Easter holds so much hope for those battling illnesses and suffering in weary bodies, and for those of us caring for them.
To be honest, I’m weary. Not of caring for him, but at the futility of the battle. The other day I pulled up with a van of groceries and hesitated before opening the front door. I’m so sick of suctioning, I thought. Tired of emptying lungs that keep filling up.
It’s draining to watch Calvin struggle bravely. It takes hours to get him ready for school, for church, anywhere. Sometimes he does great–he’ll be alert, breathing easily, and thoroughly enjoying life. This is when people outside our four walls see him and think he’s doing great. But it’s only half the story, his strength fades quickly and Darryl and I are often rummaging quickly for meds, another respiratory treatment, more suctioning.
The back to back infections of late sap him of strength. And some days I pile the blankets on his belly so I don’t have to see him struggling to breathe.
Today we’d planned to take him to church for Easter. His lungs had other plans. He’s in bed after battling seizures, fevers, and thick secretions in his lungs.
And today, in the middle of rescue meds, catheters, a thermometer, and hugs, Easter has never meant more.
I see illness and weariness but it’s only the immediate picture. There is an eternal day dawning, a day made possible because of our mighty Savior. And this reality gives us strength to put one foot in front of the other, joyfully!
Jesus, our Shepherd, the one who carries us in this battle, has risen–hallelujah!
He conquered the grave so that we would not be defeated by it.
He took the sting of death so we could experience hope and tenderness in our dying.
He fully paid for our sins so that we can have life.
He experienced the weariness of struggle so that He could be an eternal strength and surety for us.
He is risen, He is coming again. Come, Lord Jesus, come quickly. The song of victory has begun.Read More
Honestly, they are the cutest little sticks for legs you’ve ever seen.
They were laid flat on the steel bed beneath the X-ray machine. Calvin was shivering a bit with only undies to keep him warm. His eyes were wide, listening to the sounds, trying to figure out just what was happening. It always makes me grin to see him that way. So trusting, so alive, so connected.
His legs. They have no muscle, and the result is two straight little sticks. Adorable, generously-covered-with-peach-fuzz sticks.
They should be plump with muscle and carrying him from puddle to puddle pooling on our sidewalks. But they are still and thin.
This beauty lies quietly in front of me and part of me that wants to stand in a posture of defiance at heaven. His spine is curving severely and his hips and arms are sliding out of joint, even after hours of therapy, proper positioning and expensive equipment. Hasn’t he had enough? Really, he’s only five! Why does he have to reckon with the force of a fallen world while other kids jump puddles?
I’m like Eve, back in the garden–questioning God’s goodness, his intent towards us. And even while I’m reaching out in unbelief God calls me back to put my eyes on Jesus in faith. To not believe the lie that He’s pushing us lower to destroy us, but rather to give us life. His Spirit, renewing us day by day, is just as real as the body wasting away in front of me.
This is not only a story of decay and death, it is also story of refinement and glory. And so is your story, if you are in Christ, no matter the present pain.
“And we all, with unveiled face, beholding the glory of the Lord, are being transformed into the same image from one degree of glory to another.” 2 Corinthians 3:18
It means glory here, now in the questions, pain, and perplexing situations. Fixing our eyes on Christ, while our hopes for this life and even our bodies diminish, transforms us to his likeness, to be like Jesus. And instead of life wasting away, we are being built up and changed from one degree of glory to another. Really changing, living, transforming, thriving by his power in the midst of broken bodies and minds.
He is awakening us from the lull of sameness and illusions of stability, to Himself, to new visions of glory–in the X-ray room with two little sticks for legs.
It’s a parent’s worst nightmare, the PICU, Pediatric Intensive Care Unit. I found it strangely quiet and peaceful in spite of the obvious sobriety of the floor. If you glanced through the glass doors you’d find small bodies lying motionless on beds with parents standing by with wads of tissues. Some talking quietly on their cellphones, others motionless with their head in their hands. There are no reassuring smiles from the kids, just beeping machines, numbers flashing and still hands.
Amidst this surreal scene gowned figures can be spotted everywhere. Intent, watching each number, giving medications, and immediately at the bedside for any and every need. And then talking to parents. A lot of talking to parents, with their sympathetic hearts and caring, compassionate and professional conversations trying to comfort the aching questions and fears hanging in the room.
I’d heard it was a high burnout rate, working as a nurse in the PICU. Not only because your skills need to be at the top of the game, but sometimes the emotional wear took it’s toll. Fighting for a child for months and then having them succumb often made them feel defeated and helpless. Some diseases and accidents take the bravest, the sweetest, the ones hard fought for. And it’s not only the parents who mourn.
We spent months in the PICU, in and out with constant battling for Calvin’s life. Spending hundreds of hours with nurses made them feel like family. They saw us agonize over decisions, witnessed the beauty of Calvin’s life, and cared. Really cared. I can still name each one of them and they come up in conversation. They have left an indelible imprint on our lives.
Darryl and I ran into one of “our” nurses, Nikki, a few weeks ago. One year she taught me how to use a feeding tube and then a year or two later back in the PICU, how to care for a tracheotomy. And it wasn’t a removed, cold lesson. It was taught with great dignity and compassion on my kid, tenderly moving his head, giving him warming blankets and gently guiding my hands as tears filled my eyes. When I saw her it was like seeing a long lost family member. We hugged and she exploded in delight with me over Calvin’s recent pictures.
A few months ago my sister ended up in the PICU with her son. The hospital was overflowing and the PICU was being used as overflow. She called me, “Hey, didn’t you have a nurse named Dana? She’s Quinn’s nurse and she is so familiar to me.” Dana, yes! She had been with us through countless days and nights and we’d shared stories, investing in each other’s lives. She referred to her patients as “her kids”. “Ask her if she remembers Calvin,” I said, thinking she probably wouldn’t with the amount of kids she cared for. Dana remembered him without hesitation.
That’s what makes the PICU nurses unique. Heroes? I think so. Not only doing their job of caring for kids in serious crisis but caring for the family that comes along with the child. It can’t be easy. Hurting parents, grief and worry, and a sick child all in one room. And then moving on the next patient after the bed becomes empty. On a good occasion, due to a child moved to a less intensive floor but many times, emptied as another child’s body was brought to the holding place for the funeral home.
Last week Carly called me again, “Kara, I think Dana’s been in an accident. It looks like her.” She forwarded the link to me and my stomach dropped, it was Dana. She’d been on her way to the Children’s Hospital and had a terrible accident. She succumbed to her injuries last weekend. She was only 27. Dana.
Her carepage was flooded with support. One was a parent that had a little girl die in the PICU last week. Dana had carried their daughter to the holding place. Giving care, compassion, and yet another piece of herself to one more child. One more family.
Today I’m thankful for the gifts of God’s goodness that he sends in the packages of people like Dana, David, Nikki, Leslie, Bennett, Stan, Jimbo and so many others that fill the PICU with skill and compassion.
Dana’s life was filled with being a nurse, but she was so much more than a nurse. She was a loving, caring, believing heart that put on her nursing skills to give grace and compassion to hurting places and hurting people. And that lives on the hearts of parents and in the lives of the kids greeting the dawn of this day.Read More
Marlene and I carefully balanced Calvin on his belly. His body formed to the exercise ball in perfect rainbow shape. His trach pressed against his throat, making him cough forcefully. We rolled him gently back and forth, letting him enjoy the pleasure of being off his back or in a sitting position.
Sophie massaged his legs. His small, skinny legs with purplish feet at the bottom. Five years of a body not working evidences itself in poor circulation, curved toes and legs devoid of calf muscles. I can’t help but feel sad watching his body struggle to maintain itself.
His arms stuck out in front, twisted oddly. We tried to straighten them and then bend them slowly, careful to keep his shoulders from popping in and out of joint. Calvin straightened and stiffened his entire body, the only way he can create movement, and lifted his head with great effort. Soft chestnut hair framed his face, curling down his neck. Fingering his hair lifted his lips into a one-sided grin.
His gums are unnaturally thick, most likely a result from seizure medication. His ribs are widened with the lack of muscle to hold them tight and in-line. His hands are always cold and flushes race over his body every morning, one half of his face flushed and hot while the other remains white and cold.
At night lately his alarms go off frequently for very low heart-rates. I come down to find his lips white, face pale and turn him or wake him up. His heart-rate picks up and color floods his lips again. The alarms stop.
In spite of this all, he carries on bravely and without complaint. As we busy about in the kitchen making coffee, packing lunches and carrying on in our general mayhem, he calls. So happy to hear our voices, happy to be a part of it all. Darryl tickles Calvin with his beard and he responds with peels of laughter and stiffly moving legs moving like chopsticks that keep crossing.
At night, he and Evie curl up together; slowly their excited whispers and “talking” fades into deep, even breathing. She keeps him busy, bringing in bowls of snow, putting droppers of orange juice on his tongue and creating books in “braille”. At least her version of it. I wonder if it fills his dreams.
Tonight Calvin sat in my lap as we marched through chapters from “Justin Morgan Had a Horse”. Noah curled up close and wrapped Calvin’s arm around his neck. Quiet contentment.
And so our days go. Brimming to the top with happiness and simultaneously with longing and sadness.
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.Read More
Last year at this time Darryl and I had our pastor on speakerphone around the kitchen table. I was recovering from a bad bout of postpartum depression and struggling to put my feet forward. Every view of Calvin sent me reeling, it was bizarre. I kept away from him and cocooned in my room, not able to look at him for fear my heart would break.
“I’m longing for heaven so much that I can’t seem to find the point of going on here,” I confessed. I struggled to find value and joy in the here and now. PPD has a way of distorting reality, reasons for joy abounded all around me but all I could feel was crushing grief and despair.
With appropriate treatment, rest and time PPD disappeared. But I’ve continued to wrestle with the temptation to look so much for the final restoration that the I undermine the present. God values this life tremendously, and so must I.
Salvation is the beginning point of giving glory and joy to Him, but what does He want from me after that? What opportunities do I have right now to grow closer to Christ and bring Him glory? We know our body is a tent (“for in this tent we groan, longing to put on our heavenly dwelling” 2 Cor. 5:2), but are we just “doing time in the tent until we get heaven?” (Colin Smith).
Colin Smith, an gifted expositor, preached a sermon about the opportunities we have right now in the body, that we won’t have in heaven. We tend to focus on the challenges of life now and look forward to the opportunities of glory. But what about the reverse?
There is a challenge in glory. 2 Corinthians 5:10 tell us: “For we must all appear before the judgment seat of Christ, so that each one may receive what is due for what he has done in the body, whether good or evil.” This includes believers. So while we know that we will never be condemned if in Christ, our lives will still be laid out and judged. And all that is worthless will be burned up and all that has eternal value will be treasure laid up in heaven.
Not only is there a challenge in glory, but there is also opportunity here on earth that we won’t have in heaven. Here are ten things you have the opportunity to glorify God with right now, that you won’t have an opportunity to do in heaven:
Prayer: God is delighted when we come to Him. But prayer is something we will only have now in the body, you will not need to pray in the presence of Jesus.
Believe: Believing when we have not seen and do not understand is faith. In heaven, faith will be sight and you will not have the opportunity to trust things you cannot see.
Courage: The only courage needed will be the courage in this world because there are no dangers in the presence of Jesus.
Resist Sin: All battling with temptation is done now, there is no sin in presence of Jesus. It is a short battle, and an opportunity here and now to bring glory to Him.
Trust God: Trust Him now in what you do not understand; there will be no such situations in the presence of Jesus when all things will be made known.
Shine in Dark Places: Shine now as a light where God has put you in this world. There will be no dark places in the presence of Jesus in heaven.
Bearing Witness: Testifying to the glory of his name is only done here in the body, there are no lost people in heaven.
Give Comfort and Compassion: Now is the time we have the opportunity to extend ourselves for the cause of Christ, showing his love to our neighbors. There will be no hurting ones in heaven or those that need comfort.
Give Sacrificially: The only laboring in which you can extend yourself is what you do in this life. There are no sacrifices in heaven, the saints are resting from their labors. The only place you can push outside of your comfort zone and give sacrificially is here. In heaven you will have all things.
Press on, eagerly and with joy. This is a short journey, one of great value no matter how much has been lost. Bring glory to Him, the one who desires us to be with Him forever. “Lay up for yourselves treasures in heaven, where neither moth nor rust destroys and where thieves do not break in and steal” (Matt 6:20).Read More
I sat in church, knowing the sermon was true, that the words were what I needed to hear (God’s Word always is). But it was like the words couldn’t get past my brain and into my heart. We were sitting in the balcony, there was no legroom, I felt like I needed theater glasses to see the minister and we were late due to tipped over bowl of baby cereal and a clothing disaster.
I get so used to God’s constant grace, His gift of making me alive to Him and His Word that when my original coldness seeps into my life it is disconcerting. Our natural posture to the Word is one of deflection. This realization humbled me–He takes people like me (in deflect mode) and transforms me into something growing and living–ready to receive grace and truth.
Last night I prayed with one of our kids who’s learning what self-control is (and causing me to learn patience). We prayed for God to transform our hearts to hearts of flesh rather than hearts of stone. “I get it!” she said. “After church I had a brownie and ice cream. The brownie was hard and the ice cream was soft. My heart needs to be like the ice cream.”
Not exactly a pulpit analogy but it made perfect sense in her world.
Last night we heard a sermon on the call to be holy (1 Peter 1). Given my out-of-sort demeanor (okay, grumpiness) from the day I wasn’t feeling any victory or desire in this area. (It was as if my husband wasn’t getting my needs, i.e. that he should do everything and let me cocoon on the couch with my book, reasonable, right? Sometimes the reality of the constant needs of five kids makes me want to put my head under my pillow, but I digress.) As the Word was preached these words jumped out to me (bolded).
Therefore, preparing your minds for action, and being sober-minded, set your hope fully on the grace that will be brought to you at the revelation of Jesus Christ. As obedient children, do not be conformed to the passions of your former ignorance, but as he who called you is holy, you also be holy in all your conduct, since it is written,“You shall be holy, for I am holy.” And if you call on him as Father who judges impartially according to each one’s deeds, conduct yourselves with fear throughout the time of your exile, knowing that you were ransomed from the futile ways inherited from your forefathers, not with perishable things such as silver or gold, but with the precious blood of Christ, like that of a lamb without blemish or spot. He was foreknown before the foundation of the world but was made manifest in the last times for the sake of you who through him are believers in God, who raised him from the dead and gave him glory, so that your faith and hope are in God.
The “passions of former ignorance” don’t have to spectacular public displays but usually are insidious sins such as discontent, envy, lack of joy, a complaining spirit. Am I being conformed by former passions? Or am I alive to the new passions and desires he has planted in me?
After all, I am ransomed from futile ways that have been passed down to me in our fallen humanity. But am I living as if I’ve been ransomed?
Praise God that I am not ransomed because I’ve proven myself worthy or good enough (I can’t stand on that leg too long) but rather only because of the worthiness of the blood of Christ, the spotless lamb. And because of this my hope is in God (not me) and I can go to Him this week and ask him to give me a heart “soft like ice-cream” that is ready to receive His word and allow His power to transform my days from general complaint to specific praise.Read More