For the Love of Pudge and Peanut Butter, Make the Snow Stop!

The dreaded e-mail taunted me. “Schools and offices will be closed today.”
The sliver of hope tucked deep in my chest transformed into a deep sigh. I was looking down at the e-mail on my phone, so it was only when my hand didn’t grasp the peanut butter jar that I looked into the pantry. The spare jar of peanut butter was NOT on the shelf. Instead, there were only two  cans of tuna. I was out of peanut butter, all I had was tuna, and I had no control over the weather.

Instantly the scene from Disney’s Lilo and Stitch entered my head:




In the face of the Polar Vortex and weeks of weather cancellations, I connect deeply with Lilo.  We have not had a full day of school this week. We have had ONE full 5 day week in 2019.  I’m giving you the side eye, Pudge the Fish.

Nothing demonstrates human frailty, helplessness, and lack of control like the weather. Of course, humans don’t like feeling frail, helpless ad out of control. A scroll through Facebook or Twitter comments on school closure announcements will demonstrate the worst in humanity. Some hilarious GIFs get honorable mention.

My sons ‘ disabilities make routines, predictable schedules and preparation important. They adore school, so frequent delays and cancellations are shattering.  They have lashed out at me, the person in their lives who appears to have control over their their comings and goings. I may think I have backpacks prepared, coping skills mastered and children ready on time, but inclement weather melts that pride like toilet paper in a hurricane.

Divinely, the next screen I read was the chronological daily bible devotional*. It read:

“For He says to the snow, Fall on the earth”, likewise to the gentle rain and the heavy rain of His strength. He seals the hand of every man, that all men may know His work.  Job 37:6-7 “

Weather disrupts work. A snow storm and torrential rain prevent outside activity. inclement weather interrupts planting season and harvest; it also reveals man’s inadequacy…man can do nothing to change the weather.

Amen and amen.
Disasters and event beyond our control bring out the best and worst in human nature. We seek God, shake our fist at him, or use the gifts he gave to improvise. Throw in parenting during disasters…  Fix it, Jesus and come quickly.

When I can’t control my circumstances,  ( like cancer diagnoses, fires, floods, military deployments during the Arab Spring,  unexpected labor during Hurricane Sandy, etc.)

I have been known to:
1. Freak out a little

2. Reorganize, make systems, try to control anything and everything

3. Let overwhelm turn into apathy

4.Decide apathy isn’t a viable option after 3 days of not cleaning toilets that my sons use.

5. Surrender and fully embrace that I am not in control of my circumstances or the actions of those around me.

6.  Buy a fire extinguisher, a bail bucket, extra peanut butter

7. Look for others who need help and weather the storms together

8. Blame Disney characters

-The weather, the attitudes of others, when school will open– it is all beyond my control. All I know is today I will serve my boys sandwiches for peanut butter sandwiches for lunch- not “stinkin’ tuna”.


  • Posts from 365 Devotional Entries- Chronological Bible Teaching 1/29/2019.

A Workout Routine That Really Stands Up

It’s January 2019; the flurry of offers for gym memberships and new workout routines are rivaled only by the flurries from this Polar Vortex. I made it to the gym, right under the wire.

Now, I have been in athletics of various kinds and am no stranger to gyms. I’m just more like a beloved cousin who drops in infrequently and should probably visit more. Even when I did go to the gym regularly and was comfortable in the gym habitat, I never looked cool at the gym. I am not exactly sure why that is…


The one time I looked remotebly cool at the gym was 2010 at the Fort Benning. I had a certain work out circuit memorized and my jams playing. I was in the ZONE when a young soldier approached me to ask if I was listening to a workout on my iPod. “Like, does it tell you the moves and count on a track?” I popped my earbud out and told him my secret. ” No, I am just keeping rhythm to Michael Jackson’s Greatest Hits. Beat it.”

Now in January 2019,  I am ready for a new and greater experience. One with guest passes and a cafe! This isn’t a military post gym with lockers, a dingy plastic shower curtain and rusty lockers. No Ma’am! This is a spa among gyms. The locker room smells of sweet shampoos, eucalyptus and hope. Hair dryers, lotions, mouthwash, spray deodorant, and other luxuries line the counters.
Banishing our winter coats to the wooden lockers and preparing to get physical, I reached for one of the spray bottles on the counter.
I spritzed. I paused. I checked the bottle.
“I think I just hair sprayed my armpits.”

The bottle in my hand read deodorant. I was suspicious. My pits were sticky and smelled made me feel closer to God immediately. Finish the phrase with me, Southerners. “The higher the hair, the closer to God.”

I sniffed the hairspray bottle.  I sniffed the deodorant bottle.I did NOT sniff my pit. After some amateur detective work, my friend Nancy Drew and I concluded that someone had accidentally switched the spraying lids on the bottles, so the first several sprays of “deodorant” had been remaining hairspray.

hairspray deoderant

No matter how awkward or out of place any other woman felt in that locker room, she had not hair-sprayed her pits that morning. In these faux pas moments we all face, there comes a moment where we decided how to react. I could get upset, complain, wash my pits in front of others, or just move on with an annoyed eye-roll…but no. Part of it is my personality, but I’ve spent years of practicing the mental discipline of choosing to laugh. Besides, if I didn’t want to share the laugh I wouldn’t be telling y’all this so you can laugh with me.

I chose to chuckle and then to own it. Better to have hair-spray in my armpits than deodorant in my hair! I’m NOT the first person to use hair spray before working out! What would Dolly Parton do?  Dolly probably never hair-sprayed her armpits, but she would never fault another woman for seeking style, support and volume in any manner possible.

As my muscles worked to raise the weights over my head I felt a sticky clash of greatness. The victorious thrill of Rocky Balboa raising his arms atop the Philadelphia Museum of Art had met all-day strength and hold in a squirt bottle.I realized that this accident had amazing implications. I was motivated to keep my arms raised!  Could this extend to other areas of life?

Imagine, a spray that improved smell but also kept arms up! Market this for sports events for the enthusiastic fan! A few simple sprays a worship leader can transform turn uptight curmudgeons with hands affixed in pockets into a Pentecostal swept by the spirit.

I’d say my trip to the gym was a success. I had spent time laughing with a friend,  completed a workout Dolly would be proud of, and presented the world with marketing inspiration. I look forward to hearing your ideas. In the meantime, I will attest that a good January workout did leave me feeling a little stiff, but high and lifted up.  All in favor of a good work out, raise your arms.

The Correct Answer Was Jesus, Not Joanna Gaines

If you were to visit me, there is only one way you could travel through my neighborhood to my house. Scratch that- there is only one legal, advisable and most direct way to reach my house. (The fact that my brain immediately felt the necessity of that caveat shows I am surrounded by sons and wisenheimers.) Assuming one is in a car and not equipped with a parachute or industrial circus equipment, one would turn off the highway onto Howard Street, which is the start of a 3 mile wide historic town.

Before you reach the old parsonage, Foundry and Civil-War era mill, you will see historic homes. Old but full of life, these homes beckon me to imagine their glory days when the red paint on the front door hadn’t faded.

It is like a beloved grandmother smiling at you under considerable laugh lines, eyes twinkling to rival her trademark sparkling ruby earrings.  A black and white portrait of her at 31 sits on a shelf, breathtakingly stunning in her youth. Despite all the changes , the two women are unmistakably the same woman. One has simply lived, weathered storms, and housed memories– but is still wearing those sparkling ruby earrings.

In the middle of these homes are three neglected, eye sores. For seven months one stood flanked by rotting wood and trash. The realtor’s sign near the street was nearly choked out by weeds, so I didn’t notice when it disappeared around Christmas.

Last week I noticed a large dumpster in the front yard, filled with trash and debris. Yesterday the house had pale blue siding, new windows, and a door replaced the plywood sprawled with “No Trespassing”. The transformation struck me. It was already hard to envision the older house. Eager to seize the “teachable moment”, I excitedly instructed the kids to look out the window as we passed.

I silently nodded to the invisible Mary Poppins of Biblical Motherhood sitting in my front seat, knowing this was just such an illustration she would pull from her bag in a Practically Perfect Way.

“Look at this house! It was broken, ignored, and it became unwanted. Someone paid a price for it  when it was messy and needed work, and little by little he fixed it. Someone took out trash, tore off the rotten parts and fixed the inside. Then the outside became better. One day it will be new and beautiful. It is like what God did! He saw that we were broken, but he paid for us with Christ’s blood and death on the cross.  It cost Jesus everything so  could buy all of us back and have the chance to make us new.  Isn’t this like Jesus? He buys us and can help make us new if we invite Him in and put Him in charge?”

As I prepared to give my final line, throw up my hands with a triumphant, “Thank you and goodnight!”, Jonathan’s voice called from the backseat. “Yes! It is just like FIXER UPPER.”



Jonathan, the correct answer was Jesus. It’s the classic rule of Sunday School! Of course, he isn’t wrong. This house is absolutely being transformed and fixed up.  The Practically Perfect Mother of Teachable Moments may be as crushed as a wall on Demo Day, but I laughed.

The transformation of my children’s hearts and souls will take much longer, but clearly I have the help of Joanna Gaines and Jesus.

Back to School, Cher and the Cat’s Pajamas

Today is the Big Day I have looked forward to for months. It seems so surreal.  This Monday morning BOTH my sons would get onto the bus and go to school together! The very air smells of victory!  I slept a total of six hours last night with only one interruption– I am a new person! The sweet euphoria of sleep paired with anticipation!

There is a semblance of the old person of course, but there is something bright, taut, girded and fresh. Mama, Mia-  I’m basically Cher.

cher mama mia


Finally, “New Normal” can begin. The problem with returning to normal is that it isn’t where you leave it. Normal always needs to have a little work done.

I got up at 5:00am, washed my face and put on real clothes. I started this routine after our beloved recycling man, Dee, came by with Christmas gifts for the kids. They each got a large, loud toy but I… I got a Cat-Lady Pajama Onesie. It is a spectacular ode to how I looked in sweats at 7:00 each Tuesday after three scattered hours of sleep. Me-ouch. Point Taken.

cat pjs

I eagerly awaited the day they would come take both boys to school. As often happens, one day can change everything.

Our bus driver and his wife are an elderly yet spunky couple. They are like family.Last Thursday, they were in a significant car accident that injured them enough to take them from work indefinitely.The substitute driver had only a roster- I would not allow him to be thrown to the elementary-aged wolves!  I wrote a note with pertinent information, such as names, schedules, to put Jonathan in the front seat behind the driver or a scene from Jumanji would inhabit the bus… but I think the bases were covered.

The lunches and backpacks were ready. Shoes were at the door and everyone had on pants by 7 am. I was CRUSHING it with the routine. We would put on shoes and walk as a family to the bus stop at the end of the drive at 8:25. As always, we would say a prayer, have our family huddle, and I would send them to the bus with blessing while giving the bus driver my profound gratitude between 8:30-8:35.

The only problem is… this is MY family we are talking about. “Routine” and  “Normal” are as elusive as the two children who live in my home, “Not Me” and “I Didn’t Do It”. At 8:24 William was dancing and Jonathan was opening a 2,000 piece puzzle of Starry Night when my phone rang. The bus was idling at the stop. I dashed to grab William’s red All-Stars and hollared for Jonathan to run for the bus. Mid-run I said a half-prayer-half-goodbye to the kids. Glancing back from the bus stairs with William I spotted Jonathan running, holding his hat. They dashed on and sat, ready for school. My apologies and friendly good mornings were met with an expressionless, blank stare that is extremely common up here.

A Monday dash for the bus– not ideal, but I suppose it is “normal”. I have had several people ask me what I will do with “all my time” this morning. I will probably change diapers and do the dishes and laundry with a one year old on my hip in this lap of luxury. I tell you, I am a Queen with Bon-Bons. It’s not a vacation, but it is working its way to a new normal.

My theme and goal for 2018 was to survive and keep things alive- to halt and slow death and decay as much as possible. It looked like replacing batteries when toys sounded demon-possessed and driving for regular chemo treatments. Of course, a parent’s force of will can’t prevent cancer from claiming their child’s life. However, we can fight full force against what death brings with it. Bananas were turning spotted and brown on the counter last night. From Grinch-style greasy, black peels, the bananas were sacrificially crushed and stirred up to become banana bread- Jon’s favorite treat. Small acts of love are often small acts of defiance and love.

It’s not a new beginning as much as a changing. Cancer isn’t really over- it can’t be boxed up and filed away. When you live through something, you carry it differently, but you must keep it. It is yours to carry.  We lived.

It’s a lot like the movies. Characters emerge from some battlefield or trial, speckled with bruises, dirt and exhaustion. They stand triumphant in survival, knowing tomorrow is another day. The scene fades into a time-lapse. The winter turns to a lovely spring setting where everyone is smiling and restored. Children grow, couples are reunited, or a tortured soul finds peace. They are rarely worse for wear and always better for the experience! The problem is, that next scene is rarely the battle’s Tomorrow.

The year after cancer is often as hard as the year of cancer itself. The healing, processing year is hard. The trial is hard but glorious in its way. The end- well, who doesn’t want to be at the victory? That middle ground- that second sequel in the trilogy- that is the place that no one likes to sit. It’s just a road to get to a new place. We want the healing and the training to be a movie-montage set to music. The year of William’s recovery taught me the need for time, quiet, and moving slowly.

The rhythms of life continue, sprinkled with abundant dashes for the bus and smiles over banana bread.  For now, there is a baby crying and a dryer beeping. After all, it is Monday.


A New Year’s Letter from Elizabeth

Happy New Year! Elizabeth Joy here. You’d be shocked at how rare a moment of unsupervised peace and quiet is in this home. I distracted everyone by touching 5 toys that sing and light up to buy time.  I wanted to write this note to my adoring public to give the real report from 2018.

You’ll recall that I had just arrived last Christmas. I’m happy to report that I have made considerable improvements around here. I started 2018 a little confused, just months old and full of wonder. I end it with the internet wrapped around my tiny chubby finger and my parents eating out of my grubby little applesauce- encrusted hand. You cannot imagine how hard it is to keep these cheeks so plump and this hair so curly.  There is a certain level of cuteness we must strive to maintain!


Jonathan got on board by learning to wink.

Mom though it was a tumor-related eye issue at first, but Jon was simply trying to flirt. The poor kid doesn’t have a chance if Mom is around. William is still relying on his guilty grins and dance moves to win adoration.

Will 1

He recently perfected the half-headstand and running man. His Worm needs a bit of work, as it often makes him pass gas, which leads to laughter. Boy humor is gross.

I’ll admit that the first half of 2018 was a blur. Honestly, I slept through most of it. I was the only one, though. Over the winter William had several illnesses and had trouble breathing at night. He slept only 4 hours a night, which brought on problems. After months of appointments and fighting, Mom and Dad got surgery scheduled in June. They said Will’s nose and throat improved significantly, but they look the same to me. Rhinoplasty is tricky. Recovery wasn’t pretty.


He struggled to even go to school at the end of the year, so it looked like he would have to go to another school with a different education program. You should have seen Mom’s face. They say I have a fiery personality, but wow. Mom and Dad fought and worked with the district until William was able to stay in his same school for a month’s trial. In that time he not only made up all of the unmet standards, but met new goals!


He is even one of the most popular kids in class, especially during dance time. We are thrilled with the elementary school, staff, and inclusive culture. I think school looks great, but for now I have to supervise the home.

I have been traveling to doctor’s appointments for both boys and charming the socks off of the medical staff at Johns Hopkins Children’s Hospital, in Baltimore, where Jonathan has been getting his treatment for the past year.At this point Jon can be a doctor, while I will head straight to Nobel-level oncology research. After two brothers with unrelated cancers, I have to get involved.  Speaking of that, all of you helped our family raise over $3,500 for cancer research and support this year!



We are at the hospital constantly. We even had a special photoshoot called Flashes of Hope, which is for children life-threatening illnesses. You may recall William’s from 2014-15. Now they can match.





His MRIs have shown no tumor growth, so the day after Christmas, Dad took him to the hospital to have his port removed.  It was quite the Christmas present to be finished! Meanwhile, my Aubie and Pop came to visit! I was spoiled and adored appropriately, despite my parent’s best deterring efforts. No grandparent can deny this cute little smile. Of course, I am now running to them, blowing kisses, saying phrases, and even eating vegetables. I have to set a good example for the brothers, after all. I have to give them hope.

There is no denying that this year was challenging, but full of JOY. 2019 will be full of hope. Hope is the defiant belief that God’s promises are true, regardless of circumstances. We believe that God is all-powerful, good, and worthy to be obeyed. We finish this year rejoicing, but knowing lots of hard work and healing await. Thank goodness for all the people who have loved us so well through it all. My parents couldn’t have thrived without your help. After all, I’m not even three feet tall. I can only do so much.

We pray 2019 is a year of hope, healing, and rest. In fact, I think I’ll start it off with a nap.

With Love,

Elizabeth Joy



Yes, Virginia, Whoville Has A Garden Club


Holiday traditions stretch far and wide,

For Grandma Mimi, something new was tried

Whoville’s Garden Club tours a holiday home

Through decked halls,  strangers peek and roam

Cindy-Lou Who had always said, “No, thanks”

To these Christmas elves in pearls and Spanxx

Her renovated home was lovely and inviting

Christmas fun for Mimi did sound exciting

Soon Cindy Lou felt only regret

From this holiday story you won’t soon forget…


My dearest Cindy Lou Who has a stunning home, which she often opens for play dates and hospitality. Her large, gorgeous home is a work horse. Cindy Lou’s home was flooded in a recent hurricane, so they lived with family for nine months during renovations. She was glad to be back in the home, and that is when the call came. “Would you like to be on the holiday tour of homes this year?”

Cindy Lou went on these home tours with her mother and Grandma Mimi in years past. Mimi was now wheelchair bound after a stroke. This could be fun to do with her.  In a weak moment, she agreed.

When the ladies came to see the home they were all smiles. This would be lovely! It wasn’t the 10,000 or 8,000 square foot mansions on the tour, but it would be darling.  Cindy Lou recognized that her home is much smaller. “We don’t do crazy, over the top Christmas”, she warned. She asked if they need to be taken from the list but ladies assured her that the size of house doesn’t matter and it would be great.  Santa could even be at this house to make it extra special!

Now, Cindy Lou has small children. She decided she would NOT go spend thousands at Hobby Lobby to decorate  for a fundraising tour. Instead, she called her friends. She drove around and gathered trees, ornaments, nutcrackers, etc. from all over town, shoving it into her car and taking it home, like the Grinch stealing Christmas.

When she wasn’t caring for children or working, she spent every spare moment of October and November decorating for Christmas.  There were two large trees, a small tree in every bedroom, and smaller decorations hiding in bookshelves. The backyard tree house had lights like Snoopy’s doghouse. On Thanksgiving, snowflake pillows adorned the beds. Cindy went from Christmas Spirit to superfluous. All for the cause, Mimi.

The tour was over a weekend, so Cindy Lou packed the kids and prepared to head to see family so that the children could play while strangers toured the home. Cindy Lou’s husband, Mr. Who, was out of town on business. Cindy Lou’s daughter came down with Strep. Cindy Lou’s mother in law invited them to visit, but she ended up with the flu. Exhausted and committed, Cindy Lou Who dropped her family off to her mother’s. It was 8:30pm when the call came in from Martha May Whovier.

martha may 1

Martha Mae: ” I’ve just been at your house to tape off the steps and we have a very big problem. I am just very concerned because I went to all the houses today and yours just doesn’t have enough decorations. I am worried that compared to the other homes you will be embarrassed.”

I know. Grab your tinsel.

cindy lou

Cindy Lou: “Excuse me? I’m sorry if the way we decorate for Christmas isn’t good enough for the tour. Please feel free to take us off your tour list. “

Martha Mae: “Oh no! I was thinking some ladies and I could come over with some trees and things and help you decorate.”

Again, this is 8:30pm, the night before the tour. Maybe Martha figured Cindy Lou just got busy and would love the help to avoid embarrassment.  Perhaps it never occurred to Martha that Cindy Lou didn’t want Hobby Lobby to vomit red and green glitter all over her home.

Cindy Lou: “No, that’s okay. I’m kind of mortified right now. We worked hard and spent a lot of money on this, so please take us off.”

Martha Mae: “No, no! That would be a disaster! We can’t take you off the list! Santa is at your house!”

Cindy Lou: “Actually you can. I am a volunteer and if I don’t give you the key and open my home, you can’t tour. You realize that, right?”

Martha Mae: “Okay, no problem! If you are okay with it, we are okay. We just didn’t want you to be embarrassed that we didn’t tell you how much to decorate.  I mean, how many trees do you have?”

Cindy Lou, now crying: “At least three, which to me is a lot.”

Martha Mae: “Okay, let’s just forget this happened. We will see you tomorrow.”


The next morning, Cindy Lou returned to her home to open it up and let meet Santa. Jolly Old Nick came in with his grand chair and set up next to one of the many trees. As he set up he mentioned that he has previously volunteered for this organization a few times. Cindy Lou thanked him for volunteering and said she was glad he could be a part of the event. Santa was not done. “Well, I usually make about $150 bucks an hour at events like this.”  Cindy Lou smiled and said, “That’s nice”. Annoyed that she didn’t grasp his meaning, Santa said, “Since I’m doing this as a volunteer, I’m going to set out my tip jar because I’m not making $150 an hour for my work.”  Yes, apparently to Santa,  volunteering to mingle means singles.

Cindy Lou was stunned. Santa did not work for Christmas Spirit, boy howdy. He wanted cash. Cindy Lou raised her eyebrows and informed Santa that there were standards in this home. She may have been deemed the classles crap house, but Santa  would not ask for donations from parents and kids who had already paid to go on this tour. This was not a stripper Santa who would dance on a North Pole- no singles for this Santa?  There were no photos or gifts given! This Santa was SENT to Cindy Lou’s home by others and now wanted carrot money for Rudolph.

cindy lou who santa

Annoyed and indignant, Santa then asked CINDY LOU, “Well, are you going to pay to make up my fee?” To be clear, this would total roughly $800 for a voluntary fee. Cindy Lou countered, “How about I give you $100 to not put out your tip jar?” He answered, “How about $165?” Santa bargains, y’all. Giving money and good riddance, Cindy shut the door on Santa.

Reeling from the day, she brought her sick kiddos home and told the tale to Mr. Who, who had returned from his trip. He blinked, stunned. Apparently Mr. Who had once stated to Cindy Lou that he did NOT want to go onto ladders to hang Christmas lights, so if she expected that in marriage, she picked the wrong man. STILL, he went and put up lights on a backyard play house for this. “I don’t understand. There is a Christmas tree in our bedroom. How is that not enough? That isn’t normal!”

Feeling dejected and wondering where the soul of Christmas had gone, Cindy Lou greeted the next morning with relief. Then Martha Mae knocked on the door. As a thank you for her hard work and time, (not to mention the $160 cash for Santa), she offered Cindy Lou Who… a fruitcake.


Cindy Lou’s chutzpah grew three sizes that day. With a smile, Cindy Lou said she thought the club had truly lost the meaning of the season, she would not want to help the organization again, and they were welcome to keep the fruitcake. She decided to tell them to go to Hell in a way that would make them look forward to the trip. After all, what about those who lost their Christmas belongings to the hurricane? Who had little? Who were thankful for just one tiny tree? What about those in hospitals or nursing homes?

Cindy Lou took a deep breath. One person absolutely enjoyed the tour- Mimi. She came to the house, sat in her wheelchair as a hostess, and interacted with more people in a weekend than she had in years.

Now Cindy Lou Who knows just what to do. She can take down the extra Christmas decorations and enjoy a simple season with her family.

She can put away ribbons! Put away tags! Put away packages, boxes, and bags!

Cindy puzzles three hours, till her puzzler was sore. Christmas, she said, can’t be bought at a store. Maybe Christmas, perhaps, is better with less. Christmas should not be made into a mess.

The angst and frustration would not overtake her- Cindy would forgive, after going Julia Sugarbaker.











How A Cancer Mom Prepares for Winter Part 2: Isolation

Before I get to the logistics of how to raise a medically fragile/compromised child, let me acknowledge the MANY written pieces on the subject People much more educated and experienced than I am have written informative and emotional pieces warning us about the fragile nature of the  immuno-compromised. I will talk about logistics, but first I MUST address the real issue– the spirit and heart of the matter.

Adjust your mindset: This is important. Very. First, cancer is scary. It is a new kind of culture shock. As you learn new medical terms, memorize the route to hospitals and clinics, learn the hard and difficult patterns of your child’s side effects, everything will feel new.

One of the hardest tasks is learning how to handle people. This applies to relationships, immediate family, helpers, medical teams, those you tell your story to and even those who wound you. New diagnoses mean new values and new boundaries, which impact all relationships. This is one of the unidentified challenges that comes with crisis.

Others will rush to your aide, offering anything you need if you would only ask. You would ask, if only you knew.  The challenge is that spending time with people and just sitting in grief is exceptionally hard. New tasks and needs pile on with highest priority and cause overwhelm.

The gravity and urgency of a child being treated for cancer, if you will excuse the cliche, puts priorities in perspective.  The “normal” things aren’t possible, or they come with the cost of exhaustion. When William and I lived in relative isolation for 6 months, I felt an enormous desire and pressure to make time as a family memorable and wonderful. In my desire to create stability or Jonathan, I felt guilt and frustration that I missed class parties and trips to the zoo. If we could go to church, we became overwhelmed with our friends wanting to hug us and talk to us. Trying to connect, answer deep and challenging questions and trying to feel “normal” all in the space of a walk from the sanctuary to the car filled me with pressure.

Toward the end of treatment I became diligent about identifying and naming what actually had to happen and what I could take off of my plate.

This time around, I made notes of the following:

  1. What helps each family member rest? 2. What people help encourage our souls? 3. What tasks can I outsource? 4. What things must be done that ONLY I can do?            5. How do we engage with people when we are isolated?

There was a deep sense of loss for me when we couldn’t be around people. (Extrovert problems!)  I mourned that we couldn’t attend Christmas services, go on family outings, or go to school. I felt horrible guilt that I couldn’t take the boys to therapies that was supposed to help them.  Even recycling the PTA fliers and requests for help hit a twinge of pride– I simply couldn’t do it all. Someone did say I was probably glad to have not done dishes for six months while living in a hospital room. That was one silver lining I couldn’t see. I’d do ALL the dishes to get my kid leukemia-free.

What I eventually learned was this is a TRADE. We missed our family and friends, but we developed deeper friendships and we learned to LOVE our nurses. (God BLESS them!) We missed holiday parties, but we had visits from carolers and a Christmas Day feast in the hospital. We danced at fundraisers and connected with remarkable people. It’s like being stationed in a foreign country– to receive something new, your hands must be emptied of the old. ( Put down the hot casserole dishes first, if someone wants to hand you a Crock-Pot.)

I tried to keep things familiar and consistent to feel normal. Sometimes that worked and it was wonderful. Other times it didn’t work at all. Give yourself grace when things don’t work right away, Friend.

Dealing with SICKOS: 

Having an immuno-compromised loved one during cold/flu season feels a bit like being the only doctor who recognizes Germ Theory in a trench.  There are two groups of people: those that comprehend the severity of the situation and those who don’t. No one wants to get your kid sick, but precautions just won’t be taken. In this instance, you MUST take drastic measures to protect your family. I’m talking Wakanda-force-field, Cold War bunker, Haz-Mat suit.

School is full of the flu and strep. It is full of kids who spent the night throwing up but “seem fine” today. The Motrin-spiked low grade fever kid WILL be there. If you have a question about your child’s counts or energy, keep your kid home. This is the time you an be dramatic– this literally may end up as a life or death situation.

No matter how much you trust and love people, assume a defensive posture. Our 81 year old neighbor was warned of the danger of germs but still grabbed him for a hug… and then when I was helping Jonathan she kissed him on the mouth. In my stunned second before I could grab him away, William actually smacked her in the face and pushed her away. Mother of Pearl. We forbade all visitors after that.


However, our people who “got it” would scrub in, wear masks, bathe in Lysol and make meals as possible. They kept are away at the risk of a sniffle. They loved from afar and loved us well.

Family and holidays: 

Your family members are struggling with the situation as well, and may react differently. There will be hard emotions and misunderstandings. Give grace and forgive.

People will want to see you, and it is hard to say no. ESPECIALLY over the holidays, people travel ill. People who feel healthy may have a bug- their bodies can fight it. Without an immune system, it becomes a major illness.It is okay to not travel or see anyone for Thanksgiving or Christmas.

Listen to the voice of experience:

Moms told me of 10 and 14 day hospital stays because of “little colds”. I took precautions seriously and I still nearly lost William.

In William’s final month of chemo he suddenly became ill. His skin peeled and bled off of his cheeks. He vomited and messed up sheets so frequently that we stopped using them. He cried constantly and could not sleep. Despite being on hospital isolation precautions (think Ebola) he contracted a deadly bacterial infection that nearly killed him. I will never forget the moment the consistent calm of the nurses changed into an intensity as they demanded a surgeon and morphine. Will screamed as I was asked to leave the room. Sweaty from the paper gown, mask, and gloves, I ripped them off and breathed deeply as I sat in the hallway, collapsing with my head in my hands. Above me a sign was taped to the hallway: “NO VISITORS UNDER AGE 12 or ANY ill visitors!”

In the midst of the fear and panic, I was helpless. Still, it didn’t last forever.

brain tumor awareness

No amount of precaution and careful planning can fully protect you. It is not all up to you, so don’t put that pressure onto yourself. Fear not.  We weren’t alone and neither are you. Call if you need Germ-x and encouragement.

Remember, isolation doesn’t mean you are alone.