getting out (a day in the life)

It’s a decision Darryl and I make repeatedly: should we bring Calvin or not?

Will the noise make him startle? Is there a place to change him? Will we have time to do treatments when we get back? What meds will we need to bring? Are his lungs up to par? Is there a place to suction? Will he zone out and be lost in the noise of seizures and the crowd? Is it worth the effort? Is there room for his chair? Are there ramps or an elevator? 

The van has made our lives a thousand times easier – we cannot even imagine taking him anywhere without it! But we still hesitate after running through the questions.

We decided to bring him with us on one of our family traditions: the annual play down at the Civic. Friends treated us to the Sound of Music about five years ago, and we’ve been back every year since for three hours of absolute joy. The kids talk about it all year, it is such a highlight. So far every time we’ve gone, Calvin’s had to stay home with a nurse (which left the kids very unimpressed and us just plain sad he wasn’t with us). This year we promised them we’d bring him along (for better or worse!) for the show “Annie”.

Before pushing “Purchase” on the tickets, I hesitated again. Tickets aren’t cheap and there was at least a 50% chance his lungs would be in too rough of shape to make it. The performances go long and we rarely keep Calvin out of the house for more than 3 or 4 hours at a time. Not because he doesn’t like it, but because his lungs needs a break. I bought the ticket, the kids approved and Darryl’s arched eyebrows told me he was just hoping for the best.

As soon as the kids were ready, they started up the van, cranked the heat and lowered the lift. Darryl and I were busy inside doing the last minute change, getting his feeding bag filled, making sure his suction machine was charged and ready, stocking up medical things he might need, packing his 9 pm meds, and then finally getting him into his chair and bundling him into his coat.  Phew! The kids are amazing with the whole “load up Calvin” process. One grabs his chair and takes him down the ramp while Darryl and I grab all the remaining pieces (and children) inside before heading to the van.

Darryl usually loads him up into the van and locks his wheelchair into the tie-downs in the back while Noah or Evie goes around to the front and locks in the two front tie-downs. Once he’s belted and strapped in better than a roller coaster ride, we do one last head check and head out.

The night at the Civic was extra special this year because Calvin’s neuro-developmentist and her husband were in the play. Dr. Dodge has been such an instrument of mercy in our lives since Calvin was just a few months old. What fun to see her as an old apple seller and a head cook in the “Annie” play. It gave all of us a laugh. The night was wonderful and the kids were thrilled. Calvin was really excited although it didn’t seem like he could see anything. He was trying to sing along with all the songs but he’d start in just seconds after they would finish. So yes, he had a few solo parts 😉

But by the third time we’d taken Calvin out as quietly as we could through the exit door, Darryl looked at me exhausted. “I think we’re going to have Calvin come alternate years.” We grinned wryly as we sat out in the hallway again, repositioning, changing and clearing him. What a strange life we live! Thankfully our other kids are very used to us attending to Calvin’s needs and did just fine without us, even Violet.

We were able to take him in the last 20 minutes without incident and I think it made up for the whole busyness of the evening. At the very end of the performance, Annie and the entire cast sang the song “Tomorrow” one last time. Calvin about lifted off his seat as he sang along with his own version of the line: “Just thinking about tomorrow clears away the cobwebs and the sorrow.”  

It was happy, beautiful and exhausting all in one. And his smile told me it was worth every bit of effort.

Being Seven {a day in the life}

His head is tilted back in his chair. His mouth hangs slightly open as he breathes quietly, his body heaving in once more and then out again. Chronic lung disease is no joke.

An inch below the surface his lungs continue their struggle: battling fluid that tries to fill every air sac, tube and pocket of space. His will fights hard and he breathes in again, forcing oxygen into fluid saturated pockets. Oxygen rushes in and then, with concerted effort, his exhale squeezes air out. He gets relief until the next breath.

Sometimes being seven and war-torn go together.

War torn because each breath is a battle, fought 40 times a minute. Some days are better than others.

It’s no wonder his head is tilted back in exhaustion. Still a grin, that lopsided knowing smile that can change his face in an instant. He listens in on the chatter drifting from the dining room. Noah and Evie don’t realize they’ve got a third player as they build imaginary worlds with blocks and figures.

His eyes look in the direction of their noise, looking for them, only to be greeted with more black. Or maybe, as Dr. Geddie surmised, he catches a patch of sight, like peering through swiss cheese.

His smile widens and his legs stiffen out straight in front of him. He’s smart, trying to manipulate tone to get his body to move. But it doesn’t, so instead a happy call rises above the gurgle in his throat. Then he relaxes back into his chair, making up for the effort and catching his breath again.

His eyelids flutter and his eyes roll back slightly into his head, obviously tired from this small effort. But giving up is not in his playbook. 

His bedroom lies adjacent to the kitchen. Each morning as I move about measuring coffee, pouring water and washing leftover dishes from the night before, he calls me.

I tuck the wet dish towel back in the rack and head down the hallway to his room. The machines rumble, his lungs crackle and two little arms shoot up eager. They’re bent at an odd angle but I don’t care. All is see is invitation, so I offer my cheek for his kiss. The dry chapped lips find me and his arms rest on my shoulders.

I can hear the crackling and whistling in his lungs as he alternates between deep sighs of contentment and sounds of joy.

A life of exhaustion. 

A life of battles that will never win the war of chronic lung, but they do win him time. And that seems worth the price to him.

A life of joy.

A new day breaks and again he calls from the room: Come in and love me, mom! It’s a new day.

He has learned to fight the battles well.

He’s learned contentment.

He’s found love is enough.

One Foot at a Time

I’m feeling a little isolated from the rest of the world, inside my four walls and busy repeating the same tasks over and over. It’s tempting to be discontent, to feel like life is passing by. But I know that’s not true, this is a full life given to me. Full of joy and meaning, and yes, sometimes hidden under the guise of “mundane”.

Jesus Isn’t Looking for Flashy is a post I wrote yesterday for Not Alone, a website designed to support parents of kids with disabilities.

I hope it encourages you, no matter what “mundane” tasks your day may be filled with. Jesus isn’t looking for flashy, He’s looking for faithful!

Click on through to read the whole article:

It’s diapers at dawn and diapers at dusk. And a whole lot more in between.

As a follower of Jesus, I didn’t see this coming. This call to be a disciple of the mundane–changing diapers on a big kid, suctioning, stretching limbs, giving meds…..

 

Lately

Marlene and I carefully balanced Calvin on his belly. His body formed to the exercise ball in perfect rainbow shape. His trach pressed against his throat, making him cough forcefully. We rolled him gently back and forth, letting him enjoy the pleasure of being off his back or in a sitting position.

Sophie massaged his legs. His small, skinny legs with purplish feet at the bottom. Five years of a body not working evidences itself in poor circulation, curved toes and legs devoid of calf muscles. I can’t help but feel sad watching his body struggle to maintain itself.

His arms stuck out in front, twisted oddly. We tried to straighten them and then bend them slowly, careful to keep his shoulders from popping in and out of joint. Calvin straightened and stiffened his entire body, the only way he can create movement, and lifted his head with great effort. Soft chestnut hair framed his face, curling down his neck. Fingering his hair lifted his lips into a one-sided grin.

His gums are unnaturally thick, most likely a result from seizure medication. His ribs are widened with the lack of muscle to hold them tight and in-line. His hands are always cold and flushes race over his body every morning, one half of his face flushed and hot while the other remains white and cold.

At night lately his alarms go off frequently for very low heart-rates. I come down to find his lips white, face pale and turn him or wake him up. His heart-rate picks up and color floods his lips again. The alarms stop.

In spite of this all, he carries on bravely and without complaint. As we busy about in the kitchen making coffee, packing lunches and carrying on in our general mayhem, he calls. So happy to hear our voices, happy to be a part of it all. Darryl tickles Calvin with his beard and he responds with peels of laughter and stiffly moving legs moving like chopsticks that keep crossing.

At night, he and Evie curl up together; slowly their excited whispers and “talking” fades into deep, even breathing. She keeps him busy, bringing in bowls of snow, putting droppers of orange juice on his tongue and creating books in “braille”. At least her version of it. I wonder if it fills his dreams.

Tonight Calvin sat in my lap as we marched through chapters from “Justin Morgan Had a Horse”. Noah curled up close and wrapped Calvin’s arm around his neck. Quiet contentment.

And so our days go. Brimming to the top with happiness and simultaneously with longing and sadness.

Bittersweet.

 

Strangers and Friends

It’s funny how there are preludes in life.

In Asia I had to get used to having my personal space bubble invaded. Maybe popped is a better word. The aisles in the market places were close; meandering beneath leaky roofs, watching for beggars along the floor and being jostled by fellow market-goers was quite different than the space we enjoy while shopping in America. If one bumps into someone in the aisles at Meijer there is a strong apology, “Oh, I’m so sorry! I didn’t see you!” In Asia bumping, touching and leaning against another is not even acknowledged.

If you do happen to find a bit of space in a department store you will soon be followed closely (as in several inches) by an employee. It’s considered good customer service! Some days I would feel claustrophobic, if only I could just get some space.

At home it was the same story, and not from the three little ones about me. Each morning I would wake up to having several people in the kitchen. Our home was a townhouse with the backdoor connected to a shared laundry and cooking area. Neighbors and helpers would be busy slicing up fresh fish, grinding chilis, hanging laundry in anything but quiet morning voices. I’d stumble about in my pajamas while getting the three little ones started for the day, trying to participate as little as possible in conversation and still not be rude. Give me another hour and I’m yours.

The prelude part? Today I’m in my house. In America. Pajamas? Check. And again there is someone in my kitchen. This time it’s not the neighbors, it’s a nurse.

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Calvin’s care nearly drove me to despair in the early days. He was constantly coding, we were ICU nurses without ever catching a break.  When nurses came into our home I was relieved. And simultaneously resentful.

Many mornings I would retreat to my room or cry freely in a hot shower. I didn’t hate the nurses. I hated that I had to have a nurse in the home. I didn’t want to share my personal space with people freely coming and going, we were a job to them but this was my life. This was their case but it was my son.

Orienting new nurses was hard. Calvin is unique in his needs, his seizures atypical and it takes several weeks before you can read him. Sometimes nurses would be doing stretching and playing a game with him and happily announce, “He’s laughing!” It was hard to say, “Please stop, I know it looks like he’s enjoying it but he actually often laughs when he has pain. It’s hurting him.” And I felt rude and guilty that Calvin was being cared for by someone who didn’t know him like I did.

“Make sure you use the nursing, you need a break!” well-meaning friends would say. But what if it’s at the risk of your kid’s comfort? Slowly each nurse began to learn his cues. They knew that when his eyes dropped and stayed down to lay him on his back and give him rescue meds. They learned that he loves music while he’s doing his treatments. They even began to relax as the kids jumped all around him on the bed.

Some nurses nearly had a heart-attack caring for him. It’s not easy to watch a kid struggling to breathe or having seizures. It’s not easy to watch an adorable kid with brown curly hair and huge smile succumb to progressive lung disease. It’s not easy to realize you can do nothing when the alarms are beeping because all is not well and there’s nothing left to do. Except watch and hug and comfort.

Some nurses are not a good fit. I had a hard time keeping my cool as one nurse nonchalantly reported to us that Calvin was not breathing well as she texted friends on her phone. Calvin was on the couch, pale and struggling for every breath. She didn’t come back.

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Nearly two years later after nurses first started entering our home, we’ve got a groove. There are a few main nurses that care for Calvin, anywhere from 4-8 hours during the weekdays. They are our life-savers

They know Calvin’s cues, his complicated medication regimes and nebulizer treatments. They know when he’s happy or when he needs a little extra love. When Calvin has been very fragile there are tears in their eyes. They treat him as if he is a kid, not just a case. A boy who wants to have fun, a boy who wants to connect.

My other kid’s cry foul if they get home and they’ve missed the nurse. They love to sit and chat, tell them about their new school, their latest exploit or ask questions. They add fun to our days. Once while at an animal park, the nurse insisted on buying the seed sticks for the kids to try. What you don’t see in the picture is the nurse laughing and laughing as the birds flocked us, Calvin and his chair.

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I’m glad they are in my home. (Even if I am still in pajamas when they arrive.) I haven’t always said this, but I’ve mostly adjusted and we happen to have some exceptional nurses.

Darryl and I were talking into the wee hours one night. Having conversations no parent wants to have–funeral arrangements. Maybe Calvin will have ten more years, maybe not. Either way it’s an expense nobody wants to save for, an event nobody wants to plan.

At some point I rolled over in surprise. “Darryl, what about the nurses?” In many ways they will have deep grief too. They’ve ruffled their hands through his hair countless times, rocked him and sang joy into his days and stood with me as he left for school.

That’s when I realized, they’d have to be sitting right with us–they’re like family. They share our joy and they will share our sorrow.

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Awkward Grocery Moments (a day in the life #32)

What is it about kindness that can reduce us to honesty and vulnerability? There is still the occasional day my emotions feel so raw that I pray nobody will talk to me as I wander the aisles of the grocery store, getting a few extras for supper. Calvin can’t sit in a cart so I push him in his wheelchair which makes us objects of curiosity and sympathy. Not that I’m not grateful, it’s comforting that people care but it is hard to be reminded everywhere I go that something is causing people to stare at my son. Whenever I’m with him we can never float in oblivion, instead we are watched in every aisle.

I’d wandered all the aisles going about my business, trying not to be sensitive to other’s eyes and avoiding eyes so I didn’t have to make conversation. Normally I don’t mind but there’s times when the grasp on my emotions is too thin. We were waiting in the checkout line. Calvin had been fussing so I was holding him although with his lack of muscle tone he more or less just drapes over me. An older woman ahead of me looked compassionately at us and I smiled back as if everything in the world was just right.

“Honey, what’s wrong with him?” she asked curiously and with concern. Words always fail me. I feel like saying the unpolished truth, “He has massive brain damage,” and see if she has as much trouble as I digesting it. But labels make us feel safer, they draw the lines more clearly between  ‘us’ and ‘them’. He has that and she has this, it seems how society packages our brokenness in neat little packages and tidy diagnoses. And so I caved and gave the safe and acceptable answer, “He has a neurological problem.”

“Can you do therapy to fix that? Will he be okay?” she asked. I stared incomprehensibly at her. It’s not her fault, we always want a happy ending don’t we? It’s hard to end a story without the silver lining. But some days I don’t want to think about the silver lining. Some days I want to just bury my head in his crazy hair and hold him tight and dream of him reaching for me.

“No, he’s not going to be okay,” was all I could say. By this time all attempts to wall in grief were crumbled and the woman and cashier stared dumbly at me a mess of tears and tissues. They said nothing and proceeded to finish their transaction.

There’s a time to let grief linger in our souls. A time to taste the bitterness of brokenness. A time to acknowledge our inability to beat the sorrow. A time for letting others see our grief instead of presenting it in a way that glosses the deep crevices in the heart. Grief makes Jesus and His salvation all the more healing and hopeful for our broken souls. Are you overwhelmed by grief this season? Don’t hide your grief, run to Jesus with it. Again and again.

Crazy-haired boy :).

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