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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.

When You Moved for a Kid Who Can’t

God often brings good out of something I think is a total loss.

A month ago, when our van was broken down on the side of the road, we had a minor disaster on our hands. I was in the car with all five kids on the way back from camping, temperatures were soaring and my van was spewing smoke and refusing to move another inch. Calvin’s temperature started climbing, Violet wanted more crackers (because, of course that’s the most important thing even if the world is falling apart), and the kids took turns freaking out about being a few feet away from cars zooming by on the highway.

Calvin's set-up camping. It brings a new dimension to packing!

Calvin’s set-up camping–everything but the kitchen sink!

We all arrived home safely due to the help of Darryl swinging back and coming to our rescue and my sister Kristin loading kids in her van. A van broken down is not a major disaster, but it was one more major expense to the long list of realities that have a way of sapping the spring from your step. We debated at night what to do, pour more money into our van that was already high on miles and soon wouldn’t work for Calvin? It seemed like the only option we had.

The next morning my sisters called me up to say they were starting a van fund for Calvin. They reasoned Calvin was maxing his car seat and becoming more difficult to transport anywhere from our home, so why not start a fund now? The idea was ignited by visions of our smoking van and the fact that Calvin loves to go places.

In no time they were planning fall festival events, a cook out, and even contacting the president himself (ok, not really, but they were determined). I took the role of the sheepish doubter on the sidelines. I wasn’t sure what made me more uncomfortable, the fact of asking people to give actual dollars and cents or the amount of the dollars needed for a van. One seemed horribly awkward and assuming and the other, downright impossible. 

I thought we should pack away this crazy talk, but…Calvin. What if people wanted to show their love for him? What if people wanted to give back to him the way he has given to his community? What if we were just standing in the way?

A few days later my sister started Calvin on the Move and gave the opportunity for people to give. The next three weeks blew us away as the goal was exceeded.*

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Darryl and I have felt some embarrassment with the fund, but when I run into people who are so genuinely excited for this project, we tuck our pride away. It’s not about us. Or even about Calvin. It’s about the community coming around a boy, defenseless and unable to provide for himself, and saying:

You have value.

You are loved.

We care about you.

We want to help you.

And this, this is the beauty of God’s love. He takes the heartbreak of disease and terminal diagnosis and intermingles hands and hearts so this is no longer a story of just a boy. Or a boy and his family. It’s that and more.

It’s a story of God providing abundantly for a little boy who couldn’t even ask.

It’s the story of God encouraging and equipping a family often tired and defeated by the endless needs and lack of progress.

It’s the story of a community witnessing to the goodness of God and reflecting that to each other. It’s the story of people being moved, impacted and changed from someone you’d least expect.

We don’t know how to say thank you for such a gift. We want to tuck away a little embarrassed (admittedly difficult in a mini-bus), but I think instead we’ll drive that van remembering the tangible love of the Lord and His care for the most vulnerable. We’ll remember on days we might feel entirely alone, you surround us. We will remember that even though loss is real and heartbreaking, God brings forth beauty out of the most painful parts of our lives.

And for all this, we give thanks.

Noah isn't excited at all ;)

Test drive: Noah isn’t excited at all 😉

(*all money raised over the goal will be used to make our home accessible)

Mother’s Day – It’s Complicated

she wept

I sat in the folding chair at my kid’s school today, grinning at my son and daughter up on the stage. It was the annual Mother’s Day program and my heart overflowed watching them—my son staring at me unwavering and my daughter sneaking shy glances my way.

Next to me my other son, Calvin, sat in his wheelchair, listening to the kid’s voices fill the gym. He grinned his signature side-smile at the songs and tried to join in, vocalizing over his trach.

I felt so much joy and sorrow in one moment; joy in what is and sorrow at what’s been lost. How can a simple holiday feel so complicated?

I reached over and held his hand, letting him know I was there. And then I looked up and locked eyes with my kids on the stage, gave a big thumbs up, and let them know too, I’m here—I’m always here for you.

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That’s what we do as mothers, we carry on bravely, even when our hearts feel like they might break.

We smile and tell our kids that everything will be okay, even when our world feels upside down.

We reach over and hug our child, letting them feel joy and love and save our tears for the shower.

 

We learn to delight in what is and let go of what illness and disability has robbed us and our kids.

We’ve learned behavioral interventions, tracheotomy care, g-tube care and have become therapists in our own right.

We stay up countless nights comforting our child through seizures, illnesses, and hospital stays.

 

We’ve persevered even when we wanted to run the other way. 

We’ve discovered value and beauty that takes our breath away, while the world passes by.

We’ve wrestled with God in dark places and experienced grace that’s changed us.

 

We’ve grown through things we never thought we’d survive.

We’ve been stretched to the point we’re afraid we’ll break.

We’ve seen joy come in the morning after sorrow’s long night.

 

We hurt deeply. 

We love deeply. 

 

Mother’s Day; it reminds me just how complicated, lovely and rich my life is.

 

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Are you a special needs parent?

The Grief Workshop is an opportunity for you to tell your story and embrace the joy and loss of it all–and it’s starting next week (May 16)!

 

Write Your Grief is a 3-week, online workshop, designed to guide you in exploring loss in a healing way. Led by Kara Dedert, you will experience the power of creative ways of expressing grief and create your own treasured compilation that tells your story. Join a dynamic group of parents of kids with special needs, dedicated to telling their story and embracing all that it holds. Learn more and register here. 

grief special needs parent

Couch Sessions

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Tonight found me in one of my most favorite places– in my living room, with my mom and I on opposite couches.

It’s been a comforting rhythm in my life, these talks and time with my mom. I can remember one “couch session” six years ago: I rocked Calvin in my arms and bawled my eyes out to my mom. I couldn’t bear the pain of the life Calvin was going to live. I couldn’t see over the mountain of his losses. I felt sick and didn’t see how life would be worth living if you could never express yourself, reach out for a hug or let your feet carry you on adventures. My mom sat in the pain with me.

Tonight was so different. We sat on the couches and Calvin was again in my arms. Well, sort of. His head was on the armrest and the rest of him stretched across my lap and onto the couch. He’s grown. We’ve grown.

On top of devastating loss, I feel gain too. And not because everything turned out fine; actually all of our worst fears came true. But what time and grace had to show me was the value and joy Calvin’s life holds despite severe disabilities. I perceived basic abilities equalled happiness. In some ways it does, but Calvin has so many other unexpected abilities that bring a totally different type of joy.

Our families and friends have come together and heaped out love on us and Calvin, it’s shown us the depth of their loyalty and love. God used Calvin to show us this beautiful gift.

I would do anything to hear him say, “Mom!” or to have him reach up and hug me. But he’s shown us unconditional love and joy in who we are with wide, warm eyes, affectionate kisses, and legs that jerk in unrestrained excitement. His love has been so pure and whole-hearted, it’s made me grasp just a little bit more the nature of God’s love.

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Every night, Calvin and his sister are snuggled up tight. She told me, “I don’t know why I always hold his hand, I think it’s because he makes me feel safe.”  Funny, isn’t it? The most defenseless person in our house makes the most strong-spirited one feel safe.

There are so many more, but for tonight this is what comes to mind. I thought I was dealing with wreckage that could never be salvaged into one ounce of good. But there is so much beauty here in the brokenness and the hurt of it all, I’m a little stunned with it all.

I don’t think of loss and joy as two separate categories with tally marks in each leaving us to figure out which one is greater. Instead, I see them as two lines that follow our storyline, both very real and both very much a part of us.

As Calvin’s disease progresses, we’re making changes in his life. Loss continues to be a part of our story, Calvin’s story. But today, all I feel is overwhelming thankfulness for the gift of his life.

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Write Your Grief is a 3-week, online workshop, designed to guide you in exploring loss in a healing way. Led by Kara Dedert, you will experience the power of using creative ways to express grief and create your own treasured compilation that tells your story. Join a dynamic group of parents of kids with special needs, dedicated to telling their story and embracing all that it holds. Learn more and register here. 

Flickering

sonoran deser

dusk in the sonoran desert // karadedert

No matter how much time

we get

it’s

never

enough

 

Like a shooting star

your life

it shines

boldly

brightly

I burst

 

The darkness

after the

light

it’s what I fear

and the

flickering–

it’s here

 

You will see

glory

us – pain

for

now

 

But today I stare

it’s

love blazing

I

can’t look

away

 

Stay away

night

 

Today we

must

dive

delight

before you

come

 

 

His Delight

Do you doubt God could ever love someone like you–with all the mess-ups and failures that stick to your side? Maybe you imagine you’ve just barely squeaked in the back door of God’s grace.

I do.

But parenting Calvin has given me a glimpse into the breath-taking love God has for us in Christ Jesus. It’s made me see the door is flung wide open in Him.

One sight of this mercy, grace and love extended to us as adopted sons and daughters will take your breath away.

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We held the glowing cake in his line of remaining vision, behind him and to the left. Four candles flickered as the air swept currents of “Happy Birthday” notes swirling around our living room. Calvin’s eyes danced with excitement at the candles, his grandpa’s arms and the siblings crowded around.

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This fourth birthday was the first to see him alert and lively, not teetering on the brink of life. All night long he tried to talk loudly, waved his arms in short uncoordinated little punches and kicked his legs in jerky stiff movements. Nothing works the way it should but it was pure beauty to his family.

This daily care of Calvin, this daily entering his world and being satisfied with altered joys is giving us glimpses of the Father’s love that take our breath away. It’s not made up fancy, it’s real hard-core Bible truth, this Father-love and delight in His own.

My eyes have read the words over and over but my heart and mind dismiss this grace when I think of my heavenly Father thinking of me. I forget what it means to be “in Christ” and the satisfaction accomplished for sinners.

An unspoken theology follows my footsteps and steals joy and isolates me from God (and I would bet a good number of you too). It tells me this perfect, awesome God rather reluctantly saved me. And once saved He now puts up with me with much frustration and disappointment as I fall often on the road of life.

I live under the law and fail to grasp the grace there is for me in Jesus.  I hardly dare whisper “He delights in me! He loves me!” I dishonor His love and Christ’s work when I fail to believe it.

What if Calvin were to respond to me that way? What if he stopped moving and responding to me because he was ashamed of his movements being uncoordinated, awkward and impaired? What if he limited his responses to me because of it? It would break my heart!

I look for and find delight in every expression he gives. I laugh and smile to see him filled with joy that comes from any exercise of his rigid body; I rejoice in him regardless of improper, uncoordinated and clumsy movement. It’s not a perfect example, this earthly relationship, but it gives me a glimpse into the immensity of the Father’s love and delight in us because of Christ. 

Even after grace our spiritual deformities leave us crippled with weakness and sin. But this does not make God dismissive or distant from us, ”As a father shows compassion to his children, so the Lord shows compassion to those who fear him. For he knows our frame; he remembers that we are dust.” Ps. 103:14

My praise is too rusty, fickle and feeble. I fall, I fail, I’m slow to learn. But the Father tenderly comes and turns my eyes to Jesus again. He sees life springing in my heart, the seeds he planted and He longs for fullness.

These signs of life, responses to grace and love are joy to our Father’s heart. Why? Because we’re so wonderful? Not so much, rather He delights in us because of the satisfaction of Christ on our behalf. 

As we hope in Christ, His reflective glory is written upon us and brings praise to the Father (Ephesians 1!). He sees the stirrings of life and the resemblance of His likeness in us as we respond to His grace.  He delights in us as we delight in Him.

“The Lord your God is in your midst, a mighty one who will save; he will rejoice over you with gladness; he will quiet you by his love.” Zeph. 3:17

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