The separation never gets easier.
He stayed so chill, fought the needle and then breathed (after 27 minutes of struggle).
And I thought he was unconscious already when his brown eyes fluttered up again and he sighed “I love you so much and I’ll miss you, Mom.”
Is it possible to be totally brave and vulnerable at the same time?
Sleep sweet, my boy. ❤️
From January 8, 2018 – 5:46 PM…
Joy comes in the morning, but sometimes it comes in the evening too…
This boy.
It was a long, exhausting day but there is GOOD NEWS.
Chase remains NED! NO EVIDENCE of DISEASE!!
The cavernomas grew again – those small spots they’ve been monitoring in the brain – but so far, nothing is hampering his day-to-day life, so even surgery gets to wait for a bit longer.
The bottom line? More things to watch and monitor, but none of those things go by the name “cancer“, and so we’ll take today as the great blessing that it is.
This year has seen us through many, many things and all along the way we’ve prayed for the strength to choose joy. To that end -the joy part, or in this case, the hysterical laugh-until-you-cry part- I’ve compiled a series of status updates from my Facebook page; all of which were posted in 2017.
I chronicle these things (and have done so for some years) because life is too short and childhood is even shorter and there are too many parenting moments when you’re faced with the choice of either laughing or melting into a puddle of tears — so, as much as possible, we choose to laugh.
Many of the scenarios include personal hashtags: from the most common – #lifewithboys, to the most funny [playing off of our secret parenting fear that our children won’t get college scholarships] #notscholarshipmaterial, to my desperate need for mental awareness before dealing with early morning conundrums #givemecoffeeorgivemedeath – and this year, there are a couple guest appearances from #TheQuoteableEdPoole and Bob Ewoldt with some #MarriageGoals!
We’ve asked you to walk many hard things with us, so, for a brief moment, as we close 2017, enjoy our “normal“…
“Hey Mom, is there a list beyond the ‘Naughty List‘? Like, ‘The Atomic Naughty List‘? We were just wondering. Oh, and also, the elliptical is broken.”
You might be a mom of boys if your first thought on seeing a small child running through the room with underwear on his head is not “Why are you wearing underwear on your head?”, but rather, “Are they clean?”, and “They shouldn’t cover your eyes while you’re running!”
Reasoning And Logic With Boys — Actual: “You can’t go outside to play until your room is clean.” Philosophical interpretation: “Open the windows and pitch everything out so we have a clean room AND have to go outside to pick things up.” #LifeWithBoys #GoDownWithTheShip
Just helped a child find his backpack. It was on his back. #SchoolForTheGifted #NotScholarshipMaterial
Well, well, looks like your #mondaymotivation arrived a day early. You’re welcome. #TheQuoteableEdPoole
“Mom, it’s not really hard to drive the car in the dark. You know what’s really hard? FARTING IN THE DARK…I just did it right now.”
”But what do you mean that we don’t have any dynamite for me to use? Are you serious?” #LifeWithBoys
Because really, why WOULDN’T you put your toothbrush on the hood of the car? #LifeWithBoys #NotScholarshipMaterial
“Just because I’m quiet doesn’t mean I’m getting into trouble. Also, I definitely have nothing in my pocket.” #LifeWithBoys #SmoothCriminal
“But we were only dusting for fingerprints…” #LifeWithBoys
Overheard: [sound of a running tackle] “GIMME BACK MY PANTS, STINK BRAIN!” #LifeWithBoys
Today the 3rd grader wrote his student council campaign speech on RESPONSIBILITY …on the bus on the way to school. #ParentOfTheYear
“In the future, I’d prefer it if you wore pants, shorts, or really anything on the lower half of your body when you come to the dinner table.” #LifeWithBoys
When the answer to “But why did you pin him to the ground?” is “Because a good captain always goes down with his ship”, it’s hard to argue. #HonorAmongThieves #LifeWithBoys #BandOfBrothers
Don’t pee in the bushes.
Don’t pee on the carpet.
Keep your hands to yourself.
Less talking, more working.
Don’t pee on your feet.
Brush your teeth.
Don’t punch each other in the [male anatomy].
Don’t take your clothes off in public.
Don’t take your shoes off in public.
Take your hands out of your pants.
Stop bothering your sister.
Stop punching each other.
“Well, I did not know that it was your very new lipstick when I drew all over the toilet. It was only a dollar, right?” #LifeWithBoys
The problem with Sing (the movie) as that you catch the five-year-old belting out “I DID IT MMYYYYY WWAAAAAYY!” …from the other side of the BATHROOM DOOR. #LifeWithBoys #CleanUpInAisleThree
“Mom, did you see my gnarly dive? By the way, just so you know, ‘gnarly‘ is a really, really old fashioned way to say ‘awesome’.“
“Well, Mom, if you think about it, the pig mom in Sing had like, twenty-five kids and you only have, um, four, so, um, really, it could be a lot worse. So, if you think about it, you really don’t have that much work to do at all. But I am hungry now. Is it time to eat?” – Child who does not want to see his next birthday
“But I’ve searched EVERYWHERE and my backpack is NOWHERE in the WHOLE house!” Says the boy as he is walking down the stairs and trips over his backpack. #LifeWithBoys #PoeticJustice
When the answer to the question is: “Because we are staging a fake old fashioned bar fight“, you know you live in a testosterone-rich environment. #LifeWithBoys
When one decides relieving his bladder is better done in the middle of the front yard than behind a closed bathroom door. Help me, Jesus… #IntoTheWind
“So Mom, just to clarify, did you tell us we can’t jump off the bunk bed ladder or off the dresser? I’m just wondering…because. Yeah, just because.”#NotScholarshipMaterial #SmoothCriminal
“Mom, I’m sorry I didn’t make it to dinner earlier. I was stuck in a box and there was a little stuck-related delay.”#LifeWithBoys #NotScholarshipMaterial
“Hey! Did you know women have a protein in their brains that make them talk more? This is why women are way more chatty than men. There’s science for the way you are.” Bob Ewoldt, on this, his last day of life #MarriageGoals
“It’s not fair that you’re making a big deal about him! He’s not the only one who got hurt, Mom. I hurt my knuckles when I punched him too!”#LifeWithBoys #PeeAndSympathy
Clearly, nobody’s an “enploye” of a cleaning service, “no adult” would survive, and the “no dogs” thing must be because a rabid pack of wild beasts is already in residence. #SchoolForTheGifted #LifeWithBoys
Bedtime diversion tactic #43782: “I couldn’t hear you because I am really just having some bad hearing right now.” #PointsForSelfAwareness
“Hey Mom! Can I have a lighter? I’m making a fire, but don’t worry. I put the pile of sticks together so the fire will be controlled…and I put them in the deck…oh, wait…” #NotScholarshipMaterial #CrashAndBurn #LifeWithBoys
“Not a ‘court-hammer-thingy’! It’s called a gavel and I don’t care what you say… you don’t need one while you’re lying in bed trying to go to sleep.” #ThingsIActuallyJustSaid #LifeWithBoys
“If you play aggressive sports with a guy, they say it’s a sign that you like him…or, that you have brothers and aren’t afraid of guys…but mostly just that you like him.” – The Gospel According to 5th Grade #SaveMe
“Mom! Come quick! I wocked Aidan in the gawage and I need you to wet him out! But wet me start wunning away first.” – The Child formerly known as Karsten Ewoldt #LifeWithBoys
“Even ninjas have to be kind to their sisters.” – Life lessons with little boys
“Well, um, I was about to say that I *am* really responsible, but then I remembered that thing about the matches. Oops.” #LifeWithBoys
“I really don’t care that you didn’t lick it first. You are not allowed to stick Tootsie Rolls to the walls – science experiment notwithstanding.” #QuestionableEvolution #LifeWithBoys
Child One (singing): “Be kind to one another…”, Child Two: “No! You don’t know how to sing it! It’s ‘Be kind to your other mother’!” #EPICfail #notscholarshipmaterial
“Well, we weren’t really drawing on each other as much as we were just throwing the markers without caps. And also, we weren’t wearing any shirts, so the markers just sort of got on our skin. Accidentally.”#LifeWithBoys #GiveMeCoffeeOrGiveMeDeath
The words you can never quite UN-hear: “Mom, the boys have saline flushes and are using your milk foamer to remove Chemo Duck’s stuffing.” #RIPChemoDuck #LifeWithBoys #AnesthesiaSTAT
[early morning tears] “Mom, wake up! I’m crying because Darcy doesn’t respect my genius.” #GIVEMECOFFEEORGIVEMEDEATH
Darcy: “Wow, Aid washing his hands? That’s like, SO ironic.” Me: “How so?” Darcy: “I don’t really know, but it seems like maybe it could be. But wait, what does ‘ironic’ mean again?” #LifeWithTweens #JesusTakeTheWheel
One of the scariest nice weather phrases in the English language: “Um, we’re just digging, Mom. Um, don’t worry. Everything’s okay.” #LifeWithBoys
Me: “Son, that was unkind and out of line. How should you respond to your brother?” Child [faces sibling with a resigned sigh]: “Um… BACON??“#LifeWithBoys #BaconFixesEverything
Me: “Seriously, son? Do I look like I was born yesterday?” Son: “Well, not really. You actually look like you were born about a thousand years ago.” #LivingOnTheEdge #PointsForHonesty
“Hey, Mom, wanna see if I can slingshot your coffee mug while it’s still in your hand?” – When Spring Break Becomes Hazardous To Your Health #SpringBroken #LifeWithBoys
“But I kicked him in the head because I loved him!” #LifeWithBoys #BandOfBrothers
[holds up the Poison Control add in the paper]: “So, wait… if you want to poison someone and you need help, you call them??” #NotScholarshipMaterial
“Well, Mom, it’s YOUR basement, so YOU should have to clean it up…NOT us.”– Anonymous Child with a DEATH WISH #WorldWarBasement
“WHAT?! You want us to clean up the WHOLE basement?? What are we?? Your SLAVES?!” #WorldWarBasement
Karsten: “Mom, what does ‘you ruined my life’ mean?” Me: “It’s when literally every single thing goes wrong, your life is completely scarred, and you can blame it one single person or event. Why?” Karsten: “Oh, I see. Well, because you kind of ruined my life with that breakfast.”
This afternoon’s coffee — Brought to you by the mischievous bald who locked all the house doors leaving his brother to wet his pants all over the front porch. More laundry. My favorite. #LifeWithBoys
“Well, actually, I should get something special because I was very, very on my good behavior until I threw the dish at Aidan’s head.” #BoyLogic #LifeWithBoys #SerenityNOW
“I can smell fear. But actually, since you just brushed your teeth, it’s mint fear.” – Karsten #TheHygienicTerrorist #LifeWithBoys
“Seriously, how many times have I told you not to lock your little brother in the coat closet?!” #LifeWithBoys
[whine] “But WHY do I have to wear a shirt to school?” #GIVEMECOFFEEORGIVEMEDEATH
“So, Mom, I’m thinking of becoming a professional singer. How do I get an agent?” #GIVEMECOFFEEORGIVEMEDEATH
“Don’t worry about that sound, Mom. It was just me dumping out all the Legos. Everything is okay.” #LifeWithBoys
No. I know you’re sad, but you can’t wear your swim goggles to school.” #GIVEMECOFFEEORGIVEMEDEATH
[whining tears] “I just walked into a door…again.” #LifeWithBoys
“Well, we are already done with breakfast, so we are pants-ing each other.” #LifeWithBoys #GIVEMECOFFEEORGIVEMEDEATH
“If a boy looks at you and smiles, like, literally looks at you, or if he talk to you even a little, it means he probably likes you.” – The Gospel According To Fifth Grade
6:40AM [crash] “Mom! I just threw the shoe box with tissues* at a bug, but now I need my light saber! I will rescue you. [crash] Don’t worry!” #GIVEMECOFFEEORGIVEMEDEATH [*Chase’s words for the tissue box]
And then Chase purchased himself FOUR KAZOOS. The End. …of life as we know it. #GIVEMECOFFEEORGIVEMEDEATH
“It was just your imagination, Mom. We aren’t really getting in trouble. Don’t worry.” #LifeWithBoys #ItsAnIllusionMichael
“Mom, I just want you to know that I’m the fastest gun flinger in the West.” #NotScholarshipMaterial #CoverYourHead
“Well, I hit him, but it was an accident…or, maybe it was an acciDON’T.” #LifeWithBoys
“Shut up! I’m trying to make things right with you, chump!” #SensitivityTraining #ConflictResolution
6:30AM – “Mom, I’m just waking you up because we dumped all the Legos and now the family room looks like the inside of a trash can.” #GIVEMECOFFEEORGIVEMEDEATH
“Um, I’m just wondering, um, where you can buy parachutes? …um, for no reason.” #LifeWithBoys
“Can sisters sign their brothers up for the Air Force?” #LifeWithKids
“Mom, if I explain the biosphere to you, can I have a dollar?” #KnowledgeIsMoney
When the answer to “Has anyone seen my car keys?” is “Yeah, I got angry and put them in the mail box.“
“I’M NOT GOING TO TELL YOU AGAIN… PUT DOWN THE SWORD AND GO TO BED!” #LifeWithBoys #SerenityNOW
6:30AM [shoving a paper in my face] “Mom, I used the standard algorithm on this equation. The answer is 1.1, right?”
“But I was trying to turn off the light switch by shooting it with my Nerf bullet…” – Boy-Related Crisis Explanation #3,872
Signs you might need more coffee in your life… “Mom, can Charlie [the stuffed dog] talk to you about the geosphere?“
And now it’s time for another round of “Unsolicited Opinions With Chase”… “Mom, you can be annoying sometimes when you speak French.”
Is playing a harmonica at 6:30 on a Saturday morning justifiable grounds for selling a child on Ebay? Asking for a friend… #LifeWithBoys
“Mom, it took me FOREVER to clean!”…”You cleaned?!”…”Well…NO. But if I did, it would take me FOREVER.“
“Mom, I’m worried about dinner…it smells like one of Karsten’s farts with a pinch of salt.” #NewRecipeFTW #LifeWithBoys
“Les, take a picture of me with this lollipop so I can put it on Facebook and caption it: ‘two dum-dums’.” #FatherKnowsBest #Goals
[after a series of visits to the ER] “You’re bald!” … “Oh yeah, well your forehead is glued together!” #MedicalBurns #HeadCases #NotScholarshipMaterial
[whining] “You want me to eat zucchini for dinner? Can I call my lawyer??” #LifeWithBoys
“For the love of sanity, don’t lick your sister’s arm!” #LifeWithBoys
Blah, blah, blah, anecdotal insanity ending in “…so, I pee’d in the bottle!!” #CensoredLifeWithBoys #BleachIsMyBFF
When all your “save electricity” lectures finally take root and you find the crockpot dinner had been off for hours to “help”. #SerenityNOW
[The Bald being dragged out of the sermon] “BORING! BORING! BORING!” #LifeWithBoys
There are so many crazy things that happen during the year and I often don’t get time to post on social media, but wow, these kids make me laugh, so here are a few never-before-seen quotes that come to mind…
**THE BONUS ROUND**
“Mom, do you think cats can speak English?” #NotScholarshipMaterial
“No nudity in the Christmas pictures, please.” #LifeWithBoys
“If I told you that I had an eye patch, would I still be in trouble?” #SmoothCriminal
When the answer to “Can anyone tell me why Karsten’s glasses are outside in the hostas?” is “Well, I got really mad and I threw them out the bedroom window.” #BandOfBrothers #LifeWithBoys
“Mom, do we have any duct tape? We’re building a trap for Darcy.” #SiblingLove
In addition, anyone who has ever had brothers or sons knows that there is an entire genre of quotes, hilarity and insanity that is not always fit for public consumption, but on the occasion of the end of 2017 and the start of 2018, I give you a special, somewhat edited, select few from…
**THE CENSORED LIFE WITH BOYS**
“Mom, we’re just playing a game. It’s where we see who can hit each other in the [anatomy] the hardest.” #LifeWithBoys
“Mom, I kind of might have forgotten to open the lid when I pee’d in the bathroom just now.” #LifeWithBoys
“Son, I’m not going to tell you again. I don’t care if your [anatomy] itches…get your fork out of your pants.” #LifeWithBoys
[referencing a near miss with a zipper fly] “And that’s why you shouldn’t go commando.” #LifeWithBoys
Goodnight and goodbye, dear old 2017…
Moment by moment.
“The lines have fallen for me in pleasant places; indeed, I have a beautiful inheritance.” Psalm 16:6
You were our surprise baby with your surprise personality and a most surprising life ahead of you that we could not have imagined if we’d tried.
We would apologize for our lack of expectation, but somehow the silly, crooked grin every time you perform the unexpected makes us wonder if you sort of just adore shocking us all.
Like living when they thought you would not…
Like walking when they thought you would not…
Like talking when they thought you would not…
Like a dozen other things that started as “NOT”, but you said “WATCH ME”.
You will always defy expectations, our sweet boy.
And somehow it’s only fitting that your cancer diagnosis includes the word “atypical” – because that’s exactly what you are and we love you for it.
Five years ago this morning, I doubt very much that five months were expected, let alone five years, but of course, you showed them and you continue to show us.
You will never have the easy life, my darling Chase, but you will have the precious life, for sure and always.
Whatever may pass and whatever lies before you…keep singing when the evening comes.
We love you,
Mom and Dad
Oh, dear ones, thank you so much for all the love and prayers today!
First we were blessed by a modified testing regime – minimizing Chase’s seizure risk and bringing the test closer to three hours instead of four or more.
Chase is surrounded in the intense search for a working vein.
Then, we were completely overwhelmed by nearly two hours of IV drama – at one point, Chase’s bed was surrounded by vascular access specialists, child life counselors, nurses, and parents all trying to save an access point after four failed attempts.
And finally, we were so thankful to get to see lots of wonderful nurses and friends who cared for Chase during his chemo days.
Chase and his nurse today – one of his very first nurses ever – Meghan
Knowing me, I’ll write more later, and for now, we wait (our favorite) for results and a plan.
And how I wish you could have seen the boy once the pain and tears of all the needles were behind him. He practically swaggered through the halls, ordering people around and smiling with an engaging “Heelllooooo, Ladies” to any and all nurses who passed by.
It’s been quite a day, and it’s a good thing he’s so charming.
Answer the most heart-breaking question of all, because it somehow always overflows on a hospital day: what if I get the cancer again?
Chase uses his “name stamp” (used for signing books) to stamp Dr. Lulla’s hand
How do you explain that hours-long, intense testing has nothing to do with cancer? …yet has everything to do with cancer? It all feels the same when you’re a little kid. The same rituals, pains and fears; never mind that there may or may not be atypical cells attacking. It all feels cancerous and scary when you’re seven.
But tomorrow morning isn’t about what’s happening. It’s about what’s not happening. Chase’s body doesn’t want to grow on it’s own anymore, so for the first time in a long time, he’ll be admitted to the day hospital and they’ll attach needles to inject medicine and more needles to take blood. And then they’ll do both over and over by the hour until they have enough to prove that cancer damages. Because the sad truth is that there’s no funding if it can’t be proved on paper, submitted, filed, bottom-lined, than our reality is just that: ours alone.*
Talking to new friends about hope
There is no self-pity in that truth, I promise. There’s shock and sadness; a deep desire to be known, but not pity. Not now, not today. Because I believe above all things that this tomorrow and all the days have a purpose we do not yet know and cannot yet appreciate fully. This test day tomorrow is just more gazing into the mirror and beholding an unclear, somewhat painful reflection.
We will breathe through the pain of damage and the desire for wholeness, but the heartache is so very real, and right now, Chase’s fear sits on the surface of, well, everything. He has struggled all week, including throwing off constraints where and when he can (like refusing to get on the school bus) — anything and everything to try and find control when he has so very little.
A dad and his boy
Will you pray for Chase tomorrow? We’d so appreciate it.
❤️
