Of Food, Fire, And Being Fine

“What if Chase ever did something truly harmful?” 

 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.”

Isaiah 43:2-3, ESV

Chase And The Super Bowl

They said his often-exclaimed, loud and exuberant “Wow!” brought smiles to many a stranger’s face…

Dear ones, you will quickly learn that video editing is not my first or best skill, and if you’re on social media, you’ve probably already seen a few of these pictures, but grab a minute (or three), a chair, and click the play button to join Chase on his Atlanta Super Bowl journey.

All the love in the world to Robbie and Lauren Gould​ and the San Francisco 49ers​ for making these memories possible (and Topgolf​ and Delta Air Lines​ for helping) – and to our Ann & Robert H. Lurie Children’s Hospital of Chicago​ for making sure Chase was alive and well to enjoy it. ❤️

It was a good, good moment.

…by moment.

Chase’s Big Surprise


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.

Robbie deserves this. The kids NEED this.

Can you get over on Twitter today, please?

Just a few more hours left to make this happen!

Sibling Speak, Pt 3 [VIDEO]

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. 🙂 

Sibling Speak, Pt 2 [VIDEO]

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.