Category: Cancer

Of Hard Moments And Incredible Gifts

Early tomorrow morning, Chase will step into a room, accept needles, give blood and drop into unconsciousness for a two hour MRI, kicking off a month of appointments and exams.

Everything is coded as routine, and so it is, for there’s no emergency, and yet it’s anything but routine for my sweet boy.

We live the strange survivor conundrum that is this: the older he gets, the more physically easy a test may become, but the greater the toll to his emotions.

He is so nervous and got to the point last night that he told me that it wasn’t just about the needle, but that he wished there had never been a seizure or cancer or any of it – he wished that he could take it all back and make it different – and then we both cried because his words are in my heart all the time.

And yet, we find incredible joy in the journey too. So as I thought through what I wanted to share with you this MRI Eve, I thought of this little video.

You guys, THIS.

Chase was given an iPad six years ago when he began treatment and it finally, irrevocably died this past Fall.
While we have never wanted for anything, there is no extra money to go buying new iPads on the regular, and I found myself crazily mourning the loss of a screen with so many appointments upcoming – not to mention, it helps Chase to stay focused on the drives to the hospital so that he doesn’t start vomiting (a neuro/mental holdover from chemo days – he sees the Chicago skyline when we go to the hospital and starts to vomit).

And then, there was a text from a friend with the words “It’s all taken care of…”

And then there was an Amazon box on the front step.

And then there was this video, in which my darling boy with all his challenges felt the right emotion in the right moment – a thing I have hardly ever seen and my gift in witnessing it was greater even than what lay in the box for Chase.

And it knocked me over.

So THIS.

On the eve of the MRI, be a part of our joy and thankfulness.

And if you picture Chase tomorrow morning, know he’ll have a beautiful, fresh screen to help. And then say a prayer for his bravery to hold in the moment by moment of this cancer life.

Everlasting gratitude and love to the Anthony Rizzo Family Foundation​ to taking a cancer diagnosis and turning it into a blessing for so many. Thank you for seeing our children for who they are and what they can do and then never resting until their quality of life is the best it can possibly be.

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.

Sibling Speak [VIDEO]

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.

 

Making Dust In The Wind

The kids are finally out of school and summer programs are easing into projects and days at the pool, but there’s one thing that I’m still trying to wrap my mind around. I’ve shamefully fought it for three years now, dreaded it and done everything I could think of to ward it off. But this year, I’m giving into it…embracing it. It’s a part of us because he’s a part of us.

People with low executive function need boundaries – a daily paradigm, as it were. Or, at least this is the truth of Chase. And it’s a truth that makes summer and it’s loose, last minute plans a waking nightmare. Okay, perhaps not a complete nightmare, but it definitely ranges from marginally uncomfortable to “Mom’s going to sell y’all on E-Bay if you don’t give her a moment of peace!” For Chase, it’s not enough to know there will be a lunch, a dinner, and some kind of activity for the day. If he doesn’t know what’s for dinner, for lunch, what we’re doing and approximately when, he becomes agitated, confused, and will repeatedly ask (and by repeatedly, I mean every few minutes until we do whatever it is he’s asking about – so sometimes, for hours) what comes next. Without a doubt, low executive function and short term memory loss are a wicked combination. (and if you don’t believe me, please feel free to reference last month’s Facebook post on Chase’s burying his sister’s cell phone in the front yard)

For years now, I have only been able to cope with life by living in the moment. Not worrying about the next thing ’til it’s in front of me. If you don’t commit, then you will never be disappointed by what’s not going to happen, right?

And yet, now, I’m committing. Every day. For me. For him. For sanity. I’m committing to the day.

I will push him: he doesn’t always get to know every single event of the day in the exact time it will occur. But he will push me too: I need to have an idea and have it written out because it helps him feel safer – better.

This is love.

So, I will learn to plan the next day in faith and he will learn to live this moment in grace.

And we do it all in chalk so the plans are only ever dust in the wind…

Moment by moment. 

Trust in the Lord with all your heart; and do not depend on your own understanding. Seek his will in all you do, and he will show you which path to take. Proverbs 3:5-6 (NLT)