My Two Favorite, Opposite, Short Stories

mom at moodyTwo stories. One by my mother (on the right at college in the picture). The other by my son. Both well-written, with absolutely nothing else in common – except that they are both great fun to read. I hope you love them too. They would have made one creative writing team.

By Mom, Dorothy Cooley – from sometime in the ‘50s

One of the greatest blessings to me, years ago as a new student at MBI (Moody Bible Institute), and a comparatively new Christian was the challenge of the practical work assignments. One of the nurses approached me and told me of a young 14-year-old girl, Stephanie, who was dying from the effects of a malignant tumor. She was not in the ward, but had been moved into a room by herself. Both of her parents were with her.

 “She’s already received the last rights,” the nurse told me, “but she continually cries out both in pain and in fear. Please visit her. She has terrible nightmares because she is so afraid to die.”

 I prayed as I had never prayed before, and followed the nurse to her room. I had never yet led a soul to Christ. So many thoughts were rushing through my mind. What if her folks won’t let me speak to her? But there we were at the door.

 Both parents were seated by the window, looking so despondent. Stephanie was, of course, lying in bed, so thin, yet the area in which the tumor was located could clearly by seen as a large bulge under the bedspread.

 After asking the parents for permission to speak to their loved one about Christ, they quietly consulted together for a few moments and then decided it would be all right. Even though it has been many years, I still remember looking into the face of this frightened young girl who knew she didn’t have long to live and had such a fear of dying. The Lord, in His graciousness, used the verses that were quoted to Stephanie as it was explained to her very simply that the Lord Jesus Christ is the Way, the Truth, and the Life. That He loved her and had given His life for her and had risen with her in mind.

 As the question was put to her, “Won’t you trust in Him Who gave Himself for you as your own Savior?” Stephanie nodded yes. She could not speak. And as prayer was offered, I saw one pass from death unto life, from darkness to light. Her facial expression relaxed, and her eyes reflected an inner peace and trust in the Lord. She even attempted a smile.

 The visit was a very short one, and as the prayer was ended, the nurse returned, telling me it was time to leave. Saying goodbye to the parents and thanking them, I was able to tell them that the daughter they loved so much would, in the Lord’s time, be in heaven, and I was able to leave a gospel tract with them.

 The following week I literally rushed to her room – only to be told that Stephanie had passed away a few days before, and the nurse added, “After last week’s visit, she never cried out in fear again – she really seemed to be at peace.” As I rode back to school on the streetcar, many thoughts came to my mind. As a new Christian in Bible School I had met so many young people who seemed to have so many special talents that the Lord could use, a special ministry in music or in some other area, and I wondered why the Lord had led me there. So that afternoon the Lord taught me some very important lessons – He used His Word, through the power of the Holy Spirit, to bring a soul to Himself – and in His graciousness had allowed me to be an instrument. I did not need to wish I could do what some other young people could do – I just needed to let Him guide in the way in which He had planned for my life.

 Many times the Lord has brought the memory of that afternoon back to me, and reminded me of that lesson – for the message that we have to share is one for which there is absolutely no substitute – “But these are written that ye might believe that Jesus is the Christ, the Son of God, and that believing ye might have life through His name.” John 20:31

 

micah peniel-001By son, Micah Cooley, from sometime in 2018

 Frozen is a great analysis on how people with depression often push loved ones away, and how they often don’t know how to ask for help.

Tangled is a well written and nuanced look at toxic and abusive relationships between parents and children, as seen through the eyes of the victim.

Mulan is an excellent story that builds up a woman of conviction and character that doesn’t disrespect the authority placed over her, but defies it in order to be a positive change in the world.

Beauty and the Beast is about a woman who finds the beauty and love in pain, who strives to further her own education, and repeatedly saves her father.

Little Mermaid is about an idiot who wanted to make out with some dude who looks like the least attractive Jonas Brother.

What a stupid princess.

 

Would have been a dynamic writing duo, no?

New Book Cover and Back – coming out for Christmas 2018

BIZ XMas-Cover

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Groan

miracle-on-voodoo-mountain-wide-800x445Read through without groaning.

I can’t.

I was wondering, why would a single, white gal from the states move to the poorest country in the Western Hemisphere? It’s dangerous. It’s hot. It stinks.

You take one-step off the plane and you groan.

That’s the reason.

In Mk 7:31-37 Jesus is moved by a mans suffering, and groans.

Later in Mark 8:12 when the Pharisees refuse to believe, Jesus groans.

This is the same word used in Romans 8:22 when it says all creation groans under the curse.

We pray, “Thy Kingdom done, Thy will be done, on Earth as it is in Heaven.” God has given us the power to bring a taste of Heaven to Earth, but we will never be effective in that commission without heartfelt groanings. We have to hate the curse. And we have to want Heaven.

Last week we had Sue who lives in Port-au-Prince come stay with us. I asked why she moved to Haiti on Sunday. The answer?

Groanings.

The article below can help put it in perspective. It is from one of my favorite books, Miracle on Voodoo Mountain. It is writing by a 20-something-year-old gal who also moved to Haiti. I cut and pasted some sections of it below – in the hopes that it will get you to purchase it here.

Book Excerpt below [except brackets]

 Deye mon gen mon./ Behind the mountain, there are mountains.–A Haitian proverb

As I sat on the roof and watched the sun go down on my second day in Haiti, I ate another energy bar for dinner. I felt so very alone. Am I crazy? My friends are right. I must be crazy to leave such a great life in the States for a place like this. I don’t even know why I’m here. Oh Lord. Did I make a mistake? Should I just go back home?

 I needed to hear a familiar voice that night, so I made a quick decision to splurge on an expensive two-minute cell phone call to my mom. As soon as I heard her voice, the tears began to well up in my eyes.

“I’m fine, Mom.” I tried hard to keep my voice steady and to sound sure of myself even though I wasn’t. “It’s beautiful here.” As I got off the phone I repeated the same routine as the night before, except this time my sobs and sniffles drowned out the beating drums in the distance as I cried myself to sleep.

I awoke the next day to the same goat-chicken-pig-people sounds and knew if I stayed around the house again all day, I would implode with fear and anxiety. I ate my breakfast energy bar, dried up my tears, and looked at David, the roof boy….

I pointed to myself, then moved two fingers like legs walking uphill and pointed toward the front of the house to show him I wanted to walk to Bellevue Mountain. It was the only place I had a name for in Gressier, and since I had holed myself up in the house for two days, I thought it would be refreshing to get out.

“Okay,” David said with a smile. He got it! I smiled, too, with a little jolt of happiness at having a plan, if only a small one…. Tons of children waited for their turn at the community water pump right outside of my gate. I looked at my feet as we walked, avoiding the gaze of dozens of dark brown eyes on me. As we strolled down the street, people yelled at me in Creole, and children ran up and grabbed my hands and clothes.

I followed close behind as he led me down the uneven brown road. We stepped onto a narrow footpath with clumps of weeds and bushes dotting the sides. We walked through a group of long-horned cows with tiny ropes around their necks, grazing peacefully. The path wound between a few decrepit houses and down into a small valley through a leafy green mango grove where the soil was rich and dark. As the path began to curve upward, we climbed a steep hill and came through some bushes to the top. It was flat and green, and my eyes followed the path that cut through the grass until I saw it. There, just as I remembered, stood the tamarind tree. It was a rich dark green, about twenty feet tall, with a single sturdy trunk and strong, supple branches that curved gracefully down at the ends.

I waved toward the tree and the land around it and asked, “Bellevue Mountain?”

“Wi.”

 …The top of Bellevue Mountain is a beautiful place. A cow relaxed nearby on the lush green grass, and I could see beyond the edge of the mountain all the way out to the turquoise sea. I smiled and took a deep breath, staring off into the distance.

A movement caught my eye, and that’s when I first saw her–a little girl, maybe six or seven years old. She was wearing a raggedy, soiled, yellow tank top that was too big, hanging off one shoulder down to her thin elbow. It must have been a woman’s shirt, and she wore it as a dress.

She was barefoot with matted orange hair, and her bony figure screamed of malnutrition. I watched as she threw a rock at a blackbird.

I felt drawn to her. She was so little. What is she doing out here all alone? I remembered the girls I’d seen earlier that morning, walking to school. They each wore a uniform with their hair neatly braided and tied with bright ribbons. Why isn’t she in school?

 I got close enough to call out, “What are you doing?” I was sure she didn’t understand me, so I glanced at David, and he repeated my question in Creole…

The little girl answered back in Creole. “There are two blackbirds.” David turned toward me to translate… “Yes, I see them. But what are you doing?” I asked again.

As she rocketed off in Creole, I received another loose translation from David. “Throwing rocks at birds.”

“Yes, I see. But why?”

Her beautiful brown eyes widened as she looked up at me. “To eat!”

…Bernard arrived shortly after to help with translation; David had called him when we left the house. Bernard was fluent in Haitian Creole and English, which he’d learned from a group of deportees from Brooklyn.

A few moments later I saw an older woman walking up the mountain toward us. She spoke broken English and told me the little girl’s name was Michaelle (Mick-kay-ell). Then, in an emotionless voice, she explained, “Mother dead. No father. Nobody wants her.” She looked at me, then turned to Bernard and began explaining in Creole that no one wanted Michaelle, so she had taken her in. She called herself Michaelle’s aunt, even though they weren’t related.

…The woman continued, telling Bernard her house had been destroyed in the earthquake and she’d moved from outside of Port-au-Prince to Gressier several months ago. “No one wanted Michaelle, so I brought her here although I can hardly afford to feed her.” Bernard looked at me, his eyes sad as he translated.

“Does Michaelle go to school?” I asked.

“No, she can’t go to school. No money,” she said.

…Early the next day I found the path and climbed Bellevue Mountain again, following the woman’s instructions to find Michaelle in a big blue tent on the side of the mountain with the older woman, four other children, and several adults. The relationship this mishmash family shared was unclear and unsettling.

Michaelle was playing in front of the tent in the same ragged yellow dress she had worn the day before. When she saw me, she ran inside and changed into a blue-and-white princess dress costume with white shoes and ankle socks. Her excitement propelled her ahead of me down the path. I had to walk fast to keep up with her. As I followed her down the mountain, I wondered who she was and why she was living in such a strange situation. Is it because of the earthquake? How did her mom pass away? Why was she trying to eat a bird? Was she really that hungry? Why isn’t she being fed? And why was she wearing that old yellow rag when she had a cute dress to wear? I had lots of questions, and I wanted some answers.

A person’s a person, no matter how small. –Dr. Seuss

 “Non,” she shouted, clinging with all of her strength to the branches of a scrawny little bush in the mango grove. Michaelle was refusing to let go. It was a Sunday morning, and we were halfway up the path to the blue tent on the mountain where she lived. With tears streaming down her face, yelling and screaming hysterically, words poured out of her so fast I couldn’t understand even one syllable. I crept closer and sat down next to her in the dirt. When I got down on her level, I realized I didn’t have to understand any Haitian Creole to know what was going on. I didn’t need to understand a single word to see that her face was filled with fear, fear of returning to her tent. I was rocked by the waves of terror emanating from her tiny seven-year-old body.

My heart ached, and I felt anxiety rising inside because I knew I couldn’t really talk to her, even though I tried. In my most soothing and confident voice, I called her Micha (pronounced “Mee-ka,” my new nickname for her) and told her everything was going to be okay, but it didn’t seem to help. After a few minutes of feeling completely helpless I, too, burst into tears as I stared, transfixed, at her frail body shaking and plastered to the dusty bush. I’d never before felt so helpless, and I begged God to show me what to do. Why is this happening? Please! Tell me what to do, and I’ll do it.

 …Micha’s aunt and the others in the tent where she lived didn’t seem to love her. At least they didn’t show it when I was around. It was so confusing. Why is Micha so sad all the time? Why is she the one that seems to be doing all of the household chores and all the work? Why doesn’t she want to go back home? The questions and curiosity and confusion swirled around in my brain and wouldn’t stop. My stomach clenched, telling me there was something deeper happening and I needed to find out what it was. After the emotionally exhausting morning I wrenched open the front gate, crossed the front yard, and burst through the front door, frantic to find my cell phone. I needed answers, and I didn’t care how expensive the Internet data charges were going to be.

I turned on my cell phone and pulled up Google. Then I typed in the three words that would forever change my life: Haiti + child + servant.

 A word I’d never heard before popped up in big, black, bold letters: restavek.

I froze, staring at the word on my cell phone screen for a good five minutes before scrolling down. There is actually a name for this way of treating children in Haiti. My mind reeled in confusion. I didn’t want to believe it, but as I continued reading, my head felt as though it would explode with this horrific discovery. The word restavek (sometimes spelled with a c instead of a k) is translated “to stay with” and is a common arrangement in Haiti, where parents force a child to live with another family because they are very poor or because of parental death or illness. Sometimes it includes the child being sold, kidnapped, or borrowed for a period of time.

I read a statement by the United Nations, condemning the restavek system as a “modern form of slavery” where even young children are put to work as laborers and treated as less than human.1 The majority of these restaveks are girls between the ages of four and fifteen, and they are responsible for all of the cooking, cleaning, laundry, and fetching of water for their households. Additionally, restaveks often suffer severe abuse and are very rarely enrolled in school.

There was much more, but I’d seen enough, and I put down  my phone. The room felt as though it was spinning. “Micha,” I gasped. Like an overwhelming rush, everything started to make sense. This is why she wasn’t in school when I met her. This is why I always saw her carrying heavy buckets of water or washing clothes in a tub outside the tent or surrounded by endless piles of dirty dishes. This is why she sleeps under a table on cardboard.

 Like a slideshow, images from the last few weeks popped up in my head as I remembered the many young girls I’d seen around Gressier who seemed to be working constantly. I had wondered why they stared down at the ground, eyes glassy and sad, and shoulders drooping. It was all starting to make sense, and I knew I had just made a life-changing discovery; I was finally able to put a finger on the disturbing feeling that had crawled its way up into my heart every time I passed these children. It was as if I could see the darkness of the situation and the evil behind it. I realized what the Holy Spirit had been stirring up in me the past few weeks, and I felt as though the Lord was igniting a fire inside me.

Children’s faces, one after another, popped into my head as I realized that Bellevue Mountain and much of Gressier were full of restaveks in an epidemic of child slavery. It made me sick to my stomach that I had been walking around this community for the last few weeks, knowing that something was wrong, wanting to question the situation, but not knowing how to begin. And it made me even sicker to know that so many Haitians had accepted and participated in this form of slavery in their own country with their own people.

I couldn’t find any firm statistics, but organizations that had studied the situation estimated that 300,000 to 500,000 children in Haiti are restaveks. I couldn’t get my mind and heart around that number. I still can’t. I never will…

I knew cooking pots of beans and rice or singing songs with kids wasn’t going to be enough.

[Get the book here.

I get to go back to Haiti this summer. What a privilege.]

 Romans  8:26 (NLT)  The Holy Spirit helps us in our weakness. For example, we don’t know what God wants us to pray for. But the Holy Spirit prays for us with groanings that cannot be expressed in words.

 

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Does Youth Ministry Matter?

I started youth ministry at Camp Peniel. From there I went to church ministry. I still remember wondering what I had gotten into when someone in my first church gave me an article on the horrors of listening to Amy Grant.

Where do you go with that?

Fairly early on in church ministry I met Mark Matlock, who later became the President of Youth Specialties. He has a free book download you can get by clicking on the picture below.

It’s worth the price.

OK, more than that.

If your church is struggling with what to do with youth, how to fit them into the overall ministry, or control their obnoxious flirting,  this book can help. I’m not sure there is a cure for Amy Grant.

Kidding – still love Tennessee Christmas.

Dan

why-youth-ministry-really-matters_banner

http://markmatlock.com/why-youth-ministry-really-matters

Need a Kids Christmas Gift?

Need a kids Christmas gift? Here you go…

My Little Red Camper: The Good, the Bad, and the Ugly

The Good: The “My Little Red Adventure Books” series are my favorite books to read to my grandkids, well, to read to the one old enough to listen. This is the second book in that series. With Leanna’s writing and Jose’s drawings, there is little not to love. The drawings have a cool retro look. I believe the stories are from Leanna’s childhood. So I suppose the artwork may simply accurate for the time… depending on Leanna’s age…

The Bad: This book takes you back to camping with your kids. It made me wish I’d spent more time doing just that, but also glad for the trips we did take.

The Ugly: My Little Red Camper may have the result of taking a chunk out of our budget. After reading it to our grandkids again and again, I became nostalgic for… Not the camper, which really is cool, but the blue pickup truck pulling it. Jose nailed it. I think it’s time to grab a kid and go old-truck hunting.

So – it’s a book for kids, parents, and old grandparents like myself. Just stay away from the craigslist truck and camper ads after reading it.

LOVE This Book!

0714171121eThis just came in, so daughter Amanda is reading it to grandson Oliver. I got to help with a bit of editing on this book — my favorite by Leanna. The graphic artist and illustrator are the same as for Bizarre Bible Stories 2!, and they did a terrific job on this one.  OK, maybe the pictures are what makes it my favorite. Here is the endorsement I wrote for the back.

Reading My Little Red Jalopy was a delight, bringing me back to summer days as a kid, with school far away and a drooling dog in my lap. The ingredients are simple. An imaginative writer inspired by the common joys of kid life, coupled with outstanding artwork. The result is true reading indulgence. Like all truly great Children’s books, I enjoy it as much as my grandkids.

Dan Cooley

Author, Bizarre Bible Stories

Sure Hope This Is Legal

J Cole Article Published in Stanford Journal for Public Health_Page_1.jpg

My friend Cole Holderman is at Stanford – and was published in The Stanford Journal of Public Health for this very personal article on siblings dealing with childhood cancer. It is an amazing combination of good research and personal experience. I downloaded the article, converted it to a word doc, and pasted it below, so i hope Stanford doesn’t care. The pictured didn’t convert. Mostly, I hope this helps us do a better job caring for others in the future. Here we go…

 

Their New Normal: How We Can Help Siblings Thrive in the World of Pediatric Mortality

Jacob C. Holderman

Since the time paper was first written, my brother has passed away of complications related to pneumonia. Macen Clay Holderman passed away at 2:45 p.m. on the 27th of September.

My Brother Macen

My brother Macen was always a bit of a whiner, so nobody thought anything of it when he started com- plainingaboutapaininhislegtheearlywinterof 2014. It was probably just an excuse to skip soccer and play more Call of Duty with friends. Sure, this excuse had lasted a bit longer than others, but we reasoned his of- ten complained about “growing pains” were nothing to worry about. After he had been limping for about a month, my concerned parents finally decided that this pain might be something more serious, perhaps a tornligament.Theirconcernturnedouttobejustified.

Macen was diagnosed with osteosarcoma, an ag- gressive form of bone cancer, on April 15th of 2014 at Denver Children’s Hospital in Colorado. At the point of diagnosis, the cancerous, bony tumors, which originally started in the left knee, had spread to my brother’s lungs, and though his doctors saw little rea- son to quote what they referred to as ‘meaningless statistics,’ I looked up the survival rate for metastic osteosarcoma on St. Jude’s Research Hospital’s web- site. His diagnosis carried about a 30% survival rate at 5 years (St. Jude, 1). The doctors at Denver Chil- dren’s explained that my brother and our family had a rough fight ahead of us. Treatments for my brother would involve five different types of chemotherapy, a modified amputation of his left leg known as a ro- tationplasty, a lung surgery known as a lobectomy, and an intermittent trip of almost 500 miles between Denver Children’s (where surgeries and new treat- ments would be performed) and our home in Albu- querque, New Mexico. Despite these challenges, my brother’s medical team was confident in Macen’s strength,  and  his  ability  to  overcome  this  disease.

Treatment  was  hard  on  both  my  brother  and  the

 

My brother Macen Clay Holderman, driving his Jeep using a modified sling to hold his leg up.

rest of our family. Through the next two years we would work to stay strong despite the constant fear, stress, and anxiety that my brother’s disease caused all of us. In the autumn of that year my brother had a rotationplasty performed to remove a tumor, and just a few months later Macen had two lobes of his lungs (and about 60 tumors) removed by surgeons in Denver. During treatment, my brother lost all of his hair, became increasingly weak and sick, and completely changed in personality. Some days, he was braver, stronger, and more compassionate than anyone else I have ever known. Other days he was reclusive and petulant, clearly exhausted by the te- dious and painful treatments he  was  undergoing. For my part I began to drift away from my family, and

 

 

 

51   EXPERIENCE

 

the better part of my senior year of high school was spent hiding away from my home in coffee shops, pretending my constant studying wasn’t some coping mechanism designed to hide my anxiety and growing dread from my siblings and parents.

The Weight of Childhood Death

A professional photograph of my family, taken right before my brother began treatment for osteosarcoma.

 

The story of Macen and the rest of my family is far from unique. From genetic disorders to aggressive cancers, terminal pediatric illnesses and high mor- tality diseases affect thousands of children and their families every year. The CDC’s“National Vital Statistics Report” lists “congenital malformations, deforma- tions and chromosomal abnormalities” as a leading cause of death for children under the age of 5, and childhood cancer as a leading cause of death for chil- dren between the ages of 5-18 (Xu, et al). For many of these diseases, curative treatments are not available, and patients have no or very little hope of recovery. Watching as a sibling or child suffers through these diseases and coming to terms with the fact that this loved one will likely die is a shattering and traumatic process. Terminal pediatric illnesses often leave many families unable to cope with the loss as siblings lose one of the closest emotional connections of their ear- ly lives and parents risk losing “basic aspects of a par- ent’s identity” (Edelstein qtd. in Buckle and Fleming, 1). Furthermore, parents may be unable to care com- petentlyfortheirotherchildren, furtherincreasingthe burden on siblings of children with pediatric diseases.

What set my family’s story apart during my brother’s struggle with cancer was the immense support and care that we received from our church and local com- munities. Through a network of friends, churches, and relatives we received prayers, fundraising, and support from  literally  thousands  of  people.  When a difficult treatment period arose, our church orga- nized meals to be brought to our house. When my brother had trouble with stairs after his rotation- plasty, friends helped to build a bedroom  on  the first floor of our two-story house. When the family had to travel yet again to Denver, people donated us their spare airline miles and extra tickets. The outpouring of concrete support  to  my  family  was an amazing and constant wellspring of hope that pushed us through tough times, especially keeping my parents going as they fought for their son’s life.

Though, in general, support is available for most fam- ilies dealing with high risk pediatric diseases, issues of the family are often rightfully dwarfed by weight of the patient’s own trauma. From groups of fami- lies struggling with similar illnesses I’ve learned that, while not unheard of, the level of support my fam- ily received from the point of my brother’s diagno- sis onward is quite rare. Many families do not have the strong communities that my family relied on, a deficiency that can be quite damaging to families dealing with and recovering from pediatric illness. In the book, Family-Centered Psychosocial Care in Pe- diatric Oncology, authors and clinicians Lory Weiner and Maryland Pao discuss both the importance of the family in pediatric care and the lack of support often given to families in these critical situations. They argue that family members, especially siblings, experience many of the same psychological reac- tions to a cancer diagnosis as the patient does, and therefore need support for these symptoms (Weiner and Pao, 1). However, the current support for fami- lies dealing with high risk pediatric illness is generally insufficient for allowing families to heal, recover, and eventually thrive in the wake of devastating illnesses and the loss of a child. Distancing of families from support structures, a lack of consensus on therapies for family recovery, and the high visibility of the pa- tient’s illness all culminate to negatively impact fami- lies experiencing the death of a child. To better serve these families, effective strategies for helping them

 

 

 

EXPERIENCE   52

 

 

A collage of people supporting my brother. Many of them are wearing T-shirts saying “Praying for Macen.”

 

 

through their grief need to be  developed, agreed   upon,   refined,   and   put   into   practice.

Anticipatory Grieving

In findingthebestwaystoguidefamiliesthroughtheir grief, it is helpful to delineate the pattern that griev- ing for a terminally ill loved one typically follows. In her book, When a Brother or Sister Dies Clair Berman, herself a survivor of the death of a sibling, summariz- es the process of grieving as experienced by children she has interviewed. “They grieve when they learn of the condition, they grieve as the illness progresses and when the patient regresses they grieve anew when death claims its victim.” (31) Berman delineates here the difference between the grieving that hap- pens before the death of a patient and the grieving

that follows that death. In what she calls “anticipa- tory grieving,” Berman states that siblings and other family members “live in the shadow of death,” (32) constantly “bargaining” (32) for more time with their loved one while simultaneously and subconsciously making attempts to distance themselves from their loved one. These reactions to terminal illness present barriers to families trying to make the most of their remaining time with the patient, as well as to the ability of families to remain stable in the face of their loved one’s disease. These challenges include siblings’ inability to appreciate their own problems in light of the overwhelming “world of war” and “medical crisis” that is overtaking the lives of their brother or sister. As one surviving sibling remarked, the everyday, normal

 

 

 

53   EXPERIENCE

 

struggles of her life were“just not up there on the list of priorities” (Berman, 34). As parents, extended fam- ily, and friends cluster around the affected child, sib- lings can feel increasingly marginalized, with serious deleterious effects to their academics, health, and their relationship with their siblings. With regards to academics, a study by Barbara L. Wolfe of the Univer- sity of Wisconsin-Madison titled “School Outcomes of Chronically Ill Children and Their Siblings: A Mul- tivariate Approach” found that, among other things, children with chronically ill siblings saw reductions in metrics like attendance, test scores, and even IQ over the course of their sibling’s illness (Wolfe, 6). The report hypothesizes that these effects are due to the reduced attention afforded to these children by their parents, who become more concerned about the illness their other child is battling (Wolfe, 11).

As someone who is currently experiencing the fall- out of a terminally-ill sibling, and after reviewing in- terviews of many in the same position, it seems that almost nothing besides cursory grief counseling is being done to alleviate the effects that a terminal- ly-ill child has on their siblings during the illness. Claire Berman recommends that extended family and close friends take time to discuss with siblings of terminally-ill patients the problems that they are going through, instead of the status of their brother or sister (35). She also advocates guiding children in developing identities outside of being a  sibling  to the dying child, such as recognizing their talents, or future aspirations. These social interventions could be suggested by medical care staff,  religious  lead- ers, or grief counselors, and when paired with tradi- tional grief counseling (usually discussions about the process of grieving and the deceased) these mea- sures could be simple and  effective  ways  of  guid- ing these children through the loss of their siblings.

A further supplement in assisting siblings of termi- nally ill children during their brother or sister’s illness is to provide financial or logistical help to parents of these children. Worries about planning trips to hos- pitals, family finances, and even things like cooking and cleaning can distract parents from taking proper care of their unaffected children. Organizations like the American Cancer Association, Relay for Life, and small community organizations such as local church- es all currently offer these services. Along with this,

options for respite care, professional care of an ill- patient that provides temporary respite for the pri- mary caregiver, are both useful in allowing parents to spend time with their other children, and are provided by many non-profit  and government organizations.

Cancer’s Reemergence

My brother had a lobectomy on the 14th of August, 2014, removing 65 tumors  from  his  lungs. Though he was theoretically free of cancer at this point, he was kept on chemotherapy until March 18th to kill any small cancer cells that had managed to escape detection. After his treatment had ended, bone scans revealed that my brother was free from can- cer, and we celebrated his new designation as be- ing NED (a patient with No Evidence of the Disease). Although  Osteosarcoma  often  comes  back  after this designation is given, we were hopeful that Ma- cen’s battle with cancer was over, and we looked forward to his reintegration into school, and his continually growing proficiency with his prosthetic.

The return to normalcy, however, was not long lived. On December 6th, 2015, a little over a year from his lung surgery, a routine scan found four masses in my brother’s lungs. He quickly had the tumors removed in another lung surgery similar to the first, and was start- edonaclinicaltrialusingimmunotherapytoattackhis tumors. After another bone scan showed continued growth of his tumors, my brother was removed from the trial. He is now undergoing chemotherapy and radiation therapy for tumors in his spine, arm, liver, and lungs. Although we remain hopeful for his recov- ery, the treatments remain effective, and his doctors have not classified him as terminal, I remain aware of the ever-growing odds against my brother’s survival. When       to       Hope,       and      When       to       Plan

Asachild’sillnessprogressesinseverity,theissuearises as to the degree to which hope should be encouraged in parents and siblings. Hope is an important rallying tool, andhopefor“beatingthedisease”canbringgreat strength to patients, care staff, and the family unit. However, unreasonable hope can prevent parents, caregivers, and siblings, for preparing properly, emo- tionally and logistically, for the worst-case scenario.

I currently face a similar dilemma with my brother Macen.  There  is  no  curative  treatment  option  for

 

 

 

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the extent to which his disease has  manifested, and it is likely he will not live another five years. Though his illness is  not  terminal,  and  my  fam- ily continues to keep hope alive, I constantly won- der if it is the right time is to prepare myself for the worst, while simultaneously feeling fully the guilt of being unable to see his healing as a possibility.

This sentiment is echoed in the interactive piece That Dragon, Cancer a first-person  exploration  of the struggle of creators Ryan and Amy Green expe- rienced as their son Joel struggled with, and eventu- ally died from terminal brain cancer. Like my family, the Greens were and are deeply religious Christians, and like my family, they drew hope and comfort from their religious beliefs. Ryan and Amy faced a dis- agreement in facing Joel’s disease; Amy held hope until the end of Joel’s life that he would delivered miraculous healing by  God,  while  Ryan  demanded to feel fully the impending death of his child with- out the softening of groundless hope. While both parents maintained the overall hope that their son Joel would continue on to a better place in heav- en (a belief that I happen to share about my own brother) which certainly brought a measure of com- fort, Ryan rejected the tenuous hope for miracles in favor of dealing directly with the emotions of loss, whereas Amy clung to hope for healing  as  a  sup- port in Joel’s last days. The work as a whole acutely brings into perspective the ability for such hope to lend strength to families in times of need, and solid- ify a family narrative around a theme of hope, even while coming to terms with impending destruction.

Support for hope as a coping mechanism has been echoed in the medical community. The American Academy of Pediatric Practices official guidelines on Palliative care, outlined in the journal piece“Palliative Care for Children,” suggest that “continued hope for a cure, no matter how unlikely, may be an important coping mechanism” for parents and siblings dealing with pediatric terminal illness.1 Both Claire Berman in her book Losing a Brother or Sister and Jennifer Buckle and Stephen J. Fleming in their book Parent- ing After the Death of Child cite beliefs about the af- terlife and religious beliefs in general as useful tools in dealing with the after effects of death. Generally, it seems that hopeful outlooks on the fates of deceased children should be encouraged, though there is not

enough evidence to ascertain whether it is helpful for parents to hold out continued hope for miraculous healing regardless of the odds of their child’s recovery.

Grieving After Death

Arguable the most acute stage of grieving for a loved one is in the days and weeks directly after they have died. Family members, especially siblings of the de- ceased, can be aimless, emotionally unstable, and afraid for their own safety in the conclusion of a pe- diatric terminal illness. As an article from the National Child Traumatic Stress Network points out, children in these situations can even show reactions not eas- ily recognizable as grief.“For example, a quiet toddler may have more tantrums, an active child may lose in- terest in things he or she used to do, or a studious teen may engage in risky behavior.” In addition to these personality disturbances, children may also develop a more intense reaction known as Childhood Trau- matic Grief, defined by a pilot study as“A condition in which trauma symptoms impinge on the child’s abil- ity to successfully address the normal tasks of griev- ing” (Cohen, 1). Though this disorder is not Post Trau- matic Stress disorder, it does carry many of the same symptoms including, “reliving aspects of the person’s death,”“avoiding reminders of the death or of the per- son who died,” and “increased arousal and anxiety.”

Though feeling saddened and temporarily depressed by the loss of a loved one is normal in childhood, many children and teens do not have the ability to mentally or emotionally process the death of a sibling, especial- ly as a result of terminal disease. If left unaddressed, problems resulting from this bereavement and Child- hood Traumatic Grief can lead to children disassoci- ating from their families, leaving communities that previously had offered them support,  or  becom- ing emotionally stunted as they grow to adulthood.

Currently most sibling grief after  pediatric  termi- nal illness is considered normal unless some visible problem manifests. When a sibling’s grief is recog- nized as problematic, interventions of traditional psychotherapy, such as mindfulness-based cognitive behavior therapy, are used to address problems of behavior, though often times other issues are written off or left untreated. Pilot studies, like the one con- ducted by researcher J. A. Cohens, have shown great

 

 

 

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success using cognitive behavior therapy coupled with joint therapy sessions. These therapies involve both parents and their children, and can lead to sig- nificant improvement in the symptoms of childhood traumatic grief, as well as improvement in symptoms of anxiety and depression also present. In addition to these therapies, organizations like the National Child Traumatic Stress network recommend that parents talk often to their children about the deceased sib- ling, and monitor them carefully for the signs of Child- hood Traumatic Grief mentioned above. It should be noted, as Jennifer Buckle and Steven J. Fleming write in their book Parenting after the Death of a Child, that parents may also enter a “numb survival” after the death of a child that can make this form of sup- port difficult or impossible for them to provide (35). Monitoring the psychological health of the parents following the death of a child is also imperative to the health of their children. The number of siblings treated after the death of a child for Childhood Trau- matic Grief must be expanded as caregivers, commu- nity members, and hospital staff become trained in better recognizing its symptoms, and more research needs to be done into the efficacies of certain psy- chological treatments in alleviating the symptoms of this disorder. Looking Forward and Moving on

After the initial pangs of loss set in following the death of a sibling, the greater challenge faced by survivors is learning to live without their brother or sister, but while keeping present their memory and legacy. In the aftermath of the death of a child, the entire struc- ture of the family unit is tested. Roles that were filled by a departed sibling may fall to another child or be discarded (102-103 Buckle). Parents and siblings alike may feel that the deceased is being forgotten, or left behind by the family. This feeling of losing a connec- tion with the deceased must be metered with a real and urgent need to move out of the shadow of grief and onward into life. At one extreme a family loses its identity as it tries to forget about the lost child, and at the other a family remains paralyzed by fear and loss, threatening the autonomy and function of the parents, and the emotional development of the sib- lings. Families must strike a healthy balance between these two poles to successfully overcome their grief.

Siblings themselves face a number of unique prob- lems in the wake of losing their brother or sister. As

noted in the article from the National Child Traumatic Stress Network, siblingscanface“survivor’sguiltabout being alive,” intense regrets about things they did or said to the deceased child, doubts about worldviews, and even personal and irrational blame for the death of their brother or sister. Moving forward children also must reformat their identity, both moving away from association with the deceased, and incorporat- ing ideals and images that their sibling represented.

Inthebook, Parentingafterthe Deathofa Child, Jenni- fer L. Buckle and Stephen J. Fleming argue that “pick- ing up the pieces of the family requires regenerating the relationship with the deceased child in new terms” rather than simply moving on from it. Claire Berman, author of the book When a Brother or Sister Dies, sim- ilarly advocates that siblings and parents find ways to carry on the legacy of the deceased, such as orga- nizing blood drives, scholarships, or charities in the name of their departed loved one (114). Berman also advises that families hold onto their deceased loved ones by making scrapbooks, mementos, and other “tangible connections” (113). In all Berman views the role of the mourning family not so much as to func- tion without the deceased, but rather to incorporate the deceased’s goals and memory into their own lives.

As a society, we need to provide the guidance and re- sources children and families need to regenerate their relationships with the deceased. Grief counselors, medical staff, and community leaders need to incor- porate remembrance ceremonies and guidance re- gardinglegacyworkinthenameofthedeceasedchild into the outreach they provide siblings and families, turning a tragedy into a lasting legacy that can keep the memory of the deceased child alive, and the rela- tionship between the family and the deceased intact.

Bringing it Home

The question of how to revive  a  family  following the death of a child is one that has been with hu- manity since before we were human. The family is the strongest unit of social cohesion, and while this lends it resiliency, it also means that its failures can impact each of the individual members of the fam- ily in a very serious way. For many, especially as we grow up, family forms the base unit of our identity, a constant place of love and security when it seems all

 

 

 

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the world is a dangerous place, and because of that, death intrudes on the family in a way nothing else can. The death of a sibling shatters assumptions of belief, safety, and prosperity. It is an all-out assault on the identity of the sibling, on the identity of the par- ent, and on the idea that “everything will be all right.”

As a society and as a community, we owe it to our- selves and to each other to provide guidance and support through adversity as shattering as that pro- vided by pediatric terminal illness. Those in the clergy and in other positions of leadership in the community have the duty to rally physical and emotional support to families in danger of collapse from these threats. Members of the medical community have a commit-

ment to the health and wellbeing of their patients, and a duty towards monitoring and guiding the fam- ilies of their patients comes with that commitment. Psychologists and counselors have a duty to listen to parents and siblings struggling with the grief before, during, and after the death of a child as well as a duty to provide guidance to those attempting to resolve the connections to their lost loved ones. As a society, as a larger family, we must provide the scaffolding and structure parents and siblings need to restruc- ture, regenerate, and reform their lives in the wake of the pediatric illness. We must enable them to live.

 

 

 

References

American Academy of Pediatric Practice. “Palliative Care for Children.” Pediatrics 106.2 (2000): 351-357. Print.

 

Berman, Clair. When a Brother or Sister Dies. Westport, CT: Praeger, 2009. Print. Buckle, Jennifer L. and Stephen J. Fleming. Parenting After the Death of a Child: A Practitioner’s Guide. New York: Taylor & Francis Group, 2011. Print.

 

Cohen JA, Mannarino AP, Deblinger E (2006) Treating Trauma and Traumatic Grief in Children and Adolescents. New York, NY: Guilford Press. Print.

 

Kim, Jew. The Holderman Family. 2014.  Albuquerque, New Mexico. Digital Photograph

 

National Child Traumatic Stress Network Child Traumatic Grief Committee. (2009). Sibling Loss Fact Sheet Sibling Death and Childhood Traumatic Grief: Information for Families.   Los Angeles, CA & Durham, NC: National Center for Child Traumatic Stress. Web. 5 June, 2016. http://nctsn.org/nctsn_assets/ pdfs/Sibling_Loss_Final.pdf

 

Osteosarcoma. Jude Children’s Research Hospital, 2016. Web. 4 Apr. 2008. https://www.stjude.org/osteosarcoma.

That Dragon, Cancer. Numinous Games. 2016. Print.

 

Weiner, Lori and Maryland Pao. Comprehensive and Family-Centered Psycho- social Care in Pediatric Oncology: Integration of Clinical Practice and Research. Chichester, UK: John Wiley and Sons, 2012. Wiley Online Library. Web. 12 May 2016

 

Wolfe, Barbara L. School Outcomes of Chronically Ill Children and their Siblings: A Multivariate Approach. Stanford, CA: School of Education, Stanford University. Print. B1-B6.

 

Xu, Jiaquan, et al. Centers for Disease Control and Prevention. National Vital Statics Report Deaths: Final Data for 2013. Hyattsville, MD: U.S. Department of Health and Human Services. February 16, 2016. Web. 12 May 2016. http://www.cdc.gov/nchs/data/nvsr/nvsr64/nvsr64_02.pdf

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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The Silver Chair

silver-chair-theThe Good, the Bad, and the Ugly.

The Good Quote: I asked my Dad once if he ever wondered if the Bible was fake. His answer went something like this, “Yes. But whenever I have I look back at my life, I have absolutely no regrets for where I have followed the Bible, and seem to always regret where I have wandered away from it. So, I would live by that book even if I thought it was all made up. But, that of course keeps me from believing it is all made up.”

In The Silver Chair, the Green Witch had convinced the kids that what they remembered of Aslan and Narnia was all a dream, that her underworld was all that was real. So similar to living here, where any mention of Heaven seems to be an escape from reality, where our world seems to be all there is. Puddleglum’s answer to the Green Witch was similar to my dad’s response to me.

“One word. All you’ve been saying is quite right, I shouldn’t wonder. . . But there is one more thing to be said, even so. Suppose we have only dreamed, or made up, all these things—trees and grass and sun and moon and stars and Aslan himself. Suppose we have. Then all I can say is that, in that case, the made-up things seem a good deal more important than the real ones. Suppose this black pit of a kingdom of your is the only world. Well, it strikes me as a pretty poor one. And that’s a funny thing, when you come to think of it. We’re just babies making up a game, if you’re right. But four babies playing a game can make a play-world which licks your real world hollow. That’s why I’m going to stand by the play-world. I’m on Aslan’s side even if there isn’t any Aslan to lead it.”

The Bad: This is CS Lewis. He doesn’t write bad. But could he dance like John Belushi? I hope not. A man shouldn’t be good at everything.

The Ugly: Puddleglum. The way Lewis describes him, he is super cool, but flat ugly.

Sooooo….Basically, I’m Right: The Good, the Bad, and the Ugly

SoooooThe Good: The subtitle for the book is, How I Didn’t Allow a Disease to Defeat My Spirit. That is SO the book. It’s full of terrific stories about bees, the Tooth Ninja, and even planting plants upside-down. Only someone who has lived with the continual pain of Lyme disease can simultaneously convey the feelings of hopelessness and hope, of sadness and humor. I recommend this book for anyone who needs a good laugh, as well as for everyone who believes life is bad enough to give up. Reading it is like sitting in Starbucks with a close friend who is encouraging you through their pain.

The Bad: I think the backstory is in the wrong place. The book doesn’t start with a bang, and it could. If any of the middle crazy chapters were put at the beginning, it would suck you in. It’s also important because chapter one is what comes up on Amazon when you click on the book. Starting with explaining the title and backstory may have hurt sales. Once you hit chapter three, you can’t set it down until finished. So Emilee, if you are listening, swap chapter 3 or 4 or 5 or 6 with chapter 1, and then you can retire on your earnings.

Just remember me.

The Ugly. Lyme disease is way uglier than I realized. To keep going is one thing, to keep going with an undefeated spirit, that is cool. Well done Emilee!

 

 

The Voyage of the Dawn Treader

dawn-treaderI have a good friend who claims this is the best book in the Chronicles of Narnia series. I like her anyway. She is SO wrong.

The Good Quote: There were parts to love– the dragon, dufflepuds, stopping the slave trade– in spite of this being the worst book in the best book series ever. I suppose my favorite part would be when t he ship was heading into nothing but blackness. Everyone wanted to turn around–the captain of the ship, the King, and even previous King Edmund. But then obnoxious Reepicheep the obnoxious mouse spoke up.

“‘And why not?’ he said. ‘Will someone explain to me why not.’

No one was anxious to explain, so Reepicheep continued:

‘If I were addressing peasants or slaves,’ he said, ‘I might suppose that this suggestion proceeded from cowardice. But I hope it will never be told in Narnia that a company of noble and royal persons in the flower of their age turned tail because they were afraid of the dark.’

‘But what manner of use would it be plowing through that blackness?’ asked Darinian.

‘Use?’ replied Reepicheep. ‘Use, Captain? If by use you mean filling our bellies or our purses, I confess it will be no use at all. So far as I know we did not set sail to look for things useful but to seek honor and adventure. And here is as great an adventure as ever I heard of.'”

The moral? Don’t bring talking mice on trips.

The Bad: This is CS Lewis. He doesn’t write bad. But did he know how to adjust the valves on his car? I’m guessing not, and that makes me feel good. A man shouldn’t be good at everything.

The Ugly: Eustace Scrubb. Where did he dream up that name?

 

Prince Caspian

prince-caspianThe Good Quote: There were two parts of this book I really liked.

1: When back in Narnia they found that some of the animals weren’t good, talking animals anymore, like they had been in previous trips. Instead, some had gone wild, and it was hard to know if an animal wanted to talk to you – or kill you. Then Lucy said, “Wouldn’t it be dreadful if some day in our own world, at home, men started going wild inside, like the animals here, and still looked like men, so that you’d never know which were which?”

Good question.

2: Not long later Lucy can see Aslan the Lion, but the rest of her company can’t see Him. Aslan lets Lucy know they needed to go a different direction, but the company can’t see Him, and they disagree. It just isn’t the logical, safe way to go. So, they take a vote, and Lucy loses. Of course, their direction almost gets them killed, they change direction and Lucy gets to see Aslan again. That’s when things take a surprising turn.

“For a long time she was so happy that she did not want to speak. But Aslan spoke. ‘Lucy,’ he said, ‘we must not lie here for long. You have work in hand, and much time has been lost today.’

‘Yes, wasn’t it a shame?’ said Lucy. ‘I saw you all right. They wouldn’t believe me. They’re all so—‘

From somewhere deep inside Aslan’s body there came the faintest suggestion of a growl.

‘I’m sorry,’ said Lucy, who understood some of his moods. ‘I didn’t mean to start slanging the others. But it wasn’t’ my fault anyway, was it?’

The Lion looked straight into her eyes.

‘Oh Aslan,’ said Lucy. ‘You don’t mean it was? How could I–I couldn’t have left the others and come up to you all alone, how could I? Don’t look at me like that . . . oh well, I suppose I could. Yes, and it wouldn’t have been alone, I know, not if I was with you. But what would have been the good?’

Aslan said nothing.”

The illustrations of following Christ throughout the series are remarkable. Love it.

The Bad: This is CS Lewis. He doesn’t write bad. But did he know how to quilt, or sweat copper pipe when he had a leak under the sink? I’m guessing not, and that makes me feel good. A man shouldn’t be good at everything.

The Ugly: The truth at the  end of the above quote. It goes on to say,

‘” You mean,m’ said Lucy rather faintly, ‘that it would have turned out all right–somehow? But how? Please, Aslan! Am I not to know?’

To know what would have happened, child?’ said Aslan. ‘No. Nobody is every told that.’

‘Oh dear,’ said Lucy.

‘But anyone can find out what will happen,’ said Aslan.”

And that is the beautiful truth.