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. 🙂
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.