Tonight, you are about to climb into bed – utterly beyond caring after days of worry – too tired to do more than collapse.
I know you saw how Chase’s hand shook when he was taking off his shoes in the hallway tonight. I know you saw it and it stopped and so you doubted yourself. I know you’re secretly really angry because the doctors aren’t listening to you and don’t know.
It’s okay.
Everybody wishes they could see things more clearly at times. Everybody wishes other people had the answers when they haven’t a clue.
Tomorrow morning is going to come earlier than you think and it’s going to bring the answers you’ve been wanting so desperately, but they will come with a price. A big one. Chase is in more trouble than you think he is.
So sleep deep tonight. And when Darcy comes into your room in just a few hours, listen to her the first time – she knows what she saw.
[Oh, and for the love… put on a bra before the firemen and paramedics walk through the door – you’ll wish you had it on all day.]
Kiss everyone extra sweet and hug them all a little tighter when you tuck them in. Everything you know right now is going to twist and vault like a bad case of vertigo.
You are about to find out that you’re both weaker and stronger than you think. And that God’s love and grace is worth it all – despite all the times you will scream and fight and hate Him just a little bit for what will feel like unanswered prayer.
We know Chase was the accident baby. The one who showed up despite the birth control. But I think you’ve always known in your heart that he was special. And we’ve confirmed it a thousand more times since you first thought it when you held him tight at birth.
So sleep deep for these last few hours before everything changes.
This isn’t your fault. It’s nothing you did or did not do. That’s not how this works.
It’s okay to cry. And believe me, because it seems crazy, but joy will come when you least expect it – even as you sob.
Give yourself grace and be real because it’s about to get really intense.
Incredibly, 2019 is down to being measured in hours and minutes – the end of both a year and a decade. This year has seen us through many, many new things and all along, we have prayed for the strength to choose joy. You’ve spent the year crying with us, so now, I invite you to laugh. And to that end, I’ve compiled a few status updates from my Facebook page.
I chronicle these things (and have done so for many years now) 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. …and that’s all without even touching illness and hospital days and the simple act of processing it all. So, as much as possible, despite the changes… we choose joy. And we choose to laugh.
Many of the scenarios include personal hashtags: from the most common – #LifeWithBoys, to the most sarcastic [playing off our secret parenting fears] #NotScholarshipMaterial, as well as a few guest appearances by legendary grandfather, Ed Poole.
Did you just hit your brother in the [inappropriate content] with a roll of wrapping paper?? #FaLaLaLaLotsofTherapy #LifeWithBoys…but make it Christmas
HOW MANY TIMES…
…have we talked about not licking the walls?
…have I told you to keep your ever-loving eyes open when you’re running??
…that punching each other is not a viable communication technique?
…that your dirty socks don’t magically clean themselves in whatever god forsaken corner of the house you left them in?
…that you can’t FaceTime me to fix you a sandwich? Ever?
…that your can’t wear shorts when it’s 30 degrees no matter how much it breaks your heart?
…that your life isn’t over even if you can’t get your armpits to make fart noises?
…that if you don’t wear underwear, you might catch something in the zipper?
“I have a question, Mom – if that even is your real name…” #LifeWithChase
“Here, Mom. I got this paper a week ago, but I accidentally left it in my back pack and it has to be filled out by tomorrow, so, you know, you should probably look at it now…” #LifeWithBoys
“You know that’s not true! I would never hit him in the — wait, can I go back and try to say it again with a straight face?” #LifeWithBoys
“Oh my word, boys! If you don’t stop it right now, somebody’s going to get hurt!!”
[awkward crickets]
“Uh, that’s kind of the point, Mom.”
Hi, yes, we are handling football season very well over here… how are you…? #NoFightingLater #NuancedFierceLooks #NotoriouslyFlamingLambeau #NaughtyFlatulentLads
“Don’t worry, Mom. I won’t be tempted to talk to you while I’m doing my math homework. It’s not like you can help me with it or anything.” #TheOGNotScholarshipMaterial #SchoolForTheGifted
“I am in so much pain.” “Are you really?” “I think I tore something in my knee.” “Probably not.” “Okay, but I’m almost sure I tore my ACL.” “No.” “Everything is torn.” “Still no.” “Well, for sure my heart is broken.” “No, just no.” “Can you sprain things? Am I sprained?” #TeenGirlSquad #DramaticEmphasis
When Bob is on the West Coast for a few days… Also, that raise. For real.
“But why do they call it a seizure salad? Seizures are not delicious.” #ItsAMedicalLife
[overheard in the house where no doors have been changed in three years] “I didn’t know there was a door right there, and now my head hurts.” #NotScholarshipMaterial
Meanwhile, on Instagram, there are orange socks of protest.
Buy one bottle of “super disgusting” Watermelon Cucumber Lemonade, and suddenly, I’m the villain of the piece. Psh. Troglodytes. #LifeWithKids
Amen. Let us close in prayer. 🙏🏻#MondayMotivation #InspirationalQuotes #LifeWithBoys
Where do I hand in my resignation, please and thank you…? #MondayUNMotivation
“What if I put a pillow in it?” “Nope.” “…even if I wear a helmet?” “Um, super no.” “But it’s just one flight of stairs!” “No!” “…in a box!” “Son!” “But it’s not like we’ve got priceless artifacts on the walls.” “You’re grounded forever.” “Well, you’re a crusher of my dreams.” “What was our ONE rule for Spring Break…?” “I know, I know.. ‘Mom’s Not Taking Anyone To The ER’…” “Right.” “For the record, you never let us do anything fun.”
“Mom, wanna see a magic trick? Um, but also, it kind of includes fire… are you okay with that?” #NotScholarshipMaterial #LifeWithBoys
“I’m sorry he hurt you, but I think that’s the price of doing business when you punch him in the [inappropriate content], child.” #WhyWeDontHaveFriends #WhyWeCantHaveNiceThings
“We’ve been over this before… NO, you may not change your legal name to Aaron Rodgers Ewoldt.” #LifeWithAGreenBayFan #SendHelp
[yelling] “OKAY. HERE IS THE RULE OF THIS FOOTBALL GAME: IF YOU BREAK ANY BONES, THAT IS A FOUL.” #JonesinForTheER
“What? He tried to take my sandwich!!” – explanation for baby brother’s black eye #LifeWithBoys #KnuckleSandwich
“I think my pancreas hurts.” “Do you even know where your pancreas is?” “Wait, that’s a real thing? I thought it was just a made up word! I was just messing around!” #TeenGirlSquad #DramaSpleen
“But we’re trying out my new helmet!” #HeadCase #LifeWithBoys
That feeling when you’re super happy to be out of the hospital, but you’re also a little worried about your ride home… 🤣#TheLegendaryEdPoole
“I know you’re enjoying the battle, but can you die quieter? You don’t want to disturb the neighbors.” #LifeWithBoys
Goodnight and goodbye, dear old 2019 …
Moment by moment.
“The lines have fallen for me in pleasant places; indeed, I have a beautiful inheritance.”
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. 🙂
You were our surprise baby with your surprise personality and a most surprising life ahead of you that we could not have imagined if we’d tried.
We would apologize for our lack of expectation, but somehow the silly, crooked grin every time you perform the unexpected makes us wonder if you sort of just adore shocking us all.
Like living when they thought you would not…
Like walking when they thought you would not…
Like talking when they thought you would not…
Like a dozen other things that started as “NOT”, but you said “WATCH ME”.
You will always defy expectations, our sweet boy.
And somehow it’s only fitting that your cancer diagnosis includes the word “atypical” – because that’s exactly what you are and we love you for it.
Five years ago this morning, I doubt very much that five months were expected, let alone five years, but of course, you showed them and you continue to show us.
You will never have the easy life, my darling Chase, but you will have the precious life, for sure and always.
Whatever may pass and whatever lies before you…keep singing when the evening comes.
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.
