(Dr. Joel Beeke preached at HRC on Psalm 139; I credit his sermon for many of these thoughts.)
Some people like to think we have happened here by chance. Which means our entire existence is by chance and our abilities and disabilities are by chance.
But the Bible presents a completely radical approach–that we are personally created as unique individuals by a personal divine creator, God. If it’s true (and it is!) then each one of us has tremendous meaning; we’re not floating aimlessly but have purpose and reason to our existence.
Poetry from the books of Psalms (chapter 139)
For you formed my inward parts;
you knitted me together in my mother’s womb.
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.
My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.
Psalm 139 tells that God actively and personally crafted each one of us and wrote down every one of our days before we even began. Your life is not an accident. Your child’s life is not an accident.
In the early days of Calvin’s life I struggled to understand how God could have made Calvin and yet allowed him to struggle so significantly. If God really loved Calvin, wouldn’t he have made him with zero disabilities? Wouldn’t he heal his lungs instead of Calvin struggling to breathe through countless respiratory infections? At the base of it: did God make my child disabled or is it just the result of living in a fallen world? Who messed up here? That was my bitter question.
But over time I’ve learned that when I want to understand God’s love, I can’t only look at the small picture of my present circumstances but I need to lift my eyes on the big picture. Instead, I look at what God says about himself and what he’s done. He gave his son, Jesus, so that my son, Calvin, could have eternal life.
This short life may be full of struggle for Calvin and it’s not what I would choose for him. But I do know that God’s heart is near to the broken-hearted, that he IS good and that he’s sent help better than a cure just for this life, an eternal cure for sin and death. He’s sent help in the form of what was nearest and dearest to him, his own son.
And in the meantime, God cares very much for my son and his needs. In fact, he invites me to come to him and bring my troubles to him. He promises to be my refuge, my strength, and a very present help for Calvin and I.
Psalm 139 tells me that my son, with all his unique needs and diagnosis (spastic quadriplegic cerebral palsy, microcephaly) is a personal creation, a sacred work of art of God himself. He matters to God. Be encouraged, your child is a sacred work of art crafted by the Creator of the universe. And he knows every single detail of your child, they are his masterpiece.
Imagine if you had a famous piece of art in your home; you’d protect it, show it off, and value it, right? God has given you something of far more value, a masterpiece beyond compare, your child. And he’s given it to you to enjoy, honor and protect.
And it honors him when you care for one of his creations, one that is especially tender, vulnerable and defenseless. He’s entrusted this child to you and it is the noblest calling to be the one to care for this masterpiece. As you tenderly change another diaper, stretch another tight muscle, give medications, dry tears, endure seizures, and spend another sleepless night…you are guarding and protecting a masterpiece of God. What an honor
It’s a lot easier to follow a lot of rules and be good and nice than it is to actually follow Jesus and live what He says. Because one involves tweaking behavior and the other involves a radical heart change.
A heart change that seeks to understand and enter in, rather than only associating with people like us, because it’s easier and feels nice. A heart change that is more interested in seeing the kingdom of God come in people’s lives than building my own comfortable kingdom of codes of conducts and preferred traditions.
When I read the Christmas story this heart change is actually a dividing line between the characters.
On one side, there were acceptable people who were too religious and proper for the Kingdom of Heaven. They had no time for a poor pregnant girl and a child born on the wrong side of town. And then there were others who had open hearts, like Simeon and Anna, who were listening to God and living out of what God had told them. They didn’t miss it.
On one side, there were religious powerhouses who wanted a king and were looking for a savior of their own making. One who knew and valued their ideas and all their law-keeping, one who validated the importance of their customs.
And on the other, there were wise men outside the church, who were looking and searching and followed God’s leading instead of staying in the molds of their own wisdom. They had the opportunity to discover and worship the Kingdom of Heaven come to earth. They didn’t miss it.
One side, in all the vehemence of their religiosity, missed the manger. They missed the manger, then the ministry, the cross, and the resurrection because listening to their own ideas was more important to them than what Jesus was actually saying. Their story tells us that religion without the cross is as good as unbelief. And we can miss everything while looking right and respected our entire lives.
The others – motley shepherds, foreign wise men, trusting teenagers, aged listening saints – they didn’t miss it. They laid down their perceptions, their ideas and listened to what God was actually saying.
I think we need to honestly ask ourselves: are we missing out of the Kingdom of Heaven by passing off Jesus’ words and holding our own ideas closer, when we take the paved acceptable way instead of the way of the cross?
We all align ourselves with the people who didn’t miss it, but if we transfer this cast of characters to today, it should make us pause when we see where we fall – rejoicing or rejecting.
“And When they (the wise men) saw the star, they rejoiced with exceeding joy. And when they were come into the house, they saw the young child with Mary his mother, and fell down, and worshipped him: and when they had opened their treasures, they presented unto him gifts; gold, and frankincense and myrrh.” Matthew 2
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.
I used to think that parenting meant trying really really hard to create the ideal life for your child. The right food, the right house, the right books, the right vacation and the right parenting.
These things matter. But when a bomb explodes in your life and all your plans are wrecked and all of your “right” options are just kicked outta town, you learn a few things.
You learn that vacations are nice but what you do on rainy afternoons and another evening home is what makes warm familiar memories. The simple wrestling matches on the living room floor, telling funny stories and game marathons where one kid almost certainly ends up crying.
You learn that being a gourmet organic cook would be ideal, but kids will love the comfort of your simple wholesome cooking just as well.
You learn that it’s more about being consistent in immersing yourself and your kids in God’s Words rather than having the right words and right parenting techniques.
You learn that when your life is wrecked, it means a new beginning. An opportunity to model to your kids “Living the Wrecked Life” so they can see God’s grace living and active in your less-than-perfect life, instead of your perfection exalted and standardized. It’s humbling, but it bears good fruit.
I’ve learned that it can seem real convincing that if you just do this or buy that or go there or be more like them, your family will be better off. Truth is, you never can get the circumstances quite right for your kids and it’s the wrong battle to fight.
I think I’ve wasted a lot of time fighting the wrong battles and praying for the wrong things. God knows what you have and He’s not expecting you to better your own life. He’s asking you to lose your life and to find it in Him.
That’ll impact your kids a whole lot more than ship-lap in the kitchen and a cute farmhouse laundry sink. Although I do love those. But there’s bigger better things that have nothing to do with what you can provide or create.
It’s about living a life and leading your family in leaning into what God has provided, Jesus, and living a life of becoming a new creation of grace. His creation.
Do you feel that pressure lifting?
Maybe you’re living in a place far from family. Maybe your marriage is struggling. Maybe you’re facing staggering financial stress. Maybe you’re losing sleep because your life seems like a mess in every direction you look and you’ve never felt more “less than” in your life. And when you think about raising kids in the mess, you wonder how on earth they’ll survive it with you at the wheel.
Here’s the thing: the only circumstances you need to be successful, are ones that drive you to Jesus. The only parenting technique you need is dependency on Jesus. The only house you need is the foundation of Jesus. The only decorations you need are wisdom and grace. The only life you need is one in Him. The rest is just stuff that is passing like the wind. Life in Jesus is lasting and true and strong and good and saving – forever. It is the gold, the only gold in the stuff of life.
Bring your mess, bring your less-than-ideal, and come. Not scrubbed up and cleaned up and looking good. But empty-handed asking God to grow His work, His grace in the middle of it all. Don’t miss it.
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.
Stress can do a number on us. Over time I’ve struggled with insomnia, not able to fight anything off and chronically exhausted. Together with some other good self-care habits, essential oils have made a markable difference in my own wellness as well as my family. Young Living is a great fit for us! We use oils for sleep support, immune support, energy and so much more.
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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. 😉
I haven’t written much. Sometimes it seems like the words have dried up and there’s nothing more to say. But more truthfully, we are adjusting to the years of intensity becoming a place we must live, not a just a short season.
Darryl and I sat on the couch last night, after all the kids were finally tucked in and sipped some hot peppermint tea together. Our home is full and blessed, but at the end of many days we carry the weight of the brokenness. It’s odd, this life is such a two-sided coin. On the one hand, these years have been tremendous years of learning, growing, depending on God. And on the other, such a stripping that a deep melancholy underscoring everything. We’re changed, and sometimes I don’t like it.
The first four years of Calvin’s life were nothing but bare survival, literally trying to keep him alive from one day to the next and making major decisions at every turn. The last three have been more predictable; we’ve become used to being nurses around the clock and know how to navigate his fragility well. Now, the question of Francis Shaeffer’s book often burns in our minds: How shall we then live?
How do we live when life never “gets back” to normal? What do we do in the settling years – the years when everybody else has moved on but we are still constantly adjusting to living with loss?
“The older I get,” Darryl said, “the more I see people settling in two ways. Either they become angry and bitter, resigned in their faith or they serve with love out of their brokenness.”
How many of us haven’t fallen into the first category? We grow up and face unexpected losses and life doesn’t always turn out the way we dreamed or expected. We hurt but then time happens and with it we settle into patterns of living with broken dreams.
We either become more receptive or more hard-hearted.
We grow in love or we grow in bitterness.
We grow in devotion or in apathy.
The settling years.
Richard Sibbes said: “God takes it unkindly if we weep too much for the loss of a wife, or child, or friend, or for any cross in this life; for it is a sign that we do not fetch our comfort from him. Nay, though our weeping be for sin, we must keep moderation, with one eye looking on our sins, and the other on God’s mercy in Christ. If, therefore, the best grief should be moderated, how much more the other!”
God’s comfort is enough for any sorrow, any cross you and I are called to. It is enough to keep us from hard-heartedness, bitterness and apathy. So then why do I find so much of the latter in these settling years?
The temptation for followers of Jesus, living with broken dreams and loss, is to not lean in. Instead of depending on Jesus all the more in pain, we withdraw. Instead of moving forward in faith and hope, we retreat in doubt and despair. We internalize hurt instead of dwelling the comfort of Christ and using that to serve others no matter how broken we are.
It’s gotten a lot of us, and exposes what we may have really been living for all along.
These years are uncomfortable, settling in with altered dreams. But there’s a way to resist the easy street of withdrawing into ourselves and swimming in bitterness and anger. We can ask God to fill us with His Spirit so that we can rejoice in suffering and be filled with peace in believing. Perhaps the settling years are really an invitation to develop rhythms of joy and grace in our lives? A call to live as an ordinary people with an extraordinary hope?
Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us. Romans 5:3-5
One of my favorite things on Instagram is Mari Andrew. She takes abstract concepts and creates simple pictures that almost always perfectly characterizes feelings and realities that can be difficult to describe.
She recently has been set back by illness herself and I’m finding that many of her drawings make me say, “Yes, exactly!” I love the drawing below about empathy. Check it out:
It reminds me about the value of being with someone in hard times. Our reaction is to run away, avoid or feel like we’ve failed as a friend when we can’t solve things.
But this picture captures some of the main ways we can be a true friend when life becomes painful or hard.
We can reassure our friend that even though the worst could happen, we will be with them in it. And more importantly God will be with them. The only thing worse than devastating events in our lives, is being alone and forgotten in them. Maybe that means sitting in the hospital room with them, inviting them over for dinner or just making yourself available in any way.
We can take on practical ways to help. It’ll look different for every family and person, but it will always include showing love and kindness through everyday service. When Jesus’ disciples were weary or sad, what did he do? He baked fish for them. He fed them.
We can pray for them. Today an older woman in our church reminded us that our first priority in serving others should be prayer. It’s not an afterthought but the first thing we go to! Pray that their faith would not fail. Pray the promises of God for them. Pray for them to experience Jesus’ compassion and tender care when life is raw. Pray for opportunity to show love just as Jesus has loved us.
We can remind them who God is and what He’s promised. Sometimes pain makes it hard to see straight. The promises of God can seem far removed or a “nice idea” when you are living a hard reality. But that’s exactly when the promises come alive and valuable to us. This is when we move to walking by faith and exercising that. But we need the promises and the reminder of who God is RIGHT in front of us so that we can keep putting one foot in front of the other.
I want to grow in this area of being a good friend who empathizes. After all, isn’t this just another way of loving our neighbor? So many times we get caught up in worry about saying the wrong thing or assuming other’s have it all figured out, so we stay away. Or, even worse, we are so consumed with what’s going on in our lives that we stop looking out for others.
Jesus is the perfect example of one who empathizes. He did much more than empathize, but he illustrates drawing near in weakness. As we show empathy to people around us, we allow others to experience the love of God and in turn we are changed more into the image of Christ.
“Since then we have a great high priest who has passed through the heavens, Jesus, the Son of God, let us hold fast our confession. For we do not have a high priest who is unable to sympathize with our weaknesses, but one who in every respect has been tempted as we are, yet without sin. Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need.” Hebrews 4:14-16