Celebrating Miracles, 23rd Psalm and Ileostomies

By Linda Grupp Boutin

Thirty years ago in April, my life spun out of control. I had lived with the severe digestive problems caused by pseudo-obstruction for the last 7 years. Every day I spent at least 12 hours per day connected to an intravenous pump and gave myself all my nutrition through a permanent IV catheter. Complications abounded along with the debilitating symptoms of this rare motility disorder. My intestines went from paralyzed to working backwards to spiraling forward at ridiculous speed. My regular doctors worked in San Diego County, but the specialists at UCLA oversaw the intravenous nutrition. My complicated lifestyle impacted my husband every day, but he stayed beside me throughout it all.

So the doctors in San Diego decided to try one more test to look for anything else to be wrong with my digestion. Something that they might be able to cure or at least treat. This test left my large intestine rock-solid full of barium. As the pain became increasingly impossible to bear, Gary took me back up to UCLA for a consult. This time the recommendation came for surgery and reworking my intestines to include an ileostomy. Since I worked for 5 years as a nurse's aide, I knew exactly what they proposed and I wanted nothing to do with it. God, however, had another plan.

After a week in the medical center with nothing working to remove the barium, the surgeon came to my bedside on a Friday afternoon. "I need a decision whether you will agree to the surgery or not, Linda. I will be back on Sunday morning to put you on the surgical schedule for next week if you agree." I understood that they had tried all other options and if I didn't agree to surgery all they could do was discharge me.

When Gary came to see me that evening after a week of work, I explained to him what the surgeon had told me. He asked me what I would do and I had no answers for him.
 We talked about it, but still I could not decide. After he left to go to my brother's house to sleep, I continued to wonder what to do. I accepted Jesus as my personal savior 5 years before, still my path seemed impossible to tread. I wished I had my Bible, but Gary had forgotten it in his hurry to come and visit after a week of separation with him working in San Diego.

I laid in pain, calling out to God for answers. My prayer over the previous 7 years had always been the  same. "Lord please let me eat!" Every time I despaired, every time I wanted to quit, every time I rode beside Gary in the car to another ER visit, my prayer remained the same. It is said that God puts all the words to our prayers even as we struggle to find a way to verbalize our need.

So I called out to the Lord and reliably He found a way to answer. My roommate's family had stayed beside her all day. They left late and shortly thereafter a private duty nurse entered to sit with their mother all night. When the nurse entered, I noticed that she carried a large satchel which I guessed contained knitting, books, and other things to occupy the long night hours. When she passed by the foot of my bed, I dared to ask,"You wouldn't happen to have a Bible with you, would you?"

"Well course I do honey, would you like to borrow it?"

"Oh yes!" And soon I followed my mother's advice to open the Bible anywhere and just start reading. An answer to my problem would make itself known as I read. And when the Bible fell open, I found myself early in the Book of Job. I turned to Chapter 1, Verse 1 and began reading. As the time passed and I read more and more of Job's trials, I realized I wasn't the first person on earth to endure torment. Some of his trials I related to immediately, like losing everything in life. Pseudo-obstruction had robbed me of my work, strength and dreams. Relying on pain killers to endure the unbelievable agony of this disease no longer worked. My body now too tolerant to receive any relief from the medical profession's strongest medicines. The only escape came with sleep and I had no desire to sleep my life away.

Sometime during the early morning hours while reading, I fell into a deep sleep and when I awoke, the nurse and her Bible had disappeared. I envisioned her gently lifting it off my chest and whispering a prayer to help me through. Saturday brought another visit with Gary and all the normal routines of hospital life. I watched the hours ticking by and tried to sort through what I had learned about Job. He never cursed the name of God, no matter what the provocation. I resolved that I could do that too.

Another private duty nurse entered our room near midnight, much like the one who lent me the Bible the night before. More boldly I asked her if she might have a Bible with her. And one more time God provided. I leafed quickly through the parts of Job that I remembered, discovering that the best had been saved for last. I turned into the next book and found myself in Psalms.

So unfamiliar, yet the words so comforting in the storm surrounding me. I found myself drifting to sleep with the rhythmic, sing song of the early Psalms. But then I came to the 23rd and I used the bed controls to sit up straighter and pay attention to the words. And all of the sudden I understood what God was asking of me. He wanted my trust. He wanted me to set aside logic, He wanted me to set aside the world, He wanted me to forget what I thought I knew. He wanted me to submit to Him and His Plan.

Mom said the Bible would help me decide and now I understood her words at the deepest of levels. God had placed me in this circumstance at the finest of medical centers with the best that the team of doctors could provide. All that was left for me was to trust in His plan and not my own. I continued reading the Psalms and drifted off to sleep with the words resounding in my mind. 

On Sunday morning I awoke with the Bible again vanished, but confident that I had a decision for the surgeon. In a way, it really was no decision at all because all I was doing was trusting that God had me exactly where He wanted me to be in that very moment. The very best "belly surgeon" stopped by my bedside shortly after I opened my eyes.

"I need your decision," blunt and to the point. Surgeons in my experience kept an emotional distance from their patients.

"Put me on the schedule and do what you need to do," I answered.

The next two days of prepping went by in an eye blink. Gary had returned to San Diego and another week of work. The hospital routine filled my days and nights. I clung to the promise that "The Lord is my shepherd, I shall not want."  Rarely could I remember the other words except "He makes me lie in green pastures." You just don't see much green in hospitals, or any other color for that matter. I envisioned vibrant greens swimming below bright skies of blue. Better days with laughter and tears, good and bad, and balance that I craved to have returned to my life.

Gary took the day of surgery off and returned to my side. He cuddled me as we waited for the surgical techs to come in their dusky green uniforms, masks and hair nets in place, looking like nothing I ever wanted to see again. The anesthesiologist greeted us in  Pre-Op and asked me how I was doing. I told him I was scared and he promised to take care of it. 

Surgery is a strange kind of nothingness. I was there one moment, then everything I anchored reality in life to disappeared as the drugs took affect. But waking up afterwards is a nightmare and waking from this surgery was worse than the 4 previous surgeries put together. As my clouded mind searched for consciousness, I saw Gary. But that pain from the surgery immediately demanded that I search again for the peace of sleep.

We were practiced at this and he knew when the surgical nurse brought medication, I would soon be back asleep. He kissed my forehead and told me he would see me again on the weekend. He and my brother Greg had decided that Greg would come to be with me the next day after work. I floated in a sea of pain, one time touching my abdomen and proving to myself that the surgeons had done the deed. A strange appliance, plastic and foreign, rested on my right hip. I thought I knew pain, but all the nurses could do to help was sedate me. I begged the doctors for an electrical stimulator called a TENS unit to distract me from the pain.

It arrived quickly and now I had a small measure of control over the pain. I could adjust the controls to the electrical pads along the incision. All my insides had been removed, inspected and dissected from the parts that had no muscle tone. It felt like all inside me had gone through a rock tumbler, but the polishing had not worked. My brother came by the next evening and tells me I beat him at Acey Duecy, but I could not even remember playing the game much less winning.

The next morning the surgeon stopped by with orders that I had to get up and get that barium out of my intestines. The nurses helped and I went to work as ordered. Slowly but surely, the barium began to come out. And unknowingly, my miracle began to manifest itself with every passing day. The nurses made me cough, get up to use the bathroom and even begin walking in the hallway, IV pole dragging behind. 

One morning the surgeon stopped in and asked me how I felt. "I am hungry," came my ready reply.

"Hungry?" he asked in disbelief.

"Yes, hungry!"

"I wouldn't let you eat yet if you were normal," he said dismissively.

Day after day, our interchange remained the same. My sister-in-law, Vicki, called and she asked me what I wanted to eat. I craved baked chicken and mashed potatoes.

"Don't you worry, Linny, I will make that for you as soon as you get out of the joint!" Vicki could always be counted on to make me laugh.

Greg strolled up and down the hallways with me in the evening, but Friday was the day I anticipated most. Gary would be there tonight after fighting his way north through the traffic.

After a week, the surgeon relented. "You can have some clear liquids, but take it easy will you?"

And so I did, but oh did those liquids taste so good. The nurse stopped in shortly after the tray  arrived. Proudly I showed her that the ileostomy was functioning and would need emptying soon.

It took two weeks post-surgical for me to come to realize the miracle the Lord had wrought in my life. The dreaded ileostomy provided the answer to my prayers, "Lord just let me eat, please." Challenges faced us still, but joy came through the very act of partaking of the table the Lord laid before me. And the very next visit to Tom and Vicki's house found a feast awaiting me of baked chicken and mashed potatoes.

Yes, I was hungry. Hungry to take up my life again and return to school for my BA in Communications. Hungry to renew my strength through studying taekwondo eventually earning my black belt. But most importantly hungry to embrace the miracle the Lord worked in my life and praise His Name endlessly.

The Lord is my shepherd and I shall not want. Thirty years of living with an ileostomy seems like the smallest of prices to pay for His Healing Touch.  

View a video of my story as I spoke it at CoffeeBreak in 2012 at

Video of the speech is available at:
http://vimeo.com/37084044
The password is:
theboot

 

Celebrating the Power of Prayer

By Linda Grupp Boutin

2 Corinthians 12:9 And he said to me, My grace is sufficient for you: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest on me.
 

Recently I sat on the examining table in my doctor's office when she said, "You are amazing." I did not know how to reply, but kept listening. She explained the comment to me and her words reminded me that it has nothing really to do with me, but everything to do with the miracle the Lord works in my life every day. I should not be able to eat or digest much of anything at all, but yet somehow God makes it all work. His designs are so intricate that we don't acknowledge the daily miracles happening in our bodies as we breathe, eat, live...we tend to forget until something breaks down. Then we beg Him to make it work right again.This post shares why I take joy in my infirmities because they draw me so much closer to My Creator.

So easy to take so many things for granted, but this summer has been a reminder to me of how very lucky I am. If you wonder why, I must say that I have been upheld by prayer for my whole life. Even when I struggled in my faith, abandoned belief and tried to ignore the Lord in my life, family and loved ones have prayed for me. Many times I have received the benefit of prayer asking for healing for the "terminal" disease I was diagnosed with in my early 20s. My Dad and many others in my family prayed daily for me to survive. And I know that these prayers have made a huge difference in my life.

But back to this summer, the reminders came with the stark reality of two 5-day hospitalizations and a series of tests confirming that the doctors have no explanation whatsoever how anything works in my digestion. All the tests, x-rays and imaging procedures confirm the original diagnosis--chronic idiopathic intestinal pseudo-obstruction. What does it mean? That my digestion can work backwards, too fast forwards, and freeze up altogether; a mighty painful process for me. It is in this weakness that the Lord and my faith in Him has been made strong.

Intestines are not designed to stop and go into paralysis ever. They are supposed to work smoothly propelling what we eat through the mouth, taking the elevator of the esophagus down to the stomach for digestion, through the small intestine where the nutrients we need to live are picked up by the bloodstream, then through the large intestine for water, electrolytes and minerals to be reabsorbed. It is an intricate process that when it works is easy to take for granted. This summer's particular challenge resided in my esophagus.

We are only reminded of all this when something goes wrong in the process. And things went pretty wrong for me in the summer of 1979 when I was just 24. That December my weight dropped from 145 to 86 pounds. I found myself in ICU fighting for my very life. My digestion had become paralyzed the previous June and despite trying to eat, I became severely malnourished with a huge belly full of undigested food. The San Diego doctors, stumped by my disease, sent me to UCLA for help. My stomach doctor had learned about an experimental program being used there that she hoped might help me. Prayers already being answered!

The UCLA cure was tough to live with, daily dependence for 12 hours on of a  machine feeding me directly into my bloodstream. If I ate food, I landed in the hospital. So my daily prayer became "Lord, please, just let me eat, please..."

No positive answer came for 7 long years, just keep praying and waiting and praying and waiting. The Lord molded me demonstrating where my priorities should be. A couple of years into the battle, two special new friends led me back to the Lord. I started attending church again and was baptized by immersion. I continued to pray and started studying taekwondo side by side with my husband. I learned that exercise not only helped me feel better, it also created artificial movement in my intestines that helped food move through more easily. And all that time, prayers continued to be sent aloft by my loved ones and church family and me. My walk with the Lord became stronger. But His plan still had a long way to unfold.

"Most gladly...glorify in my infirmities..." That is a really tough one and hard to accept. Yet today my friend, Coleene VanTilburg

Coleene and myself at AWF

sent me an Instant Message stating that I was in such a good mood last night at the Aspiring Writers' Forum (AWF). I replied that I was simply happy, joyous! I have learned so much through all these years of struggle. Maybe most importantly is to grab the moment and make the most of it. Working with other writers, I find my purpose and try to encourage them to Celebrate Their Voices. Speak boldly about the things that you have learned. Be generous with others and encourage each other through the good times and the tough times.

And never forget the power of prayer! My husband reminded me this very morning that prayer is so important and His answer can be "Yes" or "No" and sometimes "Wait." And it is in the waiting that I have found my purpose, my joy, and my love of the Lord!

Celebrating Pearl and Otto

By Linda Grupp Boutin

My parents' names were unusual to my ear as a child. They were both born in 1914, Mom on August 8th and Dad on May 7th. They both would have turned 100 this year had they grown to that venerable old age. However Mom returned to the Lord in 1976, aged 61, and Dad in 2001, aged 87. An even dozen of their children grew to be adults, but they lost one son and one daughter in infancy.

Otto and Pearl Grupp 1935

Mom told me the story of how she and Dad met at Crystal Beach. She was with her sister, Dorothy, and Dad was with his brother, John. The two brothers conspired, one choosing the blonde and one the brunette. Apparently they all spent the evening enjoying the theme park and the Grupp brothers drove the two sisters home in their truck. Mom skipped all the middle part, but always jumped to the end of the story. My grandfather had kept watch for his 2 daughters that night and saw them as they departed from the truck. She said that she and Aunt Dot were in big trouble when they arrived back inside.

Somehow my dad overcame this rough start with Grandpa Rohlmann and by Thanksgiving Day in 1936, Otto and Pearl were married. Because I am their tenth child, everything I know of those early days of my family I learned from someone else, many of the stories told to me by Mom. I have been collecting family stories for my whole life. Because my parents have a legacy of over one-hundred forty grandchildren, great-grandchildren and great-great grandchildren, I will share these stories on Celebrating Your Voice.

Bertha and Joseph Rohlmann, my grandparents

This post will share one of my favorite stories that Mom told me over and over. It is written from her perspective, so when "Dad" and "Mom" are mentioned below we're talking about her father and mother, my Grandpa and Grandma Rohlmann.

     Her parents named her Pearl.  Being the eldest of eight, she learned domestic skills early while her mother labored with the younger children.  Her mother suffered with too many pregnancies and the added demands of breast feeding.  Frequently her daughter covered for her because Pearl knew the depths of Mom’s illness.  She knew how to light the wood-burning stove, how to whip up a pie for dinner’s dessert, how to swing a cloth quickly enough to virtually chase the dust away before it landed.  And in her Dad’s eyes, she truly was "a pearl beyond price."

     Occasionally he took Pearl with him on his train trips.  Being a superintendent for the railway, he traveled every day for his job.  Early on she recognized the corn fields of Indiana from the smokestacks of Detroit.  It was an adventure leaving the station and guessing where they would go that day.  Always they returned home to St. Louis, crossing the Mississippi in the caboose behind the chugging steam engine.  When they returned, it was back to the heavy responsibility of being the oldest daughter in this large and growing family.

     Each day she worked her way through the early morning chores, daydreaming about arriving at school in time for Music class.  Pearl couldn’t sing and didn’t even attempt it, but her heart danced with the music in her head and she found time to study every instrument she could find.  There was the piano in the parlor and the banjo in Dad’s closet.  But when she went to school, she had access to drums, a guitar and an organ.  She might have arrived tardy at school each morning, finishing chores before starting studies, but she also stayed as late as she thought she could get away with.  Her slender hands lovingly caressed the drumsticks, fingers and feet flew in unison on the organ and although she loved the twang of the guitar, there was only so much time for practice.  Her teacher encouraged her and she often accompanied the choir on the organ.

     In the evening, her blue eyes flared as she assigned the dish cleaning to her younger sisters, while she went over to the piano to play.  She tossed her long blonde hair behind her slender shoulders sitting on the piano bench.  She felt grateful when her legs grew long enough to easily reach the pedals at the bottom of the instrument.  Before the time of television and with no radio in the house, she entertained the family with music after supper and lulled the babies to sleep.  She thought about the College of Music in Detroit she had seen from the train window and dreamt of studying, and maybe even teaching, there one day.  Pearl envisioned herself spending her life immersed in the music she loved and sharing it with others.

     One fall evening, Dad arrived home later than usual.  He poked his head in the back door and bellowed for the family to gather outside; he had something to show them.  He held an impeccable white handkerchief in his hand and rubbed it in circles on the bumper of the brand new Model T sitting outside the barn in the back. The leather seats were a creamy tan and he excitedly showed them all the details of the family’s new mode of transportation.  As soon as supper was complete, they all piled into the car which Dad cranked vigorously to ignite the engine. 

     Mom sat up front with the baby in her lap and Pearl squirmed straining to maintain her position beside the window.  Before they knew it, they were bumping down the rutted dirt road, engine chugging grandly and moving at a respectable 25 M.P.H.

     The following weekend everyone once again bundled into the vehicle and they set off to visit relatives who lived deep in the Ozarks.  They climbed the mountain roads built for wagons, not Model Ts, and found themselves surrounded by tall trees lining an increasingly difficult ascent.  Dad spotted a small mercantile along the road.  A large red and black sign advertised Coca-Cola and he pulled into the small space in front of the store. Mom instructed the children to stay in the car, that she and Dad would be right back.  “And all of you listen to Pearl. She’s in charge while we’re away.”

     Pearl glowed under her mother’s command, but nothing stopped Bud and Ray from jumping from the rumble seat into the front over their big sister’s protests.  They were examining everything, touching the smooth leather, testing the toot-toot of the horn.  Suddenly Pearl saw the forest begin to slide by ever so slowly.  Somehow now they were rolling down the hill.  Panicked, the children began crying, yelling for their parents to come and help. 

     Luckily Pearl had been a quick study and remembered the lessons Dad had shared about using the hand brake to stop the engine on the train from rolling.  She reached into the front seat and pulled the handle hard that she hoped would bring a halt to their swift rolling down the hill. The car was picking up speed, but as she pulled the handle she felt the tug of the brakes trying to slow down the car. She glanced up for a moment and saw a canyon fast approaching through the windshield. She pushed her brothers out of the way and jumped into the driver’s seat. Now she stepped on the foot brake with all her might. But though they slowed down a bit, she still saw the cliff looming ahead.
     She whispered a Hail Mary and prayed as she stomped with both feet one last time and heard the gravel grinding under the wheels as the nose of the Model T topped the edge of the cliff.  She heard her siblings howling around her, but had no idea of the commotion behind her at the storefront. Her parents stood slack-jawed staring at their brand new Model T barely hanging onto the edge of the cliff, all their children but the youngest sitting inside.  The majority of the Rohlmann clan sat in the Model T and only Pearl had the good sense to quietly breathe to her brothers and sisters, “Now, no one move one bit!”

     The fear-frozen adults sprang into action. The storekeeper grabbed a large coil of rope. Dad ran as fast as possible towards the car. Clamping his arms around the nearest rear wheel, he held on with all his strength. Other men arrived and tied one end of the rope to the rear axle and the other end to a large shade tree beside the store. They pulled in unison and soon had all 4 wheels back on solid ground. They accomplished this wordlessly until the car and the children inside were safe. Soon the shopkeeper’s wife passed out cold bottles of Coke all around and everyone laughed nervously telling silly jokes and regaining their collective breathes. “Going to have to install parking brakes on these old tin lizzies or they’ll all be taking off on their own!” Everyone guffawed together with a sense of pride in the team effort that had saved so much from the bottom of the cliff. There were still some kinks to be worked out in this new-fangled technology.