There is no disaster, no tragedy, no viral pandemic that escapes your notice or is a surprise to your kind and sovereign gaze.
You know how our hearts are fearful God; of the unknown. Of loss. Of lack. Of death.
You know the way we groan in this world that looks so like a place we long to call home; yet somehow isn’t.
None of this, is as it should be.
Multiply our peace by your presence Lord God.
Extend to us the promise of your with-ness, whatever comes.
Help us as we seek to love our neighbor as ourselves—may we steward well the people and places around us, even when we aren’t quite sure how.
Guide us by the wisdom of your all-knowing Spirit.
Jesus this current chaos reminds us once again what has always been true— our days here are numbered.
Our earthly lives, finite and mortal; susceptible since the fall of man, to death and decay, whether by age, accident, or disease.
Yet we know that in all things and through all things you can and will be glorified.
You know every day of our lives, before there is even one.
Calm our spirits O God. Cast out our fear by your perfect love. May we taste your goodness here and now.
We shall not want.
Amen
Audrey says it best. When I first heard this song a couple years ago, it absolutely floored me—if you are unsettled in your spirit today, I hope it does the same for you. And please feel free to share if any of this ministered to you.
In case you missed it on my social channels, I was published earlier this week in Fathom Magazine’s aptly themed issue “Fear” with a collection of short poems and essays called, “The Breath Between.” It follows the overlap of my Grandmother and my first child’s lives, and speaks to the angst I have felt watching those I love live and die in a broken world.
In times like these, perhaps it will spark a little hope in you, that there is more to our present reality than what our eyes can see. Just click here to give it a read.
This is a repost of something I wrote last Christmas. Last December was the hardest month yet with our daughter and her health; but the gems of truth I learned during that time have carried me through the various sorrows I am carrying into Christmas this year too. I hope this blesses you to read again as I know it blessed me.
There is so much to anticipate about Christmas. The time with family and friends. The presents under the tree. The vacation days. The special feasts that invite us to remember the incarnation with songs sung by candlelight.
But with every anticipated event comes a certain amount of anxiety; for all of us. To get the shopping done on time. To prepare the food for the guests. To teach our children the meaning behind the celebration, and so much more. The anxieties include the small griefs associated with the plans foiled, the cookies we never baked, the gingerbread houses that were accidentally left in the garage, the advent calendar we didn’t remember to start until halfway through the month.
But sometimes these anxieties run deeper. Sometimes they are the deep fears that are the product of deep griefs. Sometimes the current of suffering and grief drive us through the holiday season at a pace that feels unnatural. It can be hard to sing a Christmas song when it seems like everything around us is wrong.
Fear and anxiety should not be invited to take a seat at our tables during this joyful time of year, but yet sometimes it seems like they’ve pulled out the seat of honor and made themselves quite at home, always without our consent, and often without our immediate knowledge.
If you are worried about this Christmas, that something might ruin it. That the holiday stress will drag you down. That the traffic will make you angry. That the checkout lines at the shopping mall will frustrate you. Or that your family will be angry with you because you have to work…Fear not.
If you are worried that the grief over a loved one missing around the table will swallow you whole. If you are fearful that the constant suffering that plagues your everyday life might spoil Christmas. If you are alone this year and don’t know who you’ll celebrate with. If your spouse is in prison. If a loved one has cancer. If the budget is too tight for gifts for your kids this year. Fear not.
I’m going to let you in on a little secret; nothing can ruin Christ’s coming. Not then. Not now. Not ever.
Jesus’ birth occurs in the context of a census taken by the Roman empire. The Jews were being taxed by an oppressive regime, who wanted to count and see just how many of them there were as if counting assets, not people. He was born in a humble town, after a long on-foot road trip. A town so crowded that no one had room even for a very pregnant woman on the verge of giving birth. He was born in a stable, surrounded by the dirt and the hay and the feces of animals. Delivered by his teenage mother in the usual turmoil of the usual way. Caught by a man whom he would grow to call Father, though he himself had biologically nothing to do with him. Unless of course you considered that is was Jesus’ very breath of life that made Joseph’s own chest rise and fall.
If I wanted to tell a story of a birth plan spoiled, I don’t have to look any farther than the birth of my own Savior. I wonder what Mary thought, in the midst of intensity of labor. I wonder if she held fast to the faith that all this was as God had planned it, or if she doubted, even for a moment, the way the Lord chose for this Savior to come. Did she wonder if his birth was being profaned by the dung and the dust in that moment? Or did she know with certainty that everything was exactly as it should be.
In the fullness of time, he came. Nothing could stop him. Nothing could ruin it. Every strange, painful, and difficult circumstance along Mary and Joseph’s way, only confirmed the prophecies that had already been spoken of Messiah. All of it was by God’s grace, for his glory.
The maiden girl, the stall, the manger, was exactly the way he had to come. It was apart of who he was as “Immanuel”, God with us.
He was born to breathe that filthy air. Born to feel the pain of a scraped knee. Born to feel the sting of a harshly spoken word. Born to feel the wrongness of people’s anger towards him. Born to submit to the authority of human parents, though He alone was the ultimate authority in all the Universe. All of this before he even would begin his more official “ministry” among us. And not one iota of those experiences could ruin his coming, because of course; that was why he came. He was born to feel in the flesh, the effects of the curse as far as it was found, even as he came to ultimately break the curse once and for all, forever.
Nothing could ruin the miracle of his coming. No corrupt governments, no inns full to bursting, no filthy stalls.
He came for the social outcasts, as well as those who were held in high esteem. The shepherds, who abandoned their flocks for a chance to touch his sleeping face, were just as welcome as the three kings bringing gifts of gold, frankincense, and myrrh.
We were going to go cut our own tree this year. We’d been planning it for weeks. We thought we’d take some friends with us. We’d warm up with cocoa after. It would be the snowy family adventure we’d been longing for since the hot hot months of summer.
Then Friday night came with another auto-immune flare up in our little girl. We were up all night holding her, consoling her. Praying for her. Singing over her. Holding back her hair and wiping the tears from her cheeks. And when the new mercy light of Saturday morning finally came, I knew there was no way we were going to go cut our own tree.
So we traded off taking naps and watching the kids. We ate leftovers. We cancelled our plans. And when four o’clock came around, I made my husband a thermos of coffee and sent he and our middle son out in the snow to find the perfect tree from a local tree lot.
Ellie woke up to find them gone, and though she knew we would have been cutting our own tree if not for her flare up of illness, she took it as a kindness that the boys were out finding the perfect one just for us. Just to cheer us up.
In the fullness of time; even if our timing seems off for everything, God is always on time. Nothing is by accident. All is for our good and his glory. That baby in the manger didn’t come because he wanted to be apart of some idyllic winter solstice celebration—he came because we are broken, and he wants to heal us.
If you feel broken down and beat up by life right now: Christmas is for you. If you feel weighed down by the burdens of past hurts laid upon you by others: Christmas is for you. If you are afraid of the emotional, or physical pain that you are experiencing and very well may continue to experience all throughout the Christmas season, Christmas is for you.
If you are tired of muddling through life in your own strength. If you have nothing left when the dawn finds you, then take heart! Christmas is for YOU.
The holiness of this Holy Night of the Incarnation mirrors the holiness for which God has set us apart: the holiness is not clean and tidy like the stained glass images of the birth of Christ, but in the midst of the mess and the mud and the blood, it is set apart. And if you believe in Christ Jesus, then you are set apart, by God’s grace and for his glory. And nothing can take that away from you.
Glory. That’s what makes the more obviously sacred and the seemingly profane aspects of our lives the same in the economy of God. Because God redeems profane people with profane pasts into the sacred work of his coming Kingdom. And the redemptive power of Jesus more than defeats the pervasive power of sin and shame.
Nothing can ruin the coming of Christ. Not then, not now, not ever.
Not the oppression of governments. Not abuse. Not job loss or relationship loss. Not homelessness. Not the diagnosis. Not school shootings. Not the death of a loved one. Neither height nor depth, neither angels nor demons, nor things present, nor things to come, nor anything else can separate us from the love of God, made incarnate, in Christ Jesus our Lord. (Paraphrase from Romans 8:38)
Fear not. No matter what trials your Christmas holds, the best gift of Christmas is always and already yours to hold; the very presence of God with you in the midst of whatever you are going through.
You are not alone. If there’s anything I can be praying for you for this Christmas, please leave a comment below, or click reply to one of my emails if you are a subscriber. I’d love to hear from you; and I’d love to pray for you.
Gracie
{Photos shown in post, in order they appear c/o Francois Pistorius, Dan Kiefer, Davidsonluna on Unsplash}
This post is dedicated to my three youngest siblings, and all the survivors of the Arapahoe High School shooting on December 13, 2013. 6 years ago I didn’t know what to say. Now, I do.
If you’ve been around the blog for a little while then this piece may look familiar to you. It’s been two years now since Piper’s diagnosis, and just about two years since I first wrote this piece and got my own “Courage Dear Heart” tattoo to remind me to be brave, right there where I can see it on my skin. I hope the revised version of this story meets you where you are today.
-Gracie
I was being strangled. Pulling out of the parking garage, I reluctantly left the hospital and turned my car towards home. It was only then that I noticed the sky. Are you kidding me?How could the sun shine on today of all days? My heart was hammering like a racehorse in my chest, the anger welling up like asphalt in my throat. Yet, I knew even in that moment that this reaction was far from dramatic or over the top; in fact, it felt like the only way to react. After all, I was pulling away from a room of the Children’s hospital, where only a few hours ago my best friend’s 18 month old daughter was diagnosed with cancer.
There’s been some mistake. I thought to myself. They mixed up the results. They brought back the wrong chart. They’ll realize it soon enough, that there’s been some mistake.
But I knew it wasn’t true, as much as I longed for it to be.
Piper had cancer. A deadly disease. Without terrible and painful interventions, she would die. Even with them, there was no guarantee.
WHY, GOD WHY??? Over and over I asked him, my heart leaden with despair. But there was no answer.
When I arrived home I poured myself into things I could control. I organized people to meet the practical needs of my friends who would now be spending the next week in the hospital with their youngest child, while their older two stayed overnight with grandparents. I made chicken enchiladas. I bought food for their fridge. I helped another friend clean in preparation for their return. But the asphalt in my throat turned to cotton in my brain, and when I got all the groceries home from Costco, it took me a half hour of staring at the the pile on the kitchen table to figure out how to put it all away.
I kept putting on my strong face for my children. Or at least I tried. But at the sink you’d find me weeping into the dishes when I thought no one was looking. I was giving God the silent treatment. And somewhere in the back of my heart, the old me was playing stone mason, and desperately building a fortress around my heart. All of me felt like a harp string, tuned too tight, till the notes were sharp and sour. The slightest touch could snap me in half.
The tender me was prisoner in a back room somewhere, but I could hear her trying to scream through the walls of the ever growing fortress:
“God is still good. He makes beauty from ashes. Turns despair into laughter. You can trust him!”
Mostly I ignored her. I slept fitfully, and dreaded waking up each morning and realizing that this wasn’t just some horrifying dream. Then one evening, a few nights after Piper’s diagnosis, my husband began to draw me out.
“You know what’s true” he said. “You need to talk to God.”
“I don’t want to.”
“But you need to.”
“I don’t even know what to say.”
“Just talk to him,” he said.
I don’t remember the words that came out of me, face down on the pillow. I’m sure there were mumblings and groanings and unintelligible words. I’m pretty sure I mostly talked about how mad I was at him. But towards the end I came to this:
“God I know that I’m a toddler, throwing a giant tantrum, because I don’t know what you’re doing. But you’re doing something…even though I don’t understand it!”
Surrender made way for peace to come. Not in overwhelming waves, but in small chunks that began to knock down pieces of what the old me had been building in the back of my mind. Little pebbles of peace chipping away at that fortress, and a still small voice that kept chipping and tapping away at me; You don’t need this… You don’t need this… You don’t need this…
As the vines of hope began to grow again.
It’s been a little over a month of Fridays since Piper’s diagnosis. A week after the original results, we found that instead of just ALL, a childhood cancer that is relatively easy to treat, she has a rare genetic abnormality in her leukemia cells which made it significantly more aggressive and difficult to treat, and made it even more likely that if cured, she could have a relapse.
The first month was horrible. The medications obviously poison. The once spunky little girl turned into a zombie by steroids. Almost all her hair fell out in a matter of two weeks.
Then last week, they had another bone marrow aspiration that would tell them whether or not the treatment was working; if she would be in remission or if she would need to go on the bone marrow transplant list. When the results showed that she was in remission, cancer free for the moment at the very least, you would think I would have been thrilled.
But you know what? It’s hard to hear the bugle of good news behind a fortress of stone.
That’s right. I’m still in there. Desperately trying to escape. The voice of the tender me, the soft me, the me that’s sensitive to what the Lord of hosts is doing; that me was getting louder and easier to hear through the holes that the hope vines were tearing. Through the holes that the peace was beginning to peck away.
But I realized on receiving this good news how afraid I am to hope. How desperately afraid I am to trust God. Because I feel like hope is a trap and a lie. And I was expecting more bad news. I had decided to expect it, as a way to try and protect myself from the painful surprises that life seems to keep throwing my direction like so many fast balls over the past six months.
I was trying to control it. And once again, this surprise, though good, had undermined my shallow attempt to pretend to be in charge of life. To pretend to be able to predict things, and by-proxy, to control them. The old me trying to take over; shouting at the tender me;
“Get out of the way! YOU are going to get us KILLED! Your hope is foolish and the love you claim to believe in is a lie.” The reality is I cannot actually control or predict the future. I am not in charge. I am not the boss.
There’s a toddler in my house; she’s three years old and three feet tall and she’s angry because I’ve given her a bowl and not a plate for her to eat her lunch. She’s raging mad. She’s screaming. Throwing herself down. Insane with the desire to control, and devastated at the perceived loss. She looks exactly like me.
Tender me in the tower is peeking out through the cracks; shouting till she’s hoarse,
“He is good! He is good! Hope is not a lie! It’s freedom! All is grace! Everyday is gift! Every day is joy! Rejoice! Rejoice!”
I want to let her out now, but I’m afraid of the rawness; the gaping wound of a hole in a tower wall that I’ve built to keep me safe. The vines would wreck and break every last part of that self-protection until not one stone is left on another, and then I would be well and truly naked. Out in the open. Vulnerable.
Everyone could see the scars on my heart; the trust I’m afraid to hold on to; the faith that’s so thin, it seems like a paper cloak at times when I know it could be thick as velvet.
But the truth will set us free.
And the truth is that God loves my friends, and their daughter, more than I do. He’s the only one able to work for their good and his glory in all things. He is the only one who always does exactly what he says he will do. He is the only one who has the power to make all things as he sees fit.
He calls the stars out one by one…and because of the word of his power, not one of them is missing. (Isaiah 40:26) Then there’s the verse I first tattooed on my skin:
“Are not two sparrows sold for a penny? Yet not one of these will fall apart from the will of your father. And even the very hairs of you head are all numbered. So do not be afraid, you are worth more than many sparrows.” Matthew 10:29-31
He knows every hair that has fallen from that sweet little girl’s head. He knew all the days of her life before there was yet one of them. And he knows mine.
He knows the days that I’ll build towers of fear because I’m choosing not to trust him—even though he’s never given me a reason not to. He knows the days I’ll come running back—a prodigal into her Daddy’s arms. Safe and held and deeply known. He loves me. Even me, in my faithless, wandering, orphan heart. He loves me. He loves me. He loves me.
And around each bend, and each corner I can hear his voice whisper; louder now than my fears or my demands to understand; “Courage….courage, dear heart.”(C.S. Lewis’ Aslan)
Not too long after I originally wrote this post, I got my most recent tattoo. A picture of Aslan the lion from Narnia, with the above quote. It has served me often these past two years, which have continued to be full of various trials, to remember that God has, and will continue to bring me through whatever comes. He will carry me.
Kelsey Brown is my tattoo artist and she is located in Louisville, CO. You can find her on IG @kelseyknown.
Sometimes the pain of it all feels like a heavy weight. Like cotton in your brain. Like you can’t see or hear. Or breathe.
Sorrows weigh us down; they make us limp. When I was nine, I twisted my ankle after doing a roundoff of a balance beam in gymnastics class. I had to wrap it, ice it, keep it elevated. Rest.
But oftentimes it feels harder to give ourselves the emotional grace, when sorrows and hardship leave us wounded, like we have a twisted ankle, or worse. Some days my heart feels so bruised I wonder if it’s actually internal bleeding.
So today, here is your permission to not do it all. You don’t have to be productive. The to-do list can fall by the way side. The dishes can stack up in the sink. The laundry can fluff for the fourth day in a row and you can have sandwiches for lunch and dinner both.
It’s okay. It’s really okay.
Today the sun shines brilliant in the sky, but the hearts of many I love are grieving deeply. There is no bandaid to fix any of it. There seems to be only the endless ocean of pain. How do we handle it when our prayers aren’t answered the way we hope they will be? When the 11th hour rescue doesn’t come…how do you hold on to hope?
Maybe this is where we’ve been led of course all this time. Maybe it was wrong to think of hope as this pitiful small thing; this waning attempt at positivity. The truth is that hope is a battle; and today, yes today, you must fight.
Fight hard. Because if you are in Christ, then this too shall pass. And it is well with your soul. And even death cannot separate forever. We have more to live for and more to hope for than this earthly place; these lives we live in the shadowlands. We have eternity stretching out before us; and as one of my wonderful pastors said while we studied through the book of Job two years ago; “heaven is not a consolation prize.”
Heaven is not a consolation prize. I repeated it to myself just this morning. It’s not a dumb trinket you get at the bottom of a happy meal; heaven is the all. It is everything we are longing for.
“On this mountain the LORD of hosts will make for all peoples a feast of rich food, a feast of well-aged wine, of rich food full of marrow, of aged wine well refined. And he will swallow up on this mountain the covering that is cast over all peoples, the veil that is spread over all nations. He will swallow up death forever; and the Lord GOD will wipe away tears from all faces, and the reproach of his people he will take away from all the earth, for the LORD has spoken. It will be said on that day, ‘Behold, this is our GOD; we have waited for him, that he might save us. This is the LORD; we have waited for him; let us be glad and rejoice in his salvation.'”
(Isaiah 25:6-9)
Someday—someday soon—we will be dancing and singing and eating with our Savior King who himself went through unimaginable suffering on our behalf.
Thank you Jesus, this is not how our stories end. This is anything but the end. Dearest Reader, if you find yourself today in a place of deep grief or sorrow, I pray that these words comfort you. And that they remind you that it’s okay to know in your heart what God has done, what He is doing, and then just rest. It’s okay to just be. On days that begin with terrible grief, it’s more thank okay to just sit and be still, and let God hold you.
He is making all things new; even when it looks like everything around you is falling to pieces. I know it. I’ve seen it. I hope today, you can dare with me, to believe that it’s true.
That’s why, after too many months of hype, God knew that today was finally the day for Scattered: a seven day journey toward planting seeds of hope in the soil of suffering to be released into the world. If you need someone to kneel in the dirt of your present circumstances with you, I’d be honored to be that person. Just click here to sign up and get you’ll get the link to download my free ebook delivered directly to your inbox. It’s in a PDF format so you can either read it on your phone, your computer or print it off at home.
Today, on a day that felt abysmally dreary, I left the dishes and the laundry and the floor unswept; and I went out and planted seeds. Because the Bible teaches that what is sown in dishonor will be raised in new life; and though planting seeds is my least favorite part of the gardening process for just this reason, that I struggle to believe, God knows. And today this is exactly what I need.
Ann Voskamp once shared on her blog about what it means to minister to those who have suffered so deeply, that is seems like there is nothing you could possibly say or do. She spoke about listening to the stories—about making eye contact—and then she used the phrase that has become a part of my own vocabulary: being a witness
So often when we see those that are suffering deeply our first response is to try and fix it. We want to make it all better, to make the pain go away. But these attempts are often not only futile, but damaging to the one who suffers. Like giving a makeover to someone with a bullet wound.
You would think that being one who has suffered, I would always make the right choice in this department, but I don’t. I am a controller by nature; a fierce and loyal protector. My first instinct is to make the pain just go away. My second is to go “mama bear” on whoever has hurt one of my precious ones. And if the thing is something you can’t actually punch with fists, like cancer for instance, then if I’m not careful my perceived helplessness can turn to apathy. As you may imagine, neither of these first instincts is particularly helpful.
But when I remember what it meant for someone to hold space for me: to be a witness to the way I was suffering and had suffered, to look me in the eyes and say, “I’m so sorry that happened to you.” Then I come back to the power that is present in my presence alone: I get to be a witness.
As someone who walks often through seasons of suffering with others, this can be a dark task at times. But I don’t believe in a God who cannot take the darkest night and turn it into brightest day; so even as I stare into the black of present difficult circumstances, I imagine what God may do. Not to try and predict the future, or control it in any way, but, as Emily P. Freeman says, “to cast a hopeful vision for the future.”
With tears in my eyes, and my hands in yours, Dear Reader, I stand on tip toe and whisper words of hope: what might God do? How might he begin to redeem every broken piece of your shattered heart?
I am the little girl hiding in her closet, wondering what it would be like to be a “normal” child; wondering if God will keep his promise to work all for my good. I am the little girl who at seven years old already felt like “damaged goods,” though I couldn’t have put it into words. I am the little girl who was hurt not only by the abusive actions of one, but by the silence and apathy of many, many, others.
Sometimes the wounds feel too deep for words.
I have been the one holding the box of tissues for the heartbroken wife. I have been the one sitting across from a friend discovering piece by piece, an abuse that so damaged her life that her mind tried to erase it. I have been the one in a hospital room, hearing the words, “it’s as we suspected. She has leukemia.” And how in the world do we go on living in a place where babies get cancer?
Sometimes all you can do is sit with a person. To hold their gaze. To not be embarrassed by their grief, but to enter in with them. To hold your friend in your arms and tell them that you love them. And though you don’t know what the future will hold, or if you should ever make any kind of comforts based on your assumptions of the future (I.E. “she’ll be fine,” “he’ll come back,” “that probably won’t happen”), you do know who is holding you both. The Lord of hosts. Who doesn’t promise us a pain free life, but does promise us always and forever, His Holy Spirit presence with us.
I find it terrifying sometimes, the places God asks me to go, both personally and with others. But one phrase continually comes to mind, like a mantra and a command:Stare into the black, and refuse to be afraid.
I’m not sure where it came from, but I’m pretty sure it wasn’t me. I don’t find myself all that bold or particularly daring. I’ve got fear riding like a tiny hitchhiker in my back pocket. Insecurities like radio static in my ears. My hands shake on these keys sometimes, and I am far from adequate for the task.
But God. How wonderful that He does not call the qualified, but qualifies the called. It’s humbling. I pray it may always be so.
For you, dear Reader; I stare into the black and refuse to be afraid. Because you are suffering, either personally or through choosing to enter into the hurt of someone you love, and it’s painful, and you need to know there is hope. You are not alone. While you mourn the loss of normal. While you suffer in the presence of pain, both that belonging to you and that which you bear with others. While you grieve the very existence of death, and sin and suffering; I stand with you. I weep with you. I groan with you and with all creation for that day when all will be made new. Wrong will be made right. Every tear will be wiped away from our eyes…oh how I long for that day.
Until then, I stand as a witness. I refuse to remain indifferent or apathetic, and instead choose to practice the with-ness of Jesus, trusting that it will be enough. I practice the presence of God with me, and with us, and I practice also giving the gift of my own presence. It is my greatest honor and privilege to hold space for you here in this corner of the internet. So come as you are. With all your broken pieces. With the darkness you feel that surrounds you. You are not alone. You have never walked alone.
Now I leave you with the words of the Apostle Peter. May these words point you to a hope greater than the worst thing that life could ever throw at you
“Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, who by God’s power are being guarded through faith for a salvation ready to be revealed in the last time. In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith—more previous than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ.”
I had a dream last night that my daughter was making paper mache at church. Her hands and face were covered with the sticky white glue/water/flour mixture. For a Mom of a child with severe gluten sensitivity, this was an actual nightmare.
It’s been seven weeks since her last flare up. It’s been a long hard season, but it feels like maybe we are getting towards the end of it…? I’m always afraid to say that. Like maybe I’ll be jinxing it somehow. Maybe I am just waiting for the other shoe to drop.
But part of me is almost ready to dare to hope. To hope that maybe this season of intense hardship is ending. Maybe we have done a better job keeping her safe. Maybe we are finally figuring some things out. Maybe there isn’t another shoe hanging above our heads, but just the same shoe at our feet: that she has severe issues with gluten. And maybe it’s celiac and maybe it’s not.
We were told by the pediatric gastroenterologist that we will not be able to get a celiac diagnosis, even if we did a scope, because she has been on the gluten free diet for so long already.
“Even though she’s still been having flare ups?” I said.
“You could make a case for it,” she said, “but I don’t think it would show up definitively, no.”
She said the only way to get a celiac diagnosis would be to feed her gluten for six weeks straight and then do a scope.
You can probably guess what my answer to that was.
Heck NO.
I am not so obsessed with answers that I will purposely hurt my child to get them.
I am not so obsessed with control that I will break the well earned trust that she has built into me, that what I cook for her, to the best of my knowledge and ability, will not make her sick.
I do not need answers that badly.
It helps that she’s doing better. Right now, that feels like answer enough.
She still has tummy aches from time to time, a few every week. I try to keep on top of her enzyme as best I can. I make sure to follow rigorous hand washing when we go anywhere and I wipe down a table before she sits there.
I don’t take her down the aisles with bulk bins and I warn her not to touch the open baskets of bread at the grocery store. I don’t take her to Willy’s hockey games anymore; that was the tragic scene that we are fairly certain caused her last flare up. Gold fish cracker crumbs littered the bleachers, and who knows what other specks that could not be seen. It was probably just a few too many small exposures in one day.
No matter how we covered her hands with her sleeves, I laid out a blanket for her to sit on, she washed hands repeatedly during and after our time there as well as changed her clothes the moment we got home. I thought I had thought of everything. But then next day when she woke up sick, I remembered the dog licking her face. I hadn’t accounted for that. Most dog food contains gluten of course, and I would never let a person who just ate a slice of bread lick her face.
So we try to be careful of that now too.
It could be easy to start feeling sorry for myself, but when I think back to that season of intense suffering that has only appeared to end a few weeks ago, I remember to give thanks for the little girl with the strength to be sassy to me about how “unfair” it is that she can’t eat/touch/do XYZ.
It’s understandable she’s upset. But the fact that she calls it unfair and doesn’t automatically shy from that thing in fear, just goes to show how the Lord is healing and protecting her little psyche as well as her body. She is forgetting how bad it all is, and I am okay with that.
Maybe that’s what this in-between season is all about. Learning to be okay. Learning to live with the unresolved. The lack of answers. The lack of certainty about whether or not what we are doing is working, or if it’s something else all together. Time may reveal some of these. But either way; God is with us in the middle places just as he was with us in the darkest nights.
My youngest child has always been a good sleeper, but these past few weeks he’s taken to waking multiple times at night again like he did when he was a newborn. I could bemoan this fact, or I could thank God that he’s doing this now and not while I was dealing with a daughter in flare up in the middle of the night.
A friend has needed temporary childcare help with her sweet 2 year old daughter, and though adding a fourth kid, five and under, does make some things (like a trip to the grocery store) a little more interesting, it’s also just so amazing to me that God has orchestrated this timing. If this had happened a few months ago, I wouldn’t have been able to help.
Another friend’s daughter has been in the hospital for the past four weeks; they just finally moved her out of the ICU. And the thought in my mind and heart is that I’m so glad I can offer my help in some small way. Watching your daughter suffer is no easy task, I know it in new ways now that I hope help me to be a compassionate companion.
And you Dear Reader, I am working hard for you; like I’ve never worked before. If you would like to be one of the first to receive my (almost finished) FREE DOWNLOAD: Scattered: A seven day journey to planting seeds of hope in the soil of suffering, just click here to sign up, and as soon as it’s finished I’ll deliver it to your inbox.
In Colorado we are transitioning—from winter to spring. And it comes slowly here, where we often still get snow even through the month of May. But the crocuses are opening in the morning light. The tulips and the daffodils are emerging from the front beds that I neglected to clear of leaves last fall. The chorus of birdsong now greets me and my morning cup of coffee. And the clearest sign; the delicious light that lingers over me as I prepare supper in the evenings.
Though I’m sure we haven’t seen the last of winter’s chill, this time does feel like a change in the air. Like the spring that we hoped for might be just around the corner, after all.
It feels like a full fledged onslaught. The battle for my mind is raging every moment that I am present to my actual feelings and thoughts; and if I’m not present, then I’m just plain numb.
We heard these words of doubt last week: “I’m stumped.”
From a doctor, especially your child’s doctor, those are words you never, ever, want to hear. She looked sad. She looked tired and concerned. She has labored for us and with us for well over a year, and now, we are at the end of her expertise. The end of her possible answers.
“That’s what specialists are there for,” I heard her say. And I wonder if she wasn’t just saying that for us, but for herself. To remind herself that it’s okay that this time she didn’t have the answers we were looking for. In fact, we seemed at a loss for answers at all.
We have run out of non-invasive options. Our next right thing is to head to the pediatric gastroenterologists at Children’s Hospital, and hope they can help us find an answer. A diagnosis. Something, that will help our baby girl feel well more than 50% of the time.
The last time I was at children’s hospital, I stood as a witness as one of my best friends received the news that her 18 month old daughter had cancer. What had seemed like a fractured ankle from a crib injury ended up quite different than any of us could have anticipated. I can’t say I’m excited to go back there.
No solutions feel very comforting right now. Even if it all goes perfectly “well.” Sometimes the diagnosis makes things a lot better, other times, it’s the devastating last blow that seals just how much “worse” it all is.
And even if it’s not worse. Even if it’s all fine; I’m not excited to put my daughter under extensive and invasive tests. I don’t want to watch as she fades from consciousness from anesthesia. I don’t want to let anyone wheel my baby away on a gurney. I don’t want to put her life in any one else’s hands. As I looked at the faces of the pediatric gastroenterologists on the Children’s Hospital website, I just kept thinking to each face, “Do I trust you to take care of my baby girl? How about you?“
The truth is I trust no one. And I know enough now to know that I can’t necessarily even trust myself: I mean, I haven’t been able to keep her healthy have I? No matter how much I slam down the control all around us and our life in attempts to keep her well, it’s never enough. I’m sure there’s been a time more than once over the past year and a half, when I’ve encouraged her to eat something that ended up making her sick. I try not to dwell on those times, but sometimes I do.
All I know is that I know her, and I love her. I remember when she was one-year-old she smelled to me like butter, and sugar cookies. That when she’s happy she doesn’t always smile, but her face is smooth and peaceful. She doesn’t always show her pleasure in the demonstrative ways you’d expect from a five-year-old. And she’s always been that way. I know that she’s happiest when she’s making art. That she’s an extrovert that needs her alone time. That she is more thoughtful and capable of compassion than I often even give her credit for.
A little over a month ago, I found myself making an hour long drive with a car full of sleeping babies. And through the gentle words of a scripture lullaby CD, I heard an almost audible whisper:
If you never find the answers, will you still trust me?
And through the tears, my whispered answer came, “Yes.”
The challenge now is one of memory: remembering the peace that comes when I choose to rest in the sovereignty of God. Remembering and keeping before my consciousness moment-by-moment, that God knows her and loves her even more than I do. That He has not abandoned her. And challenging as this thought is, that He has good for her, for us. Even here, smack dab in the middle of this pain; this terrifying unknown.
What that good might be? I don’t know yet. But I’m on the hunt for it. I’m ravenous. I’m parched. And I need to taste that spring of water that never leaves you longing for more. Especially here in this desert season, as I feel myself walking towards this valley of shadows and death. Come near to me Lord Jesus.
I believe He will.
If you too are walking through a season of suffering, or uncertainty, or both; I’m so glad you are here. I hope to create a place here where we can Cultivate a Fruitful Life, and I know that paradoxically, God often does His best work in the soil of suffering. Will you let me kneel down in the dirt next to you? CLICK HERE to sign up.
Praying for you Dear Reader. I know you’ve been through a lot. I have too.
But together, let’s keep before us, the truth of Romans 8:28, “And we know that for those who love God all things work together for good, for those who are called according to his purpose.” (ESV)
If you are planted in the soil of suffering like I am right now Dear Reader, then maybe, just maybe, God is in the middle of cultivating fruit.
