¨There is no government anywhere that God has not placed in power?¨

Romans 13:1 ¨Obey the government, for God is the one who has put it there. There is no government anywhere that God has not placed in power. 2 So those who refuse to obey the laws of the land are refusing to obey God, and punishment will follow. 3 For the policeman does not frighten people who are doing right; but those doing evil will always fear him. So if you don’t want to be afraid, keep the laws and you will get along well. 4 The policeman is sent by God to help you. But if you are doing something wrong, of course you should be afraid, for he will have you punished. He is sent by God for that very purpose. 5 Obey the laws, then, for two reasons: first, to keep from being punished, and second, just because you know you should.¨

2 Timothy 3:16 ¨All Scripture is breathed out by God and profitable for teaching, for reproof, for correction, and for training in righteousness, 17 that the man of God may be complete, equipped for every good work.¨

If we take both of these scriptures as completely true and beyond question, we lose the ability to fight Hitler or dislike the President.  Is that where we are meant to be?  Martin Luther King Jr. would not say so, neither would Augustine.  Martin Luther King, in his famous "Letter from the Birmingham Jail," called on all Americans to actively but peacefully oppose laws that were morally wrong. King wrote:

"There are just laws and there are unjust laws. I would agree with St. Augustine that an unjust law is no law at all... One who breaks an unjust law must do it openly, lovingly...I submit that an individual who breaks a law that conscience tells him is unjust, and willingly accepts the penalty by staying in jail to arouse the conscience of the community over its injustice, is in reality expressing the very highest respect for law."

We have to think.  We can't just accept what we are told on the radio, church or by authority figures.  So unless we believe in the depths of our souls that Hitler was placed in power by God and disobedience meant punishment, we have to be willing, as Christians, to intelligently question scripture.

The Strongest Woman Died of Weakening Muscles - Eulogy for my Mother

The Strongest Woman Died of Weakening Muscles - Eulogy for my Mother

September 23, 2011 at 4:25pm

 

 

 

 

Life is beautiful and grand, and the little ironies have a way of teaching us the most.  My mother is the strongest woman I will ever know.  The strongest woman I will ever know died because her muscles became too weak.  That irony tells me true strength is not physical.
My mother’s faith, out of all she’s given me, is the most wonderful gift a mother could give a child.  My mother’s faith was the strongest part of the strongest woman I know.
Shortly after my mother passed, we watched home videos as a family.  In one, we are at the Great Salt Lake in Utah.  The white sand stretches to the shore of an expansive still lake, and my mother sits with her chin resting on her hand, watching my father hold Dustin and me swimming in the distance.  Later, I play king of the hill with my mother as she stands atop a rock and successfully keeps me from getting on with her or pulling her off.  In 1998, at age 38, my mother had a very capable body.
If you met my mother since 2002, you do not know her full story.  My brother Dustin passed away this day, September 23rd, nine years ago.  A mother’s greatest legacy is always in her children.  If my mother’s greatest gift to me was her faith, my mother’s greatest gift to the rest of the world was bringing Dustin into it and loving him so much the rest of the world couldn’t help but love him too.
My mother and brother died from the same disease – myotonic dystrophy.  My brother was born with severe congenital myotonic dystrophy.  His case was so rare that university hospitals paid for sleep studies.  Myotonic dystrophy affects about 1 in 8000 people.  In my immediate family, it affected 2 of 4.  Myotonic dystrophy took my brother’s life, and my mother’s life.  The irony is that by having this disease, my mother and my brother taught me such lessons of strength and faith as I will find in no other book save the Bible.
I consider my brother the most innocent individual I have met.  I believe he saw angels and giggled as they danced.  People loved Dustin on sight; all he had to do was drool and grunt and they were hooked.  With Dustin I saw God in normal people and troubling situations.  My mother gave me the ‘good’ X chromosone, and I will hopefully live a long healthy life.  From my mother my brother inherited myotonic dystrophy, which could be seen as the ‘bad’ X.  However, Dustin’s life was beautiful, emphatic, and life changing for so many that met him no more than a day.  My mother brought Dustin into the world, and Dustin brought joy, love, and a visible sign of God’s mark upon creation.
My mother was not affected from birth by myotonic dystrophy; instead from age 30 on, my mother’s body gradually weakened.  At 18 my mother competed in beauty pageants, by 40 she had one leg that swelled and affected her confidence, by age 50, in New Mexico a few days before her final trip to the ER, the disease had caused her facial muscles to relax so that her jaw was slack and her eyes were drooping. She didn't have the muscle strength to smile for family pictures.
Looking from the outside without knowledge of her history, my mother might appear lazy or weak-willed.  Having been raised by her, watching her care for and bury Dustin and still give her everything to me, and witnessing her faith in the hospital, I know my mother is the strongest woman I will ever meet.  The irony is we didn’t really know how much the disease was affecting her until the ICU at Hays.  In the hospital, my mother’s condition reminded me to give everyone love and support; you never know what they struggle against that you cannot see.
In the hospital we struggled with questions about life support and resuscitation.  It is a complicated emotion to see your mother cry and try to push away the needle that will stick when she has been stuck 4 times a day for 6 weeks.  It is unfortunate my mother died in a hospital, unfortunate her disease caused her lungs to fail - It is beautiful that I got to spend time with my mother in her final days.  In her final week, I realized the great faith of the strongest woman I will ever know.
In the hospital my mother was afflicted with pain, afraid of the unknown, affected by memory loss, bruised on her arms from needle pricks, and lonely when we couldn’t be there.  Such a situation may seem tragic; however, my mother made it gorgeous.  Jo Lyn told me she loved me every time she saw me, kissed me on the cheek with a tenderness I will always feel in my heart, summoned all her strength to wrap her arms around me in a loving embrace.  I’ve always loved and respected my mother, but in the hospital my mother became my hero.  My father was constantly at mom’s side.  Seeing my father care for my mother, he too is my hero.  My parents had a wonderful marriage, and witnessing my mother wrap her arms around my father from her hospital chair and kiss his lips with the tender gentleness of eternal love made me pray that Daniel and I could have a love as strong as my parents when we are 50.
Knowing her condition, knowing she wasn’t getting stronger but instead weaker, my mother consciously chose to face death with her faith and her family.  My mother prayed constantly.  My mother would ask me to pray.  My mother trusted God.  My mother trusted God enough to live with the pain, to try to become stronger, and in the end, to wait for her family and show them with firm resolution that God was present in her life and that she was willing to greet Jesus in heaven.  My mother requested for my grandmother to sing “I’ll fly away”, telling us that she knew, as the song goes “Just a few more weary days and then, I'll fly away, To a land where joy will never end, I'll fly away.”  My mother let us know she was at peace, and would find even greater joy.
The night before the ventilator would be turned off , I feared the pain for my mother, I feared my own weakness in decision, I feared losing the mother I had had all of my life, the best mother, the dearest person and a close friend.
My mother reassured me.
A day before she told me that she had good dreams; she was at peace.  I asked her what she dreamed of, and she wrote she ‘dreams of Dustin.’  I asked my mother what Dustin was doing, and she used her strength to make physical imitations of running, jumping, and then with a closed fist, lifted her knuckle up and down repeatedly in rows.  I asked her what that motion meant; she said something I couldn’t understand, unable to read the lips of someone whose muscles weaken every day.  I handed her paper and a pen, and with scratchy handwriting she wrote “waters the garden”.  I read the words back to her and asked: “so Dustin waters the gardens in heaven, huh?”  She nodded yes and smiled.  The irony is that in my brother being in heaven, and my mother dreaming of him before she joins him, I was reminded of the great solace of life: in heaven there is no pain, no disabilities, we all have value, and in heaven we are wrapped in the warm embrace of God's love.
When the morning came, my heart sat in general numbness as my mother slept.  My father and I held hands, watching her rest peacefully.  She woke up about an hour before the ventilator would be removed.  Dad and I held her hand, kissed her, hugged her, and she smiled.  We went through a stack of pictures, reread the notes on the backs, relived memories, thanked her for the good times, and shared a love that will never die.
The nurse came in to ask my mother if she was ready for the ventilator to be turned off.  She mouthed yes.  The nurse asked if she would like the trach completely removed or capped; my mother responded removed.  The machine was turned off, the trach removed, and my mother pulled the strap off her neck.  She smiled at us, her burden gone, and drifted gently off to sleep.  I watched her breath become more and more shallow, counted the seconds in-between.  Daniel held Eli, and Eli started to cry in hunger.  I let go of my mother’s hand, held my baby, and nursed my son.  I was feeding Eli as my mother stopped breathing.  I was holding my son as the nurses checked for a pulse no longer there.  Another of life’s ironies, at the moment my mother was dying, my son was growing from my ability to give him a gift as his mother.
My mother had planned to watch Eli in his first year while I worked.  She was going to live with us, care for Eli every weekday.  My mother and I both looked toward that time with great joy.  My mother was going to be able to teach me to be as good of a mother as she was, help me learn what it means to care for your own child.  My mother didn’t get that chance.
However, in showing me her faith in her final days, by trusting God resolutely, by wanting to see her own mother so much, by dreaming of her own son in heaven, by holding my hand and telling me to take care of myself and love Eli, my mother showed me the full truth of what a great mother does for her children.  My mother is not only the strongest person I will ever meet, she is the best mother I could have.  If there is one thing I ask God to give me, it would be the strength to love my child - like my mother does.

song that played next:
http://www.youtube.com/watch?v=TUKmuXXkhxE&feature=fvst

The strongest woman I will ever know...

Family photo in 1998 Dustin passed away in 2002; mother passed away Sept 20 2011.

Mom in 1982

My parents' love has blessed my life in many ways, but seeing them care and comfort each other so well in this time warms my heart. My parents are good role models of love. :D

getting a hug from my mommy

Letter to my Intensive Reading Students for Monday

I teach Intensive Reading class where students who read below grade level work to raise their reading ability to grade level or better.  Here is the letter we will do as a fluency reading on Monday when we return for second semester:

Dear Students,

                I am glad to be back for another semester.  We made great progress by raising lexile scores, reading hundreds of pages per person, developing better fluency, and passing so many classes.  I am proud of you!

                I look forward to building our skills and reading interesting texts to better our knowledge.  I enjoy teaching and watching the young men and women I teach grow to be well informed capable adults.  I believe each one of you will grow to be a successful adult and be able to read complex texts and make smart decisions on your own. 

                We will continue to find success and grow in ability to identify the meaning and purpose of written words.  Analyzing author’s purpose is particularly important.  Knowing what an author is trying to do is important because some author’s will purposefully try to mislead or convince the reader of something not necessarily true.  It is important to be a careful and aware reading when it comes to money.  To be a responsible and self-sufficient adult, one needs to understand author’s purpose to avoid being cheated or mislead.

                Reading well is a vital skill thriving in modern America.  Those who strive to read well can make better decisions, spend money wisely, and communicate effectively through computers and the internet.  Reading opens realms of imagination, relaxation, and higher learning.  Investing in reading well this semester will show rewards not only in high school, but in post-secondary learning, work force advancement, or personal enjoyment.  Reading matters, and together we can read better. 

                I look forward to seeing the growth we achieve this semester.  I am personally invested in helping you be a better reader and opening opportunities for the future.   How much can you do this semester to improve your reading ability?

(It's just under 300 words - so that is a one page fluency reading :) )

End of Year Toddler Craft - Calendar Cut up Artwork

Today my almost 2 and a half year old son, Eli, and I sat down for craft time with our old 2013 calendar, two pair of scissors, and a glue stick.  This would probably work with any calendar, but we had a calendar with Bible verses for each month and in our Christian house this was a good activity to teach my son more about the season we will soon be celebrating – Christmas.
First, I let him flip through the calendar and we picked his two favorite pictures: a light house on a ice covered cape, and a wheat field reminiscent of Kansas.  I cut those two images out as our backgrounds.  Then, while he practiced cutting on a page that would become scrap paper, I began cutting the Bible verses from each month and reading the verses aloud to Eli.Once all the verses were cut, I would hold the verse, he would hold the open glue stick, and I would help him glue the back of the verse, ask him where he wanted it to go, he would point to a spot on one of the backgrounds, I’d place it there, and he’d pat it down.  After each verse was glued in place, I’d read it.  Then we’d repeat.  He really enjoyed the making the project and using the glue sticks.  If he were older, he probably could have done all the cutting himself, but as it was it was fun and not frustrating for my son’s budding skills and gave us a chance to talk about Jesus preparing for the upcoming holiday season.Once we had our two backgrounds near complete, we had dad take pictures so Eli would feel special and appreciated in his artistic efforts, then we picked a place on his craft wall, and hung the pictures together.  To top off the craft session, I grabbed a puppet who commenced to ask Eli questions about his craft and let Eli ‘show off’ his artwork to ‘someone’ besides me.  Overall a pretty easy craft for a parent and young child that had good results, made use of an old calendar, and in this case helped our family focus a little more on the meaning of the season with Christmas – Jesus Christ.

The Problem of Physical Medical Records and Silent Diseases (revision of Ch 7 excerpt)

Knowing of Dustin’s disease and shortened life expectancy since the age of three, I grew up well informed about myotonic dystrophy.  Or rather, I thought I did. My father told me soon after Dustin was born that my brother was likely to die before I did.  As a three year old, I doubt I understood much of what that really meant, but Dustin’s condition and outlook were never a secret from me.  I knew my brother needed open heart surgery soon after birth, required help breathing in the first three months of his life, had a feeding tube for the first six years and wore oxygen in his nose to bed until he was 11 or so.  I knew myotonic dystrophy gave my brother weaker muscles, that he had inherited the gene from my mother and that I was likely unaffected based on my good health and academic success.  It seemed I knew quite a lot about muscles and genetics for being so young.

Growing up I grappled with the proposition that my brother was likely never to walk.  I went along to multiple doctor visits to evaluate Dustin’s ‘club foot’, a condition I didn’t know the technical term for, ‘talipes’, until 15 years later.  I knew my brother’s feet curved in a way that caused his toes to curl in and under towards the arch of his foot.  I remember reading in the hospital waiting room as Dustin underwent surgery for a third time to tighten his Achilles tendon to correct the bend of his feet and enable him to walk.  The doctor let me feel the mold for Dustin’s leg braces before it were to be cast. In caring for a severely handicapped child, it is important all capable willing members of the family are knowledgeable in how to assist in the daily exercises to build strength and gain skill, and that the family members feel excited and important in assisting the handicapped child.  In subsequent visits, I was taught how to put the braces on Dustin, tied his shoes over them, lead Dustin to the rail, and helped him take steps. 

In one visit where the doctor wanted to train the family to teach Dustin to walk, I wondered if my brother would let me help, or if I would be any good in helping my brother to do something he had never before been able to do.  I approached the room my brother was in tentatively, wanting so much to be a part of helping my brother to walk, to be more like me, to overcome the odds and nervous that Dustin might not let me help.  Luckily, he was in a good mood and receptive; when I walked into the room and said his name with open arms to go hug him, his lips raised in a smile, he brought his hand to his mouth, shot his legs out in excitement, and gurgled in delight, welcoming me in the activity as if what the doctor had done was a game. 

I smiled at my brother, and playfully called him by his nickname: “Hey udey-dude.”  Dustin seemed relaxed, and apparently the doctor approved as he placed the brace in my hand.  In my left palm I held the smooth back of the brace which was molded to my brother’s leg, curved and smooth.  In my right hand I held the flat based that would go under his foot.  The inside was molded to his foot, but the outside was formed to create a solid base and felt more like an odd type of dress shoe.  I rubbed my thumb on the inside where the ball of my brother’s foot would sit.  It had a crisscrossed pattern across it to create friction and prevent slippage.  The brace was impressively light and durable.  I raised the brace to my brother’s foot, slid his heel deep into the corner of the brace, moved my left hand to cover the front of his leg and hold the grace, then took the bottom Velcro in my right hand, pulled it over his foot, and secured the Velcro tightly onto the other side of the brace.  I pushed his calf against the back of the brace securely and began to take the bottom strap diagonally to the top Velcro catch, then crisscrossed the top strap to the bottom Velcro.  Dustin’s foot was secure and he didn’t seem to mind the brace. I eagerly took his already loosened shoes, maneuvered them over the brace and his foot, and carefully tied his shoe over the brace.  I had gotten to practice the steps of strapping my brother into the brace and tying his shoes over them before; however, today was going to add another step I had not yet been allowed to do.

 I felt my chest leap with excitement as we lead Dustin to the rails.  I held my brother’s hand, smiled at him and placed his hand on the rail.  He let out a breath which hissed in a tone between excitement and caution.  His hand said he trusted me, but his eyes widened as he looked down at his feet and realized how high up his head was compared to when he sat on the floor.  His scrawny legs were weak and wobbly, awkwardly small amid his large knobby knees and bulky braces.  The physical therapist in the room reached down to move Dustin’s leg, one at a time, and my brother stepped about three feet with the therapist moving his legs, me holding just above his hips, and the doctor watching.  It felt like a success and for a while my young heart thought anything was possible. 

As a child, I was told about myotonic dystrophy in cautionary, optimistic tones.  The adults around Dustin wanted me to care about my brother and be hopeful, but they didn’t want me to think the answer to Dustin’s troubles were like something that Santa was going to deliver after flying to my roof and climbing through my chimney.  When the doctor wanted to train me to help Dustin walk, I was partially seen as a resource who could assist in getting Dustin daily practice and repetitions.  I was an eager young girl who believed in her brother getting stronger without the limits of logic or the experience of seeing someone get weaker instead of stronger.  I was youthfully and eternally convinced that my brother could learn to walk.  I think the doctor was partially willing to involve me in the process so that I didn’t hurt my brother by trying on my own without training. 

As Dustin passed infancy and grew from a toddler to a young child, his body seemed to become healthier and more durable.  His vitality and capabilities increased with time.  By the time of the attempts to get Dustin to walk, he no longer needed his feeding tube, but could feed himself with a spoon or fork.  He no longer needed oxygen and could communicate with varying pitches and tones in most vowel sounds and a large range of consonants.  Dustin was able to wheel himself to the balloons at Wal-Mart, interact during recess at school, and scoot anywhere in the house using his arms to push his bottom forward. While his obstacles at birth were severe and life threatening, his prognosis seemed to be ever improving as he outlasted life expectancy predictions and progressed in ways doctors said he never would.  Learning to walk seemed like the next logical step.  All the news that reached my ears seemed to be good news and besides when he was sick, I had only seen my brother get stronger over the years; even when Dustin was sick, I’d be told with the right medical attention, he would be ok. I began to think that with enough prayer and willpower, anything could happen if God were willing. 

I wished fervently for my brother to be able to walk.  I prayed for him nightly, threw quarters in wishing wells, and was diligent in helping him wear his braces and insisted on constant walking practices with him after school.  I would stretch my brother’s legs, rotate his ankles, do resistance exercises and help him practice standing.  However, it didn’t take long before Dustin didn’t enjoy wearing the braces much, and sometimes I would want to practice longer than he was comfortable.  My 10 year old brain was convinced my brother was gaining strength and would one day be able to walk because he had broken so many limiting expectations in the past.

At times I would hold Dustin’s hand next to a rail, at others I would have him hold onto my waist and we would walk together.  After a while, our public school built an apparatus which was basically a long flat board with side supports and hand rail on either side so Dustin had a platform to walk across.  He had a stander at school, and various walking assistance equipment.  At home, when Dustin would seem as if he were done walking, often I would have him stand leaning on the couch.  My fifth grade logic thought this good practice, that standing after he had worked the muscles would build good endurance and lead to muscle strength. I wanted my will power and effort to be able to change the predictions on the limits of my brother’s potential.

Dustin would lean with his forarms resting on the edge of the couch.  He was tall enough that he would bend at the hip, his waist jutting out awkwardly from side to side as he rotated his balance.  His knobby knees would dwarf the size of his calf muscles, which looked like flabby flat skin hanging loosely from his bone.  The braces seemed to double the width of his ankles and extended almost half way up his leg.  He had to wear high top sneakers with the braces, which were filled to capacity and were laced tight to hold the shoe in place.  Occasionally, even with the braces, his ankles would give as he adjust the weight around his hips and he would stand with one foot flatly on the ground and the other would have rolled so that most the side of his shoe touched the carpet.

After the third surgery, my brother again seemed to be defying odds and was able to stand longer and even began to show some definition in his calf muscles.  However, with his muscle condition, my brother’s feet did not quite look like mine, even after a third surgery.  The weak muscles would not hold the tendon tight, and his feet again began to curve in.  His braces became a discomfort, and weren’t fixing the problem or giving my brother a stable surface to stand on.   So, we took on more stretches and foot rotations, trying to build strength in and around Dustin’s ankles so the tendons would straighten.  Sometimes, I would add extra stretches in before bed or before school when Dustin woke up. I persisted in practicing standing and walking with my brother.  Three surgeries would be a waste without appropriate practice.

I was watching my brother stand at the couch a few months after his third foot surgery when my father came home from working at the water treatment plant on Hill Air Force Base, in Utah .  My father was dressed in his fatigues and had the usual sweat and dirt on his uniform from a hard day’s work. Dustin was standing, bent over on the hip with most the weight resting on his arms against the back of the couch, grunting in a whining tone and shifting his weight uncomfortably.  My father saw my brother, recognized his discomfort, and asked in a startled voice, “How long has he been standing there?”

I had wanted my brother to practice, and as a young child, even as an adult, I am not gifted in understanding other’s limits.  I’m not sure how long I had my brother standing there, but I knew he wanted down, and I know I didn’t want to let him, because in my mind practice, determination, and positive thinking lead to physical growth and strength.  My brother had no graceful harm-free way to let himself down from standing next to the couch without simply crumpling to the floor.  My father walked at a quickened pace over to where my brother stood, bent over so his knee was on the ground and wrapped one arm under my brother’s legs and one arm around his back.  My brother immediately embraced his father, reaching desperately around Randy’s neck and letting his frail body fall into my father’s strong embrace. Randy carried Dustin over to his favorite toys in the living room, placed him gently on the floor, and began to play puppets with my brother, having Mickey ask Dustin how his legs felt as if it were part of the game.  I watched as my father’s tired and tight muscles relaxed on the floor next to my brother’s tired and flaccid muscles, watched their joy in playing and enjoying their moments together.  I knew something in what I did was wrong.

After my brother went to sleep, my father explained that Dustin’s body was different, that the surgeons were trying to help Dustin walk by enabling his feet to look and stand the way mine did, but even after that, Dustin’s muscles would have to grow strong enough to hold his body weight and he would have to learn the skill of walking.  It was going to be a long process.  I had to be gentle with my brother.  Tough practice wasn’t going to make his body like mine; Dustin was just built different from me and for that I was very fortunate.  Dustin was never going to run as fast as I did or try to practice pushups with his feet propped up on the coffee table in the living room to try to win a grade school Presidential Fitness award.  The way I thought wasn’t going to change my brother’s muscles and I could really hurt him in trying.

At that age, I was bigger than all the boys in my class, finished fourth in the mile out of all the top runners, and was routinely picked first or second when all the boys got together to play recess football.  If I tried harder, I did better; I was strong and I was big.  For a month before the fifth “President’s Physical Fitness Challenge” I ‘trained’ at the house doing push-ups using the coffee table as an incline, pull ups in dad’s closet, trampoline jumping acrobatics, and gave targeted attention to the V-Stretch, my usual lowest score.  Limits, in my young mind, were obstacles set to be mentally broken by those tough enough to push through pain.  I thought because my brother had defied so many odds and expectations with good health in the past that with the right mind set and unfaltering effort he could be pushed into walking.  However, pushing my brother in the way I pushed myself didn’t bring him to walk, and my blind optimism and stubborn determination brought him pain.

As the months passed after the surgery, it became obvious that the progress was temporary and that my brother’s feet would continue to curl back to where they were or worse.  The doctors thought about taking muscle from his knee or shoulder into his ankle, but in the end the process and training was ruled too painful or futile to be worth the higher risks. Each year of my brother’s life, my father’s military insurance deductible had to be paid in full.  Perhaps there were surgery types available that could have helped Dustin walk, but with the financial bills we already had and the rates the insurance company was paying the hospital, our money was not going to buy Dustin a cutting edge experimental surgery.  There would be no more corrective surgeries or medical attempts to help Dustin walk on his own.

 The special education department at school still had time for Dustin in the stander, but he practiced taking steps for shorter periods and eventually it was generally accepted that Dustin was not ready to walk and would probably never walk unassisted.  When the military changed my father’s assignment and moved us to a new school district, Dustin did not have a walking training program that focused on steps, but instead focused on him standing longer periods.  My brother’s progress was no longer going forward with walking and instead the focus was shifted on making his arms strong enough to maneuver himself in his wheelchair.

Most who are born with congenital myotonic dystrophy and survive to age 10 can walk.  However, Dustin’s mere survival was laughing in the face of known medical odds.  Dustin’s myotonic dystrophy carried so many repeats of the wrong protein triplet on chromosome 19 that he didn’t really fit medical textbook cases, or there were enough additional birth complications that there was no simple comparison.  When he was born in 1989, there weren’t many children who survived birth with myotonic dystrophy as severe as his, and I have never met another as severe as my brother.  The muscle disease often creates weak enough hearts that infants don’t survive outside of the womb.  My brother had successful heart surgery right after birth.  My brother turned blue from lack of oxygen almost immediately after birth, and infants with myotonic dystrophy often cannot breathe on their own.  However, Dustin had grown strong enough to only need oxygen at night when he was sick.  Many children born with severe congenital myotonic dystrophy simply don’t survive except by stroke of miracle or luck, or the improving medical services available and good staff.  Perhaps now, over twenty years of medical advances later, I could find more children like my brother, or perhaps with early detection that type of child is still rare because more are aborted in utero than born in the modern era.

My brother had constant medical attention from an experienced doctor at Wolford Hall Military Hospital.  The military moved our family strategically close to the best Air Force Hospital available.  In Salt Lake City, Dustin had a team of doctors, and a university research hospital paid us to bring Dustin in for additional studies involving graduate students and sleep studies.  Dustin was treated by well informed, well paid, highly intelligent, caring individuals and he thrived in those circumstances to become a healthy and happy young man who did not need oxygen, a feeding tube, or overnight medical stays for years at time.  His severe case helped rewrite the medical research as a living example of a genetic mutation that cause most to die in infancy and was a brilliant success story of modern medicine and prayer. 

My mother, however, fought the creeping slowness of adult onset myotonic dystrophy in oblivion, away from all the geneticists, large military hospitals, or graduate work research.  She was diagnosed with myotonic dystrophy soon after Dustin was born by a simple handshake.  Myotonia is a condition where the muscles have trouble relaxing after contracting.  If my mother shook someone’s hand, she would have to physically push her palm back into place or wait a long time for it to return there itself.  Myotonia is not present in congenital myotonic dystrophy, but if a child survives into adulthood, the hand release difficulty of myotonia appears.  My mother had it.

My mother was diagnosed in her medical records as a carrier since 1989; she would be affected by the disease more and more as time went on.  While my father was still in the military, when we were around the best medical care, my mother’s disease did not have overt affects.  My father retired from the military in 1999, three years before Dustin passed away, and thirteen before my mother died.  Dustin’s medical records were extensive, multiple huge folders worth.  When we lived in Utah, the last place my father was stationed, we had most of his records, but some of the earliest were lost or discarded.  My brother had a large enough file that no doctor could go through all of it, nor would they need to.  His disease was obvious.  When my father retired from the military, the family medical records were sent to the National Archives.  If we knew more, we could have kept them, or requested all of our records.  We didn’t.  Dustin regularly saw a doctor in Kansas, and the records from the last hospital were requested and sent.  He lived in one city for the rest of his life.  His medical care was good enough.

My mother, however, did not have her full medical records when she was taken to the hospital in small town Larned, Kansas.  From Larned, she had to wait over two hours for an ambulance to take her to Hays Medical Center. Hays Medical Center did get the medical records from Larned, but that apparently did not include the diagnosis that my mother had myotonic dystrophy. 

 

I've been told this was the first, or one of the first times I got to meet my brother - in a mask in a hospital.

“And That Means I Can Do Anything” Cathartic Realism in the end of the curious incident of the dog in the night-time

Have you read the curious incident of the dog in the night-time?  Great, read this analysis of the ending.

Critical Analysis with **SPOILERS OF ENDING****

http://www.amazon.com/The-Curious-Incident-Dog-Night-Time/dp/1400032717

“And That Means I Can Do Anything”

Cathartic Realism in the end of the curious incident of the dog in the night-time

 

The autistic juvenile narrator of the curious incident of the dog in the night-time (hereafter the dog), Christopher Boone, can be analyzed as a tragic hero who completes a quest.  The novel ends with the haunting claim by Christopher that he will achieve his dreams and be exactly what he envisions himself to become, a scientist.  Christopher lacks a full sense of self-awareness.  He believes his dreams will succeed because he completed his ‘quest’.  Christopher believes he showed success and capability in going to London on his own, solving the mystery of who killed Wellington, found his mother, was brave, and wrote a book.  Due to his self-perceived success, Christopher concludes ‘that means I can do anything.’

The ending of this story is intentionally meant to give the reader pause.  Christopher himself, being not fully aware of emotions, cannot experience full catharsis as a tragic hero.  However, the artistic genius of the dog is the author’s ability to let the narrator present a voice to the reader which does not make conclusions or tell the reader what to think, thus leaving the reader to analyze the narrator internally.  The reader must contrast Christopher’s optimistic self-assessment to realism. 

Christopher cannot do anything and everything he could envision.  His trip to London was not a success.  Police were looking for him, and at any moment he anxiously gripped a knife handle, unable to serenely handle the human atmosphere around him.  In solving who killed Wellington, he isolated his father as a liar and refused to grow past that one fault to allow a successful relationship.  Christopher found his mother, ruined her current relationship, and forced her back into a life style she purposefully escaped.  He was brave, in a sense, but was incapable of enduring the stress of high human interaction in the subway.  He views his quest as a success and a sign of growth, but to an astute reader, his quest is seen as a series of near tragedies and life altering chaos for his parents.  In Christopher’s self-acclaimed success and claim that he can do anything, the reader should see the subtle, but climatic emphasis of the author’s purpose in writing the text: humans are not capable of anything and everything, including those with disability; thus, to show true empathy and emotional connection, we need to acknowledge the difficulty in living with limits on our potential.

 As the sister of a severely handicapped brother, I empathize with Christopher’s family.  My brother Dustin, although a beautiful blessing, had mytonic dystrophy and could not accurately claim he could do anything he wanted, in part because he was not physically or mentally capable of speech.  My parents, like Christopher’s, put commendable amounts of effort and energy into caring for my brother.  Along with that energy, came occasional stress and frustration.  The catharsis at the end of the dog is not about Christopher’s personal growth; in fact, he changes very little in course of the novel.  However, the catharsis rests in the reader, who experiences an emotional cleansing of realism, acknowledging that not everything is possible for everyone and moving forward from that realization to accept that it is neither fair nor correct to expect everyone to be the same, to be capable of all their dreams, or expect that living with limits is easy on any one individual or their family. 

We are not fantastical knights in a story who all complete fairy-tale like quests and succeed in our goals.  Life has real limits, challenges, and risks.  Christopher was brave, but in his daring, he encountered a world that was not ready for him, and that he was not ready for.  His mother could not handle the challenge of raising him and abandoned her family.  His father loved him dearly, but after one lie Christopher could not fathom living with the instability not being able to believe everything his father said and refused the help of his most consistent caretaker.  The answer to life’s challenges is not always success.  However, I believe Mark Haddon, in his tragic ending that the narrator views as a success, wants to encourage empathy for those with disabilities and their families in acknowledging that the path is not easy and that there is no clear ending where the struggle stops and that no one is capable of everything.

My Agent Said "I think you'll get this published"!!!!

Today I got a Positive Response From My Literary Agent!

 

Today I got a Positive Response From My Literary Agent!

September of 2011, my mother, Jo Lyn Bartz, passed away after a month in the hospital from respiratory failure.  This summer, I began writing a memoir to share the story of surviving and thriving in a family with genetic disease, telling how I lost my mother and brother to myotonic dystrophy.  I sent my first query letters to agents July 14^th of this year.  3 hours later, I had a positive response from an agent.  I then started extensive research on how to create a complete proposal for literary non-fiction, and created a complete proposal ready for agents and book contests.  July 18^th I had a positive response from Quest Magazine in publishing an article excerpt from my memoir, From My Mother.  On September 26^th, I sent my complete proposal to my literary agent, including links to my newly published article and a poem which was selected to a Kansas poem of the week in September (http://150kansaspoems.wordpress.com/2013/09/02/mom-dad-and-dustin-on-the-beach-of-the-great-salt-lake-1997-by-darcy-leech/). 

Since then I have written to page 156 and have an almost complete draft.  I still have to write the hardest part of the book, recounting my mother’s last days in long-term critical care in Wichita.  I’ve been dragging my feet in writing in part because the end of the book is so emotionally charged that it changed my mood for a few days to relive it all to write.  I know the story is important, and I know the writing is worth it.  I had been waiting on The Christopher Doheny Award to announce a winner to hopefully gain some motivation or have more direction (http://www.centerforfiction.org/awards/the-christopher-doheny-award/).  Originally, the award was supposed to be named by the end of November.  I emailed when it wasn’t posted Dec. 1^st, and found out the announcement had been delayed to January. 

I had felt a little stalled, started spending my free time playing with Magic cards or other distractions rather than writing, avoiding the catharsis of writing the final chapter.  Over summer I had a Bible study with great and wise women who prayed for me every Tuesday and encouraged my writing.  I felt so much momentum over summer I was sure I was going to be published and felt very proud of myself to be a paid author after getting the check in my hands and physical copy of my Quest Magazine article (http://darcyleech.blogspot.com/2013/10/beyond-willpower-caring-for-brother-and.html) .  Then, since October, writing felt slow, the momentum felt as if it dwindled, and as a busy teacher, I began to think next summer I would pick the project up again. 

Then today, Dec. 5^th, I got this email:

Hi, Darcy, you have done a wonderful job of presenting your work, but I think that you can make this stronger. I am going to offer thoughts that you can take or leave, but they are meant to try to help you achieve the goal of publishing this book.

 

Your marketing sections are superb. No changes there. Your chapter summaries are fine; they indicate the flow of the story in a clean, straightforward way.

 

Basically, I like your handling of the story, but there just isn't enough texture in it yet--that's my opinion, of course. Storytelling is a very challenging art. You have to guide the reader in terms of pacing, conjuring up images of places and people, and so on.

 

Take another look at your sample material and ask yourself if someone would be able to get enough images and grasp of emotions to make a great movie out of it.

 

I don't think this needs a huge amount of work, but I would like to see you take it up a notch in terms of literary quality.

 

I hope you will feel comfortable coming back to me when you do this; if you think that my advice isn't useful, I understand. I think you will get this published; I'm just trying to nudge you along a bit more so this book is the best it can be.

 

Kind regards, ** my possibly favorite person ever if this works out ***

 

My agent gave me a specific task, positive feedback, and thinks I will get published!

 

Amazing, wonderful, beautiful news! 

I shouted in joy when I read that email then commenced to dance around the room with my husband, Daniel, until my son wanted to join in and asked us to play ‘ring around the rosie,’ which we did.

 

My momentum is back. I have a story worth telling.  My mother’s legacy will be honored and people will know a little more of what it means to be part of a family with genetic disease because I will write and publish From My Mother. 

 

What I need now are readers.  I need to add more sensory details,  I need to show my reader what is happening.  I need to increase the literary merit of my first draft.  Who’s with me? 

 

(I’ll pay, or mention you in a published book’s acknowledgments – which ever you prefer!)

 

Game on!  Let’s make this happen.