If you had asked me on the morning of January 8th – MRI morning – if I thought I still lived a cancerous life, I would have known it wasn’t as bad as it had been once upon a time, but after a pause to weigh it all, I would have most likely said yes. Yes, our collective family life is still very much filled with the indirect weight of cancer.
However, the last four weeks have proven that I have indeed forgotten more than I remembered.
Year Two
I forgot what it was like to live in a place where I take one step without seeing the step after or even knowing when the movement will be required of me.
I forgot what it was like to have people feed me practicality and logic when I just need a hug and the acknowledgment that life is hard, but this won’t break me.
I forgot the near hourly feeling of not being enough for children who want me to process something for them that even I don’t understand.
I forgot the weight of their sobs – how much I hate that they hurt when I gave birth to protect them from, not direct them through, the nightmares at their door.
I forgot what it feels like to live a life half in and out of the hospital, feeling the dread of landing there again even as I relax into the second home – the love-hate relationship with a building filled to the brim with stories of pain and hope.
I forgot all the suggestions that get given.
I forgot how much the well-meaning can can sometimes hurt.
I forgot how much I still want to hear from people even if hurts like hell itself because there is nothing worse than silence in a struggle like this.
I forgot how quickly the days pass when I’m focused on keeping everyone breathing.
I forgot how that breath is a gift.
I forgot that every moment is so excruciatingly precious that it should never be taken for granted.
I forgot that God is enough and wants to be enough. Even though I write those very words all the time, I did not remember the feel of it in truth.
I forgot that sometimes I need blood and pain to remember the things I should never forget – the things in life that truly matter. And I hate myself for that a little bit. Surely, there’s an easier way.
I forgot that remembrance in seasons is actually a gift because these days in their awfulness still manage to showcase the most precious aspects of life on this earth.
I’m not sure if having it all dulled by a long season with more “normal” was worth the pain of it creeping back in (because with a diagnosis like this, it is a slow creep and not an epic crash – it’s an unfolding and not an exploding – but it still hurts – perhaps more so because it is the second and not the first), but for every piece I’m forced to remember, for every new nuance that appears, I claim it for the story it will become, the tool it can be – and in so doing, the moment can wound, but not hold me forever, because there will be a purpose to it.
I forget… but for better or worse, continuing Chase’s cancer journey ensures that I will remember again. And then comes hope…
Moment by moment.
“Is his unfailing love gone forever? Have his promises permanently failed? Has God forgotten to be gracious? Has he slammed the door on his compassion? And I said, “This is my fate; the Most High has turned his hand against me.” But then I recall all you have done, O Lord; I remember your wonderful deeds of long ago. They are constantly in my thoughts. I cannot stop thinking about your mighty works.” Psalm 77:8-12
It’s cancer… And the total mind-twisting news is that it’s actually a good cancer. (Yes, the term “good cancer” exists.)
The diagnosis could have been so much worse, but it’s still another cancer and it’s somehow inconceivable to Bob and me that in nine short years, our sweet boy is facing a second battle.
In this wind-knocked-out-of-us moment, there is so much to weigh us down and break us, but there is so much to be thankful for – so much blessing too.
So, we choose thankfulness…and throw ourselves into the cancerous moment by moment again.
Please pray for our family, that we would bend and not break; that if…scratch that…when we fall, we will always fall toward each other and the still-good God who made us.
And finally, please pray for Chase. He’s so much older this time, he understands so much more. While this particular cancer is nowhere near as intense as his original diagnosis, I do believe this will play out so much more traumatically in his heart and mind because he knows cancer now, he understands the ramifications of this ludicrous, hateful disease. He’s grown so much in knowledge and our prayer is that he would grow in faith too. He will have so many choice moments ahead of him and our prayer is that he will always and forever choose to hope.
Cancer does not have the last word.
Ever.
…moment by moment.
“In the dark of night, before the dawn, my soul, be not afraid for the promised morning, oh how long? Oh God of Jacob, be my strength. We will feast in the house of Zion, we will sing with our hearts restored. He has done great things, we will say together; we will feast and weep no more.” -Sandra McCracken
He lay there silent, head tilted back to the ceiling with the near cerulean wall behind him reflecting a comforting light over the space.
“See, Mom? I’m just going rest here now. I can do this,” he says quietly while the tech’s hand jiggles at the movement his words cause and she asks him not to speak for a while.
He sighs and gets quiet and brave; ever the conundrum. His bones are young, his brain is possibly younger, but his heart is oh, so old.
And when it’s over and quiet in the space, he clutches his brand new pillow – the softest – and snuggles it close. “Maybe I will name him Nemo,” he tells my heart friend and hospital help as she huddles close.
Hours later, we sit in the soaring pavilion, the awful, long day done with more peace than we expected; perhaps even more than we deserved. And while he sits close and tight, I talk to him about things that shouldn’t be. Cancer things. He listens and he asks, his damaged body growing tight in my lap as I hug him close to me, and then he relaxes into the hug, looking lost as he lay his stubbly, baby soft head against me. “It’ll be okay. I’ll be okay.”
On the floor of the pavilion with Lurie Foundation familyWith the head of Lurie Neuro-Oncology
He slept and when he woke, he tightened his hold on the plush orange pillow, the day’s symbol of soft rest in a harsh reality, and he spoke wisdom older than his bones. “I think his name should be ‘lost-and-found’. Because Nemo was lost and then he was found and sometimes that happens in the hospital too.”
“For the Lord your God is living among you. He is a mighty savior. He will take delight in you with gladness. With his love, he will calm all your fears. He will rejoice over you with joyful songs.” Zephaniah 3:17 (NLT)
Sometimes we get lost when the world tips a bit. But then we find and are found once again – because the axis and anchor never really moved beneath us. And the knowledge that the anchor of Jesus never changes or leaves us lost means that pain will not define us. It can draw us, but it cannot shape us. It can make us, but it cannot break us – because pain is never the whole story, but only just a part.
Please sing over us, Abba, that we might never be lost, but always found…in you.
By now, many of you know that Chase is headed to the Super Bowl in a few weeks, but there was a part two that unfolded even as Chase was in the hospital for his tests this week.
I don’t know how many of you know this, but Chase’s grandparents (Ellie’s parents) took on our entire family, round-the-clock childcare and so much more when Chase was diagnosed with cancer. They gave up an empty nest to house a displaced, confused, way-too-loud family of six and all that entailed.
We can never give them back all the time, but with Robbie Gould’s help, on the eve of Grandpa Poole’s 71st birthday, we were able to pull off the most amazing surprise.
This one goes out to all the caregivers caring for other caregivers. For every soul with a ripped heart who ever comforted their child as they watched a suffering grandchild.
We see you.
We know you’re out there.
THANK YOU.
And y’all – Chase really needs people on Twitter today using the hashtag “WPMOYChallengeGould” – find “ChaseAwayCancer” on Twitter now and retweet this video or one of the other Robbie-related tweets. If Robbie’s name is the most mentioned on Twitter, then Nationwide Insurance will donate $25,000 to Ann & Robert H. Lurie Children’s Hospital of Chicago.
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
