From My Mother

by Darcy Leech

Riveting, soulful, and courageously told, From My Mother is a meditation on grief, family, genetic disease and also a deeply personal account of the narrator’s coming-of-age amid medical crisis and tragedy to carry on the lessons from her mother to raise her young son. A story of loss, From My Mother is full of life, a story of beginnings as much as endings, a moving book that transforms suffering into art and inspiration. Darcy Leech was born to Jo Lyn Bartz, a mother who carried myotonic muscular dystrophy, a disease 1 in 8500 suffer from. Jo Lyn’s son, Dustin Ryan Bartz, was born with congenital muscular dystrophy with a high enough frequency of protein repeat mutations that of his 13 years of life, every day defied prior medical knowledge. Leech narrates a moving meditation of the enduring mysteries of what dormant harbingers of genetic disease may lurk within, the surprising possibilities in loss, and the deep resilience of the human spirit as the body weakens.

The narrative highlights the relationship between diseased mother and healthy daughter, revealing Jo Lyn as a woman of strength, a caretaker who quietly marched toward her own degenerative weakness, someone grappling for identity while ostracized by an invisible disease, and a resilient spirit who endured holding the child who inherited her genetic misfortune as he took his last breath. From My Mother is the honest story of finding joy through loss, living fully within limitations, and the universal struggle of grappling for identity against the device of innate genetic code through invested love and personal choice. From My Mother leaves the reader pondering the value of genetic testing, the beauty in a disease easy to accept as genetic fault, and the heart wrenching question of when life should be sustained by machine or ended by choice.

Genres: Memoir, Medical

179 pages, Paperback

First published April 22, 2016

About the author

The first child born to a woman with myotonic dystrophy, Darcy Leech was raised to expect her brother to die before she did. She matured quickly as a child living amid medical crisis and went on to graduate Summa Cum Laude from Bethany College as a nationally award winning student athlete. From My Mother tells the family story of the strongest woman Darcy will ever know, her mother, Jo Lyn, who died from weakening muscles.

Reviews

[Darcy Leech · Rating 5 out of 5]

I wrote this book, and it may be cheating, but I think this book is excellent because writing it helped me process and heal from the loss of my brother and mother to the same rare genetic disease, myotonic dystrophy and it can do that for other readers who've never had a book like this. If I would have read this book when I was 16, I would have been a better person. My goal with this book is not only that you read and enjoy it, but that I find a reader like me - someone in a family affected by myotonic dystrophy. I hope this book finds the readers who need it because there has never been a first person memoir published about myotonic dystrophy before. Your best way to see if you'll like this book is to read the chapter excerpt published in Quest Magazine here: http://quest.mda.org/article/beyond-w...

I’ll be honest – writing From My Mother was painful. I cried – a lot, and not only the first time in the writing, but again and again in revisions (so hopefully my copy editor catches and forgives any errors missed through the tears). I started writing fueled by a desperate plea. I needed to heal and writing served as the only therapy I was brave enough to undertake. I purged my raw emotions onto blank pages, exhausting myself through simple clicks on a keyboard which carried the most complicated thoughts of my life.

More than once I wrote until I couldn’t, then went to visit the cemetery where my brother is buried less than ten yards from my mother. One night, after writing about her final days, I drove to my mother’s plot, lay my back on the bare earth above her bones, and prayed for her strength to help me through.

MMD is a rare disease and families like mine aren’t easy to find.
The vision which pushed me through the pain was of some 16 year old girl somewhere in the world born healthy from a mother who carried a terminal disease. A girl with a sibling who wasn’t as genetically lucky, a girl who knew she would lose more than one family member too soon, I wrote for her.

The young boy affected by myotonic dystrophy trying to understand the world and make an impact the time he has, I wrote for him.

The mom who carries a silent disease and is misunderstood by the more fortunate in health, I wrote for her.

The dad and husband who puts all his being into caretaking, maybe even forgetting to take care of his own needs, a man like my father who carry a handicapped child on his back up a mountain trail in a National Park then drives home six hours as his affected spouse sleeps. I wrote for him.

I pray each night now that From My Mother will find the reader who will not just enjoy the story, but the reader who needs the story. With every inch of my being I believe I was born to write this book. This is part of my fate, and writing through the pain was an irresistible calling. It had to be done. There are readers out there who, if I can find them, have never read the voice of someone from a family with myotonic muscular dystrophy and deserve to, readers who will be changed by the catharsis of reading about a family like theirs and hopefully feel renewed grace through experiencing this story of faith in the final days of a terminal illness.

I wrote for them.

I wrote for me….

Help me share this story so From My Mother can find the readers who need it. Share this post on facebook or twitter or with someone you know in person. We’ll reach them together.

[Jackie Cook · Rating 5 out of 5]

From My Mother, by Darcy Leech, is one of the most inspirational books I have read in a very long time. Leech tells a legacy story about a heroic mother, living and dying with a genetic disease, incurable and unexplainable, then weaving in the same struggle with her brother whom also had it. I felt the loss, shared by the author, as deeply as if it was my own family. The list of feelings the reader amasses as you read this book is a testament to the quality of the experience Leech tells in such an inspiring way. The amazing resilience of this family will be a gift for others experiencing similar genetic questions. I highly recommend From My Mother.

[Celeste McGlamery · Rating 5 out of 5]

I read often, and as a nurse, some special types of literature can help me be more caring and compassionate in my job. From My Mother is that special type of literature. A well written piece of narrative medicine, From My Mother helped me to better understand the home dynamics of a family affected by genetic and terminal disease. The author, Darcy, is a typical sibling from a mother with a degenerative muscle disease and a brother with severe congenital myotonic muscular dystrophy who spent a lot of time in hospitals. I'm on my way to be a NP, and I know how important it is for me to smile and treat patients like people by being compassionate and kind. This book not only reinforced that, but reminded me of the challenges presented to the whole families. The typical siblings and spouses that walk into a clinic deserve that compassion and empathy too! Nurses of the world, if you want an information, evocative and worthwhile read, pick up From My Mother and strengthen your ability to do what you got in to nursing for - to help and to heal those affected by disease.

[Tom Johnson · Rating 5 out of 5]

“Living With A Terminal Disease.”

Darcy was told that her brother would die before her when he was born. Three years older than Dustin, her young life would become entangled in his care and helping her parents around the house at an early age. Darcy’s mother, Jo Lyn Bartz (nee Woodard), carried the genetics of myotonic muscular dystrophy in her genes, which she passed on to Dustin, and he was born with congenital MMD, a disease that would end in death while still a child. The disease would also take Darcy’s mother by age 51.

This is one family’s struggle to live with the disease. Darcy’s father, Randy Bartz was an Air Force enlisted man, and the family already struggled with low pay. Jo Lyn worked out of the house as a waitress to earn more money to help with finances, and now the struggle is even greater with more medical expense. The military medical assistance helped a lot, but there were always out-of-pocket expenses, and Randy could not just take off and share in the workload around the house, as much as he would have liked. He was with civil engineers, and had a job to do, while his wife and young daughter battled the problems at home.

Darcy’s problems were manifold. She felt cheated because of all the extra work around the house, not to mention less attention to her own needs, and often blamed her mother for not doing more. It was even worse as she became a teenager and wanted to fit in with her school class and sports team. She often had to wear dirty clothes to school, and was ashamed when her parents appeared at games dirty and wearing old clothes. She was intelligent and athletic and wanted to succeed. She was even ashamed when her mother won her a two thousand dollar a year college tuition for four years, thinking that her parents should have saved enough money for her college. But before we think of criticizing this young lady, we should never blame our children for not understanding. They are not ready for so much knowledge so young. In later years Darcy would look back and see how foolish and wrong she had been, but no child should be put through so much.

As it was, young Darcy watched as her brother Dustin struggled through life to live, and eventually died at age 13. Then, as a young mother herself, she had to witness the decline in health of her mother, and watched MMD slowly destroy her ability to even smile. The one anchor for the family was her father, Randy, who stayed by the family and did all he could while earning money to keep them fed and a roof over the head. Many families in this situation live below the poverty line, and it’s a struggle even with a military retirement and a full time civilian job.

Millions of families struggle with disease in the family, whether MMD, ALS, cancer, or diabetes, and we seldom hear of their stories. Many don’t know where, or who, to turn to. FROM MY MOTHER gives insight to those struggles we don’t see, and should be mandatory reading for all of us. Darcy drew strength from her mother at an early age, then her father when Jo Lyn was dying. Their prayers sustained them, and with determination, Darcy succeeded in life, and now wants to tell her family’s story. Highly recommended.

[John Graybill II · Rating 5 out of 5]

Not having MMD but rather another form of muscular dystrophy called "Limb Girdle", I can understand how the disease effects one's self but what I can not understand is the impact the disease has on other people. This is what Darcy Leech shows us in "From My Mother". The book is moving especially the part where Jo Lyn describes seeing her son, Dustin, in heaven doing physical movements he couldn't while alive.

[Mrsj · Rating 5 out of 5]

This was a gripping, moving, and thought-provoking book; I am so thankful I got to read it and learn more about the author's amazing parents. As a reader, I truly felt like I "knew" the people in her family from her descriptions and from her clear recollections of so many important life moments. I appreciated Darcy's candor and vulnerability so much and can only imagine that families affected by MMD will find it a comfort and an inspiration.

[Billy Anders · Rating 5 out of 5]

Darcy Leech writes: “My childhood ended the day Dustin died.” Not true, though she may see it that way. Some people never mature into being responsible adults. Some never get a chance to be children. Ms. Leech falls into that latter category. Her mother had a genetic disease. It skipped Darcy, but afflicted her younger brother, Dustin. As a baby, he was much more ill than his mother, whose symptoms would gradually worsen. Though just three years older, Darcy was cast into chores and responsibilities of adulthood by age seven. But Dustin inspired her. “He just saw a toy, saw the way, and grew,” she says of his ability to adapt and live. Yet she had regrets. Regarding outings where children were just being kids, she realized… "I’d never be able to do that with my family.” Prayer, though perhaps of a shallower variety, helped her. She’d left home for school the day Dustin died, sensing that his breathing wasn’t ‘normal’, but after all, her mother was there. It was the day he died in his mother’s arms. So guilt reared its ugly head. I wasn’t there when I should have been, she thought. Just 16, she wrote Dustin’s eulogy and a touching poem. Finally able as an older teenager to do child-like things with her parents, the opportunity just as quickly evaporated as her mother’s condition worsened.

Outstanding athletic skills in high school were an outlet, a diversion. But the deteriorating health of her mother continued to cause stress. Though she was a star on the softball team, she quit at a time that seemingly made no sense. College athletics, a successful relationship leading to marriage, and a child kept her above the low-water mark. Then her mother, who had been a beauty queen in New Mexico, went downhill rapidly. As a young adult with a family of her own who needed her, Darcy became a full partner with her father, even her mother, in decisions involving life support. She courageously watched as her mother removed her own ventilator tube, listened as her mother said she was ready to “…fly away…,” and did.

Along this life journey, Darcy’s biggest regret was …”a lack of patience with my parents.” At age 28, Darcy Leech says: “I began to understand.” God’s will in such things, through more sincere adult prayer, became clearer to her. “Bless the glory that was my mother’s faith, because it not only gave me life, but gave me a new perspective.”

“Admitting weakness was okay but took me some time,” she notes. “Writing is a good outlet for me.” If you have these sorts of problems, reading this book and understanding how another person dealt with them will be good for you. If you had a ‘normal’ childhood, it will be good too, because you will thank God for your blessings.

To me, the tone of this effort is much like that of writer Nicholas Sparks in books like “Message in a Bottle”. “From My Mother” is a winner! Thank you, Darcy Leech, for having the courage to write it.

[Joe Bagnato · Rating 5 out of 5]

First off I want to say thank you to Darcy for allowing me to pre-read this book prior to its release. It is not everyday that someone has the privilege of doing that and I cherish the opportunity to do so when given the chance, especially with a griping story such as this.

"From My Mother" by Darcy Leech is a griping memoir of a family dealing with a rare genetic disease called Myotonic Dystrophy that ultimately took the life of her younger brother and 9 years later her mother. The narrative gives you a unique perspective of grief coming from Darcy first as the protective big sister and then loving daughter but that is only part of the story here. I felt this book was more focused on living life in general and overcoming adversity when a family is faced with a rare disease such as this. When I finished the book I felt as if the family was lifted up, through their love for one another, and wanted to know how they are today because the way the story is told is as if you are having a casual conversation with the author.

While I am no stranger to loss, hardship and grief, "From My Mother" teaches us some important life skills. Never take for granted the ones you love, the moments you have, the lessons we learn or the potential we have.

[Arthur · Rating 5 out of 5]

This is a poignant chronicle of how the author and her family coped with two long-lasting occurrences of myotonic dystrophy, which claimed the lives of her younger brother and her mother. Along with her father, the author, herself a wife and mother, as she puts it learned "lessons of strength and faith as I will find in no other book save the Bible." She has built a successful career as an educator, and looks back on her earlier years with sadness, but it able to see good things along the way. She neither engages in self-pity no blames anyone.

What stayed with me was reading about how her mother struggled to find meaningful work as her illness progressed. Employers were not always sensitive to her needs, and the corporate bureaucracy was not beneficial to her. It is a shame that her dignity as lessened as she tried to be a productive part of society.

I recommend this book as an affirmation of faith, not merely in God, but in family, and in an amazing family that struggled against the odds and did not lose their sense of purpose. Darcy Leech has a powerful message to share, and I hope indeed that it finds a wide audience.

[Tanya Ryle · Rating 5 out of 5]

My dear cousin Darcy Leech wrote this book about her mother, my Aunt Jody, who passed from complications related to the disease mytonic muscular dystrophy. This book concentrates on the human element of growing up with a brother severly affected by a congenital form of the disease and a mother who begins to suffer the effects of the disease as time passes. Beyond being simply a sad tale, this narrative is about love, compassion, acceptance and growth of the human spirit. It doesn't hurt that Darcy is a fabulous writer. Even as a family member, this book gave me an inside view into a world I only ever saw from the outside. Highly insightful, moving... I found myself making connections to life with my dad, a quadriplegic... I'm so glad this book was written.

[Dleech · Rating 5 out of 5]

"From My Mother" is very much a good read, and a story that is thoroughly enjoyable, as I followed the author through the growth of her young life in learning to deal with two widely different aspects of Myotonic Muscular Dystrophy that affected all four of her other family members, two with the debilitating aspects in their physical bodies that lead to their eventual deaths and also her father and later addition, her husband. The story is enjoyable due to her frank honestness about her learning experiences and because of the description of the ultimate freedom and final victory that is found by her brother, her mother, herself, her father, and I'm sure her husband as some of the intricacies of life's mysteries came to their fateful conclusion.

[Kathryn Schaffner · Rating 5 out of 5]

Compelling in character from start to finish, From My Mother is an enduring heart journey of the relationship of growing from being a young daughter to becoming a grieving mother who carries on the lessons from her mother to raiser her own child. Well written with an engaging and personal narrative voice, it doesn't take a connection to the specific disease of the story to relate and engage with the characters. From My Mother captures important aspects of the human condition and speaks to the heart of any mother. A must read.

[Randy Bartz · Rating 5 out of 5]

My daughter wrote this book. It's the story of my life. I read this alone while everyone was out of the house. It is a beautiful tribute to the strength of my late wife, Jo Lyn Bartz. It also captures the joy and love of my son, Dustin. I cried as I read it, but I am so glad Darcy wrote this. I hope the story of our family helps others like ours! Jo Lyn showed amazing strength of character and faith as her muscles weakened. She is the strongest woman I will ever know... I hope you enjoy her story!

[Seresa Arndt · Rating 5 out of 5]

This is an amazing book of truths. Darcy's perspective of her life as a child was both beautiful and honest. I doubt that Darcy can fully understand the impact her story will have on others in similar situations, and even those that may never experience these lessons. Her attention to details helps the reader understand her family's pains, celebrations, and the incredible bond their family shares. This is definitely a book worth reading!

[Brian Ashton · Rating 5 out of 5]

Being from a family affected by the same disease as in the book, muscular dystrophy, this book helped me feel less alone. Not everyone understands what it is like to live in a family where multiple members die to young because of something present at birth. It can be lonely, isolate, and it can make a person pretty angry at the world. But in reading Darcy's story, I found solace. I read about a childhood similar to mine. My mom rode bikes with me when I was younger too - but that didn't last when her muscles weakened. I felt the author's emotions. I empathized with her mother. I cried... more than once.

An emotionally cathartic read, my emotions ran with the stories on the page and I experienced a whirlwind of emotion that was both a purge and a cleanse of the feelings I don't share with anyone else because they might not understand. I cried at the end, but in knowing someone else has lost family members and went on to make an impact, I felt less alone even after the tragedy at the end. I'm better informed after reading this book, and maybe a little more balanced. A good read. Highly recommended.

[Daniel Leech · Rating 5 out of 5]

Darcy's book is a story of maturing in many facets of life, and dealing with extremely difficult family situations. The book will provide the reader with a transparent and deep view of what it is like to care for others, sacrifice, and gain wisdom through life's challenges. This book is a must read if you are in the medical field, if you will ever face difficult medical family decisions, if you are a caretaker or family member of someone with extra needs, or if you desire to grow from others experiences.
The author is a master of word choice and brings you into her world as a child through her early adulthood with the obstacles of losing precious family members to a deadly and uncured disease. Reflective readers will be spurred to grow through this beautifully written true story of faith and family in the midst of a rare genetic disease. This story deals with the largest and most persistent questions all humans face through their lives. The author provides a thought provoking narrative to help you examine your life, beliefs, and experiences with.

[Julie Wood · Rating 5 out of 5]

“From my Mother” was an incredible story that captivated me from the very first pages. I have known Darcy for years and knew this story on the surface, but to listen to her recount of this story from a deeper place of personal pain and emotion moved me to tears many times.

This book shows the love and strength of a family especially through unbelievable heartache and difficult times. I particularly loved the memories Darcy shares about her brother and mother and her heart to love and help them. I also admire how close Darcy and her father have grown through the hardships and the way he now has the chance to smile with his grandchildren.

This will be a wonderful book for others battling terminal illness, but is also a great book for anyone to read about the love and trials of a family battling any disease.

Thank you for being brave enough to share your story, Darcy!

[Lisa · Rating 5 out of 5]

Darcy writes with openness, honesty, and clarity. She has bared open her soul, and there are moments of agonizing pain and moments of true hope and joy as a result.

Usually I don't read memoirs; I always feel that I am missing the weight of events or the full context that the rest of life would fill in for the reader. They tend to lack the narrative flow that I enjoy in fiction books. Darcy Leech, however, has managed to both be true to her real life and still create a book that flows and moves and taps into the emotional life of the reader. It is not simply a catharsis for the author; it becomes catharsis for the reader.

It has been months since I have put down the book, and there are moments that are still intensely vivid in my memory. She spoke to me as both a mother and as a daughter. Reading this has made me a better person.

[Cathy Lewis · Rating 5 out of 5]

This book is for anyone who has ever grieved over the loss of a precious family member. Through this book I completed the grieving process for a loved one, a process that has been on hold for 5 years now. I learned from Darcy Leech that it is O.K. to feel the feelings of anger, betrayal, hurt, despair, and all the other emotions we experience during the loss of a person we love. I connected with her as she experienced doubt and fear, then faith and hope.

[Dianna Pedersen · Rating 5 out of 5]

I know Darcy and wish I had taken the time to get to know her family better when I had the chance. Thank you so much Darcy for sharing your story. I wish I had been there more for you. You have brought about in me more compassion and understanding of things I have no experience with. Blessings to you friend!

[Yaz Dolbel-Neville · Rating 5 out of 5]

I enjoyed reading Darcy’s book. I was able to relate to some parts due to my own journey. A really good book and well worth the read.

[Lori McLeland · Rating 5 out of 5]

Riveting and, at times, heart-wrenching, From My Mother personalizes a disease few know little about. Ms. Leech candidly shares her story with readers from her earliest memories of her family who, armed with love and determination, push through the cruel realities of myotonic muscular dystrophy. Raised with the understanding that families encourage, support and champion each other through the most difficult of circumstances, Darcy never seems to question her role in caring for her younger brother. Dustin may be restricted in what he can do, but that never seems to be the focus of this family. Instead, they see to it that he has as many "normal" life experiences as possible. As the disease begins to take hold of Darcy's mother, JoLyn, she shares the difficulties of daily life and the loneliness that often accompanies degenerative diseases such as MMD. In situations that could break the strongest of families, Darcy and her father have set the bar high. Randy, who cares for his grandkids on a daily basis, enjoys a close bond with Darcy and her husband. Quite a refreshing story for one that could have ended in brokenness and hopelessness. This book ignites hope in what can be.

[Janet Schaffner · Rating 4 out of 5]

I became acquainted with Darcy several years ago when she married into my daughter-in-law's family. I met her parents, but really knew nothing about the family. Since then, I have learned bits and pieces of her story, so it was very rewarding to finally learn “the rest of the story.”

Darcy's book is a very honest, compelling telling of what it was like to grow up with a disabled younger sibling, knowing that death was lurking at all times; and then realizing that her mother also suffered from the same genetic condition and would be dying much earlier than anyone expected.

This book is a must read for anyone whose family has been affected by a disease such as the myotonic muscular dystrophy that affected Darcy's family, and would also be valuable reading for anyone dealing with disability in the family, or those who work with families like these.

[Benjamin · Rating 4 out of 5]

I've never read a book like this before. It just isn't something that I thought I'd really be into, but this book has really touched me emotionally. The prose is beautifully written. The book is well structured without being too rigid or even slightly repetitive. The descriptions of the events and the characters in this book are carefully written in a way that shows they had a deep impact on the author. It really makes you feel a connection with the story like you were next to her the entire time living through it.

This is one of the only books this year that will actually have a lasting impact on my life, and I cannot thank the author enough for sharing her wonderful story.

[Jessie · Rating 5 out of 5]

Beautiful! I have had the pleasure of knowing Darcy for 16 years (2000). She attended my wedding, & caught the bouquet. She even took home some of the left over wedding cake, that I'm still thankful for her doing. Through it all there has been much I didn't know. As a person living with a similar disease (Multiple Sclerosis) I fully appreciate the perspective of a care-giver, then bystander. I have often marveled at the fact that Darcy never questioned what I could or could not do. She always offered encouragement and hope. Now I know why. Thank you for sharing this painful, love filled, hopeful, faith seeking story. I love you!

[J Stelljes · Rating 5 out of 5]

I did NOT want to read this book. Although I know and respect Darcy, I didn’t want to read about her heartache and loss. I bought a couple of autographed copies for my daughters as gifts. Then I thought that I should at least read the chapter titles, then I started to read a page, then I couldn’t put the book down. I was wrong about this book. This is a story of love, faith, and family. Their family is the richest family I know when it comes to love and faith. I’m so glad I read this book and you will be too.

[Kirsty Cochrane · Rating 4 out of 5]

I read "From my Mother" because my husband and three of my daughters all share this disorder. For me it was informative and thought provoking. I took value in the experiences shared which gave me someone's perspective on a future that is at best uncertain. Worth reading.

[Carolyn Leech · Rating 5 out of 5]

I thoroughly enjoyed reading this book. It was hard for me to enjoy reading other books after I read From My Mother. I believe everyone should read this book!

[Ashley Gilpin · Rating 5 out of 5]

Enjoyed reading Darcy Leech's memoir very much. Parts of it were very raw. It's an inspiring story full of emotion. Well worth the read!

[Lisa · Rating 4 out of 5]

I reviewed this book here: https://turnthepagelisa.com/2016/06/0...