See us running and hugging and freaking out a little? …crazy joy smiles on our faces?
Today, that’s what we’re doing because 1) our miracle boy turned 12 years old yesterday, and 2) because you put together the MOST AMAZING action in the last two days.
In less than 48 hours, the Chase Away Cancer community and friends gathered OVER $13,000 for Lurie Children’s Hospital and the Anthony Rizzo Family Foundation in honor of Chase’s 12 years!
You guys!
YOU DID IT!!!!!
I wish you could have heard the gasp Chase let out when I told him the news.
Dear ones… this was a VERY GOOD THING that happened this weekend.
You think I would know by now that another shoe drops with each piece of news… I have debated writing this all down because it feels like I’m being a drama mama, and yet, it feels dramatic because everything is traumatic when there’s been a terminal fight. So, it’s true that Chase’s brain and spine are in the clear for now, but it was next-hospital-day news that revealed there is something growing in Chase’s thyroid. We have been told that it’s probably not a big deal, and I want to believe that with my whole heart, even though I know IT’S CHASE. All the necessary teams are getting onboard and there will be more tests and more days spent in the hospital. So it’s probably nothing. But it could be something. But we pray it’s not. Welcome to the roller coaster. The only thing we can do is buckle up and cling even more and ever more to hope in the moment by moment. ❤️
Chase Away Cancer Facebook page, January 11, 2019
It’s cancer. And the total mind-twisting news is that it’s actually a good cancer. (Yes, the term “good cancer” exists.) But it’s still another cancer and it’s somehow inconceivable to me that in nine short years, this 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.
Chase Away Cancer Facebook page, January 29, 2019
It feels like I wrote these words seconds ago. I remember the pit in my stomach and the way it felt hard to breath. But it was a year ago now, and as I reflect on this crazy year of a second cancer, as we approach the second first anniversary of a diagnosis, there are three things that stay close to my heart, and so in honor of the struggle, I share them with you now. I hope you see yourself, see encouragement, and see hope in these words, for we are all in a fight of one kind or another:
At no point does pain reach a saturation point. In our experiences this last year, there has never been a moment when we thought, nor have we met anyone else who thought or said: “Oh, I have already experienced several years of pain and suffering, so it does not phase me as it once did. It is easier now.” Every pain is new like water on a parched ground, soaking deep and fast, and sometimes things hurt worse simply for the misplaced conviction that they should not hurt at all.
There is no modifier in a cancer journey. It isn’t “just” thyroid cancer, “just” stage one. There isn’t an “easy” cancer. Some are more complicated than others, some come with a higher mortality rate than others, but there is no easy cancer. Each comes with its complications, both physical and emotional. And in a disease where there is no justice, there can be no “just”. This is the broken world manifest in our broken bodies.
Make every moment count. I sign off every piece with the phrase ‘moment by moment’ and it stems from the edge-of-the-knife times when everything changes and the ground shifts beneath you. If I could take one thing from those first seconds of knowing, when the heart beats hard and everything in you falls and screams, it would be this: make the time count. Sometimes, I forget and am lulled, yet, how I long to keep it close even when my heart beats slow and all is well. Only the necessary. Only as needed. Always with grace. …moment by moment.
Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.
Lamentations 3:22-23
Friday, February 22, 2019 ~ one day after surgery
**On this past Tuesday evening, January 14th, Chase had another seizure, his first in six months. It was under five minutes long and he came out of it well and quickly, but he will be facing additional tests and labs, including another overnight stay in the hospital – all in the next month.**
Incredibly, 2019 is down to being measured in hours and minutes – the end of both a year and a decade. This year has seen us through many, many new things and all along, we have prayed for the strength to choose joy. You’ve spent the year crying with us, so now, I invite you to laugh. And to that end, 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. …and that’s all without even touching illness and hospital days and the simple act of processing it all. So, as much as possible, despite the changes… we choose joy. And 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 guest appearances by legendary grandfather, Ed Poole.
Did you just hit your brother in the [inappropriate content] with a roll of wrapping paper?? #FaLaLaLaLotsofTherapy #LifeWithBoys…but make it Christmas
HOW MANY TIMES…
…have we talked about not licking the walls?
…have I told you to keep your ever-loving eyes open when you’re running??
…that punching each other is not a viable communication technique?
…that your dirty socks don’t magically clean themselves in whatever god forsaken corner of the house you left them in?
…that you can’t FaceTime me to fix you a sandwich? Ever?
…that your can’t wear shorts when it’s 30 degrees no matter how much it breaks your heart?
…that your life isn’t over even if you can’t get your armpits to make fart noises?
…that if you don’t wear underwear, you might catch something in the zipper?
“I have a question, Mom – if that even is your real name…” #LifeWithChase
“Here, Mom. I got this paper a week ago, but I accidentally left it in my back pack and it has to be filled out by tomorrow, so, you know, you should probably look at it now…” #LifeWithBoys
“You know that’s not true! I would never hit him in the — wait, can I go back and try to say it again with a straight face?” #LifeWithBoys
“Oh my word, boys! If you don’t stop it right now, somebody’s going to get hurt!!”
[awkward crickets]
“Uh, that’s kind of the point, Mom.”
Hi, yes, we are handling football season very well over here… how are you…? #NoFightingLater #NuancedFierceLooks #NotoriouslyFlamingLambeau #NaughtyFlatulentLads
“Don’t worry, Mom. I won’t be tempted to talk to you while I’m doing my math homework. It’s not like you can help me with it or anything.” #TheOGNotScholarshipMaterial #SchoolForTheGifted
“I am in so much pain.” “Are you really?” “I think I tore something in my knee.” “Probably not.” “Okay, but I’m almost sure I tore my ACL.” “No.” “Everything is torn.” “Still no.” “Well, for sure my heart is broken.” “No, just no.” “Can you sprain things? Am I sprained?” #TeenGirlSquad #DramaticEmphasis
When Bob is on the West Coast for a few days… Also, that raise. For real.
“But why do they call it a seizure salad? Seizures are not delicious.” #ItsAMedicalLife
[overheard in the house where no doors have been changed in three years] “I didn’t know there was a door right there, and now my head hurts.” #NotScholarshipMaterial
Meanwhile, on Instagram, there are orange socks of protest.
Buy one bottle of “super disgusting” Watermelon Cucumber Lemonade, and suddenly, I’m the villain of the piece. Psh. Troglodytes. #LifeWithKids
Amen. Let us close in prayer. 🙏🏻#MondayMotivation #InspirationalQuotes #LifeWithBoys
Where do I hand in my resignation, please and thank you…? #MondayUNMotivation
“What if I put a pillow in it?” “Nope.” “…even if I wear a helmet?” “Um, super no.” “But it’s just one flight of stairs!” “No!” “…in a box!” “Son!” “But it’s not like we’ve got priceless artifacts on the walls.” “You’re grounded forever.” “Well, you’re a crusher of my dreams.” “What was our ONE rule for Spring Break…?” “I know, I know.. ‘Mom’s Not Taking Anyone To The ER’…” “Right.” “For the record, you never let us do anything fun.”
“Mom, wanna see a magic trick? Um, but also, it kind of includes fire… are you okay with that?” #NotScholarshipMaterial #LifeWithBoys
“I’m sorry he hurt you, but I think that’s the price of doing business when you punch him in the [inappropriate content], child.” #WhyWeDontHaveFriends #WhyWeCantHaveNiceThings
“We’ve been over this before… NO, you may not change your legal name to Aaron Rodgers Ewoldt.” #LifeWithAGreenBayFan #SendHelp
[yelling] “OKAY. HERE IS THE RULE OF THIS FOOTBALL GAME: IF YOU BREAK ANY BONES, THAT IS A FOUL.” #JonesinForTheER
“What? He tried to take my sandwich!!” – explanation for baby brother’s black eye #LifeWithBoys #KnuckleSandwich
“I think my pancreas hurts.” “Do you even know where your pancreas is?” “Wait, that’s a real thing? I thought it was just a made up word! I was just messing around!” #TeenGirlSquad #DramaSpleen
“But we’re trying out my new helmet!” #HeadCase #LifeWithBoys
That feeling when you’re super happy to be out of the hospital, but you’re also a little worried about your ride home… 🤣#TheLegendaryEdPoole
“I know you’re enjoying the battle, but can you die quieter? You don’t want to disturb the neighbors.” #LifeWithBoys
Goodnight and goodbye, dear old 2019 …
Moment by moment.
“The lines have fallen for me in pleasant places; indeed, I have a beautiful inheritance.”
We did not ask for this year, but we do not resent it being given to us either. Sometimes, life is a struggle, but then it settles to pleasant places and we realize that these journeys we take have been destined for our good – to give us a future and a hope – all along.
The last twelve months have held all that you would expect them to hold in a family of six – church, jobs, writing, speaking, school, orchestra, band, plays, student council, sports, and more. But in perhaps one of the most surprising and yet unsurprising turn of events this 2019 (something you all already know if you follow CAC), Chase was diagnosed with a second cancer. It started in his thyroid, but has moved into his lymph nodes, and as of November, they are monitoring his lungs and kidneys as well. There have been surgeries, procedures, treatment, and seemingly endless days in the hospital. There have been tears and anger mingling with the joy and laughter, and over it all, the whispered prayer continues on: “Lord, please use this to strengthen and not to break.”
We are overwhelmed, yet
God is faithful.
We are tired, yet God
never sleeps.
We grieve, yet God takes
the pain and gives hope in its place.
And isn’t this why we mark
this Christmas-time, life-long celebration? The moment that tiny babe drew
breath in a barn cave with the animals all those thousands of years ago, the
war was won. Hope will always win because God’s love is greater still.
Sometimes the question keeps my mother heart and brain up at night. Raising a child with brain damage and low executive function (the part of his brain that reminds him if things are a good idea or not) can be exhausting, but it’s the element of danger, the knife’s edge – both a literal and metaphorical idea most of the time – that keeps my eyes open in the dark and makes my heart pound faster.
What would I do if he ever did?
He wouldn’t, would he?
I didn’t know how soon I would be asked to put those ambiguous thoughts to the test of reality…
“FIRE…!!! FIRE-FIRE-FIRE-FIRE…!!”
It was early on a spring-cold Sunday morning and I thought I had heard all of Chase’s screams, but this one was new and horrible – the panic at a level I’ve never experienced before. I could feel his fear in my own blood. Hitting the lower level stairs at a dead run, I turned the split corner by the front door landing and looked up into my kitchen, the glow of flames currently contained in the microwave clearly reflecting off the dingy white ceiling.
Why hadn’t we ever re-painted the ceiling? It’s so strange what random thoughts race through your mind in a moment of threat and adrenaline.
The kitchen was on fire. How long did I have before it spread and cut off the boys escape from down the hall? Did Aidan have his headphone on – could he hear Chase scream? Thank God Bob and Darcy were already gone.
My view of the unfolding glow was only a split second as Chase and both of his brothers came pounding down the stairs, free of the hallway in their pajamas and bare feet, obeying the command to take nothing but their bodies and exit the house immediately.
Heart racing so hard I could hear the thump of it against my ear drums, I pressed those three precious digits into the screen of my phone and thumb hovering over the final push to put the call through, I stood in front of my house, the door thrown wide open and wondered if today was the day Chase finally burned the house down. Perhaps it was always only a matter of time…
Thumb paralyzed on the phone, I realized that there were no longer glowing ripples of flame reflections visible through the door. I expected to watch them climbing a wall by now, not go dark.
Did I dare look before I placed the call? To go back into a structure potentially on fire was the height of stupidity...
Did I misunderstand when Chase cried for us to run? But I had seen it happening with my own eyes…hadn’t I?
I left the boys crying in fear on the front walk and gingerly entered the house again.
There had been a small fire.
And it was totally gone.
Slowly, the reality began to unfold with the story. Chase struggles to read, so many times, he simply does not read – relying instead on pure instinct and determination. So he didn’t see the small, brightly-colored print at the bottom of a fast food bag warning about the microwave and his first clue to the awful mistake was watching the bag with his leftover chicken sandwich burst into flames in front of his eyes.
There is probably a logical, scientific explanation for why the bag stopped burning, for why the dish burned, but did not catch fire, for why the inside of the microwave smelled heavy and densely of acrid smoke, yet there was not so much as a vapor or scorched wall present when I finally got the courage to pop open the door. The walls of the machine were cool to the touch.
There is probably a logical, scientific explanation, but to me, this will always be both a miracle and a message.
Everything could have burned, but it didn’t. While Chase made crazy decisions and took uninhibited risks, the worst was withheld and we were kept wildly, joyfully safe.
And as I stared at the cinders of the paper on my scorched dining plate, standing in the middle of the kitchen I still had, listening to my children stepping back into the house in relief and joy, it felt as if God himself whispered quiet and close:
“See? I’m not taking it all away, but I’ll see you through it just fine.”
Moment by moment.
“When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you. For I am the Lord your God, the Holy One of Israel, your Savior.”
