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.

 

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.

Dear Cancer Sibling

When cancer hits, it never hits just one.

While it inhabits one body, it hits all.

This week, I watched my daughter play with her cancer sibling. She’s 11 and is exactly the beautiful, frustrating conundrum you’d expect of that age, but in the one moment she held Chase in her arms, anything juvenile melted instantly.

When she holds Chase, she knows nothing, but she knows everything. Into that moment of holding go years of pain, suffering, frustration, and love far beyond anything we would have imagined or desired for a pre-teen.

Watching the expression on her face – half-sister, half-mother – it caused me to recall that she’s one of many. …and the many are on my heart today. So, siblings, this is for you.


Dear Cancer Sibling,

I may not know you, but I want you to know that I see you.

I see the pain of wondering of a beloved playmate is going to die.

I see that pain in your heart while the other kids your age don’t hardly understand the words let alone the concept.

I see you standing in the doorway of your house…a friends house…a grandparents house…while we, your parents and protectors pull out of the driveway and go to another doctor, another hospital, another appointment without you.

I see you standing quietly in the halls of the hospitals while doctors and nurses buzz around and make a deal about seemingly everything and everyone but you.

I see you in the shadows of the flashing lights when the only words they’ll tell you are “it’s okay” and “stay out of the way”.

I see how hard you work on that skill, that task, that sport…all for that one event someone will take pictures of and send to your absent parents.

I see you hiding in your room, trying to drown out the screams of a small child getting a needle plunged into their chest.

I see your frustration when your broken, sick sibling that you love so dearly hurts you as if they don’t care.

I see the guilt when you have a moment of resentment or wishing it all could have been different. It’s okay… we all have those.

I see the playgrounds and school halls through your eyes as you protectively and with a righteous anger watch social situations go over your atypical siblings heads or behind their backs.

I see you crouch low over their bed and tell them it’s going to be okay because you’re there.

I see you talking to and playing with the air in front of you as you live out their memories and remember their presence.

I see you watch the same movie, listen to the same song, paint with the same color over and over again just because it’s a fixated comfort.

I see you being the one who doesn’t get the special gift or amazing experience.

I see you stand helplessly by and watch grown men and women sob scarily and uncontrollably.

I see you having a different, often less understood life from the other kids around you.

I see you marking birthdays and holidays with an empty chair at the table.

I see you visiting a cemetery while your friends visit a park.

But here’s what else I see…

I see your bravery.

I see your unconditional love.

I see you standing up when you’d rather fall down.

I see you stepping up when you’d rather sit down.

I see the hard things developing justice and mercy in equal, beautiful parts of your soul.

I see you living out the truth that no child should ever be left out; left behind.

I see you developing a sensitivity to others beyond that of your peers.

I see hints and teases of who you will someday become and it takes my breathe away.

You will hold the world and you will run it.

Today, you may feel like the one abandoned, but one day soon, you will be the one who includes, who leads, who fights, who dominates and you’ll be able to point back to these moments when it felt like nobody saw you and you’ll say: “This was when I grew.”

So quietly, bravely grow, my dear cancer siblings…

You are seen and we can’t wait to experience the incredible person you become.

Love,

Your Parents