Wise Men and a Sister

My sister wrote the poem below about the wise men, such a fun kids poem I had to publish it. OH, she is also the girl in the picture, with my brother David and our parents, when they were living in France, before I was. She is a bit older now.  So am I.

Wise Men

They plodded along between high camel humps
with food, clothes, and blankets rolled up into lumps.
Gold, myrrh, and frankincense jarred with each bump
as they twisted through mountains with bushes in clumps.

They lumbered along sitting high on the backs
of the beasts they were guiding and keeping on track.
Over-excited, they could not relax.
They were searching for Someone and would not turn back.

The light that first startled them was quite a sight.
It grew bigger and brighter than comets that night.
It must be a prophecy, what a delight!
It must be a new king. Those Wise Men were right.

They stopped at King Herod’s place, causing a stare.
Their questions upset him. He stifled a glare.
The Jews have a new king? You must find out WHERE!
In Bethlehem was the child. Wise Men went there.

Oh, how they honored Him. Oh how they praised.
And the joy that surrounded them lasted for days.
It lasted for years and it won’t go away.
Just listen to carolers singing today!

Janice Cooley Jones


Christmas: A Declaration of War

3 Christmas War Quotes from the Advent reading today. At church we gave away the Christianity Today Advent book, this one was written by Russell Moore. Excellent, but you be the judge…

He is bringing the story into focus from that first prophecy, when God tells the serpent after Adam and Eve eat the fruit; Ge 3:15 (ESV)  I will put enmity between you and the woman, and between your offspring and her offspring; he shall bruise your head, and you shall bruise his heel.”


1: The Virgin Birth is not simply a sweet Christmas story. . . The Virgin Birth is scary, because if we understand what is going on here, we will see that in the uterus of this little Nazarene virgin girl, God is declaring war.

2: God is saying to you exactly what God said in the Virgin Birth to the entire human race: You cannot fix this.

3: Perhaps what all of us need this holiday season is to cry out with gratitude to a God who fought our Enemy for us. Perhaps we need to say, “All I want for Christmas is a crushed snake skull.” That is the gospel.


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.

Why Doesn’t God Heal the Right People?

steve lacy b,w

I know, I need to accept that God knows what He is doing, and I don’t. Somehow that explanation always seemed too simple to me.

Until now.

Ann Voskamp has written a terrific blog on the topic – the best I’ve read.  THIS IS GOOD. I couldn’t find a way to share it, so I cut and pasted it below. If you click on her name above, it should take you directly to her site.

Here we go…

Why, in the name of all things holy, do You cherry pick one person to heal and another person to die?

Why in the world does one baby get to recover and go home to laugh loud and inhale life and another baby gets covered with 6 feet a dirt and hunk of granite gravestone?

You tell us—- Why does this cancer patient get to tout that You heard their prayers and that cancer patient gets a morphine pump for the devouring pain and an unwanted visit from hospice?

When The Picked and The Healed audaciously celebrate: “God heard our prayers!” — are the unpicked and the unhealed really supposed to assume that You plugged Your ears and flat-out refused to hear their wildly begging prayers?

Or when the healed flaunt: “God heard our prayers” — are the unhealed supposed to realize that their prayers were actually flawed? Is healing only granted to the superior, spiritual elites who know the secret launch codes for prayer — and the prayers of the rest of us sorry sops somehow fell short, so our loved ones ended up dead?

Do You not have power to heal? Or do You just choose not to heal?

Is God ultimately impotent— or just plain indifferent?

And God grabs our attention and cups our faces close.

Jn Bridges b,w

God is not impotent — He kept a young girl from death and raised a middle age man from the dead and His words gave eyes light and ears reverberation and the Wounded Healer can heal.

And God is not indifferent — He’s wept over a grave and He catches every single one of your tears in a bottle because God can’t bear to waste grief and the way Christ most moves, is to be moved with compassion. (Matt. 9:36) The One who stretched out His hands on a Cross, stretches out His arms to touch us. (Mark 1:41)

God is not impotent. And God is not indifferent. And God hates injury, infirmity and injustice. Jesus came to heal and relieve from suffering, and God calls us to alleviate and decimate suffering. So if God allows suffering — it must be to allow something He loves even more than He hates suffering?

Sometimes God allows what He can hardly stand — to accomplish more than we understand.


Sometimes God allows what He can hardly stand — to accomplish more than we understand.

“It is what it is” — isn’t the whole story. All is not what it is — it is always more. What seems like your story — is but a line in the wholestory.

In every one happening — Christ is happening to do one million other things.

grad hat

In every one happening — Christ is happening to do one million other things.

What ifGod’s purposes are not so much for me to understand His plans: His plan is for me to understand Who He is. And He is my Peace.

What if: Prayer isn’t about getting what you desperately want, but about getting more of the One Who desperately wants you.

What if: You discover Jesus is really enough — when you discover Jesus is really all you have left.

Jesus was the only man of perfection — and He was a man of sorrows. He perfectly understands your heartbreaking sorrow — and stands heartbroken with you in it. No one can truly withstand suffering unless they know God truly stands with them.

And — The Wounded Healer always writes a story that offers healing: the healing here or the healing of heaven.

When God gives healing here — all He’s giving is more time here. Healing only gives time.And we already have all of time, because of Jesus. We’re given forever, time without end. Love heals us all — with love that breaks the bonds of time.

Whether we get less time or more time, to receive all time as a love gift. What if we didn’t always want the gift of more time — but appreciated more of time as a gift?

What if we didn’t always want the gift of more time — but appreciated more of time as a gift?

What if instead of asking: “Why did God take her already?” — the awed question was: “Why did we get the grace of her at all?”

What if we bravely lived what we humbly pray:

Your kingdom come —-
not our kingdom.

Your will be done —
not ours.

Your story be written —
not our way, but Your way, because You alone are The Way.

Because you alone are God — and we are not. And when we say we could write the Story better than God — we are saying that we are better than God.

We are always loved with the gift of a tender choice:

We can live bitter — or we can live Beloved.

We can walk away — or we can walk The Way — and let Him who is The Way show us the way through.

We can trust our changing feelings alone — or trust in the unchanging love of God alone.

We can feel abandoned — or we can abandon ourselves to God.

And the kindest truth is: When you feel most abandoned by God, is when you most can just abandon yourself to God.

When you feel most abandoned by God, is when you most can just abandon yourself to God.

You can feel nothing and still be held through everything.

And in everything there is this:

We only think we might write the story different because we don’t know the same things the Storyteller knows.

We only think we might write the story different because we don’t know the same things the Storyteller knows.

Who knows why the Storyteller allows heartbreak, but the answer must be important enough, because the Storyteller allows His heart to break too.

And this heals a bit of our hearts:

There is a Storyteller who writes Himself into the story and makes our souls well, because He walks with us until the story is finished in His perfect time, and His perfect way, for His perfect glory — so our souls are always well.


Hurricane Harvey Homecoming

harvey.jpgJoLynn and I have some missionary friends home in Houston from Bolivia, just in time to be greeted by Hurricane Harvey. Here is their story…

Dear Friends,                                                                                   August 2017

        It has been a horrible week!  What an awful ending to a wonderful summer!  How can I describe what we have been through.  We have so much to be thankful for.  No loss of life or property, our home didn’t flood and our families are safe.  But to see the loss and destruction all around us is just incomprehensible.  Our home church is still 3 feet under water, and is only accessible by boat.  The school I grew up going to was also under about 4 feet of water.  It has receded there, and they have begun the clean up.  What may be hard to understand is that our church and my school are about an hour from each other by freeway!  That is how widespread the destruction is.

Last Friday was the last normal day we had.  Not exactly normal.  School was canceled, and everyone raided the grocery stores and the gas stations.  I managed to get the last thing on the bread aisle- a bag of hamburger buns that looked like they had been run over by a cart, but they were mine!  That day we waited all day for the rain.  And then it started.   That night as we went to bed it was raining, and then the alerts started- one after the other- tornado alerts and flash flood alerts.  Over and over again, my phone then Scot’s phone and then 15 minutes later my phone then his phone.  We got no sleep and finally just turned our phones off to have some peace.  We still didn’t sleep well though.  What we didn’t realize was those alerts were warning us of immediate threats of tornadoes, and that we should have gotten in the closet.  I just thought they meant there were some in the Houston area.  I found out the next morning when people from all over the world started calling us, writing on face book and emailing us to see if we were okay.  That’s when we found out a tornado hit 10 minutes away about 5 in the morning.  I guess we should have paid attention to the alerts.  Oh well!

We sat glued to the tv all day Saturday and Sunday.  I can’t remember the last time I watched tv for 2 days straight.  When we weren’t watching tv, we were watching the water rise and rise and rise.  If we weren’t doing that we were texting, emailing and connecting with people on face book.  “How are you?”  “Any water in the house?”  “Still have power?”  Over and over again.  It got so high here, we were really worried.  And the rain just wouldn’t stop.  The hurricane was long gone, but not its effects.

We couldn’t get out of our subdivision for two days.  The water in the streets got up mid thigh.  Some cars in our neighborhood flooded and a few houses, but not many.  Why we were spared, I don’t know.  It would rain, then drain off.  We watched with horror as did the rest of the world the evacuations that were going on.  Then we started seeing neighborhoods closer to us, and then started seeing on face book people we knew, and their parents, and their pets needing to be evacuated.  Our side of town survived the flooding from the storm, but when they began to release water from the reservoir to prevent damage to it, utter destruction was unleashed.  Our church, our mission’s chairman, and so many many of our friends and church family went under water.  In a matter of hours the water was waist high with very little warning.  And what’s so awful is that they will be underwater for another 1-2 weeks.

I was amazed at how the sites and sounds of the neighborhood have changed.  Walking Buddy in the morning I no longer hear the cheerful sound of the school bus, and the laughter of happy children waiting to go to school, or the garbage collectors as they whistle and yell to each other.  In its place we now hear military helicopters overhead, chain saws cutting up tree branches, and boat motors as they go up and down the flooded streets.  The sites we see are just bazaar- fish in people’s front yards, dead deer on the freeway, convoys of national guard personnel and boats everywhere.  Never in my life have I seen so many boats- motor boats, canoes, kayaks, inflatable rafts and air boats.  It has become the new norm.

We have been able to help in several ways.  Scot went to volunteer at a couple of shelters early on, but they didn’t need any more help those days.  One day we went to help some friends get their furniture off the floor in case they flooded.  The next day Erin and I went to a church to do clothing distribution.  You can not imagine how many donations came in.  Their entire children’s wing- left to right, top to bottom was covered in clothes.  The national guard came to get them when we were there and we made human chains to pass the huge bags of clothes to the cars waiting to take them to shelters.  Then I came home and made calls to help coordinate care for families that were affected by the flooding.  Then I went with Austin to get his senior pictures taken.  So random, but we had had that appointment for a while, but didn’t expect they were open.  They called and told us to come on in if we wanted, so we did.  Then that night there was a church meeting to plan for care for our church body.  The next day Scot and Austin went to help friends from church move their furniture while I went on a demolition team to knock the sheet rock out of some houses.  When I got to the subdivision I got all choked up.  One after another, house after house, there was furniture, appliances, carpet all over the front yard.  It was as if it was a giant garage sale, but everything was destroyed.  All I did was sweep up sheet rock- for 4 hours.  And that was just one house.  And the teams were going from house to house to help people get their sheet rock knocked out so that they can dry out.
Today our family went to help a friend from church pull up their carpet.  We had to park a ways away because of the flooding and she had to come and escort us in because the police are trying to prevent looting.  We walked through over knee high water.  This beautiful subdivision was just a lake.  They had 3 inches of water in the house, but even with that little it was devastating.  It was hard to see as this was the house that I went to every week this year for Bible Study.  And the water was still all the way up their sidewalk not far from the front door.  It was just surreal as I heard a noise and looked out the window to see two men in a boat floating by the house.  I just wanted to scream- this is all so crazy!  As we left there was a steady stream of people coming in on boats, carrying fans, dehumidifiers, huge boxes of pizza, packages of water and more.

Though we have lost nothing, so much has changed.  Austin had one week of his senior year, and now two weeks are canceled.  He was excited about being on the varsity football team, but now his first 3 games have been canceled.  The national guard has taken over his high school, and so we have heard he will be transferred to another high school while they are there.  I was so excited about being part of the MOPS ministry, but now our entire children’s wing is under water and so all is on hold.  A Sunday school luncheon, a luncheon with a high school friend and a get together with a Bible study group- all canceled.   Scot had worked so hard for months to network with pastors to share our ministry with them and had meetings scheduled with 3 different churches.  All have been canceled!

We need your prayers!  All of us need your prayers!  Pray the water would go down, pray for safety, pray for wise decisions, pray for peace, pray for finances, pray for outreach.  So many did not have flood insurance.  If you want to help you can come to Houston and be part of a relief team through Bayou City Fellowship at bayoucityfellowship.com  If you want to give, our church has a fund for hurricane victims and for their reconstruction.  Go to bridgepointbible.org

The other day during my prayer time the second verse of “It is well with my soul” came to mind.  “Though Satan should buffet, though trials should come, let this blest assurance control, that Christ has regarded my helpless estate, and hath shed his own blood for my soul.”  I thought to myself right now we are being buffeted, we are going through trials, but we have the assurance that the Lord sees us, cares for us and has saved us.  Really that’s the most important thing!

In His Love,

Robin for the Ullriches



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How A Mennonite Buys A House: 4 Tips To Stay Married

I should write a blog. When Your Daughter Marries a Mennonite. But it wouldn’t be as good as this one…


FB_IMG_1502827331831My husband and I recently began the journey of buying our first home in Rio Rancho, New Mexico. It would be easy to assume when you and your Mennonite spouse decide to buy a home, you’d both be looking for a house. That would be wrong. YOU are looking for a house. Your spouse is looking to restore the glory days of his upbringing and the values of country living.

Our budget is slightly above the affordability of shoe box. Combined with the stress of our different cultural backgrounds, remaining married is no foregone conclusion.

Here’s how Mennonite buys a house:

  1. They Are Looking For A Deal.

Ah, expenses. Mennonite kryptonite. We  have considered foreclosures where I believe the best remedy is burning it down or an exorcism. Channel your inner Joanna Gaines because you are moving into a “fixer upper”. They will NOT pay extra for frivolous things like a roof…

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Simplified Cooley Version

Scientists-Stop-Light-Keep-It-Trapped-for-a-Full-Minute-371214-22 Corinthians 4:7-9 in the SCV: The light of God’s power is inside me. I’m fragile, but His power is great. That’s why I’m troubled but not crushed, perplexed but not giving up, spiritually terrorized but never abandoned by God, hurled down but unbroken. 

I was trying to memorize 2 Corinthians 4:7-9, and realized paraphrasing it might help. So, I checked a few versions, looked at the Greek cheats, and tried to make it as short as possible while maintaining accuracy. For me it’s a fun way to combine Bible study with memory work. Hope it helps you too.

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

2 Adventures Coming!

packingAdventure #1: we leave for Maranatha Ministries in Port-au-Prince TOMORROW. We will keep you updated on overweight bags allowed in, on-time flights, kids saved and mosquitoes killed. We are taking 20 bags, 50 pounds each, plus our carry-ons that contain our stuff. Check out the towel pile in the back! Also, buy God’s grace our new church was able to raise over $15000 to help out with English Camp. It’s been a good year. Now the adventure begins….


Second – My Little Red Jalopy by Leanna Craig Lebato comes out any day now. Illustrations are by Jose Ramos, the same guy who did Bizarre 2. Editing my me, but it’s still a fun book. Check out her killer website here. 

My Little Red.jpg

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






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







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






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






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






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






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.





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