Category: Cancer

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)

One Hour One Child

Hello, dear ones –

On Wednesday, May 30th, I’m so excited to be teaming up the St. Baldrick’s Foundation to share Chase’s story and raise support for clinical trials!

Will you please consider joining me at this free, one-hour event One Hour: One Child?

When: Wednesday, May 30th

Time: 4 – 5pm

Location: Hyatt Regency Chicago

You’ll have the opportunity to support St. Baldrick’s funding of clinical trials and directly impact the health and lives of kids (like Chase) who are battling cancer. (plus…hang out with me, of course!)

Space is limited – Please RSVP by Friday, May 18th to Serena.Bernolak@StBaldricks.org or 626.792.8247 ext. 253.

See you there!

~MbM~

www.stbaldricks.org/onehour-onechild

Stuff, Things, And Chase Stole My Book

…or, as I like to call it: “Our joint office”.

Yes! It’s the first day of May, the kick-off to Brain Tumor Awareness Month, and that warrants a rather questionable video of me telling you whatever is on my mind.

First of all, THANK YOU so much for all the texts and messages in response to my little update yesterday. I so appreciate all your encouragement and prayers – feeling so loved. Please continue to pray that the Lord would guide and direct me in every step. I know the desire in my heart, but I also long for my heart to mirror God’s will, even if that means changing things up.

Next… Brain Tumor Awareness! Dear ones! Chase Away Cancer (the book link to Amazon) turns TWO today! And in honor of that, I explain why you need to go buy one, share it with a friend, give it as a gift, and basically all other manner of shameless promotion. Guys, I believe in the message of this book with every fiber of my being. Pass it on.

And last, you’ll have to watch the video because … wait for it … Chase is a book-stealing book stealer. Ah…

 

Moment by moment…

Ellie

PS: Y’all can @ me anytime on Facebook (Ellie Poole Ewoldt, Instagram (Ellie Poole Ewoldt), or Twitter (eleanorewoldt) – I love to hear from you!

PPS: If you think of us tomorrow (Wednesday 5/2), please remember to pray for Chase while he meets with his endocrine team at Lurie. Our hope is that the growth hormone shots are working and that Chase’s system is as strong as it can be.