying to impress new people.

In my books talks, I get to go to a few small towns, and I love it. My mom’s small town is a great place with many caring people, but it is easy for a new comer to a small town to not tell about their past, hide things that in the past have partially defined them, and not open up. I’m sure that’s easy in any town honestly. Sharing a community with people you haven’t shared a past with is a challenge in ways, but it isn’t one that has to isolate people. We can reach out, talk to the people who are quiet, invite people to local events, introduce them to our local connections, and make a community more welcoming.

It isn’t easy or fast to feel at home in a new home community, and I’ll be honest I’ve had a flop or two in my attempts to find deeper friendships in my new area like the friendships I had in a town I’d lived in or near 17… wow… 17 years. But something inside of us needs those human connections, bonds deeper than liking each other’s posts on Facebook, a deep enough set of common experiences that we can anticipate one another’s reactions and preferences.

So… if you live around me and read this, smile at me next time you see me in Wal Mart and come start a conversation. And if you live around someone you know who is quiet, may be socially retreating, or seems a bit lonely, start a conversation, care to be kind, and maybe even offer an invitation to an event that builds community.

I’m not exactly sure how my mother would have responded, but she would have appreciated the gesture, and had she lived longer in Larned I’m sure she would have grown deeper friendships from the people reaching out.

What I feel this week really is a sense of not having a deep network of long lasting relationships. That’s normal; I’ll survive. It probably isn’t that big of a deal, but it was different for my mother. More relationships and interactions would have mattered to her, to anyone really, but to her self-worth, her confidence, and her enjoyment. This feeling, I’m going to hold on to it, because it is a good reminder to be a good friend, a good neighbor, and a smiling face.

Sorry if it sounds whiny. This is what I thought about at the gym after I went to a community event hoping to talk more to people, didn’t find many people I knew, then decided to fight the feeling of missing my hometown by hitting the weights. 🙂

And if I were to psychoanalyze myself again, I bet a good part of this feeling is meeting people who are strangers to me, but have read the book From My Mother and know intimate details about my family but I only see for an hour. I want those deeper connections, and I imagine it is probably awkward to make friendships after someone reads your blog or your life story. I met someone at a presentation at a Library’s Chamber Coffee who went to church with my mother and father. She told me “I had no idea,” gave me a hug, and went on about how she knew my aunt, my grandma and how my dad gave her son Werther’s every Sunday in church. I felt an instant connection to her. But I’ve only been around her once in my life and it might be a long time before I see her again. I miss having friends around me regularly that knew my mother and my brother. Actually, I kind of just miss having people around who knew my mother and brother, whether they were people I actually spent time with or not. In some odd way, it matters that the people around us have shared experiences with loved ones we have lost.

Growing up the sibling of a brother who didn’t speak

My brother, Dustin Ryan Bartz, was born with severe congenital myotonic muscular dystrophy and other complications created from a lack of oxygen reaching his lungs shortly after birth. Dustin would qualify as “non-verbal”. From his birth situation, he had hydrocephalus, or what they call “water on the brain” (which we didn’t technically discover until he was 9 or so).

I was 3 when my brother was born, and over the years we developed many ways to communicate. I learned to read my brother’s body posture to match his moods. I knew hunched shoulders and a pulled back lower lip meant he was afraid. Dustin made noises like grunts and coos and whines. Some of the sounds that come from my 7 month old baby girl remind me of my brother. I learned to interpret those noises and grunts to Dustin’s typical needs and desires and be his voice to communicate with others.

If my brother and I were at one of my softball games and a teammate’s parent wanted to talk to Dustin, I’d often be there to answer questions or help Dustin trust the interaction and enjoy it. Dustin was easy to appreciate; he was cute, friendly, good natured, and happy to have attention. Being one of the caretakers for my brother as his sister, I often got positive attention in being around him when others wanted to meet him. People viewed me in a positive light and appreciated when I would speak with or for my brother.

My brother lived 13 wonderful years and passed away when I was 16. I loved many things about my brother and miss him greatly. But if I am to be completely honest as a sibling, part of what I missed about my brother was how I defined myself by being his sister. I missed the feeling of importance when someone would talk to me in order to talk with him. I missed the instant positive feelings people would have about me when I pushed my brother’s wheelchair. I missed that people would look at me and smile when I was in public with my brother. Without Dustin, I faded in to the crowd much more than I did with him. I wasn’t special on sight to those who would have natural empathy to someone like my brother and his family.Growing up the sibling of a wonderful boy with myotonic muscular dystrophy, a wheelchair, and drool often on his shirt meant people reacted to me a certain way, and that I learned how to interact with people in a certain way.

I write this for a specific audience as the target – siblings of individuals with disability who do not speak or may be considered non-verbal. I guess as a writer I enjoy psychoanalysing myself, and lately I’ve been wondering how having a sibling who did not speak affected my speech abilities and tendencies.

Do I value words more because that was a gift I could give to my brother?

Did I want to invest in my language ability because it proved so valuable as a child?

Do I have more controlling tendencies because I perceived myself at times of having a role to “speak for” my brother?

Is part of the reason I take myself so seriously because as a child I viewed talking as part of my “job”?

I was quiet in school, avoided conversations I considered frivolous, have a really hard time making jokes and generally only liked to talk to my peers if it were “business talk” or about a common interest I already knew we both shared. Was part of that because life seemed so serious with a brother who would likely (and did) have a shorter lifespan than me? Was part of that because I didn’t get to have typical conversations with my sibling? Was it because I felt that adults listened so intently when I spoke around my brother?

I taught AP Language for 6 years, published a book about my family, and use my language skills in my tech job. I love language, love writing. I guess in my life I don’t need to know exactly why that is, but I’m also a military Air Force brat who moved around a lot. I enjoy reading about the psychology of military brat children, relate well to others like me, and I really wonder how much I would have in common in language and speech tendencies with other siblings of individuals who do/did not speak or who might be labeled as non-verbal.

So… if you are a sibling like me, how do you think your sibling experiences have shaped the way you communicate as an adult?

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How did this boy shape this girl becoming a high school English teacher?

From My Mother reviewed by people in Families Affected by Neuromuscular Diseases

Making money by writing a book would be a nice side effect, but to be honest the reason I poured years into From My Mother, the story of my family and muscular dystrophy, was to reach families like mine. If you are in a family affected by a neuromuscular disorder, this book can help you feel less alone, give insight into the real family complications that come with disease, and the hope and strength that can come in trying to live well the days we are given. Below are some of the most important reviews From My Mother can get – reviews from people affected in some way by neuromuscular disorder – whether they themselves are affected, or their children, or their spouse, or even their patients. If you are from a family like mine or help families like mine, please consider owning this book. One day, reading it might help you with some of the hardest questions in life.

Buy From My Mother here http://www.electiopublishing.com/index.php/bookstore#!/From-My-Mother-Surviving-and-Thriving-in-a-Family-Ravaged-by-Genetic-Disease-Paperback/p/63943406

Kelly is a caretaker with a  spouse affected by a neuromuscular disease:


John is a man bravely living with MD:


CD is a healthcare professional who has worked with families affected by genetic disease:


Jessie is a dear friend of mine who was diagnosed with MS years after we met:


Laura is a genetically “typical” daughter born in a family affected by MD.

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Linda is a mother and caretaker in a family affected by neuromuscular disease.

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Aunts and uncles too can better understand their own family:

MMD review

Lisa read From My Mother on mother’s day


I don’t know who left this one, but I’m glad they found From My Mother:

chronic disease

From My Mother can also help loved ones process memoires:


From My Mother can help you understand the world of a caregiver


Perhaps From My Mother is for you.



If you want From My Mother and money is an obstacle, or you don’t use your credit card online, or shipping seems hard – if you are from a family affected by neuromuscular disease, I will send you a free copy! Just email dleech@live.com. I wrote this story for people like us. Perhaps in reading it you will feel less alone.

Jo Lyn Bartz Memorial Scholarship – 4th Annual Recipient Selected

April 27th I got the honor of awarding the fourth annual Jo Lyn Bartz Memorial Scholarship to a senior at my alma mater and where I taught the first seven years of my career, Salina Central High. This year was a special treat because without either me or my father being on the selection committee, Lindsey Wood, a young woman I have known for years and respect because of her work ethic, desire to help others, and integrity was chosen.

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Randy, Lindsey, Darcy at Salina Central High on Awards Night 2016

The Jo Lyn Bartz Memorial Scholarship was created by fundraising and donations in the Salina community. People who prayed with me as my mother was in the hospital helped me raise the funds to create a scholarship endowment. It was a beautiful gift from my friend and neighbors to help me reach the necessary funds to start the scholarship because now it allows me to honor my mother’s name and spread the story of her strength through a scholarship that helps propel young lives to thrive for others.

When my mother passed away, I need to heal. I needed to make sense of what my life meant now that I had lost my brother and mother to a genetic disease I did not inherit. I wrote From My Mother to process the emotions, to sort through the complex philosophical issues, and to give myself a time where I let the pain be felt and acknowledged. But writing itself wasn’t enough. Writing is personal, and unless it is shared, writing for yourself in your basement doesn’t change relationships. Creating a scholarship in my mother’s honor with my community’s support did change relationships. It let something good and beautiful come from the loss, and it perpetually honors my mother’s life. It let me share my pain and joy with my community and share my family’s story each year with the scholarship.

If you have lost a loved one and have the capacity to create a memorial scholarship, I highly suggest it. I didn’t have $5000 to start the endowment myself, but I sent a fundraising letter, held a donation garage sale which friends and family could bring items to, and asked for help on social media. People showed me that the legacy of my mother was worth their support, and since them I’ve been able to heal and grow a little more each Awards Night at Salina Central High.

It’s honestly one of my favorite nights of the year. I’ve been proud of all four recipients, having picked none of them but known them all personally and taught them all in some capacity.

Last year’s recipient, Zach Hilbig, was a Governor’s Scholar tonight and one of the top three Most Representative Senior Males! Lindsay Wood, this year’s recipient, was also awarded the Most Representative Senior Female award, one special to my heart and in a chapter of From My Mother… Congratulations to Zach and Lindsay on a great senior year and taking the Jo Lyn Bartz Memorial Scholarship into college!

I should have gotten a picture with Zach last night. I’ll get one with him at graduation… 🙂