Most days I look like I’ve got this disability thing down. Like it doesn’t hurt as much as the early days. Like I’m confident and at peace with what is.
The truth is, your child’s losses never become less painful, you just adjust to living with a new level of pain. And you make peace with that. You quit fighting the pain and learn how to live with it. How to leverage joy out of dark places.
So when you’re standing in the library and you feel your eyes burning, you don’t tell yourself to get over it. You just ride it out, knowing the sharpness will subside. You let the tears come as you watch all the other kids run around, knowing you’re not a basket-case, but that pain is real and sharp and sometimes it crests in the oddest places.
And when you get home, you walk in your son’s room, and you tell him you love him. That you’re sorry. And you try not to let tears fall on his face.
Then you get up and you make dinner, read stories and carry on. As if you have this whole disability thing down.
It was 5 a.m. when I heard Calvin calling through the monitor. His calls quickly turned into cries as I ran down the steps. It’s been a nightly routine the last couple of months and it’s usually the same reason: his hips.
Both of his hips are dislocated and there is no clear and easy solution. Even touching his leg makes him flinch so my trick has been to quickly turn him onto his side, taking pressure off of his left hip – the one giving him the most pain these days.
I ran my hand down his back, the back with a bulge forming significantly on one side — his scoliosis has increased dramatically in his latest growth spurt. I repositioned his legs, bending them and putting stuffed animals as cushions between his knees. He quickly smiled and breathed a sigh of relief and contentment.
Most of the time we’ve been so completely consumed with helping him to breathe, that all of these lesser issues hardly register on our radar. But for the last month he’s had unusually good respiratory health and has been able to breathe without significant effort; if it feels like an elephant lifted off my back, I can only imagine how it feels for him.
He’s been so alert the past month, wanting to participate in everything from church to backyard campfires. We’ve taken advantage of this rare time by bringing him everywhere: the library, zoo, air museum, Sam’s Club (hey, it counts), playground, church, and grandma and grandpa’s. I can’t tell you how good it feels to see him like this especially after the spring and summer he’s had.
As I sat with Calvin in the dark, rubbing his back, talking to him quietly I realized our challenges have changed in the past few years. These days I am less overwhelmed with his disabilities and more overwhelmed with the gift of his life. I find myself less perplexed with God’s purposes (still a mystery) and more aware of His call to obedience — that very unglamorous but vital part of Christian life.
The truth is, our obedience hinges on trust. If we don’t trust God, we won’t obey, at least not wholeheartedly. Sure, we can act like we are trusting God, doing and saying the right things, showing up at church, but in our hearts we can foster unexpressed anger and mistrust of God. This is not new to humanity. I can’t tell you how many times I’ve gone down that path and realized I’m doing what humanity has done since Adam and Eve: trusting my own definition of good rather than God’s. And that always leads to destruction.
But there is a way to life and that is simply trusting God and His intentions toward us. I think at the root of it we can only trust God once we fully believe what He says about Himself: that He is good. We learn to trust and realize His goodness not by intellectual hoops alone but by framing our entire lives around the expression of His goodness: Jesus Christ.
God is the divine who is always looking to bring us back to Him, back into a relationship with Him that we’ve messed up badly — no, destroyed. Just look at our hearts, look at our world. He is our Creator, our Redeemer, our Restorer. Without Him we have no definition of good. And when we start grasping that, obedience is the response.
This obedience always plays out in practical everyday living, not just the big things. This is what it looks like in the season we are in:
It means faithfulness in caring for Calvin even when it is never-ending and exhausting. When you just want to go to bed instead of giving meds, respiratory treatments and setting him and his machines up for the night. Midnight obedience.
It means trusting Him when He doesn’t take away pain or suffering. This is hard when you watch your son literally suffocating from chronic lung disease. Not hard, impossible. But Jesus gives us strength and tell us He is with us “in our deepest distresses.” He weeps with us and calls us to carry our cross and follow Him.
It means believing God’s goodness even when my circumstances aren’t good at all. At least not in a temporal happy sort of way. Obedience is believing that no matter what disaster is in my life, God deserves my praise — He owes me nothing and has given me everything. And in our disasters He is working good and glory from ashes we can scarcely sweep together.
It means living joyfully because our hope is very real. We are not living around an idea, we are living around a reality: a risen Lord Jesus who is making all things new.
It’s our default to create narratives where our motives and morality are justified but God’s are murky — leading us to wonder if we can really trust Him. Thankfully, God is persistent in correcting our distortions by showing His intention and goodness to us in Christ through His Word and Spirit. And when I see that, midnight obedience becomes an opportunity rather than a chore.
It’s easy to say God’s grace is sufficient when everything seems safe and overflowing. It’s another to experience God’s grace is sufficient when everything seems chaotic and lacking.
It’s easy to say His strength is made perfect in our weakness when we feel strong and confident. It’s another thing entirely to desperately fall back on Him when our own weakness and fragility overwhelms us.
It’s been a week since I didn’t feel like throwing up at all hours and unable to eat or sleep. I’m fine, but my son is not. He’s hanging on the edge of a cliff and we are laying at the top reaching for him to come back up. He’s slowly climbing back up.
(It’s happened many times, but I’ve given up writing about it because a reader only can hear the story so many times. And I’m not into drawing out yet another health-saga – each important, but eventually dulling to us as we are inundated by more stories than we can absorb.)
Most of you are used to hearing about his chronic health problems, used to hearing about his fragility – but as his family, it doesn’t really get easier. We know him and love him; to us he’s just a boy with a full crop of hair and a big heart, who wants nothing more than an airplane ride on his dad’s lap. And good night!, it makes us stop breathing when we see him struggling to get his.
Living with chronic respiratory failure doesn’t come with a clear guide. “There are no right answers,” I’ve heard a thousand times and every time it sounds so off. How can there be no right answers?
But living with Jesus does come with clear answers. He calls us to follow after Him, and in our own cross-bearing He’ll walk with us and deepen our leaning on him.
It’s a hard lesson that I’m slow to learn. One of our pastor’s said recently, “We associate evil with pain, and good with pleasure. But God does not associate things this way.”
It’s a painful process to learn, it involves dying to our flesh and living according to the Spirit.
When we can’t rescue, we become more fixed on the Rescuer.
When we’re perplexed, we look more to Him who is Wisdom.
When we sorrow, we feel the comfort from the Man of Sorrows.
When we’re anxious, we look to the Prince of Peace.
When we’re overwhelmed, we search for the Rock.
Calvin is sitting peacefully in the PICU now. We are hoping he will continue to make small baby steps of improvements and get back to his baseline. Parainfluenza pushed his already fragile respiratory condition over the edge. If my gut serves me right, we’ll be home in two weeks back at his norm.
Thanks all for your prayers and for reading another of my (overly-reflective) posts when all you really cared about was the last paragraph. 😉
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.
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–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.*
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.
Test drive: Noah isn’t excited at all 😉
(*all money raised over the goal will be used to make our home accessible)
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.
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.
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.