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
Occasionally I write for the kid’s section of our church magazine thought I’d share them here to use with your kids, if you’d like. This one is appropriate for the time of waiting between Easter and Ascension.
Have you ever seen a friend walking sadly on the playground? How can you tell they’re sad? Maybe they have their head down, shoulders drooped, all the while kicking wood-chips while they walk.
Once there were two friends walking sadly together. Cleopas and his friend weren’t on the playground; they were walking along a dusty road going from the city of Jerusalem to Emmaus, a seven mile trip! They had a long walk home and as you know, walking goes quickly when you talk with a friend, so they were pouring out their hearts to each other.
They had just had the worst week of their lives, and it wasn’t because of the ordinary reasons that sometimes make us say, “This is the worst day ever!” They didn’t have lost homework or even a lost donkey. They weren’t arguing with their friends or fussing over hurt feelings. It was far worse.
The week before, they had gone to Jerusalem to celebrate the Passover. It was normally a joyful celebration—a time to remember God’s faithfulness in delivering them from Egypt and a time of hope, remembering that God had promised to send another deliverer.
But this Passover had been all mixed up and seemed to have gone terribly wrong. Their dear friend, Jesus, a great prophet had been killed, on the very day of the Passover. And this was the one they thought was going to deliver them!
Their hearts hurt just thinking about Jesus, He had loved them and been with them day after day. They had seen the power of God in Him when sick people came to the door and when sinners found life and joy in His words. He had been their friend, their hope for a better future, but now all they felt was sadness and confusion. Jesus was dead and there was no delivery in sight.
Everything they thought was true seemed turned upside down, had they been wrong all along? Jesus joined them on their walk, right in the middle of all the mixed up thoughts and feelings and listened. Of course He knew all about it, but He loves for us to pour out our hearts to Him. They told the whole story to this stranger, not even recognizing it was Jesus! And Jesus gently began pointing to the truth that He was right here and all was going according to plan.
Now, if you or I have something very remarkable happen we might tell our friends the sensational details, show pictures or even reenact what happened. But Jesus, who had just suffered the greatest sorrow and achieved the greatest victory in the history of the whole wide world, began in the most ordinary way–by opening up the scriptures.
He pointed out the plan that God had been perfectly carrying out through the stories of the Israelites and the songs of the prophets. He showed them how all these stories pointed to the Lamb, the Redeemer, HIM! And as he spoke the words of scripture, their hearts started to thaw from the fear and confusion and they began to burn, throb and nearly burst with joy as recognition lit their entire being, it was Jesus. And He HAD delivered them from something much worse than the Romans—they were delivered from the clutches of sin which had the power to destroy them more than any Roman.
These two disciples had started their long walk with heavy hearts and sandals dragging, but by the end of the long trip as they sat down to break bread with Jesus, their hearts were light and their feet eager to get up and spread the news—Jesus was alive and God’s plan of deliverance was being carried out perfectly.
I don’t have a time machine to send you back to the Emmaus road, but I can tell you where to find Jesus–open up the Bible, He really is on every page! This week, in your devotions, why don’t you write down your findings of seeing Jesus in the stories and prophets of the Old Testament; ask your parents for help if you’re stuck.
Seeing Jesus made the disciple’s hearts burn with passion, joy and devotion. If your heart is dead and cold and the Bible seems boring, go to your knees. Ask the Holy Spirit to open your eyes to see Jesus as you read the Word. He is the only one who can wake us up from the sleep of sin and make us alive in Christ. Seeing Him will make our feet eager to worship Him and to share the news of Jesus with others.