And now, this one… Only one year and five days separate their births and they were more like twins than not until cancer changed the story.
He spent his fourth birthday sitting in a hospital, recovered from his own tonsil surgery without a mom at his side (because it happened the week after Chase’s brain surgery), and used to stand by the couch and hold out his hand to the white, screaming mess of his brother, saying “It’s okay. I will hold your hand. I am here for you.” He remembers none of these things, but I do. He doesn’t know why – to this day – the sound of Chase screaming makes his own eyes well up, but I do. His soul and blood are tied to the bald boy, whether he likes it or not.
His heart breaks with the need for justice which makes him resentful sometimes and powerfully protective all the other times. He is guilt and love; rolled into one. Like Karsten and Darcy too…there are days he’s ready to end Chase, but he will gladly slay anybody else who tries. And like his father before him, he holds so much more in that head then ever comes out of his mouth.
And this one… well, when Chase goes all you-and-what-army, he does so knowing this one stands behind him every time. If you listen closely, you will hear him say Chase’s strength and the look on his face is clear – he has no idea that Chase’s strength is because of him.
The life of a cancer sibling is often a silent, supporting role. It has to be, and they do it so well. But here, in his own words, is a little of Aidan (with some off-camera Chase interaction). This is raw, unfiltered, uncut – All heart, all sibling, all laughter, all pain, all in.
Moment by moment.
Note: The term “Bacon” is something Aidan uses to make Chase laugh when he gets angry. As you can tell from his words, Chase’s low executive functions play a big role in Aid’s relationship with him. Apparently, “Bacon” is a way to help them cope and I find I’m okay with that. 🙂
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
ENCOURAGEMENT: /noun/ the action of giving someone support, confidence, or hope.
Giving support to others not only requires mental and emotional energy, but also and often a shade of vulnerability. I have to open myself up to help someone else. And this aspect of living in community, well, it can get complicated when I’m heartsick and weary. How can I possibly care for someone else when I feel in shreds…when my family feels shredded and resourceless? I suppose I expect to care and serve others out of my own excess of peace or joy. So how do I give joy when I don’t feel it in my life…when there is seemingly no excess? And how on earth do I teach my kids joy in the atypical?
I worry for the other three all the time: how will Chase’s cancer diagnosis harm them? How has all of this defined them or broken them? …perhaps even in ways we can’t see or won’t know until they’re adults themselves? (2:00AM thoughts that push the ‘panic’ button)
Will they struggle with what to believe? …with who and how to love? …with their life purpose? And how many of these struggles will they be able to pinpoint the birth of in a sibling’s terminal illness, subsequent struggles, and the too-often mentally, emotionally, or physically absent parents who should have been at their sides.
I want to fix all of these things before I even confirm their brokenness. I want to pre-empt all the pain and cushion it. And I acknowledge in my heart and even as I see with my own eyes that it often isn’t the big moment kicking in the teeth of their precious hearts, but the little one. If L-O-V-E is truly T-I-M-E, then it really is a moment by moment fight for the good to win through all the pain and craziness.
And here’s what I’ve found: there is so much I can’t take away from them, but there are things I can give them – almost like tools to build or weapons to war. Because life may be atypical, but it can still be incredible – it may not always be “good”, but it can still be right.
“Share each other’s burdens, and in this way obey the law of Christ.” Galations 6:2 NLT
Share.
Obey.
We were created for this. Despite the vulnerability and pain, we survive as we share the ups and downs of life with each other.
What does this concept look like in a feet-on-the-ground, eyes-open-wide way ? And what does it especially look like when the burden is a life shadowed by complicated illness and the burden carriers are little children?
FaceTime in the hospital
Notice Others: A huge part of developing encouragers is fostering awareness of those around you. Go around the dinner table and have each person say something they like or appreciate about the person to their left. This makes us have to consciously consider the good in others, and as we see this, we often see their hard things to comfort too.
Seek To Relate: “Do to others as you would like them to do to you. (Luke 6:31 NLT) This goes one step deeper than just seeing the person next to you. Actually try and put yourself into someone else’s shoes. Try to feel what they feel. This can be complex and even offensive in painful moments, but painfully easy and wonderful in life’s joy moments. And perhaps, there will be a fantastic and interesting discussion as you tie what your kids know and feel to what someone else close to them might know and feel.
Be Authentic: There are few things that can’t be worked through by talking to each other honestly and openly. If we genuinely don’t know what to say, I believe it’s okay to express that inept or powerless feeling and talk it through. This is often the most vulnerable moment, but also the most rewarding for in opening my heart, I invite the other person to open their heart as well.
Celebrate Victories: Some victories will look like winning and others will be simply refusing to let the darkness, weariness, stress, or anger in. To feel the pull of pain, to deny it, and to choose joy or hope instead is a staggering victory and should be celebrated as such. (These moments aren’t always deep and nuanced. For some people in our family, this is as simple as forcing themselves out of bed the morning after a long day in the hospital.)
Just Stop: Sometimes I just have to stop and sit. Gather up my precious babies onto my lap, or under my arm, kiss their heads and tell them I love them. We cover ourselves with a blanket and just snuggle for a bit. Then, I breathe deep and say it aloud: “You guys, let’s just take a minute.” Because nothing tears at the heart and mind like constant, unabated stress and sometimes, miraculously, the petty fights and little hurts resolve themselves as we breathe deeply and remember love, not hate.
Just Go: Yes, sometimes we need to stop and breathe. However, other times, we need to get up and go. Hang the schedule and the clean house or the project that’s still not done… just go for a walk together, go to the park together. Or, even better, go check in on a neighbor, take popsicles to someone who just had surgery, take coffee to Daddy at work… These small things, especially the things that allow us to serve others are a constant, tangible reminder that we were not created to function in a void and that our personal pain, stress and hardships do not comprise the only story in the world. Breaking down the boundaries, meshing with others, reaching out – all of it – is like water on the tender growth of sensitivity.
Orchestra concert cheerleader
And dear ones, I hate writing list points because it feels like accomplishments checked off and won. The truth is: we are broken. We fail at these ALL the time, scratching each others’ eyes out with our words and our selfish hearts just as often as we hug and bind with joy. But I’m writing these things down all the same because I need to remember, and maybe, just maybe, you’ll find something encouraging here too. You are loved.
Moment by moment.
“All praise to God, the Father of our Lord Jesus Christ. God is our merciful Father and the source of all comfort.He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.” 2 Corinthians 1:4
“Okay, let’s just get your temperature and then you’ll be done.” The nurse turned from the blood pressure cuff attached to Aidan’s skinny arm and grabbed the thermometer, shoving it into a sanitary plastic sheath with a soft click.
“Open wide . . . under your tongue . . . now close.”
The room was still as Aidan sat tall, silent, and brave (despite his strep throat) on the end of the exam table.
With an unusual calm, Chase pulled himself out of the chair against the wall where he’d been sitting next to me, and he went to stand closer to the table – in his older brother’s field of vision.
“I’m here, Aidy,” his pet name for his near twin from the earliest days of learning speech. “I’m here if you need me. It isn’t scary, but if you get afraid, I’ll be right here.” Nearly the identical words a three-year-old Aidan had spoken countless times over a two-year-old Chase during myriad blood draws and hard hospital days. “I’m here.” I choose to put myself next to you and try to understand.
Cancer starts as these tiny microscopic cells that go terribly wrong and it wrecks so much life. It makes me angry to consider its senselessness. But in this moment of family practice and strep throat and a check for vital signs, there was yet another glimpse of beauty in the devastation they’d caused. The boys have been bent by it – we’ve all been bent by it – but in those times when it really counts, especially when it comes down to a doctor’s office, they bend toward each other. They reach with comfort and love for one another. And care for each other has come from the long years of fear and pain.
I believe there will always be something good that comes of it all and that the God-purposes far exceed the effect of microscopic cells. . . moment by moment.
“You intended to harm me, but God intended it all for good.” Genesis 50:20a
If not, I highly recommend it. And even if so, feel free to watch it again… We have been so blessed to partner with the St. Baldrick’s Foundation this year and are continually thankful for the platform they give us to share Chase’s story with so many.
-MbM-
[Our deepest gratitude to the incomparable Matthew Lackey for his mad, crazy video skills. Also, a huge thank you to both Jane Hoppen and Kristen Thies for all they did to put together the finished product and the time spent filming it.]
