Sunday and Monday

 

SMonday: The strange twilight between the peace of Sunday and the rush of the week’s demands. The time of preparing for what lies ahead without being able to face it yet. Yes, “Sunday Night” is quite our home just now. We are post brain surgery and preliminary diagnosis, but will wait on news. The New Normal appears from nowhere, like water on the boys’ bathroom floor, but an inevitable tidal wave awaits. We have begun to try hours of the Old Normal Routines, like school and therapies, dishes and laundry, cuddles and bedtime stories, and laughing through the dark.
Sunday morning, Jonathan put on a tie and shoes, declaring it was time for church.  It was comfortably familiar, like walking down the hall of former school or singing a long-forgotten song. Seeing the Church felt like coming home.
The lesson was about David defeating the Philistines after killing Goliath, and God helping David and the army. Reciting the verse about God helping in times of trouble, Jonathan crawled from his seated spot on the colorfully carpeted floor to my lap. His head was obviously hurting a bit, but I noticed a little tear and a frowning lip. The instruction continued; God helps us when we are scared to do what is right, to tell the truth or even be brave at the doctor.
That is when my strong and tall 6 year old began to cry quietly. “I’m sad my brain hurts and is sick. I am sad about the doctor… I need help, ” he whispered.  He put his head  in my lap and took deep breaths. I stroked his back and neck gently in either side of his healing incision.
It was in that moment I realized Jonathan  knew he was going to face something difficult-and God helping didn’t necessarily mean banishment of pain or hardship.  I held my son and whispered Truth. Life is hard, so we need a Savior. We are broken, so we have to trust the Creator. Mommy and Daddy are here, but God is the only constant. When we are weak, He is strong. There are Big Hurts in life, and many don’t go away until Heaven, but darn it we will fight with all our strength until then.
More often than not, God delivers through fires, floods, giants and cancers rather than from. Crosses are heavy to carry. Trusting God doesn’t always mean victory as we see it.  My Jonathan knows full well that “God With Us” means he will get shots, he will wake up confused in his Batman underpants with new scars, he will hurt and above all, “When we are happy, thankful, sad or scared, we pray”.  He sat with his head next to my pregnant belly and softly cried for a moment. Then he stood and asked for his father, so we went to the sanctuary and both held him as we worshiped and suffered…and then he asked for grilled cheese and ice cream.
The following day Jonathan returned to school for two hours. I nervously sat in the back pretending to be invisible, as I plan to do on his first day of college.  Aside from moving gingerly and not rotating his neck, he acted like nothing had changed. I marveled a bit as he read, cut and glued, and quickly wrote his name and traced letters with ease. After years of struggle, I was almost surprised to see him do what I knew he eventually would.
His class is filled with outstanding professionals and darling 5-6 year olds. For two glorious hours,I seemed to be the only one feeling stuck between worlds. I brought him home and he quickly melted into a pile of exhaustion and Legos.  Monday, indeed.
Honestly, I am content in Sunday. I have  done a fair amount of crying in church. It’s the time I am exposed to God without distractions of laundry and lists. It’s when I see genuine smiles and loved ones. It’s the hardest and softest place I know. There is greatness in coming before God in raw, brokenness and suffering when I have no words to pray and no song in my heart. It can take more than a Sunday to reach the “even so, Lord Jesus”.

Yet, “Monday”awaits. Lunches must be made, sticky floors need mopping, boys must be raised into men. Monday marks the beginning of News, Treatment, Illness, Blood Counts, Crying, Healing, and all the Normal Things that don’t stop for malignant tumors. We are ALL facing our own Mondays. May your Sundays be stronger than your Mondays.

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Scary Things and Tumor News

 

My first venture into a “haunted house” was in 6th grade; a teenage goblin  tripped me and I barreled into a wall, resulting in a 40 year old skeleton carrying me out of the exit. I was greeted by prepubescent laughter–supremely frightening. I’ve avoid intentional scares and ‘hauntings’ since then, but each time something terrifying jumps out, my immediate response after a moment of a shock is to strike back–it is best I avoid paid gremlins.
Suspense frightens me much more than the Things That Lurk. God bless the women who scream in theaters, “He’s behind that door! Run, Girl!”  A greater blessing still in the one who yells, “Stab that Creep back! He has Mommy Issues!” Laughter helps illuminate the Dark Night of the Soul.
My last mandatory “fright walk” was a high school team-building exercise. The full moon shone and others walked slowly, arm in arm, down the outdoor path. I confidently skipped along in a totally uncharacteristic way for one reason. For the past three summers I had attended church camp at that location, often praising and encountering my Lord in the place that was now darkened and meant to frighten.  I’ve walked difficult paths before and painfully learned to navigate it with the presence of the Most High.
A glance at our medical charts can look like motherhood nightmares. I was warned pregnancy wasn’t likely, followed by pregnancies intersecting with deployments, and birth issues. Born without oxygen and in distress, born premature, Down’s Syndrome, Failure to thrive, feeding tubes, Autism, Acute Myloid Leukemia, and now a bleeding brain tumor that will result in more oncology treatment. Our Christmas Letters are absurd.
I don’t think I received a raw deal or have a hard life– quite the opposite. We have an epic tale, and I adore a superb story.
As I sit in a hospital room with my dearly loved firstborn son, I am at peace with this familiar territory. Grappling with sleep deprivation and Sovereignty is familiar.
The ones that work in haunted houses are soon bored with what terrifies others. We will walk through head up and facing what comes head-on. There are some terrifying things behind the doors we are about to open.
BEHIND DOOR #1: The foremost neurosurgeon sat with us after surgery and told us the tumor is purple and the consistency of a dense currant jelly. Years of experience and close looks under the microscope showed that it was malignant. The current working diagnosis is a medulloblastoma. They were once ALL fatal. Research done primarily at…Johns Hopkins… has helped change that.
DO NOT GOOGLE. (Shudder) Allow me if you love the technical details.
DOOR #2: Again, this is ALL we know about the tumor and future treatment. It was been exactly one week since surgery. Full, thorough pathology usually takes 7-10 days. Results will come and the door will open. Jonathan’s skull and brain need to fully heal before anything begins. Our current situation has PLENTY to ponder without the what ifs.
DOOR #3: Treatment: There are many potential paths. Radiation and chemo could be inpatient, outpatient, and combination and and in a variety of duration. WE DON’T KNOW.We won’t open the door until we have faced door #2.
Handling the suspense: We know this is difficult for y’all, Dear Ones. Go ahead and freak out. Panic. Grieve. Bake. Write. Cry. Run. Yell. Whatever you want to do. Just know that soon we will open Door #2 and #3 and then it will be OUR turn to react and then help Jonathan learn how to look the Scary Things in the eye and fight back.
When things are Impossible and Insurmountable, the Infinite  works.  Taking Up Your Cross and obeying commands will attract frightening things. A real Enemy is at work and is after the souls of my sons.  However, the God I worship and imperfectly obey also gave his Son over to die. You may not agree, Friend, but I have staked my soul in this Truth and will live accordingly.
Please join us as we walk and discover what is in store.
Matthew 6:34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
Isaiah 35: 4 say to those with fearful hearts, “Be strong, do not fear; your God will come, he will come with vengeance; with divine retribution he will come to save you.”

How You Can Help-Jonathan

3  years ago I wrote “How You Can Help Us and Other FAQ” for William’s cancer treatment at UNC. Today we are at Johns Hopkins in Baltimore for Jonathan. Sibling rivalry is alive and well.

We should have more information and a plan in place this week but for now we plan on staying in the ICU for 1 week, potentially 2. Currently we have the grandparents present and flexible plane tickets have been purchased.

WHAT HAPPENED:

I brought Jonathan to the ER for severe concussion symptoms, total loss of motor skill/balance and vomiting on Thursday. A CT scan showed blood pooling in the lower cerebellum area of the brain, which controls balance, involuntary functions like breathing, etc.  This was NOT caused by bumps or a fall; something was in his brain for a while and hiding. Within a few hours he was flown by helicopter (which he enjoyed!) to Hopkins and was admitted to the trauma unit.

We now know what it ISN’T. As Arnold said in Kindergarten Cop, “It’s not a tumor!”, or a malformation of a blood vein. His angiogram was done by the #1 pediatric expert in the nation. God is so good. There IS a mass under the blood pooling but what it is and the cause remain unclear. The blood will naturally dissipate and cycle and then we can see more. We do not know about surgery, schedules, etc.

We are okay for childcare for now, thanks to grandparents. We are cycling back and forth the 45 minutes so that William and Jonathan are never alone. William will resume school Monday.

WHAT YOU CAN DO YOU HELP:

We learned a LOT from our 6 month hospital stay with William, which has made this even seem less traumatic and even familiar.

MEALS: We are pro-food, as a rule. We don’t know when we will be home to receive it or when we can eat large meals. What IS helpful is to have small meals or ingredients that are easy to assemble or transport, like cooked meat that can be added to parts, like tacos, chicken on a bagged salad, etc. Bags of frozen veggies and even chicken nuggets for William help. Muffins, cookies, cereal bars, applesauce, veggie straws– all toddler items help us feed William and can be brought to the hospital.

EASIER/NOT LOCAL FRIENDS: Local supermarkets like Wegman’s and Amazon Pantry deliver to the door. Family members are NOT from here, so avoiding time to fight traffic and navigate for the grocery store is wonderful. I will post the usual constant needs so that a simple click will bring it to us and save the trip. Size 4-5 Pull Ups, toilet paper, “Clear and Dye-Free” laundry detergent and Clorox wipes are always helpful necessities.

**Food gift cards for Papa John’s Pizza, Jason’s Deli, Chick-Fil-A, or really any chain restaurant are VERY helpful.

BEING EVERYWHERE AT ONCE:

William may need care and loves to play with other kids and outside. He’s loved the attention! I can’t tell you how amazing their elementary school teachers and staff have been, and our church/military family have made sure he is never alone. Afternoon park trips may be helpful so that he doesn’t have to do round trips in the car as we switch out at the hospital. We will be SURE to ask when we need help.

TRAVEL and VISITORS:

We can only have 3 people in the ICU room at a time, so we need to space out visits. We are SO thankful for visits and when I am with William I am happy for company while I do laundry or dishes.  We don’t know what schedules will be like for next week-October, so stay tuned. I will make a schedule for visitor windows at the hospital and here at the house.

EASIER/NOT LOCAL:

We will be able to Facetime, but if your kids want to make cards or videos for him to watch, it would be a treat, especially at 1am. Just a short message or dance party video would be great and allow him to see faces.

THE HARDEST HELP TO ASK FOR:

God has blessed us with financial ability to pay for our immediate needs and has always provided where we fall short. Financial help is NOT our biggest stress right now, but for those who want to bless us that way may. We don’t want to say no to a blessing if you want to give it.

The hardest burden was driving to the hospital, parking costs and airfare. Gas cards, Military PX cards or Southwest vouchers are the most helpful financial helps.  Others take off a percentage to use and we want to respect your gifts.

Again, THANK YOU for the incredible outpouring of love on all our family members. We are doing surprisingly well. Past trials have prepared us well. Our biggest goal is to glorify and honor Christ in all our circumstances and to raise our children well. Thank you for helping us to do that and to show them how we can be kind and love one another.

Love,

Kaitlin/Mom

“He Left It On the Field” and Other Cliches

 

Motherhood and sporting events are full of bad calls. Today we had an IEP (Individual Educational Plan) meeting with the school district for William, which is an event no matter how simple. For example, as we reviewed William’s motor skills and asked about dressing/grooming skills, he removed his shirt and threw it with great gusto and fanfare. A usual Wednesday.

After this relatively painless meeting in which William bathed in the glow of being called “too cute” by every woman present, I tore him away from his adoring public and turned my phone off of silent—

THE ELEMENTARY SCHOOL HAD CALLED.

The voicemail was from the nurse: “There’s been an incident. Jonathan is fine, but we need you to call us.”

This is how FEMA employees must feel as they brace for the aftermath of impact. Today was the fundraiser Fun Run—visions of my child losing his mind during the Kindergarten Running of The Bulls flashed through my mind.

“Hello, I’m returning your call about Jonathan.”

“Oh. Well, they were outside doing the Fun Run and child in front of him stopped suddenly. Jonathan ran right into the back of his head and—” The phone service failed.

Those 10 seconds of call back weren’t much fun but I breathed a sigh of relief.

I resumed the conversation, “So, he rear-ended someone? How bad was the collision?” The nurse continued “He hit his face. He was able to answer my questions and said his head wasn’t hurt, so we put a cold compress on him.”

I am NOT a mother who freaks out over these injuries although I know many mothers of firstborn kindergartners are, so the nurse seemed a bit surprised when I laughed and asked if he had a bloody nose.

“He may have bruising, but I didn’t see any blood. He wasn’t even crying. If he did, HE LEFT IT ALL ON THE FIELD.”

He left it all on the field.

Southern Football Moms, please stand on your riser rows and greet the new member into your ranks. I too, have heard this cliché!

I suddenly remembered I live 35 minutes from Baltimore and this phrase probably isn’t as meaningful to others. Moreover, it means my son needs to pay more attention during commutes. People do not maintain speed and can stop without any warning. Clearly my son needs to learn to maintain distance, to ‘bob and weave’ and maneuver defensively but for now I am fairly proud that my kid took a hit calmly.

Upon his return home I asked how the run went. “Uh, I ran.” Duh, Mom. “Did you hurt your nose?” Nod. “Did you bleed?” He gave me the incredulous sideways glance. “I’m fine.” My 6 year old is now 17. He left it on the field, but his backpack was left in the hallway as he ran for the kitchen. 15 yard penalty- repeat first down, Son.

Steering Sinking Ships at 2am

My eldest is exclaiming from the bathroom, “Mom! Help! My sock is wet! There was water on the floor! Everything is ruined!  I can’t even poop now!”  I’m filling out school emergency contact information and on the fourth line I am wanting to type, “Do the best you can.” The time is now 8 pm. Let’s work backward, shall we?

The proverbial Titanic that is this family’s Ship of State-of-Affairs hit the iceberg at 2 am. The ship is now underwater and I am left huddling next to The Unsinkable Molly Brown who promises that we will survive. Women and children first, after all.

2 am: What was that crash? Are we hit? Yes. How bad is the damage?!

That crash was from the boys’ room. William was awake and laughing. I spotted the Iceberg. Knowing it was all in vain, I attempted to put him back to bed, relieved that his brother was sleeping blissfully through the herd of elephants parading through a hurricane that I was certain I heard opposite the door.

We used to wake up at midnight, 2 am, 4am, and 5:45 with brother every night for several months post-cancer. I did as well, thinking were were still there.  About once a month he reverts.

IMG_3239  IMG_3068

At 3am I decided to be productive with my time awake. I filled out paperwork and let William have a dance party. He sang “Who, who, say who” to Edge of Seventeen as I wrote a survey and filled out school sheets. He danced, stripped, and ran feral.

A little after 4am I tried to help him rest and to grab 10 minutes of rest myself. Failure, destruction, and a hole in the ship. Jonathan woke up at 5:43, precisely on schedule. He looked at me, asked if I was okay and said I looked sick.

kaitroughmorning

Meanwhile, his brother knocked over chairs and Cheerios. Jon went to the deck and brought William. In the 15 seconds before I put down my broom, William was naked and the Pull-Up was over the deck railing.

cheerios

We gathered resolve and emergency items (read snacks and towels) and braced ourselves for swim class. They were SUPERB. Last week my mother in law worked her magic and they both got in willingly and obeyed instruction! Today was a little tougher because I was not there throughout the lesson but remained clothed, practiced skills, got into the water and didn’t die or poop.

swim lesson

I also got Barbara Manatee (Endangered Love) of VeggieTales Silly Songs stuck in my head thanks to my grey maternity bathing suit. Bearing witness and dazzling the kids with a bag of treats was my Life Preserver, Lynette. When I emerged from the water and beached myself in a chair I found this:

lynette and will

No. If we go down, we sink together. After an excruciatingly long time putting on socks, shoes, and wanting to read every book in the waiting room, we returned home for showers and a load of laundry before heading out to the Mothers Of Preschoolers kickoff. I needed people and there would be dinner. The boys played, ate, and convinced everyone that they were well-rested, well-adjusted and going to survive.

family party

We left happy, exhausted, encouraged and with pizza. I drove home to face The Sinking, quite aware that we had taken on more water than could be endured.  My daughter was swimming into my bladder.

So now I sit while my child wails that his book’s pages are wet from the aforementioned shower and listen to his lament. I await sleep- my beautiful Carpathia, very much picturing a string quartet playing “Nearer My God to Thee” as water consumes the vessel and people.

This ship will try again tomorrow, Hell or High Water. We are all taking on water but we shall remain Unsinkable. Nearer, my God, to Thee.

Fashion Crimes, Humility and Meeting Billy Graham

“Boys! We have to go to Rite-Aid. We need to get ready!” My sing-song voice called from the stairs. We were off to a great morning. In my optimism, I decided to push my luck. “Jon, are my blue sneaker downstairs? ” (I lived in Chicago during the 90s… the MJ, Bulls winning the Three-Peat days. Sneakers is in the vocab.)

Miraculously, he retrieved them and brought them up two flights of stairs with speed he will miss when he is a few decades older. He delivered them with a smile. Then he looked me over.

I had showered, brushed my teeth, put on mascara, applied deodorant AND used perfume. I had on UNSTAINED clothing that matched. My hair was in a ponytail (concessions have to be made) but a matching headband pulled back the curly strays.

Jonathan was NOT impressed. “Mom, not this.”  “What? ” I asked, confused.

“You need a dress. No blue shirt today. I’ll be back” He ran to my closet, leaving me on the top step befuddled and slightly insulted.

I had worn real clothing every day this week. When one has 4 appointments and assessments, one realizes she too is being assessed, even subconsciously. I had washed and fixed hair, full make up to include RED LIPSTICK, earrings, and matching purses that were NOT diaper bags this week. My son disapproved of my matching work-out gear for the Friday schedule of carpet cleaning, toilet scrubbing, herding my feral children and Rite Aid?

He returned with a cranberry colored V-neck maternity shirt that I intend to wear when the weather cools. “Mom, you need this one. Wear the red.”

I decided this moment had to be documented.

jfashion2

“Sweetie, Mommy will wear a dress to church. Today we are running an errand. Blue is okay.” I began to negotiate with a fashion-policeman. He has never seen any reference to Project Runway, but I expected “Make it Work” to be his next sentence.

He looked at me solemnly, as if he was telling me I can’t be trusted to drive and needed to hand him the keys. This from a boy who buttons the top button and has a bungee around his neck from his pulley-system elevator project from the morning?

jfashion

I stood up, explained that I matched and this is what I was wearing and it was time to go. With a great sign he left the shirt on the stairs and we headed to the car.

WHAT?! My fashion-minded kid has a penchant for ties, fedoras and newsboy hats, and very rarely wears a t-shirt. He would rather wear button-downs and look “handsome” because he gets affirmed and complimented constantly… but his matching needs work. His color wheel flattened and he dresses like a primary color circus tent without help. Socks and shoes are not fashion concerns– colorful knee socks under shorts and a mismatched polo are a go-to.

As the morning proceeded, my mother called. I recounted this tale. Grandmothers live for these moments. “Mom, I wouldn’t want to meet Billy Graham like this, but if I happened to we could chat and he could pray for me without feeling the need to call an intercessory prayer team first.”

Apparently I am two steps from a robe and hot rollers in the pick-up line. I’m sure that soon he will ask me to park and let him walk up to school as to not be seen with me.  This is the first generation of parents who have pictures of themselves wearing what is in style for their children– and they don’t realize how bad they look based on how bad WE looked!  Meanwhile, I just want his brother to keep his clothing ON.

Good luck with the fashion wars. Make it work.

 

Be Kind and Snow White

Ah, Wednesday. Therapy Day, if you will. It is the day William does not have school; teachers can do meetings, paperwork and important visits with parents to ensure their kiddos who need accommodations  actually receive them. It also means it is the only day we can have Occupational Therapy, Physical Therapy and Speech Therapy before 3pm.  After 3pm those in school fill slots, leaving 3-6 month waiting lists for those who can’t leave school for therapy. Behold, the perks of Pre-K.

We are familiar with this location, so playing in the waiting room for 1.5-2 hours is not a Vesuvius-Level-Situation. In fact, Jonathan is enjoying being one of the older kids in the play area.

Last week we arrived to three precious little ones playing nicely in the small area. They were 1/3 of Jonathan’s size. The moms glanced over at me in that mom-code way. I knowingly nodded and said, “Jonathan, be careful not to step on or bump any friends. They are smaller, so play nicely and protect them.”  Rather than go play with the Legos in the corner, he towered over the Tiny Ones playing with blocks. He gave each a nod like a benevolent monarch at court and then said, ‘Hi there!” and emphatically sang, “EVERYBODY DANCE NOW!”

Alas, singing Pump Up the Jam and leading a 90s dance party was the first thing he thought of in a new group of friends. This is how you win hearts and minds. I put my forehead in my hand with a smile while the other mothers laughed. Long live the 90s.

This week we saw a darling little girl who is there at the same hour. She plays while her sister receives therapy, so Jonathan often plays with this blonde, sparkly-shoed three year old. Week One she was dressed as Elsa. Week 2 she brought several princess figurines. She and Jonathan created a castle from toys and played together.

About halfway through, as ALL three year olds do, she hit  critical mass. It sounded as if she was saying “shoe” about a sparkly glass slipper but she was clearly saying “jewelry” (we found out much later). Mom finally whisked her outside to diffuse as we others encouraged and showed our clear non-judgmental solidarity.

Noticing the rapid absence of his playmate, Jonathan jumped to action.  He looked at the array of princess toys and deliberately selected the most sparkly one– Snow White. Knowing he can’t go outside, he climbed a chair and looked at her outside the window, waving. Although she couldn’t hear him, he called, “Why are you sad? It’s okay! Here is Snow White! Are you happy?” She didn’t answer, so he waited patiently and watched until she came inside and was ready to play. Sometimes you don’t need a shiny toy to fix it; sometimes just sitting nearby until the tears pass is enough.

Now, most crying issues in play areas are over toys and turn taking, so this could be seen as a gesture of kindness and potential reconciliation. I also choose to see a boy who recognized that when a girl is crying, he should ask her if she is okay, give her something sparkly she loves and sit until she recovers.  Long after more kids played happily and William was brought out once more, we walked to our minivan and buckled in.

“Jonathan, I really liked seeing you share and play today. Thank you for making sure everyone was okay and for trying to help when your friend was crying.”  With a smile of acknowledgement and a half shrug that was much too cool and mature for his age he said, “Be kind and Snow White.”  I like it.  It may be a new motto.

Cleaning after men, getting help from animals, not eating apples and all the cliches aside, when we have a shiny, sparkly Treasure we love, we can often lose sight of it when emotions or circumstances knock us for a loop. We may stop doing the things we love or refresh us. We may not live like a princess and settle for a new circumstance until someone helps us make it better.  All that aside, a good friend will see us in our distress and make sure we don’t lose our Sparkly Snow White altogether.

The newest Cinderella made “Have courage and be kind” a well known phrase. I’m in favor of my son’s simple wisdom. Maybe kindness can best be shown when we share our treasures and make sure others don’t lose the things that make them light up. Kindness asks. Kindness gives. Kindness sits until the tears stop.

For a child who had great trouble socializing and showing empathy until two years ago, (we had some trauma happening) it amazes me and fills my heart to watch these interactions. I’ll be trying to take his advice. Be kind, Snow White… and when possible, everybody dance.