Last night I woke up at 3 am to Calvin’s crying on the monitor. I found him in bed burning up and having seizures which left him trembling from head to toe and largely unable to respond to me. I wasn’t shocked, the past week he’d been struggling with respiratory issues but it seemed like the antibiotics were “keeping the lid” on it.
After giving rescue seizure meds, Tylenol and a good old momma hug he finally settled in again around 5 am. Today he’s pale, has low oxygen levels and spent most of the day sleeping (seizures wipe him out).
Even though this isn’t anything new, the call to renew my trust in God and his care is a daily call to faith. It’s much easier to believe we’re alone, forgotten by God and have every reason to despair when we look at what we see.
It’s easy to listen to whispers of despair telling us our faith is useless, that our so-called God is a fantasy and that our hope of redemption is just a way to plug through the pain.
And it’s exactly in these whispers of despair that God calls us to walk by faith. Circumstances are real, but just part of the story. The bigger story is God’s forever promises to his people, secured by Jesus:
He will never leave me or forsake me.
He is transforming me from one glory to another.
When I go through deep water, he is with me.
He intends goodness and mercy all the days of my life, even when he uses sorrow and pain to make that a reality.
For most of us, our struggles are private, confined to the walls of our homes or our hearts. We’re called to a simple, quiet obedience in God. It honors him, his word and grows our faith.
However, there are times when God pulls back the curtain of the everyday and gives tangible testimony to his presence and care. He allows faith to be sight, even for a moment, reminding us to renew our faith and trust in him.
Two weeks ago that happened. God pulled back the murky curtain of uncertain circumstances and gave us a sweeping view of his provision.
Carly and I had spent a lot of time researching options for the van, measuring his wheelchair and trying to figure out creative alternatives. Most people use wheelchair accessible minivans but with five kids, they were out for us. Our next options were a shuttle bus (the kids thought this would be the coolest thing ever) or a Ford Transit.
What we didn’t realize was the Transit comes in different roof sizes, low and mid roof. After talking with the mobility center, we realized we wouldn’t be able to install the lift in the low roof van. We headed back to the dealership and found one mid-roof passenger van. Our hearts sank when we realized the price was 8-10 thousand more than what we had.
We went home not sure what the next step was going to be. The mid-roof Ford Transit is hard to find, after searching online we found only a few in the US for sale in other states. Most customers get them made to order, they aren’t just sitting around on a dealer’s lot. Used ones are hard to come by since they just started making them in 2015.
“You’re not going to believe this,” he said. “We’ve got a truck here, unloading around 8 mid-roof Ford Transits. And they’re all passenger vans, not cargo.”
We went back. Sure enough, lined up in the lot were 8 of the exact vehicles we needed. Every color and option was available.
But the price. That was still an impossibility.
“Yeah, it’s kinda crazy,” Aaron said, “these are actually brand-new vans but we’re selling them as used. They were sitting on another lot and apparently they were damaged by a hailstorm so we’re selling them at a much lower price. We’ll take out all the dents, you won’t even notice.”
So let me get that straight. An hour after we left, 8 vans of the exact type we needed, were dropped off unexpectedly at that exact car lot. All of them passenger vans with an extended base for a wheelchair lift. All of them happened to be in a hailstorm which happened to reduce the price to what we had planned on.
It was excessive, undeserved. But then again, that’s what grace always is.
“You know that what happened is pretty crazy, right?” Aaron said as we signed the papers a week later. “I haven’t had those things on my lot for a year and a half. Then, an hour after you left, I’ve got eight.”
It’s not every day that God sends these tangible reminders of his care and provision. But when he does, it is a grace that gives boldness to our steps and a fresh reminder of his presence during weary nights and lonely roads.
So these days, we are thanking God for his provision through an unlikely source: a hailstorm. In September.
This is our super helpful and proficient salesman, Aaron Powers, who got to witness the “crazy” with us.
This is one of Calvin’s nurses, Roxanne. In tears. Like every other nurse has been when they found out about this gift. What a testimony of God’s grace this van has been.
Calvin was already not feeling well in this picture, but his cousins and siblings took care of making it an exciting experience for him :).
Writing about God’s provisions is two-sided for me. On one hand, it is a way to point others to our great God and say “Look! Look what He can do! He is faithful, He is constant, He is your provider. Let me tell you what He’s done for me!” But I’ve been in a place where stories of God’s provisions for others taunted me. They were like bitter drops on my thirsty soul–a soul that was feeling left out on the line, parched, forgotten by God. A detail forgotten in the Great Care Plan, providence.
My husband, Darryl, and I had experienced the close and gracious hand of God in unique way as we served in mission positions in Phnom Penh, Cambodia for five years. But when the Lord gave a unique gift in our fourth child, Calvin Luke, it seemed like His hand of provision drifted away and instead began a very painful process of stripping us down to the bare, raw parts of life and soul. Calvin was born in Bangkok, Thailand with microcephaly (small head) and severe brain damage. Today Calvin is nearing three years of age. He’s nearly blind and cannot roll, hold a toy, lift his head, or perform any sort of purposeful movement (except for opening his mouth to kiss us, sweet eh?). He cannot eat by mouth and has trouble with an airway that collapses under stress. We are now living in the United States so he can receive proper medical care.
The time between birth and the present have the closest misery to hell we’ve ever experienced. Our Father saw fit to take away our life in Cambodia. A life we were thriving in and a ministry bearing fruit. He stripped us of a job and income. He stripped me of the ability to mother my other three young children, they were largely underfoot and ignored as we struggled to keep our youngest alive. He stripped my illusion that God would keep my children safe from harm (especially felt when our other son, Noah, had to undergo major open heart surgery in the midst of all this). He withheld his deliverance and pressed us harder and harder until it felt easier to die than face another day.
Stories of provision stung in that place. Stories of God giving fulness when my plate was empty and my soul so hungry and my body so weary. “Just a crumb, Lord, just a crumb?” I’d plead. Did God love other believers better than me? Why was His hand so hard, why did He return our confident prayers with a staggering blow? Mercy, show me mercy. I became bosom friends with David, and met with him in the Psalms. He gave words to my pain and frustration: “What profit is there in my death, if I go down to the pit? Will the dust praise you? Will it tell of your faithfulness? Hear O Lord and be merciful to me! O Lord, be my helper” (Psalm 30:8-10).
David wrestled with God, argued or made a case to God for His provision while David was in an undelivered state. And this became our pattern in pleading for our heavenly Father’s provision with our souls and material needs. When I began to question if the Lord was really hearing or if the Lord was there at all: “Keep me Lord, I am full of unbelief and doubt and anger. I will wander far from You if you do not keep me.” When we’d wake to another morning of seizures and felt too weary to lift a foot from bed: “Where is the joy that comes in the morning? Give us the morning, Lord, put an end to this long night.” When my soul would drown in sorrow and be threatened by strong unbelief: “Lord you’ve said that we can cast our burden on you and you will sustain us! Sustain then Lord, my feet are slipping. Take this burden.”
We would preach God’s very words of truth and provision to ourselves constantly. We were standing in the desert and knew He could make an oasis in the soul-searing pain. We’d remind each other that there would come an end to this, even if we never knew God’s deliverance on this side of the grave, there would be an eternal provision, an eternal restoration: “And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you” (1 Peter 5:10). When we were pressed hard by cold providence we reminded each other of the Lord’s love and tenderness of us: “He who did not spare his own Son but gave him up for us all, how will he not graciously give us all things?” When prayer seemed pointless: “Trust in him at all times, O people; pour out your heart before him; God is a refuge for us” (Psalm 62:8).
Do you see how He has already made every provision for our souls in his Word? It waits for faith to be made alive and real and comforting to the soul. The very words we would remind ourselves of were works of His hands to draw us closer and closer as we looked over our shoulders to unbelief and fear. He kept our souls. He is keeping our souls. Yesterday’s provisions are not enough for today. I need fresh provision each and every day. My soul wilts and my heart feels heavy as I look at circumstances but His word places exuberant joy and praise in my heart. It gives me life each day. This is His provision. He has turned the painful realities into real places of spirit-work. Places where we can meet Him more clearly with the layers of distraction peeled away. He has made our broken jars of clay alive with the light within. This is His provision.
I could tell you stories of the “rain of mercy” God gave to our family after that dry hard time. I could tell you about the checks that came in the mail so we could pay rent, buy groceries, and get hair-cuts. I could tell you about the check that came from a stranger that refilled the savings account which had completely emptied from medical bills–the exact amount we had to start with. I could tell you about the first house that came up in our budget, how it had a handicap room on the main floor and a playground across the street–two things I’d specifically been praying for. I could tell you about house-hunting and how God gave us the house we are now living in–the very house we’d been renting. But I wonder if you too are in that dry place–the place where no material provisions have been made. I wonder if you too feel strung out and left to dry. Would these stories be salt in your wounds?
Take heart my friend. Open His Word, there is provision for you too. It’s better provision than money or houses or health. It’s soul provision–real live, spirit-accompanied soul provision. Wrestle with God for it. He can and will saturate the thirsty soul with His provision. “But may all who see you rejoice and be glad in you; may those who love your salvation say continually, “Great is the Lord!” As for me, I am poor and needy, but the Lord takes thought for me. You are my help and my deliverer; do not delay, O my God”
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.
This article was originally published in the Banner of Sovereign Grace Truth as a meditation for kids. Read it around the dinner table or talk it over at bedtime; you might be surprised where the conversation goes!
On a drizzly Saturday afternoon a young teen walked his dog along in front of our house. Darryl was outside loading Calvin’s wheelchair into our van, “How are you?” Darryl asked as he closed the trunk. The German shepherd paused as the boy tightened the leash and turned to Darryl, “Could be better,” he said honestly. “What’s going on?” Darryl asked. “Oh, lots of stuff,” he mumbled. “You can tell me about it,” Darryl offered. “Oh never mind, but thanks for asking” and off he went with his dog. Darryl could only call after, “You can come by anytime, okay?”
Have you ever felt like that boy? Like your problems were too complicated for someone else to understand? Maybe your troubles seem too messy, embarrassing or just too personal to talk to about with others.
The Lord delights in kids coming to Him with needy hearts and big problems. Jesus knows what it’s like to be a kid; He was one too! He’s not at all out of touch with your life; He made you and knows every detail about you! He knows your character, your interests, how many hairs are on your head and what you had for lunch. Sometimes it may feel like there is no one you can go to, but that is not true. Whatever your trouble is, you can go to the Lord–especially when you’ve got problems.
You can go to Him when you’re scared. It’s not just little kids who get scared. Big kids (and adults!) get scared, too. Whatever your fears are, bring them to the Lord. In the Psalms David describes God as a refuge and a fortress. He is a real comfort to those that take refuge in Him.
Are you or your friends getting into a heap of trouble? You should not only go to your parents for help, you can go to God for forgiveness and help. Consider the friends you have, do they love the Lord or do they lead you away from Him?
You can go to Him when you’re sick. Have you lain in bed shivering, aching and feeling terrible? Maybe you have an illness that you live with every day. Ask Him for strength and help. He can use even your sickness to bring you near to Him and give you joy and peace in it.
Maybe you’re sad about things you haven’t dared to tell anyone. The prophet Isaiah describes Jesus as a “man of sorrows”. He knows what it is to have a heavy heart, so pour yours out to him. Ask Him to fill you with joy that comes from knowing Him and His salvation.
You can go to Him when you’ve sinned. That’s when you should run to Him! It’s a temptation to hide our sin (we’ve been trying to do that since Paradise) but we need to go quickly to the only One who can wash away our sins, Jesus Christ. If you don’t feel sorry for your sin, ask Him for a repentant heart. He can change you from loving sin to loving Him.
Problems in your life do not disqualify you from going to God; in fact, the realization of our problems is often what God uses to draw us to him. We can trust our entire lives to God, the One who has gone to the great length of the cross to rescue us from our biggest problem: sin. When Jesus cried out to the Father in anguish on the cross, there was no answer or comfort. He bore the anguish of sin alone so that those who trust in Him would never have to.
I hustled through the aisles at Meijer, a local grocery store, doing a desperately fast grocery run. A crowd was headed my way for dinner and I had no choice but to get a few last minute extras with baby in tow. She gives me about 10 minutes before I need to start passing crackers into her little birdie mouth; if I break a stride everyone in the store knows.
So there I was, tossing the tortillas in the cart when I stopped in my tracks. It was an old Bryan Adams song, Back to You, that stopped me and took me back. Immediately I felt deja vu, no longer was I thirty-three shopping with my fifth baby. For a moment I was seventeen all over again, feeling the same desires, remembering the life I was searching for, the one that would make me happy. The only thing missing was my friend and my 90’s “Cool Breeze” sweatshirt.
I scrounged in my purse, fished for a cracker (10-minute mark) and popped it in Violet’s mouth. I was startled by the clarity of those memories. Almost nothing I’d dreamed of has actually happened. There were no purple Jeep trips to Colorado, no marriage to the guys we thought, no fantastic careers. Had I not arrived? At all?
That night, we all cozied up in our small, still-not-fixed-up home. I pushed meds into Calvin’s feeding tube while my friend, Allyson (former Bryan Adams fan, I’m sure she’d want me to say that) was busy making sure her son wasn’t scarfing all the toys from our house into his pockets. Our babies were playing by the steps, making escape attempts. Darryl sat on the couch, exhausted from a busy week at work, Bud was feeding their three littles. More dear friends from our lives in Cambodia joined us for dinner and fellowship.
The house was bursting at the seams. And so was my heart.
Almost nothing of what I’d dreamed of has come true. And I remember those desire so fervently, I could taste them. Really.
But God has given me more. He’s changed almost every desire of my heart. He’s given me things I thought were curses and turned them into some of the deepest joys of my life. He’s not withheld pain, sacrifice–in short, bearing our cross, but His purpose is good.
That’s the thing with being a Christian, there is nothing, NOTHING, in our lives that is not material for God to work with. Material that he uses to transform us, to change us from level of glory to another. Take all your failures, desires (good and bad), goals and surrender them to the Cross. You will get something much better in return.
He may not give you the gifts you think you need. He may not fill your life with the realization of dreams you’ve had, but it’s only because He has something better in mind. Can you see that?
How can we be sure? Because He gave his best, his nearest and dearest (Jesus!) to us–folks who saw no beauty in him, who rejected Him. He is so intent on us beholding the beauty of this gift, he will do whatever it takes to get our eyes to see Jesus. And as we turn and look at this gift, this divinity and humanity on the cross, the Spirit strives in our hearts. Changing our desires, filling us with longing for Him, forever re-directing our lives.
She greeted me with a wide smile and opened the door to their cozy house in rural Ontario. We sat sipping Timmy’s coffee and juggling each other’s little ones in our arms, husbands on one side and wives on another. We hardly knew one another, yet uniquely knew each other’s daily struggles.
This road we walk has few travelers, it’s always special to meet each other on the way. We’d all choose a different road, but here we are and it makes us hug when we meet. It takes one to know one, these travelers.
I held her Charlotte in my arms as she held my Calvin. Her legs were chubby and hair a soft curly brown with a little pigtail right on top. Perfect for snuggling. I could see the fierce love from her mom and dad mixed with frustration. Frustration as we stand helplessly by, wanting to make everything right with our kids but not able too. Smiles that hide a thousand tears and sleepless nights.
Charlotte coughed and they sprang into action, obvious they’d done this a thousand times before. Matching suction machines sat on the coffee table, they grabbed hers and quickly eased her breathing. This constant stress, I recognized it. They were used to it too, in an exhausted sort of way. The weird life of being an ICU nurse and quickly reverting back to conversation and coffee in between crisis of choking, going blue, and seizures. Happening so often that it almost feels normal to have your child struggle for air.
I wonder if heaven seems sweeter to all of us who anticipate it for our children. And simultaneously dreading our loss. That’s the thing. A parent’s love for a child is just that. Love. A loss is not made less because the child was ill or had special needs. There is a burden of care, but there is never a burden of their life. They are wanted, they are loved.
Those days of constant stress have faded for us since Calvin’s airway stabilized. But they are still in the thick of it. Trying to maintain family life, paying the bills, taking care of the baby in the midst of circumstances most people cannot handle emotionally or physically.
Darryl knew the tension on the father’s face. Torn between the impossible task of doing your work while worrying about your wife’s load and constantly rushing home to help rescue the little one. It puts a man in a hard spot, watching his family struggle. Calls to customers take second place and work goes unfinished while he holds his family together.
When you are in the survival mode, constantly rescuing your baby with no end in sight, gifts are like heaven sent reminders that although you may feel very alone, you are not. Reminders that God still cares for you and sees your every need. I will never forget those days opening the mailbox and finding gifts to cover daily expenses, mortgage payments, gas cards, restaurant cards. They were like life boats sent out to us while we were sinking. It was as if people really did understand, really did know that this living and providing was almost impossible while trying to sustain Calvin’s life.
Last night during devotions I read the story of Barnabas to the kids. Barnabas was sent out by the church in Jerusalem as a missionary to the church in Antioch. The church grew in faith. Later they received news that there was a famine in Jerusalem. What did they do? Sent Barnabas back with love gifts for the believers at Jerusalem. I love the picture it gives us of believer’s hearts, ready to give, eager to show evidences of Jesus’ love in their life.