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.”
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. ❤️
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.
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. 🙂
