Early tomorrow morning, Chase will step into a room, accept needles, give blood and drop into unconsciousness for a two hour MRI, kicking off a month of appointments and exams.
Everything is coded as routine, and so it is, for there’s no emergency, and yet it’s anything but routine for my sweet boy.
We live the strange survivor conundrum that is this: the older he gets, the more physically easy a test may become, but the greater the toll to his emotions.
He is so nervous and got to the point last night that he told me that it wasn’t just about the needle, but that he wished there had never been a seizure or cancer or any of it – he wished that he could take it all back and make it different – and then we both cried because his words are in my heart all the time.
And yet, we find incredible joy in the journey too. So as I thought through what I wanted to share with you this MRI Eve, I thought of this little video.
You guys, THIS.
Chase was given an iPad six years ago when he began treatment and it finally, irrevocably died this past Fall. While we have never wanted for anything, there is no extra money to go buying new iPads on the regular, and I found myself crazily mourning the loss of a screen with so many appointments upcoming – not to mention, it helps Chase to stay focused on the drives to the hospital so that he doesn’t start vomiting (a neuro/mental holdover from chemo days – he sees the Chicago skyline when we go to the hospital and starts to vomit).
And then, there was a text from a friend with the words “It’s all taken care of…”
And then there was an Amazon box on the front step.
And then there was this video, in which my darling boy with all his challenges felt the right emotion in the right moment – a thing I have hardly ever seen and my gift in witnessing it was greater even than what lay in the box for Chase.
And it knocked me over.
So THIS.
On the eve of the MRI, be a part of our joy and thankfulness.
And if you picture Chase tomorrow morning, know he’ll have a beautiful, fresh screen to help. And then say a prayer for his bravery to hold in the moment by moment of this cancer life.
Everlasting gratitude and love to the Anthony Rizzo Family Foundation to taking a cancer diagnosis and turning it into a blessing for so many. Thank you for seeing our children for who they are and what they can do and then never resting until their quality of life is the best it can possibly be.
Once again, there are less than five hours left to this year of 2018. This year has seen us through many things and all along, we have 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 few status updates from my Facebook page.
I chronicle these things (and have done so for many years now) 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, despite the changes that come with age and time and …maturity (?) …we choose to laugh.
Many of the scenarios include personal hashtags: from the most common – #LifeWithBoys, to the most sarcastic [playing off our secret parenting fears] #NotScholarshipMaterial, as well as a few quest appearances by Bob Ewoldt (husband) and Ed Poole (grandfather) –
“These houses are for dummies? They look pretty good to me, Mom.” #NotScholarshipMaterial #FlipFail
“Mom, if Aaron Rodgers was my parent, he might do a better job than you. Maybe.” #LifeWithADeathWish #SelfEsteem
8:30PM: Don’t forget the field trip money tomorrow, okay? Aidan: Okay. 6:50AM: Aid, the money… Aidan: I’ve got it. 7:32AM: Aidan, are you sure you’ve got the money? Aidan: I’m sure. I’ve got it, Mom. 8:38AM: Final warning… we are getting in the car. Aid, are you sure you have the money? Aidan: What money…? 8:39AM: Are you kidding me, Son? Aidan: Totally! I’ve got it, Mom.
NARRATOR: But Aidan didn’t have the money… #SchoolForTheGifted#
“Hey! Just because I stoled it from you does not mean you get to use your angry voice with me!” – yelling #Irony #LifeWithBoys
“But you never *specifically said* I had to do my required reading in English.” Come se dice ‘grounded’ en espanol? #VidaConChicos #NoMaterialDeBecas
** Note: no creativity was squelched in the making of this post. The only thing curtailed was spending 20 minutes figuring out how to butcher “I want ice cream” in Spanish. **
“You never let us do anything fun ever and you’re probably the worst, meanest mom. ~ A completely logic-based rebuttal on being found throwing the football in the living room…again. #Grounded #LifeWithBoys
“He’s the best punching bag I’ve ever had.” ~ See? It’s not that hard to think of a nice thing to say about your brother. #ThisIsWhyWeCantHaveNiceThings
“Oh good grief, I swear I’m going deaf. I can’t see anything anymore, Mom. I mean it.” #DramaTeen
Hormonal Tween Sister: “I’m going to e-x-p-l-o-d-e!”
Accelerated-Education Brother: “You’re going to explore what?”
TFW the football game is very stupid because there’s no tackling allowed and then you tell the ref he’s stupid and then, because the ref is also your dad, you get ejected from the game and grounded. #KeepingItReal #Struggle #ParentingGains
When your umbrella has a lightning rod, or perhaps, your lightning rod has an umbrella.
Mom: “It’s rather a serious design flaw.”
Me: “With Dad or the umbrella?”
Mom: “Yes.” #TheMemorableEdPoole
“But we were doing trust falls…!” #LifeWithBoys #TrustFails
“I know we’ve never explicitly discussed your use of kitchen tinfoil for the making of an ax…to chop off your brother’s head…and yes, it does look very realistic and you’re very creative, but… hey… where did you get police tape…?” #LifeWithBoys
“But you said we couldn’t play ball in the house with a ball…you never said we couldn’t play soccer in the house with an apple.” #NotScholarshipMaterial
“I’m not saying we would actually listen to you more, but it’d probably help if you used a megaphone.” #LifeWithBoys
Life with boys in a nutshell… August 7, 2018
[brings me an envelope marked with school district official lettering, dated April 26, 2018]
“Here, Mom! This was in my backpack. Um, you should probably open this RIGHT NOW because I think it’s important.”
“Are you from another planet? Do you think life is all about fun? THIS IS NOT A FUN HOUSE. Now, go work!” 3:14PM – The exact moment I turned into my father.
Suggest that the baby name his new stuffed pig “Bacon” ONE TIME… and suddenly, *I’m* the villain of the piece. Psh… #NotWinningThePopularVote
::HOW TO GET GROUNDED FOR LIFE::
Me: “You need to go downstairs and clean up the basement.”
Child [snorts derisively]: “What am I? Your butler?”
Me: “You need to get moving…like, right now.” Boy [arms and legs spread proudly in the doorway]: “But a captain always goes down with his ship!!” Me: “Just get out of the car so I can close the garage, okay?” #Doomed #LifeWithBoys #CaptainsLessThanCourageous
Boy 1: “This is something important. Like, one of the most important things in the whole world!”
Boy 2 [snickering]: “Like underwear?
Boy 1 [sage older brother voice]: “Psh…underwear isn’t important.” #LifeLessonsWithBoys
“So wait, what are all the words I’m not supposed to say in front of people…?” #LifeWithBoys
Me: “…and that’s why it’s kind and appropriate to hold doors for women.” Karsten [grimacing]: “So wait, I’m supposed to hold the door for ladies. …and you too?” #LifeWithBoys #ChivalryIsDead
Me: “Are you going to clean up the kitchen floor like I asked you to…?” Chase: “Look, this has been fun but I’ve got a plane to catch.” [runs out of the room] #GroundedForLife
“But how could you hit you head against the wall of you were standing still…and were not even close to the wall?” #Conundrums #LifeWithBoys
“For the last time…KEEP YOUR EYES OPEN WHEN YOU WALK.” #LifeWithBoys
9:45 PM – “Mom, Karsten changed my phone to Spanish and now I can’t find anything. How do you say ‘English’ in Spanish?”
Someday we will laugh about this…
Probably not today.
Is it Friday..? Please, let it be Friday…
#lifewithboys #parentingFTW
“YOU HAVE TO HELP ME FIND SOCKS BECAUSE YOU ARE MY MOTHER!!!!!” Oh good… it’s one of *those* days. #LifeWithBoys
#LifeWithBoys #NoFilter #HelpMeJesus
So apparently, I never explicitly said “Hey, guys…don’t take the mattresses off the beds.” Silly Me. #LifeWithBoys
Bob: I’ll get the kids ready for bed, El. Me: Aw, thanks, Babe. That’s so ki— [looks up at him] …
[bowing excessively] “Thank you, thank you very much. My name is Karsten and I’ll be your hero for the evening. You’re quite welcome, little lady.” – anonymous child with clear self esteem issues #LifeWithBoys #HelpMeJesus
Chase: “Mom, why can’t I go outside? Can I go outside now? What about now?” Also Chase: “Mom, I feel like you should know that everybody -like, for real, everybody– is complaining because you won’t let them go outside.” #RabbleRouser #LifeWithBoys
“Mom! You do know we men know how to take care of ourselves, right? [growls] And where did you put my Spider-Man blanket?” #LifeWithBoys #Irony
“No, you can’t use your brother for target practice.” #LifeWithBoys
“But you always say we can’t because it’s dangerous, Mom! You need to come up with a new reason!” #LifeWithBoys
There are so many crazy things that happen during the year and this year especially, I haven’t gotten very much time to post on social media, but wow, these kids make me laugh, so here are a few never-before-seen quotes…
** THE BONUS ROUND **
“So, it’s a ‘no’ on football in the house every time? – clarification, boy-style.
“But he was looking at me like he wanted me to trip him! And then falling on his face was just an accident. Really!” #WontHoldUpInCourt
“I don’t care how angry you were at your sister. Mooning her is never an appropriate rebuttal to the argument!” #LifeWithBoys
“At what point did drilling holes in the side of the garage seem like a good idea?” #NotScholarshipMaterial
“But I didn’t know it was going to flood the bathroom!” #TheEndOfBathtime
Goodnight and goodbye, dear old 2018 …
Moment by moment.
“The lines have fallen for me in pleasant places; indeed, I have a beautiful inheritance.” Psalm 16:6
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. 🙂
In some ways, for her, it is the hardest. She was the oldest and remembers the most. She is the oldest and sees the most.
There are many days she would gladly slay when he is manic and won’t get out of her face for so many reasons – too many reasons. But there are just as many days she would gladly slay as she sits in tears, horrified that we live in a world where people look on her little brother with anything other than love and acceptance.
In many ways, she is ‘other’ just as he is – her soul too old for her body, her eyes witness to many things kids her age will never see in their whole lives. She lives with the guilt of resenting something and someone who feels extremely and more temporary than most. She worries that her loved ones will always stay alive and only stay close.
And sometimes, she crawls into bed next to me and needs to talk through how once upon a long-ago July, I yelled for her to stay in her top bunk even as her dad carried a seizing Chase out of the bedroom and the emergency lights flashed through the dark of their bedroom window as her whole world changed before she knew it – before she even ever fully woke up.
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 her own words, is a little of Darcy (with some “help” from Chase). This is raw, unfiltered, uncut – All heart, all sibling, all laughter, all pain, all in.
Moment by moment…
This post is dedicated to the siblings of children with cancer and special needs. Please never forget that we see your patience and bravery. You are amazing and beautiful in the struggle.
He doesn’t remember a time when there wasn’t cancer in the house; when his older brother wasn’t damaged, hurtful, screaming, and beside himself with pain. He was a sweet toddler who couldn’t yet sympathize with it all, so he became a witness to and – if we’re being very honest – a victim of cancer pain at the hands of a two-year-old sibling who didn’t understand any of it himself.
He is only six now and he’s tough as nails, but will weep at the thought of anyone in pain – ever. He has a love/hate relationship with Chase – wailing on Chase at times and wailing on anyone else who dares to disparage his brother. He is the youngest and yet he is not the baby. And he himself doesn’t completely understand why a scream turns him inside out, but I know. I remember how he would run during a lab draw, when neutropenia and pain left more monster than brother on the couch to his little baby eyes.
He will spend his whole life being a part of this and having it be a part of him, and by the grace of God and fervent prayer, we never stop praying that it will be the making and not the breaking 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 Karsten – sharing a little of himself. This is raw, unfiltered, uncut – All boy, all brother, all laughter, all pain, all in.
Moment by moment…
Bullying [dictionary definition]: the use of superior strength or influence to intimidate (someone), typically to force him or her to do what one wants.
Bullying [Karsten definition]:the dictionary plus anything else he’s not a fan of Chase doing – a line of demarcation that changes every three to five minutes and may depend on how recently Chase has shared the iPad with him.
This post is dedicated to the siblings of children with cancer and special needs. Please never forget that we see your patience and bravery. You are amazing and beautiful in the struggle.
