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

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“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.

90 Minutes: 2 Injuries and a Game of a Throne

 

Some seconds last an eternity. Some days are gone in a flash. Time is a tricky thing in this human experience, particularly with little humans around. “I turned my back for a minute…”  strikes fear into every parent.

Allow me to tell you about the last hour and 20 minutes. Buckle up.

1:23pm : After a delightful play-date with new friends, the boys play happily on the deck.

1:26 pm: Jonathan’s attempt to close the screen door results in the tiny metal latch driving underneath his thumb’s nail bed. Blood and tears ensue.

1:31 pm: First aid is administered. I am eventually informed that a Band-aid and TWO mommy kisses are enough, if he is allowed to finish his television show.

jonmouthinjury2

1:34: I hear a toilet flush and realize William had gone upstairs unattended.

1:35: I remind myself not to sprint up the stairs while pregnant again, catching my breath and a faint whiff of toilet use.

1:36: I discover William “Donald Ducking it” ie: wearing a shirt and nothing on bottom.

1:37: No poop is found. No Pull-Up is located. I dress Will fully.

1:38: I remind myself to call my mother in law and do so while there is relative quiet.

1:39: I pass by the bathroom as the phone rings. She answers.

1:40pm: I walk past the bathroom that I had cleaned thoroughly with bleach that morning and realize the pervasive odor is NOT Clorox any longer. The phone rings again.

Also 1:40 pm: My intention to greet her with, “Hey! Quick question for you. Should I grab anything special when I get groceries tomorrow?” comes out as “Help! Where should I look for missing poop?”

1:41 pm: I silently wonder if she questions why her only son chose to marry me, an individual who clearly needs help on several levels.

1:42-1:51: 6 Clorox wipes, soap, a scrub brush, a young priest, an old priest and holy water are used in the cleaning and exorcism of the toilet and potty-seat that only William uses.

1:51-2:34: My mother in law remains on the phone with me as I clean and conduct a losing game of Hide and Go Seek. William stands by, giggling.

I examine all fundamental evidence: ONLY William uses that potty ring. He clearly pooped. He flushed. His dismount resulted in a mess, however there is no other evidence.

HOWEVER, I have never witnessed him ascend the throne or disembark without help. The step stool sat by the sink, where he often moves it to try to wash his hands. He certainly could move it, although such events have never before been witnessed.

Behold, the REAL GAME of THRONES for every mother of potty training boys.

gameofthrones

 

2:35: I give up my very thorough search, consoling myself that I would be able to smell any missing pay-dirt. 3 teachers and 2 nurses have informed me he is memorable as the most foul load-producer they have encountered, which I take as a professional assessment.

2:36: I call a friend to validate and confirm this encounter as a success. She does.

2:37: I reward William with M&M minis. He giggles, quite pleased.

2:38: A mighty thud resonates from the upstairs, followed by a scream and crying. This rare occurrence happening twice in one hour feels like watching two comets colliding.

2:39: Jonathan reveals that he was flying through the air NEAR the coffee table and tripped. Blood is pouring from his lower lip.

2:40 His loose tooth remains in his mouth. His permanent tooth is undamaged. Less daunting streams of blood continue.

jonmouthinjury

2:41 Jonathan shows me bruises to his thigh, his cut lip and his banged head. He does not confess to jumping off of the table but informs me a medical professional and a punishment are not necessary. He eyes the table incredulously.

2:42 I return upstairs, relieved that William is playing, although he is once again nude.  I put his Pull-up and pants back on for the 17th time today. I sigh.

2:43: I receive a text from a friend that she is ill and cannot come to dinner. I console her, shun the germs of the infected, decide to eat Breakfast Casserole for dinner and put William in a playpen long enough to recount these events.

2:53: An hour and thirty minutes has passed since the initial cascade of events.  It feels much longer as I recount them.

 

Perhaps after dinner and bedtime I will realize how monumental it is that my 4 year old who has endured such physical setbacks has used the potty totally unassisted. It will seem unbelievable despite my efforts of the past 9 months. It seems late to most and miraculous to others. All I know is, it is time for breakfast…for dinner. It’s about time.

Swim Lessons Part 2: In which the real lifeguards are Nutella and a Fairy-Grandmother

The power flickered the lights overhead following the lighting’s flash, distracting her from recounting the battle… but the tale of victory had to be told. Undeterred by the police sirens harmonizing with pounding rain, she began typing steadily– for the heroine of this tale had to be praised. This beacon of hope shall stand forever in my mind as the Statue of Liberty– left hand aloft holding Nutella and proudly wearing the crown of Grandmotherhood on her blonde locks.

Behold, Lynette.

On the Sunday following the First Swim Lesson (shudder), Lynette found me at church and offered me a hug, encouraging words, and a cookie. She then ushered my firstborn into a new Sunday School class in which he thrived and left me proud and dumbfounded. Lynette had a military husband, twin sons, and has four grandchildren but it is her current service for which she is awarded the extended Medals of Motherhood Accommodations.

On Friday afternoon after a family picnic function in which my sons ate well and remained entirely clothed,  I received a text message that read:

“Happy Friday! Hope pants have stayed on in restaurants since your trip to Chick Fil A. Are you doing swim lessons tomorrow? I’m available and would love to try to help you. Just let me know when and where…meet you at the pool or go with you or follow from your house. Take Care!!”

I reread this message several times, trying to decipher the meaning through the chorus of angels coinciding with the sound of the Cavalry arriving from my late grandfather’s westerns.

I called and planned to say “No, I can do this…thanks…we’ll manage” but instead I gave a desperate cry of “YES! I have no idea what I need, but PLEASE be there if only to glare at the parents who would judge me!”

Twenty-four hours later she walked up to my silver van. She donned a black cover-up over a bathing suit and had a bag of tricks under her arm. Mary Poppins could not have presented more perfectly.We walked in proudly.

William’s instruction began while Jonathan took considerable coaxing. Lynette clocked while I speed-waddled. Fifteen minutes later he was showered and in the pool. At the end of the session William had made great progress, Jonathan was sobbing but cooperating slightly in his kicking and bubble blowing skills, and his sister had offered him a swift in-utero kick to the groin as a response to him wrapping his legs around my belly a bit too tightly in the deep end.

Lynette took William out during Jon’s lesson, dried him off and introduced him to a Nutella and breadstick snack pack.  I found him with remnants around his mouth as they both smiled like Cheshire Cats. She stood by me and wrangled the children while the instructor made suggestions I could not do and asked if my husband could help… the questions EVERY military wife dreads, whether the man is gone for the weekend, month or forever. Lynette understood and was there to keep the boys contained while I stripped my wet suit off my very pregnant belly in an involuntary aerobic catastrophe that would make Jane Fonda feel pain for the gain. What more could I ask? Oh… and she took pictures of it all to show what a great job we did. She saw beauty while I felt I was drowning.

swim class will

swim class

 

 

We remained in the water 18 minutes longer than last week and performed some skills. Everyone’s bathing suit remained on and no one pooped while in the pool. We left chlorinated and happier than last week, which is enough for me. Progress is progress, no matter how slow.

If you can, be a Lynette for someone today. Just show up, with snacks if possible, and just be available to love and lend a hand through hard times. My sons can’t wait to see Lynette at church. Her husband is a hilarious deacon who calls to check on us every Saturday without fail. I suspect it is to hear about the latest antics.  THIS is what the Church is supposed to do. THIS is a Titus 2 Woman.

 

The best part is, tomorrow she will have hugs and cookies waiting.   “Go and do likewise…”

God Bless Lynette.