by Darcy Leech
When Darcy Leech was three years old, her baby brother was born, and the course of her life and that of her family was changed forever. Dustin was diagnosed with congenital myotonic muscular dystrophy – or MMD – inherited from his and Darcy’s mother, who didn’t know that she had the adult onset kind of MMD until then. MMD is terminal – it causes progressive weakening of the muscles and the body until it can no longer support life, and there is no cure.
Darcy’s story weaves a curious parallel: two people in her immediate family with the same condition, but the course of that condition in those two people, her brother and her mother were very different. Dustin was medically fragile and underwent open heart surgery as an infant. He was non-verbal and used a wheelchair. The family lived with the knowledge that Dustin would die young. He was born that way, and Darcy never knew him any differently. Her mother, in the other hand, was healthy and active and vivacious, and even when her adult-onset MMD surfaced, it was a slow decline.
In the midst of all of this, Darcy coped by being an overachiever at school, both in academics and in sports.
The first half of From My Mother focuses on Dustin, and there is a sense of emotional distance, probably because his life took place in the more distant past, and the severity of his condition made it difficult, if not impossible, for Darcy to know his thoughts. The real emotional impact, I felt, came with the second half of the book, which focuses on her mother. In large part, Darcy’s story is about living and finding beauty and gratitude even in while living with the knowledge that death is not far away.
This heartfelt memoir about growing up in a family affected by a terminal genetic disease is not a pleasure read, nor is it light reading. It’s a much-needed, thoughtful meditation on disability, illness, grief, and loss – but also about resilience and devotion – in the disability literary landscape, especially among families in similar circumstances.
I only wish that the book had found a better editor. Unfortunately, small presses like the one that published this book often skimp in their editing services, which does a disservice to good books. Nonetheless, Darcy’s story is worth reading.
I’ve actually had the pleasure of communicating with Darcy Leech, and she agreed to do a Q & A for my readers:
Q: Having that awareness from the time your brother was born when you were three years old of the fact that he would die before you is a point made several times throughout From My Mother. From my own experience as a parent, I know that kids typically become aware of the concept of death when they’re pretty young, and it’s not uncommon for them to become a little obsessed with it for a time, fearing their own death and the death of their parents. How did your awareness of your brother’s short life expectancy impact your feelings about death as a child?
DL: I had a recurring dream as a child. I would be swimming in a water filled cave with a group of kids. Sometimes in the dream I was the scout who would swim to the next air pocket then come back to tell the group if the passage was safe. Sometimes I had to grab another kid and swim them to the next spot. Every dream was a race against time with rising waters. And almost every time, a child who was less physically capable than me drowned. Let’s just say as a child I ended up often trying to cuddle my mom in her bed after hearing my brother’s oxygen monitor sound an alarm in the middle of the night. My greatest fear has always been losing someone I feel I am meant to protect.
Q: Although your mother was diagnosed with myotonic muscular dystrophy (MMD) shortly after Dustin was born, it doesn’t seem that it was ever a focal point within your family, even after Dustin passed away. Your mom’s gradual weakening and the slow onset of her other symptoms seem to have often been attributed to other things. Why was this? Was her MMD talked about openly within your family? Was even she unaware that the physical problems she experienced were due to her MMD?
DL: After my dad retired from the Air Force and we moved away from big cities to Kansas, neither my brother nor mother ever saw another doctor who had treated a person with myotonic muscular dystrophy before them. In fact, when my mother requested work modifications at a job in Salina, she was sent to company approved neurologist who incorrectly told her that myotonic muscular dystrophy didn’t affect women. When she came home from that appointment she cried and didn’t want to talk about it. My dad told me later what the doctor had said. Mom didn’t enjoy visiting doctors about her disease after that. The ones who didn’t know the disease well often gave misinformation and the ones who knew the disease had in the past told her things like “we can’t treat the disease, we can only treat the symptoms.” Myotonic muscular dystrophy is currently an incurable disease with no specific treatment available. Maybe she should have, but she didn’t get in contact with a specialist three hours away for regular check-ins. She’d spent so much time in a hospital with Dustin over the years I don’t blame her. In many ways my mother was less connected to knowledge about her disease than she could have been. I do wish mom would have known about the great online support groups for myotonic muscular dystrophy where she could have talked with others like her.
As for me realizing what was really happening with my mom, my mom had seemed perfectly normal to me for so many years in my life. In my mind, I don’t think “I had a mother with a disability.” She lived and lived well the way she was. We knew enough about adult onset myotonic muscular dystrophy, the degenerative effects had a very rapid decline at a time where she was trying to seize what life had to offer her and be strong enough to help me raise my son. She was busy living and doing things she was capable of doing. MMD is a slowly degenerative disease with many effects that aren’t visible to outside eyes. It was hard for me personally to see what was happening to my mother, and harder for me accept that some of those symptoms were part of a currently incurable disease. Mom didn’t sit me down and say “Darcy, I feel worse than I use to and I think it is because of a disease I can’t stop from progressing.” Part of why I attributed my mother’s symptoms to things outside of myotonic muscular dystrophy was because my brother died without a cure, and I didn’t want to think I was losing my mother the same way.
I’m not sure how much mom knew about her health in her last year. She wanted to help me learn to be a mother and watch my newborn son when I returned to work. In her last months, my mother was trying to justify the belief she was physically capable of caring for our son alone during the day. She didn’t tell me about her fears or weakness then. Would you tell your child you are losing ability and fear the worst with an incurable disease? She wanted to be strong. She wanted to be capable. She knew more than she told me.
I’m not sure what admitting to herself to or to me that her incurable degenerative disease was getting worse was going to do for her. I don’t pretend to know what my mother felt. I don’t have the disease she did. I can’t imagine what she could have thought in that last year with an incurable disease. I don’t blame her for not focusing more on the disease and the symptoms. She was focusing on living. She planned a grand birthday for her 90-year-old grandmother and was striving to spend as much time as possible with her first grandchild. Sometimes knowledge isn’t power. That last year, her power was in living each day trying to give as much love as she could to her family. She did it well.
Q: Did your mom receive any treatment or therapy or even disability benefits once she was no longer able to work?
DL: My mother didn’t receive disability benefits when she could no longer work. Knowing what I know now and having gained the skills of a daughter who has completed a master’s degree, if we wanted to get disability for my mother we would have contacted a lawyer after her work approved neurologist gave her faulty information about a rare disease he had never before treated. My parents were wonderful at many things, but being self-advocates with complicated paperwork and lawyers wasn’t their style. In fact, once my mother was in the hospital, I made the phone call to the lawyer, filled out her disability paperwork and submitted it myself. For better or worse, my parents were much more likely to try to be grateful for what they had then to advocate for more. There are a lot of things I wish 30-year-old Darcy could go back in time and tell 30-year-old Jo Lyn. It is notoriously hard for individuals with adult onset myotonic dystrophy to get disability though because of the gradual change over time. Many with the disease will lose a job due to something like not being as sharp at remembering details, or like my mom falling asleep as a para-educator and not getting called back.
This probably goes back to my parents’ philosophy of trying to enjoy what life offers rather than stressing about something more – my dad had military retirement and a weekly paycheck. Mom probably thought her and dad had what they needed and I’m not sure she would have thought well of the potential rejection or impersonal judgment in the application process of disability. It would take a good amount of desire, gumption and determination to want to fight to prove you weren’t capable of something anymore. It doesn’t seem like the most enjoyable process for someone who was as capable as anyone else in her 20s.
Q: I kept thinking, throughout your book, that counseling and/or a support group might have been so beneficial to you as a child and then a teen, as well as to your parents, for everything you each experienced with respect to being affected by a rare, terminal illness in the family. Was there never a point when that was available to you? Do you feel that it might have helped each of you cope with the difficulties you faced, even if it just meant not feeling so alone? What would you say to other families out there dealing with similar situations with regard to seeking support?
DL: My parents did go to a bereavement group together for a while after Dustin died. I think it may have been too soon though because they stopped going after my mom said it made her feel “too sad.” After holding her son in her arms as the ambulance approached, my mother was clinically depressed and treated for it. We had an incredible church family in Salina and my mother found some comfort in a women’s group there.
My dad says Eli, my son, saved him. After mom passed away, my father moved in with me and my husband and took mom’s place in being the one to watch Eli while we worked. My dad still lives with us and is the caretaker for my children.
Part of my story is that I was an Air Force brat and went to 14 different schools before graduating high school. I remember in 1st grade I packed my bag to run away from home and my mom referred me to the school counselor and I visited with her once a week for a while. I flew under the “crisis radar” in a way by overachieving. I got straight As almost every year until I was 16 when my brother passed way, and that year I was a three sport varsity athlete and would play on a state champion summer softball team. I tried really hard to look like I had it all together. My high school gifted counselor, Kay Schiebler, is one of the most important people in my life though. I cried in her office many time my junior and senior year. She came to my brother’s funeral, my wedding, my mother’s funeral and my first Salina book signing. I actually pursued a gifted facilitator position myself because of how large of an impact she had on my life as I struggled with loss in high school.
I tell people writing From My Mother was my therapist, but I know there would be benefits to me seeing a real therapist. I have a lot of unresolved feelings, even, or maybe especially, after writing and getting questions like this one from readers. Women’s Bible studies have been my biggest outlet. I’ve had the same summer women’s Bible study group the last four years, and those ladies have prayed me through a lot. I also have prayer partners I can share concerns and requests with and who know some of the deepest angst in my heart. I carry a note card of scripture memory verses on an O ring in my purse. I rely heavily on faith and women’s groups for my resilience.
I’ve sat in a therapist’s office for one hour at a mental health center in my life about four years ago. There were things I wasn’t ready to admit yet. I didn’t go back. It would probably be a good idea to regularly see a therapist some time, but I’ll admit, I’ll have to quit trying to make my parents seem successful by raising a girl who can do so much on her own first.
My biggest recommendation for families like mine is to use the power of the internet and social media to get plugged into Facebook support groups. I actively interact in a Myotonic Dystrophy Information and Support group on Facebook, follow a page about a boy who looks so much like my brother https://www.facebook.com/PrayersforBabySpencerKelly/?fref=ts&ref=br_tf# and empathize with others in a Caregivers Support Group for Myotonic Dystrophy. Before starting From My Mother, I’d never met another woman like my mother. Now I know so many in families like mine. Those connections have been amazing for me, and sometimes heart wrenching, but fulfilling in ways locals can’t provide. I hugged a daughter like me from another mother with myotonic muscular dystrophy at a recent MDA Muscle Walk. As strangers, we shared a few tears together and I’ll never forget that moment. It was a first. Relationships are where it’s at. There are lots of good people in the world.
Q: You mention in your last chapter that you underwent genetic testing before you got married to see if you had inherited MMD, and that your results were negative. Still, how did your experiences with genetic disease within your family affect how you approached your own pregnancies? If your mom had known she had MMD before she got pregnant, do you think she would have made different choices about having children?
DL: Daniel, my husband, and I had many conversations before I told him I wanted that genetic test. He said it was completely up to me and that he didn’t need me to have the test done. My sister-in-law in nursing warned me that it might flag me the rest of my life with a pre-existing condition in a world of changing medical insurance regulations. Daniel and I said we would have children no matter what, but I knew how my brother had cost my parents financially. My brother’s life was beautifully worth living. He felt joy, spread joy, learned, played, hugged and loved. I will always think he is the most innocent and special person in my life. I would have loved to have had the chance to raise a child like my brother; in fact, I grew up fantasizing about it oddly enough. However, I didn’t want to have a child like my brother unexpectedly or too young, because then our married financial life and career paths would be forever changed. I got that test so I could know when I wanted to have a child. I had my first child when I was 25, but if I had myotonic dystrophy, we probably would have waited until we were about 30 to try to have a child partly because I knew what having Dustin did to my mother’s career options.
I’ve been very grateful to have had the chance to bring two beautiful children into the world. When the doctor asked if I wanted to do any prenatal testing, I declined both times. I know from my parents’ example that I would love my child as my child no matter what. Having the negative result from my genetic test for myotonic muscular dystrophy has made many decisions easier and I’m glad I have that knowledge, but no matter what, a life created inside my womb would have value and meaning all on its own for me and Daniel.
I have known of some children born with myotonic muscular dystrophy who end up wards of the state while still in the NICU in part because he or she had a mother who was surprised and underprepared. The financial and emotional costs that come with congenital myotonic muscular dystrophy can be high. Many with myotonic muscular dystrophy are first diagnosed once they have a child who exhibits more drastic symptoms than they do. Most women don’t know. Genetic disease and financial difficulty often go hand in hand. A human life isn’t worth less because it costs more, but if a parent has a family history of a genetic disease and can equip themselves with the knowledge of their own genetics; it can lay the groundwork for a more informed planned pregnancy process. I’d personally recommend the genetic test to any one in a family with muscular dystrophy before deciding when to go about having children. Any child is a life changer, but a child with MMD is often a career changer too.
My mother wasn’t diagnosed until after she had children. She had multiple miscarriages before having me, and a miscarriage between me and my brother. She really wanted to be a mom, and she was great at it. I hope she would have picked to be a mother no matter what. Social pressures can be hard for a woman with a known disability though. There are some in the world who would think that a person with known muscular dystrophy is bringing a social burden into the world if they choose to have children, or being unfair in bearing a child who will need medical interventions. If my mother did know she had myotonic dystrophy, I hope people would agree that she would have every right to have children if she wanted to. A baby isn’t any less worthwhile because of potential physical strength, life span, or intellectual understanding. I am 100% grateful my brother had the chance to join the world, and obviously grateful I did too. I wouldn’t be who I am if my brother were never born.
Still, I don’t blame anyone with MMD doing pre-implantation genetic testing. I may think Dustin was the greatest brother, blessing and advantage I could have in life and that his uniqueness made life grand in ways other people can’t, but life can be lived well many different ways. If a mother with MMD has the chance to raise children who won’t feel her pain, my mom was great at that for me. I don’t have MMD, and I’m not about to judge the life choices of any who do because I know I don’t know what it is like to face those questions. It would be a tough decision. Above all though, I hope society doesn’t try to go making those tough decisions for people they don’t know in a situation they can’t fathom.
Q: What was the process of writing this very personal and honest story like for you? How long did it take to write? Do you have plans to write anything else?
DL: I’ve written as a coping mechanism all my life. The year my brother passed away I carried a notebook everywhere and wrote essays about the nature of existence during history lectures. But after my mother passed away, I didn’t write at all for seven months. When I finally started on the story I felt I was born to write, it took me four years to complete. Writing was how I processed the emotions I had been repressing. I cried through messy drafts and cried again through revisions. Honestly, I think writing saved me because it was one of the only places I’d let myself feel that deeply. It was hard.
The readers’ responses to the writing though has been so rewarding. I pray every night that From My Mother finds the audience who needs it. Now, not everyone needs it. Sometimes I’m scared to think what a woman like my mother would feel reading her story. Some may find strength, and some may find fear. I wrote From My Mother to help people in families like mine – a spouse caretaker, the grieving parent, the typical sibling with an atypical home life. One of the hardest parts of writing a story so personal and honest is that I know it has a high impact, and I hope that impact is good. The book isn’t a simple pleasure read. People cry when they read it. But I hope those tears are meaningful, that the human aspect of the love and loss in the book help someone feel less alone. In telling an honest and personal story, I hope I don’t hurt too many readers by sharing what happened in my life. From My Mother isn’t the staple story of what should or will happen in anyone else’s life and it’s not a moral guide of how to make difficult decisions. It’s the story of how the strength I gained From My Mother allows me survive and thrive coming from a family ravaged by genetic disease. God bless that woman; she was amazing.
I do have plans to write more. I have a trilogy in mind about a sibling pair similar to me and my brother. I’ll be honest, I want to write a book where someone like my brother does find a cure and gets the chance to live a normal life. I also have a children’s book planned for a parent to read to their typical child about their sibling with special needs. As a kid, it would have been nice to own literature written for me. I want to provide that for someone else. In the distant future, when I am older and wiser, I’d like to write a devotional specifically targeted to surviving caretakers in families with genetic disease. It would be niche literature, but scripture like “my strength is made perfect in weakness” has a complex meaning in a family with DNA some may label as “faulty”. I’d read a book like that if I knew it exists, and I don’t know that it exists, so one day I’ll write it. In the meantime, I’ll blog at darcyleech.com.