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.

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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… 🙂

 

The Faith Story of From My Mother – shared with Heartland Community Church 4/24/2016

For My thoughts are not your thoughts, Nor are your ways My ways,” declares the LORD.  “For as the heavens are higher than the earth, So are My ways higher than your ways And My thoughts than your thoughts.…

Today I had the humbling honor of giving a guest sermon in our church, Heartland Community Church in Great Bend. It took a lot of courage and prayer to be able to prepare the sermon, and it took grace to be able to speak the words. But it felt so good to do it!

I told about the evolution of prayer in my life from a child’s “wish” prayers, to the search for meaning prayers I had as a teenager after losing Dustin, to the prayers of “thy will be done” when my mother was in long-term critical care.

“I asked God to let Dustin walk one day, Daddy. It’s what I always wish for.”

The most important thing I told about though was my mother’s faith and strength in her last days – what carried me through to be where I am today. Bless her. The strongest woman I will ever know died with weakening muscles, but steadfast faith. This is her story. God is in it.

We are afflicted in every way, but not crushed; perplexed by not driven in despair; persecuted, but not forsaken, struck down, but not destroyed.

 

Here is a full audio recording with the slides presentation as a movie:

If you want to read the full story of From My Mother: Surviving and Thriving in a Family Ravaged by Genetic Disease, you can find it here: http://www.electiopublishing.com/index.php/bookstore#!/From-My-Mother-Surviving-and-Thriving-in-a-Family-Ravaged-by-Genetic-Disease-Paperback/p/63943406

This Weekend starts book events!

My 30th birthday is April 22nd, and that is also the date of my book release party in Great Bend, KS! If you are in driving distance and want to support me, I look at this as my most important birthday yet and the beginning of a new phase of life! Come support From My Mother and I’ll get you a signed copy of the book!

book release party

On April 23rd, I get the honor to join families like mine with a Muscular Dystrophy Association Muscle Walk. If you want to support my team, you can donate at http://www2.mda.org/goto/frommymother or you can build on jewelry like this I got with some super garage sale skills… (true story) Check out my ebay profile to see if you want to help my team with some rewards: http://www.ebay.com/sch/dlbraves/m.html?item=311592806098&ssPageName=STRK%3AMESE%3AIT&rt=nc&_trksid=p2047675.l2562

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Then, perhaps the biggest event this weekend and the closest to my heart, is I get to give a guest sermon at our Heartland Community Church. I’ve been thinking about what to say for a month. From My Mother is mission driven for me. I believe I was called to write this book. I get to tell people on Sunday part of what I think I was put on this earth to do. That’s beautiful, but a little intimidating. I’ll be praying in the meantime for the words to say.

And two great 5 star reviews were left on Amazon today. Things are looking promising for From My Mother reaching the audience who needs it. today: http://www.amazon.com/dp/1632132249/

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From My Mother has 12 5 star reviews on Amazon right now and 30 reviews on Goodreads (29 5 star, 1 four star). Every review counts for this first time author, so please do post a review and help the momentum if you want to support the story!

Beyond Willpower: Caring for a Brother and Mother with MMD

A family caregiver struggles to accept what is — and what will never be no matter how hard she wills it

Chapter excerpt of From My Mother by Darcy Leech

Beyond Willpower

As a young girl, my constant goal was to help my brother Dustin walk. Dustin’s limits were hard to gauge because he constantly surpassed expectations. He was born with congenital myotonic muscular dystrophy and expected to die; then his life expectancy was three months and then three years. Instead, he gained strength and capabilities until age thirteen, when he had a simple cold and just did not wake up from his nap. His body became too much for the largest muscle in his body, the heart.

meeting Dustin

While Dustin was alive, I threw quarters in wells, prayed every night, and practiced with him every day after he had surgery and got corrective braces. I would stretch my brother’s legs, rotate his ankles, do resistance exercises, and help him practice standing. At age twelve, I thought willpower was so strong that, through perseverance and dedication, I could will my brother to walk.

family pic age 5

Three years older than my brother, I grew up doing adult caretaking tasks. Through the years, I would change thousands of diapers, brush Dustin’s teeth, lift him into bed, administer nebulizer treatments, clean his feeding tube, watch him when both my parents had to work, bathe him, unload his wheelchair from the bus, and play with him. Most things I did for my brother were helpful, but at times, with my conceptions about willpower and Dustin walking, I pushed my brother past his comfort level and caused more pain than progress. For me, being the healthy sibling, willpower was a tool to push past obstacles. However, the same view I took of my young healthy body proved detrimental to my brother’s and caused him pain.

For a while after Dustin died, I lived a pretty normal life. I went to college, dated my future husband, and wrote about my brother. Before getting married, I had a genetic test for myotonic dystrophy, which came back negative. I was going to have the chance to raise a normal family — a chance my mother only thought she had.

5 gen - mom shows facial weakness

I knew my mother, Jo Lyn, also had myotonic muscular dystrophy. I knew that when she shook someone’s hand she couldn’t fully release her grip unassisted. I knew that for the last ten or so years of her life, she couldn’t open jars. I knew she walked more slowly, her leg swelled, her endurance shortened, and one day she would need a wheelchair. I knew she enjoyed her job at Wal-Mart — until she switched stations, no longer had a chair, and had to stand during long hours on the job. I thought she quit because she wasn’t tough, maybe even lazy, or because she didn’t speak up well enough to get a chair. I worried about getting new basketball shoes when my mother no longer worked because her legs hurt too much.

She’d come to softball games and not be able to climb the bleachers, so she’d bring a lawn chair and sit away from the other parents. Once, when she tried to work again, she fell asleep as a paraprofessional in a grade school class and never got called back.

As a teacher, I tried to be gentle with my mom, but I told her she’d have to will herself to pay attention, try to find ways to stay awake, and prepare better by getting more sleep. There were a lot of times I thought my mom wasn’t trying hard enough, was too concerned about resting, or that she should choose not to be so sad.

My brother Dustin had an obvious terminal disease. I was told before I met him that I would live longer than him. I knew to cherish every day with my brother and that, as his healthy sister, it was naturally my job to help take care of him.

mom and dustin face comparison

My mother was once very capable, beautiful, and vivacious. Her illness crept up in small increments. She was losing muscle strength; I thought a lot of it was mindset and effort, that she could will herself into being the woman who had ridden bikes with me when I was ten. When my mother ended up in the hospital, unable to breathe on her own, I felt blindsided. Mom was going to live with us, help me be a good mother, and watch my son, Eli, while I worked. Looking back, the signs of her disease were obvious, but living through it, I often thought Mom needed to toughen up. I gave advice about perspective and will, choosing pragmatic advice over empathy or true compassion.

The small-town doctor had never heard of her rare disease. When he said, “If she has myotonic dystrophy, I don’t know there is much we can do,” I knew it wasn’t my mother’s lack of willpower that put her in the hospital. I had known so much about Dustin’s congenital myotonic dystrophy and paid so little attention to my mother’s adult-onset form. Myotonic dystrophy can affect mental acuity over time, slurs speech, and creates hypersomnia and apathy — all signs my mother had. There were so many things my mother did that I had wished she could just “change her mind” about. She couldn’t just change her mind. Her genetics carried a degenerative muscle disease.

trying to write again to communicate

Willpower doesn’t change everything. We can’t be just anything we want to be. My mother couldn’t will herself to be like she was when she was thirty or forty. She couldn’t choose to be normal — her muscles were degenerating.

She had the social stigma of seeming weak, lazy, lethargic, apathetic, sad. She chose none of those. She willed none of those. She was limited by her genes, and we were limited by our ignorance.

My lessons from my mother’s life are many, but one that stings the most, the one I want to imbue in my heart, is to not judge people negatively by how they act, even if they look normal or have been normal in your past, because you never know what they have to fight inside — something they never chose to have.

The answer to Dustin walking was not willpower. He was not born to walk, and while trying made us better people, more practice wasn’t the answer — compassion was. The answer to the feeling that I was losing my mother slowly over the years was not to try to motivate her into a new perspective to magically fix all the problems; it was love.

As painful as some of the moments were, I thank God for my time with my mother while she was on a ventilator in long-term critical care. My heart knew she couldn’t get better, I couldn’t will it, and all my prayers were “Thy will be done.” I took joy in washing her hair and felt honored to comb it.

It took until the end of her life for me to cherish each day with my mother the way I naturally had done with my brother. At the end, I loved my mother simply, without any requests to do better in any way or be more capable. I simply loved that she was there, and she was my mother.

I wish I did that more often in my life. I will do that more often in my life for those who are still here.
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Read my family’s story in From My Mother, releasing tomorrow, March 29th!

http://www.amazon.com/dp/1632132249/

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My first ever group book talk about From My Mother

A friend from my day job as an instructional technology coach at a middle school, Susan Brown, asked me if I would visit her Beta Sigma Phi women’s sorority as a guest speaker. Enthusiastically, I agreed. I’ve lived in Great Bend, Kansas six months now with From My Mother being about two months from publication. Getting the chance to meet people in the community and tell them my story was a prime opportunity I wanted to embrace.

 

Beta Sigma Phi would be a group of friendly women. Susan told me there would be about 12 members in attendance. I knew one from church, Susan from work, and still I was nervous. I tried to dress the part of an author with my cat eye glasses. “Fake it ’til you make it” has repeated in my head many times trying to gain the confidence to market my book and share my story. I repeated the mantra I used when I would pitch, serve a volleyball or shoot a free throw to stay calm: “Passion, fire, courage, desire.” That may be one of the biggest advantages my athletic career gave me: I can calm my nervous jitters with a saying I’ve used over a 1000 times in pressure situations. I needed it.

I prayed the entire car trip there, asking that From My Mother finds the audience who needs it and that I serve as a good vessel to the story and the higher calling. I’m glad the women met me with such friendly faces!

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Susan helped me feel at home in my first book talk! Thanks Susan!

Knowing these local women could be vital in helping me spread word of mouth of my story in Great Bend, I politely asked if I could record the event and share it on social media. This also let me a get a video to study and make improvements with as a speaker. I already know I should fist pump a little less during my book talks…

I tried to connect with the ladies by telling them about my job, why we moved to Great Bend, and some background about my family. I had printed articles of the Quest Magazine chapter excerpt ready for the group, which I used as a live reading.

After the talk I fielded questions and even got to sign their articles! I may have asked the ladies if I could, but I autographed those suckers good! It was fun, and I felt confident and support with these amazing women. I told them about a local fundraising event my dad, my husband and me are hosting for for the Muscular Dystrophy Association to raise funds for the MDA Muscle Walk, a day at Gambino’s Pizza where partial proceeds will be donated to the MDA and our fundraising team will clear tables from 5-8pm to talk and receive donated tips on March 18th. If you’d like to donate visit: http://www2.mda.org/site/TR/Walk/General?px=3828311&pg=personal&fr_id=21922

I spoke to free for the group, and would again, because I know personal connections and word of mouth are how we are going to successfully raise money for the MDA and how the story of From My Mother will spread. I’d call my first book talk a roaring success! I had a great time and appreciate the opportunity!

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I had fun! Thanks for the invitation ladies of Beta Sigma Phi!

If you are in the local area and ever need a guest speaker, I’d speak to your group for free too! I’d love the chance to share my family’s story with you.

 

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The “selfie” I took with my mom over my shoulder before my first event. She’s with me in this… God bless her.