Tag: siblings

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.

 

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

Of Ending The Year With Our Foreheads On…

The year 2014 has less than a dozen hours left in it.  This year has seen us through many, many things and all along the way we’ve prayed for the strength to choose joy.  To that end -the joy part, or in this case, the hysterical laugh-until-you-cry part- I’ve compiled a series of actual status updates from my personal Facebook page; all of which were posted in 2014.  I chronicle these things (and have done so for some years) because life is too short and childhood is even shorter and there are too many parenting moments when you’re faced with the choice of either laughing or melting into a puddle of tears — so, as much as possible, we choose to laugh.  Many of the scenarios include personal hashtags: from the most common – #lifewithboys, to the most funny [playing off of our secret parenting fear that our children won’t get college scholarships] #notscholarshipmaterial, to a mini-series from our first family vacation for a wedding less than 48 hours before the October MRI – #turningupinTulsa.  We’ve asked you to walk many hard things with us, so, for a brief moment, as we close 2014, enjoy our “normal“…

Note: due to the household including the addition of three boys in approximately three years, an abnormally large amount of the quotes have to do with bodily functions or bathrooms.  Consider yourself warned.

1.  “Don’t walk on the couch with a box over your head, Karsten.”  I just said this.

2.  My child just pledged allegiance ending in “...with liberty and crustless for all!”  We might be in trouble. #‎nationalismfail

3.  There wasn’t enough snow for snowmen, so the kids made snow heads. Can’t decide if the yard looks like Easter Island or a horror film.

4.  Someday I will understand the mysteries of the universe and be able to explain why there is a football in the shower.  Today isn’t that day.

5.  “Well I didn’t throw the toy at him…Uh, I dropped it and his head was just in the way!” #lifewithboys

6.  “Look, I don’t care if it IS the Death Star. You need to stop messing around and eat your orange.”

7.  “Uh, Mom? Uh, today…today, I’m going to uh, not spill my water three times at the table.” #‎aidangoals

8.  “Mom, I’m keeping this family picture so that when you die, I’ll remember you because you’re old and you’re probably going to die soon.”

9.  “I just came down from Kookie’s room to tell you I peed really, really big on the floor.”  The official moment you regret telling a child to come here if they want to talk to you.

10.  “Now we are engaged TO a great civil war…”: Aidan’s rendition of Gettysburg in which history lives, but prepositions take a hit.

11.  “Well, uh, Mom, I didn’t throw a Duplo at his head.  I threw the Duplo into the Duplo box and his head was in there because he was messing around.”

12.  “Mom, I didn’t trip him.  I was just standing there with my leg out and he, uh…fell over it.”

13.  “Graham crackers are for eating…not picking your nose!”  I need a raise.

14.  This is what Aidan does on his day off school.  Because when you jump off the toilet lid, you go big or go home… 

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15.  Bob: “Karsten, you need a shirt.“, Karsten: “Can I eat it?”

16.  As Karsten watches the Olympics, he yells “Come on, Bears!”…because that’s what you yell at a TV during a sporting event, right?

17.  Darcy: “Mom, Karsten’s being a disastrophe.” Grammar takes a backseat to conflict resolution.

18.  Early morning questions: “Hey Mooooom?! When I’m 60 or 29, can I pleeease watch ‘The Battle of Helm’s Deep’?” #‎lifewithaidan

19.  Mom Log, 7:09am: Boy enters with teeth marks in forehead and another boy close behind, screaming “It was an ‘askident’!”  This should be good.

20.  “Yes, he shouldn’t have licked your books, but you should never sit in somebody’s face!”  This is how “reading time” goes down.  Real talk.

21.  “I’m sorry, Aidan, but ‘Hey, look! There’s a giant hamburger falling from the sky!’ is not a viable conclusion to your class presentation on the history of Legos.”

22.  Chase and Karsten are arguing about whether “Alligator” starts with “B” or “C“.  This should go well.  And by “this“, I mean the next twenty years.

23.  “If you ever get the kitchen stool and climb onto the counter and drop the watermelon to the ground again…”  Well, that was a first.

24.  “Mom! I learned how to sort all the laundry and now I know from everything into which thing it should be sorted into.”  Next lesson?  Grammar.

25.  “Mom, if you let me have a cell phone when I’m in college, I’ll totally text you, but first, you’ll have to tell me how to spell ‘good’ so that I can tell you that I am good.” #‎lifewithaidan #‎notscholarahipmaterial

26.  “Bapa, you never played hockey, but Grammie can still put you in the penalty box, right?” #‎lifewithaidan

27.  And then the training sesh ended with the lesson: “…and that’s why you never run with an anesthesia mask over your face.”

28.  Me: Do you know who the president was during World War 2?, Aidan: Abraham Lincoln?, Darcy: Who is the guy with the horse in the picture in the hallway? (George Washington), Me: I’ll give you a *major* hint…it was a Roosevelt. Which Roosevelt?, Aidan: “Oh, oh!! It was John! John Roosevelt!!”  #‎historyfail #‎notscholarshipmaterial

29.  Somebody found the medical supply cabinet… #‎trouble

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30.  “Well, Mom, *this* is why you had a daughter…because I’m always right.”

31.  “Kookie, you be Dark Vader and I’ll be Fran Cello, okay?”  May the force (and the knowledge of actual Star Wars characters) be with you, my boys.

32.  This morning, Aidan informed me that he could sneeze in Spanish.  So glad we can check that off the list of needed life skills…

33.  That time Aidan walked into a dining room chair and split his eyelid open…again.

34.  That moment you’ve been in hold forever with the US Postal Service and they finally ask you to say a command and all the phone computer picks up in the silence is the sound of the 2 year old standing next to you saying: “I have poop, Mom.”

35.  Darcy is reviewing family members’ names with Chase: “Uncle Dave , Aunt Meg , Captain America…”  Say what??

36.  “But you NEVER said I COULDN’T throw a chair!”  Helloooooo, Monday…

37.  Family pictures at the horse farm…, Grandma: “Aidan, did you tell your mom about your experience in the barn?”, Aidan: “I touched a horse!”, Grandma: “…and what else did you touch?”, Aidan [hanging his head]: “Oh yeah… I toucheded the electric fence too.” #lifewithboys

38.  “Do not drop your dinner plate on the floor for the sole purpose of doing an air guitar with your leg!” — parenting with Bob Ewoldt

39.  “Um…Mom? How old will I be when I’m 25?” -Aidan #‎notscholarshipmaterial

40.  “Hey, Mom? When Auntie Meg has her baby, can I burp ‘Rock-a-bye Baby’ to it? I promise to burp in English!” -Aidan

41.  Let me be clear about something…just because I never specifically said “Hey, don’t take the cap off the milk carton, put your mouth around it, and blow into the opening.” does NOT mean it’s an acceptable breakfast table activity. #‎lifewithboys

42.  That oddly poetic moment when the coffee you’re about to make becomes that much more necessary to your day… 

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43.  “Aidan, tonight is your first night in Sparks, and you should be happy about that, and I know that you’re a lot shorter than most of the other kids, but you should try to have fun, and it’s okay, and you’ll grow up some day.”  Older sister pep talks are the best.

44.  I just walked into a flooded bathroom and two guilty little boys who informed me that it had happened because one was “President Business” and the other was “The Piece of Resistance”.  Everything is awesome.  So awesome.

45.  One of my children really knows the meaning of the phrase “Go big or go home”.  In other, totally unrelated news, anybody have a failsafe recipe for getting black Sharpie permanent marker out of anything and everything…hypothetically speaking??

46.  As we discussed today’s [Columbus Day] historical significance…, Aidan: “Mom what language do they speak in Spain?”, Me: “Spanish. Why?”, Aidan: “No, I’m pretty sure that’s not right. There’s a Spain language.”, Me: “Yes, it’s called Spanish.”, Aidan: “No, it’s a [emphasis] Spain language…” #notscholarshipmaterial

47.  “Mom! Come quick! The boys put toys in the toilet and Chase is telling Kookie to flush them!!”  Thanks for the sucker punch, Thursday. #‎lifewithboys

48.  6:49AM – Chase gets mad at Aunt Carrie for possibly not sharing her wedding cake with him…in two days. Aidan asks when we are going to cross the Mississippi Ocean. #turningupinTulsa

49.  12:20PM – stopped for lunch in a food joint crowded with service people in uniform and while Karsten pointed and called them “Heroes” and we had a patriotic moment, Chase took a swig of the pepper shaker. #‎turningupinTulsa

50.  1:39PM – pulled out the brand new, educationally promising coloring books detailing things like “Explorers of North America”.  Gave myself a pat on the back for thoughtful parenting.  Listened to weeping and gnashing of teeth because Magellan isn’t Spider-Man. #turningupinTulsa

51.  3:47PM – left Mo for “The Sooner State” and discovered pieces of blue crayon all around Karsten’s chair.  I was informed it had been eaten because it was blue.  Having been on the road for 12 hours, I deemed this an acceptable explanation. #‎turningupinTulsa

52.  8:00PM – Aidan starts doing handstands off the hotel wall.  Discussion of appropriate hotel behavior ensues, the finer points of which may include parents lack of knowledge on the nearest ER. #‎turningupinTulsa

53.  6:42AM – After she let us know she woke up early to “relax on vacation”; we had a lengthy discussion with Darcy on “the wedding party” being a group of people rather then an event.  It went something like the famed “Who’s On First?” sketch. #‎turningupinTulsa

54.  9:05PM – Chase vows to grow up and marry Aunt Carrie.  Aidan vows to grow up and marry Darcy.  Time for the first “Why you can’t marry your sister” conversation…also the “Why you can’t marry your already-married aunt” conversation.  Good talk, good talk.

55.  1:18PM – Tried the educational coloring books again.  Got asked if I had a butter churn when I was little.  Education is not my friend this weekend. #‎turningupinTulsa

56.  Some are born great, some achieve greatness, some have greatness thrust upon them, and still others chuck the whole battle for a peanut butter sandwich. #‎lifewithboys

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57.  “Mom! I got super frustrated and totally freaked out and flushed my clothes down the toilet! …but then I took them out again and they’re on the bathroom floor. Is that okay?”

58.  [later the same day as the clothes flushing]  In this house, to have one gross, bathroom-related Facebook status per day is pretty standard. To have TWO gross bathroom-related updates in a single day is pretty amazing…even for the Ewoldt boys. Karsten, for filling the sink with water and “painting” the bathroom with the toilet brush… This one’s for you.

59.  Just because I never *explicitly* said “Hey, don’t take graham crackers and crush them with a hammer on the living room table.” doesn’t mean it wasn’t implied.

60.  Bob: “So children, what did you learn in Sunday School today?“, Aidan: “Hey! Do you guys know how to do arm farts?” #lifewithboys

61.  I shook the freshly delivered Amazon box [full of Legos] to give the December boys a birthday present hint today.  Aidan’s guess?  A box of sweaters.

62.  So, apparently, when you hear “Hey Mom! Come quick! Chasey’s all tied up with tape!”, it could literally mean that Chasey is indeed all tied up with tape.  In other news, the 6-year-old just had his taping privileges revoked for life.

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63.  “It’s okay, Mom… I only carry dishes while walking backwards with my eyes open and I’m very careful.”

64.  “Mom, we’re really sorry for breaking your ironing board, but now that it isn’t flat anymore, it’s makes a really good slide. Is that okay?” #lifewithboys

65.  Bob: “…and that’s the story of the gospel and our advent reading for tonight…any questions?”, Aidan: “Yes! Why don’t we do piñatas for birthdays??” #‎stayontarget

66.  Grief counseling for small boys in traumatic circumstances: “Son, if you insist on bench-pressing a full bottle of ketchup over your head, things like this are likely to happen…”

67.  Without a doubt, the best bedtime excuse I’ve heard in a long time… “But Mom, I can’t go to sleep without my forehead on.”

Goodnight and goodbye, dear old 2014…

Moment by moment.

The lines have fallen for me in pleasant places;
    indeed, I have a beautiful inheritance.  Psalm 16:6

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