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.

 

Advertisements

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!

image5

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!

image3-3IMG_5580

image6

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.

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.

How a Cancer Mom Prepares for Fall: Part 1 -The House

The new season is in the air! You know those “Opening Celebrations” and bucket lists for Fall? Cancer families have them too. No, it is not the faint smell of pumpkin spice and crunch of leaves.  I smell disinfectant and hear every sneeze, sniff, cough and “it’s just allergies”. It’s Fall– the season of dying and fright. Even slight and normal sickness is dangerous when the immune system is compromised.

This is the start of house arrest and fighting the disease experiments of pre-school. I am often asked if I spend all day cleaning. The short answer is “kinda” . I am constantly asked what we do, so today I reveal it. It may work for you or it may be the most ridiculous or common sense thing you’ve ever heard.

Mostly, this post is for my AMAZING friends whose children are starting chemo this season.  Sadly, there are several. This is how we have survived 5 years of compromised immune systems and 3 of house arrest.

1. Load the Arsenal and Prep the Weapons

  • Assign a Toy Bin. I use a Rubbermaid bin with lid to keep kids out.  All toys that have been played with that day (in a common area) are either cleaned daily or every other day. At the end of the day, or if something gets gross, put it in to be washed at night.
  • Get Mesh Laundry bags. Put the small toys inside and put that bag into the sink, the laundry, or the dishwasher.

 

  • Clean the Weapons. We get down the humidifiers, extra air purifiers and clean them thoroughly. All diffusers and things we need to breathe at night without sounding like Darth Vader get a right and proper scrubbing.
  • Use cleaners you love. We found natural, chemical-free cleaners with a smell we enjoy. It helps our home feel less like a hospital and smell less like bleach.
  • Cleaning Bins on each floor.  I don’t want to run up and down stairs to get cleaners, trash bags and Clorox, especially if vomit is involved.  It also keeps cleaners in one place.
  • Strategic Motivation. Put your favorite quotes, things that make you laugh, chocolate stashes, etc. near places where you will frequently be discouraged or working hard. Mine are near the trash bags and in the laundry room.

2. Guard the Door

A small table at the door holds Clorox wipes for the door handles, sanitizer, and masks for visitors and those going inside and out.

cleaning supplies

3. Purchases for Petri-Dish People (read TODDLERS)

  • Buy ALL the toothbrushes and pitch them. Strep throat and contagious germs that linger on toothbrushes are gross. Rotate regularly.  I get it, we want to cut down on waste and save the world. If pitching dollar store toothbrushes or plastic waste bothers you, buy the fancy earth-friendly ones on your Christmas list. You could boil them, but that uses water… look, sometimes you have to balance saving your kid’s life with saving the planet. My kid wins every time. EVERY time.
  • Laundry sanitizer. Game changer. Chemo caused Jon’s skin to have a strong smell which permeated all laundry. We tried 5 detergents without success.  We wash his clothing separately, but adding the extra sanitizer was a winner. lysollaundry
  • Masks. They look weird and hurt your ears over time, but if there is 100% change your little one will cough or sneeze in your face or use you as a human tissue, it is worth it to stay healthy. You can buy boxes of masks at pharmacies or on Amazon.
  • Sticker charts or visual aides for hand washing.  You can find these online. ANYTHING to motivate kids to wash their hands!

4. Air

“I can feel it coming in the air tonight…oh Lord.” -Phil Collins

Y’all know the basics from allergies, colds, temperature changes, etc.  Humidifiers, diffusers with essential oils, airing out the room, etc.

It really may be worth it to pay up for duct cleaning or an amazing air purifying system. Yes, they are pricey, but it can offset the smaller and less effective purifiers, etc. ( If you want the BEST purifier EVER, I know a gal.)  If that is NOT an option, change out the air filters often.

5. The Extra Cleaning

Eliminate all you can! You can’t keep adding more and expect to do it all.

  • Outsource if you can! A few people paid for cleaning service for me. It was hard to schedule and find time away, but it was glorious and soothed my soul afterward!
  • Have toys that are hard to clean or wash? Put them away for this season. You don’t need to get out all the seasonal clothing. 10 favorite outfits will do. You’ll be doing laundry all the time.
  • At nap time or the end of the day, wash the toys in the bin. If possible, pour the water and bleach right in. Just take out electronics first! (Oops). Then spread towels and let the toys dry out. For sanity, I only allow one “small toy” group at a time. If Legos are out, K’Nex are away, etc.
  • If you have a laundry day, add a load of stuffed animals. (Do this in the morning during home school or a distracted time so they reappear before bedtime!

LET PEOPLE HELP. I made a full task list of what should be cleaned, what cleaner to use and where to find it.

taskchart

6. The Drastic and Dramatic

The dread of one kid getting sick is that the others will likely catch it, despite best efforts.

This probably won’t apply to you, but we do keep kids apart. We disassembled bunk beds, changed flooring and put in a door.When William arrives home, he takes off shoes and heads directly to the shower. After a scrub down and a change of clothing, he gets to eat a snack and play in the top two floors while Jon must stay downstairs. That is when he can read or play with special “afternoon” toys after his school hours.

I use different colors and styles of plates for the boys so they are kept apart. Will likes to touch everything and he is likely to be germy. It also helps me know who has put their dishes in the sink and who hasn’t! Jon’s pantry items are also where Will can’t reach them.

That’s the basic start of how we prep! I do this over a week because we are already exhausted. Turn on a playlist of favorites, grab a favorite audio book or invite a friend over– anything to decrease the emotional urgency that will crop up

 

If you want a Pumpkin Spice Latte at the end, I promise not to roll my eyes at you. This is literally just a season. After all, “winter is coming”.

gameofthrones

 

Hearing God in the Thick Darkness

The sudden roaring burst of thunder jolted me into consciousness. I thrashed upright as   the room illuminated with lighting.

My husband’s voice let me know he was awake. “That was really close.” The whip-up from Hurricane Florence raged, but we could still hear the sound of our two youngest kids through the thunder. The clock read 2:13 am. Once the children had fallen back asleep, I rejoined my man in our room. “That was amazing. No wonder the Israelites were terrified of God’s voice.”

Not even 18 hours before, we sat in worship, Bibles open to Exodus 20. While Moses received the Ten Commandments, the Israelites remained afraid of the thunder and lightning.  As we read the familiar text, I noticed a phrase I had previously underlined. Immediately after the commandments are listed comes this passage:

“Now when all the people saw the thunder and the flashes of lightning and the sound of the trumpet and the mountain smoking, the people were afraid and trembled, and they stood far off and said to Moses, ” You speak to us, and we will listen; but do not let God speak to us, lest we die. Moses said to the people, “Do not fear, for God has come to test you, that the fear of him may be before you, that you may not sin. The people stood far off, while Moses drew near to the thick darkness where God was.”

It is so easy to scoff at the Israelites. Afraid? Okay, fine– but GOD is there. Gird your loins, be brave and endure the fear to be with God.  The last time the Israelites had seen thunder and lightning was during the plague of hail in Egypt. No wonder they were scared.  The Israelites had the opportunity to go up a mountain and hear the voice of God- to be in his presence. Yet they didn’t, because they were afraid. God’s purpose was to keep his people from sinning, but they chose to stand far off from what they feared. They wanted to know God’s Will and receive his blessing without the risk. 

I don’t want to be in the dark place either.  There is a lot to be afraid of in the darkness.

Oh, we want to hear from God and get the blessing of his Word, but why the testing? We want to walk by faith, but still see where we are going, thank you very much. I can’t see God’s faithfulness to care for me if I am capable of doing everything myself.

If everything we want comes easily and without cost, I will love God for what he can do, not who he is– and God knows it.The posture of my heart is often to stand far off. Climbing the mountain, taking up one’s cross, submitting to the Lordship of Christ– it is daily and difficult.

As a mother who has faced disability and the threat of cancer for not one but two young sons, I can tell you that the choice to climb the mountain and draw to God in the thick darkness is a daily, difficult choice. Honestly, there are days I chose to stand far off. Facing God makes me face myself.  That puts the fear of God in me more than any whooping or lecture I’ve ever received.

In my grieving, I often have time where I am content to dwell in God’s presence but I don’t have the words to pray. It’s much like giving your spouse the silent treatment while still cooking him dinner.  I love you, I’m glad you are here, but I am hurting and don’t know what to say. I’d rather not engage, for fear of hurting worse.

Reading the Word always draws me back.

When we have a correct view of the might and power of God against out own frailty, it keeps us from sin. When God speaks to us, we DO die. We kill our selfishness and sin, and putting it to death is painful.

I am tempted to love God for what he has done and what he can do rather than what he has done. If God strips away all the good things he has given me, is God still enough? Is it enough that Christ saved me from sin, even if he doesn’t save me from cancers, disabilities, and the life I expected?

Thick Darkness blinds us, so that we can’t see. We have no bearings. We are vulnerable and lost- we can only have God as he is, not as we expected to see him.We meet God on HIS terms. 

I can tell you one thing with great authority– I do not fear the “Shadow of Death” because I have sat in the Thick Darkness with God. That is how I can face the fear of my children dying of cancer and yet still praise God. The Ten Commandments reveal God’s nature and character. To experience God, the fearful reverence for who God is must outweigh the fear of death and all that life can bring.

I’m still learning to hear God’s voice in storms and to keep climbing in thick darkness. The beauty of it is that we can all draw near.

 

September 21: The 1 Year Mark

It was going to be a very big day.

6:30am, September 21, 2017.  School was out for Rosh Hashana. It was unseasonably warm, and I knew I would running after the boys until she handed in the early afternoon, I donned the only stretchy shirt I had left that fit over my pregnant belly.

IMG_3074

I snapped a quick picture of proof as I finished drying my hair. Jonathan asked to watch television as William looked at me, eyes wide and cheeks red. “Potty!”  I ushered William upstairs to the bathroom and gave Jon permission to watch tv.

“Only one show, Buddy. Too much t.v. will hurt your brain.”

A few minutes later Jonathan appeared in the doorway, looking down and eyes half closed. “I hurt my head”, he mumbled. As I went to him, William bolted off the throne. As I darted back to Will, Jon began to cry. He was burning up.

The day before he had collided with another student at a Fun-Run. Although the bump was minor, I wondered if that had anything to do with it. I grilled him on what happened, if he had jumped off the couch and hit the table, etc. but he couldn’t answer me. He took a step forward and veered to the right like a drunken sailor.

I laid him down, checked his pupils and tried to sit him up. His head was starting to pour sweat. I dashed back to William and threw his clothing on. I frantically texted my husband, which was ridiculous. He couldn’t get any messages for 8 hours at least; he was deployed to the other side of the world. I don’t remember sending the message.

“CALL ME IMMEDIATELY.”

While I called my mother to triage and explained the symptoms, I tried to help Jonathan walk. At this point he was a rag doll and vomiting. I hung up and packed a bag for the ER.

“I think Jonathan has a concussion. I’m headed to the ER”, I typed to Jess.

I put Jonathan onto the couch and ran to gather supplies, snapping a picture for the doctors.

IMG_3309

Meanwhile, in God’s timing, my man had forgotten something in his room that he needed. When he entered the room he saw his phone message and called me. I was trying to carry our 60 pound son who was losing consciousness down the stairs as I told him what happened. He hung up and told me to hang on. 20 minutes later his buddy Ryan, who was on his way to work at just the right time, arrived to drive the car so I could keep Jon awake. He sped to the local hospital while I desperately tried to keep Jonathan awake and get water into him. These emergency moments kick me into a fight response that is all too familiar. The adrenaline almost has a taste. The heart races in a quick beat,like a rowing team stroking paddles in unison and propelling the boat on at high speed. I run and bounce on the front of my feet, as if running track. It feels faster and more alert.

 

We careened into the valet drive, encircled with orange construction fencing. While I unbuckled William and wrestled with the double stroller that hadn’t been opened in years, Ryan carried Jonathan’s limp body through the glass doors. The valets stared at me, pumping with adrenaline and pregnant belly leading. They were quite relieved that I wasn’t the emergency.

Ryan darted out of the doors a moment later. “What’s his birthday?” I shouted the date. “How do you not know your kid’s birthday?” one asked. In a gasp I answered, “He’s not the father.” The two men stopped and looked at each other, eyebrows shooting up. I pushed the double stroller in at full speed.

Quickly, Jonathan was in a room and 4 people asked me repeatedly what he hit his head on. Guilt and frustration consumed me as I said I didn’t know. Every time Jonathan lifted his head, he vomited and collapsed. The nurses tried to cut his shirt off, which sent him into hysterics. It was a fight to secure the neck brace and get vitals. Shortly afterward a CT was called for, forcing me to remain outside. I prayed fervently that Jon would be calm as Ryan, whom he had met once before, stayed with him. William calmed me by waving and flirting with the nurses. He was having the time of his life.

I texted Jess and assured her I should be back home by 3 pm to pick her up. Surely this was just a bad concussion.

At this point I posted to facebook and asked for prayer.

IMG_3312

IMG_3315

After about 15 minutes, Jonathan returned. I held his hand and tried to calm everyone. Our doctor was prior military, so he knew the correct questions to ask and joked about Murphy’s Law. He left and suddenly three distinguished looking men with white coats entered.

” The CT scan showed massive internal bleeding.”

I panicked. How could he have hit his head that hard?

“We can’t see what caused it. It could be a vein, a tumor- we don’t know. We are flying him to Hopkins in Baltimore. The team will be in the air shortly. He may be in surgery by the time you arrive. I understand that you are military.” He turned to Ryan. “You need to get his father home, immediately.”

I turned to Ryan. “You need to call him. He will worry about me if I tell him.”

Time both stops and speeds up. I repeated the doctor’s words in my head, looking away from everyone’s faces to process. I’ve been given “life changing news” often enough to have practiced processing. I process best by both reading and hearing. I’ve learned to try processing as Jonathan does. It is almost like reading their words in a bubble on a comic strip. I understand why Jonathan looks away from faces when people speak; he “reads” their words. The message was clear- your son may die, and soon.There is nothing you can do to change it. Just hand your son over to us.

Ryan disappeared down the hall, phone in hand. He returned shortly afterward to take William. His lovely wife Allie had brought their three children to the waiting room; they took him for the night. That was a concern- Will wasn’t sleeping through the night and could be a challenge. He adored the time with the older kids and slept, God be praised.

The doctors stared at me. “Where’s your bathroom?” I asked. I had been drinking water to stay calm and was 7 months pregnant, after all.  I looked into the mirror. We were back in the hospital mode. I took a deep breath and mentally  girded for battle. My children needed me.

I returned and talked to the military doctor. Yes, I know where Hopkins is and how to get there. My other son is a cancer survivor. No, I’m not having contractions. Can I go on the helicopter?

If you have a family member with autism, you can imagine how putting Jonathan, strapped to a stretcher,  on a helicopter with strangers and potentially entering surgery without me was terrifying. As Ryan and I ran to the car, I talked too much (to process) and he sped through lights to get me to my son.

Thank God I knew Baltimore. Thank God going to Hopkins was second nature. Thank God we would be battling on familiar ground. All the cancer experiences we had here now made sense. It was preparation for this day. The eternal glimpses of God’s planning comforted me in teh midst of chaos. It was a solid anchor as this new storm pitched my boat.

As we screeched into the Emergency Room circle I ran in, once again frightening people that I was in labor.

“My son arrived by helicopter.” I panted. “His name is Jonathan-”

The guard smiled. “Oh honey, I knew you were coming. Come right here.” She stood and ushered be through the scary, white doors. The Emergency OR room was full of people who were surprisingly calm. Jonathan was on the table, awake and looking at the monitors. “Momma!” he squeaked.

The adrenaline raced. I marched right in and looked for the lead doctor. “Surgery?”

In this moment there is not true fear. It is more of a reactionary caution. I lived in a hospital for 6 months; this had become second nature, in a way. There is some truth in what they say about battle-tested mothers. It allowed me to focus and remain steady in the moment. If I panicked, the doctors wouldn’t be able to focus on Jonatha.

They informed me that he had been calm, done very well and the bleeding hadn’t spread. He was stable and would be taken upstairs as soon as the doctors reviewed him. 8 people asked me if I wanted to sit and asked if I was okay.

“How are you not freaking out?” one darling blonde nurse asked.

“This isn’t my first rodeo. My other son was treated for leukemia and had maintenance here. The nurses looked at each other. “Can we cry then? We are moms too and someone needs to freak out.”  God bless nurses. They are some of the best people in the world. They walk through Hell with you and come out smiling.

It became quiet for an hour as Jonathan began to open his eyes and speak. He was fairly calm as we headed into an MRI. By now the adrenaline began to fade. I sat in the waiting room and started to call family members. Ryan remained with me, steady and in contact with Command. Jonathan was nearly done when the good news came: My man was coming home. He would be wheels up as soon as possible- and it is no easy task. Relief flooded my body and soul. Elizabeth squirmed in my belly.

Once stable, we were transferred into the PICU. When I met the new team, the barrage of questions began- in both directions.My adrenaline was high and I was in full hospital mode. The athletic clothing and tennis shoes kept me moving.  “Are we NPO for potential surgeries?” I asked the doctor. She blinked. “Are you medical?” “Nope. I’m just a veteran cancer mom. She looked shocked and relieved. We went through the hundreds of medial questions and I tried to lighten the mood with humor. Laughter is my defiance in the face of fear.

Over the next several hours phone calls and texts flew. Jessica was picked up at the airport and was determined to make it to the hospital, somehow. Ryan stayed on the floor and relayed all the information to command. I felt the need to text hundreds of people but couldn’t keep up with all the information. Our wonderful pastor Brent came to the hospital to see what we needed and to see us. Messages poured in. My mother let me know she was about to board a plane.

As the sun began to set, Jonathan started to sleep. Ryan went out for food. He returned with a sandwich for me and the gentle reminders that I needed to eat. Ryan stayed until he was sure that another coworker, after a LONG day, would be picking up my mother room the airport in the middle of the night.

Jonathan was in and out, terrified and desperately clawing the neck brace. He moved gingerly and fought the nurses. I never left his side.

IMG_3385

As the sun set, the room became quiet, except for the beeping pumps and rounds of doctors. I met an incredible surgeon- Big Al- Dr. Al Cohen. He is at the top of the field and filled me with confidence. We were told that we would try to keep Jon stable as we watched the blood. If it remained steady, we would test again and then operate. We just remain, monitoring vigilantly. At the slightest wrong movement, we may be thrown into emergency surgery.

 

Shortly after, as if from a dream, Jess walked into the hospital room. Our early morning text about her visit seemed like years before. Indeed, it was in the part of my life now marked “Before”. We hugged and she immediately went to Jonathan. This was her first time leaving her 4 year old, and yet she came right to the aid of my kiddo. He had been cold and shaking, so when she pulled out the special red sweatshirt she purchased for him, he was thrilled. He wore it constantly for months.

She had a bag with a burrito, changes of clothing and things I needed to stay overnight.

IMG_3320

The hours flew and soon it was 10pm. I wedged my pregnant self onto the bed with him and listened to every breath. I prayed. I begged God to spare Jonathan.  Jonathan told me Elizabeth would arrive before I was even pregnant; I was scared God might take Jonathan just as he gave me Elizabeth. I pictured attending my child’s funeral pregnant, or with a newborn. I prayed his father would get to see him. I prayed for my husband’s safety. The air in the room almost had a taste to it. I prayed over my son and sang to him, stroking his fluffy blonde hair. All I can say about trusting God in that moment is that I trust my Commander. Through all I have been through, He has been faithful. Keep going. Just press on.

IMG_3352

We lived through the night. Not survived- but truly experienced life in all its wonder. It was the start of a new life, a new reality, a new diagnosis, a new story, and the Rosh Hashana- the new year.

It’s been a year and darn it, we’re still living.