It all began with a series of misspelled texts from young children in the damp fall of southern life in 2015. I was driving home after a two week stay at my sister’s home in Louisiana, where I had been lesson planning for the year of school with our kids…We homeschool, because sanity is overrated…Anyway, I had just filled my gas tank to return home and had settled into my seat to begin the 4 hour drive home, when I received a text from our oldest son, then 12:
“Mommy, daddy is sick.”
This was swiftly followed by a series of texts from my second son, just shy of 11 at the time:
“Mommy, are you coming home today? Dady is sick.”
“I know…Micah told me…Is he awake now?”
“No he has been asleep for about two days…he wakes up to go to the bathroom but that’s it”
“What?” Is there another adult with you?”
“No he’s asleep”
“He hasn’t been awake today at all?”
“I’m starting the drive home. It will be a few hours before I’m home. Are y’all ok?”
“See you soon”
“Y’all watch tv or play games or something and y’all be kind to each other. I’m heading your way.”
“Ok we will.”
A few hours later…
“I’m in town. I’m picking up ingredients for spaghetti to cook when I get home.”
“ok, sounds good! We’re out of food.”
That was the last night I cooked spaghetti with any peace. Trigger memories are like that. The following afternoon, I took Jesse to the ER for what I thought was a case of severe dehydration following an aggressive stomach bug. It was a Sunday. I vividly remember stepping off of the stage from leading worship that early afternoon following church service, knowing I needed to get home as quickly as I possibly could. It is still the fastest I have left church since Jesse became a lead pastor nearly 5 years ago. Within an hour of arriving at the ER, I was being cupped on the shoulders by a doctor telling me my husband had brain cancer. “Cancer, cancer, my husband has…cancer? He has brain cancer?”, I remember the words tumbling about in my mind without taking any kind of relatable form. That was the beginning of a new life for me…for us…It was the day the bonus days began for my husband, as we were told repeatedly he would not make the night…then, not the day…then, not the week…not the month…not the year…definitely not the year.
I watched a brief video a few days ago about this new technique scientists are using to more accurately portray the color black. It is the closest science has come to making something devoid of any light. It is so dark that it eats away all definition. A 3-D image of a face rendered from this material shows up in profile, but looks like the equivalent of a black hole, head on. Utter, shapeless, light-less, form-absorbing blackness. I watched this, and I thought, “A terminal illness feels like this looks; like a black hole of sorrow and despair.” There are no easy answers to give children asking if their daddy is now okay. No soothing words to the question of when you are coming home, as you answer their pleas on a screen in your hand while seated beside their assumedly-dying, muted-by-a-brain-tumor father’s bedside.
“What’s going on, mom?”
“Why aren’t you home yet?”
“Is daddy ok, mommy?”
“Mom, what’s a brain tumor?
“Can the doctor take it all out like they did Uncle Joel’s tumor?” “He’ll be ok after they take it out, right Mom? Will he, mom?
“Mommy, is Daddy going to die?”
Blacker than blackness. Darker than darkness. Hopelessness. Sinking despair. But then…But God. Light shows up in the form of a distant spec of roughed up, shimmer-less glitter, and you rub your eyes and squint to see if it is real or if it is just the fatigue from 5 days without sleep or food, but there it is…you think…
You spend all of your waking and lying-there-without-sleeping moments staring at the speck, thinking about the speck, trying to get closer to the speck. To your delight, the speck seems to get bigger, brighter, less rough-hewn, more brilliant, as you seek it. And then, one day, you find the speck is not a speck at all, but a star, a guiding light shining down onto something so brilliant you cannot steadily gaze at it, and you realize the star is just a reflection of the thing on which it shines. I cannot help but think about the Christ-child lying beneath a different kind of star, all pure holiness encapsulated in the form of dirt-infused humanity. He was long-sought by wise men bearing gifts valuable to mankind and indicating the purpose of His coming…the gold of Kings, the frankincense of priestly sacrifices, the myrrh of anointing and preserving the dead; and, by the shepherds, carrying with them only their stench-filled clothing and their longing souls. All were equally welcomed, as are you and I, to seek and gaze in wonderment at the fulfillment of every promise made for year upon year upon year, before: Hope Incarnate.
In the time I have lived immersed in this cancer life, I have learned that there is something about living alongside cancer openly that makes people gravitate toward you, and that leads to being told a lot of things, things that I firmly believe are intended to be comforting and uplifting. Things like, “I look at you and I’m so grateful for my life.”…“You make me realize I complain too much when my life isn’t that bad.”…. “I look at your life, and I’m just so thankful for my blessings.”… “I couldn’t live your life. It’s too hard.” It’s a backward sort of affirmation that’s intent is to say, “Your life helps me remember to be grateful”, so I smile and nod, thanking them for their kindness and encouraging them to look to Jesus, to press on, even when the darkness overwhelms, as it inevitably will to some degree as their life lingers.
Friends, the reality is that each of us have our own grief, our own weighty things in life; and, they are not to be laid down beside mine (or anyone else’s) with a tape measure between for comparison. Your life is yours, your struggles your own, having their own purposes in your unique life. You will find no lasting hope or joy in this perspective. My personal reality this Christmas is that I am wet-tissue-paper-fragile these days. Two years and 3 months into this shindig and there is not a word in any language to adequately express the level of fatigue my family exists in every single day. Every morning is a variation of me rising up out of bed and willing myself to remember that life requires the repetition of inhaling and exhaling the perfect concoction of our chemical-laden air to keep on living. I am certain that I am not alone in this. Some of you live now, or have lived, the same kind of life that I do. Some of you are living in your upstairs because your downstairs is still a wall-less reminder of the recent flooding. Some of you are still living on the couches and spare rooms and good graces of family and friends as you wait to repair your own homes. Some of you have lost every earthly possession you had, and some of you have lost the people dearest to you. We are all grieving something or someone in this season of celebration, and that is okay. You are okay.
The world will tell you to stuff down your hurt, to throw on a Santa hat, and choose joy. Just “choose joy”. How hard is it to throw a smile on your face and pretend, anyway? This season is all about joy and serving others and being kind. There is no room for suffering in December. If you aren’t joyful about the state of your life in December, of all months, there is definitely something wrong with you. No matter your circumstances, you should be able to open your eyes in the morning and will yourself to feel and express joy…If you are not doing this, then you aren’t praying enough, reading your bible enough, seeking God enough…The world is wrong, you know. Choosing joy is not about pretending your circumstances are comfortable, or even good. It is not about plastic smiles and feigned “I’m doing well”s. It is not about waking up with a feeling of elation. Choosing joy is about peering through the darkness in search of even just a speck of Light and proclaiming that God is good when you find it still there, as it always is. The life of Christ began in squalor and lingered in suffering until everything He was purposed to do was accomplished: Joy intimately woven into suffering. I do not have joy because my life is comfortable. I have joy because my life is HIS, and nothing can rip me from His grasp.
Our first Christmas post-diagnosis was a strange blend of sorrow and thankfulness. Jesse was alive. Our kids still had a living father. We managed to get a few Christmas decorations up around the house, a feeble attempt at making life feel normal. But life was not normal. It had not been ‘normal’ since September. Jesse had two major brain surgeries in the three months prior to Christmas. He was not the man I married in December of 2001, and yet he was. I bought an artificial Christmas tree, since our annual trip to the tree farm wasn’t an option for his fragile body. I decorated the stair rail as I had done every year before. The kids and I hung ornaments on our plastic tree while we watched “Elf”, and their daddy slept a drugged sleep in our bedroom nearby. Sometimes, Jesse would wake up and wander into our living room, stare at us in bewilderment, and stutter through asking me why there was a tree in our house, only to return to his safe place in our dark bedroom.
Christmas morning came, and he called all of the children to him on the couch in our living room. “I c-c-c-can’t read”, he had told me a few minutes before in our bedroom. He struggled a great deal with finding correct words at all at this point in recovery, and the loss of his reading and word-finding were particularly difficult for him. “It’s Christmas, and I c-c-an’t r-r-read the glasses to our kids….the glasses…the glasses? That’s not r-r-right…”
“The story, babe. The word is ‘story’.”
“Yeah, that’s it. The glasses…”
A few minutes later, he was sitting on the couch surrounded by his kids, reading. When he could not find a word, one of the oldest two boys took over, and read for him. It was beautiful and broken, and I felt that peculiar concoction of grief and gratitude as I watched. I wonder, now, if this is how God felt in the moment I did not witness with my own eyes…His son’s arrival into humanity. While we celebrate the arrival of Christ into our world in this season, I imagine His Father looked on with a mixture of anguish and hope on the day the prophecy of the Old testament was fulfilled and He gave up His son. We talk about the sacrifice of Christ beginning at Jesus’ trial and crucifixion, but really, his sacrifice began in the stable all those years ago. 33 years of suffering and separation willingly taken on and endured, the fate of the world resting on the shoulders of a helpless newborn babe: This is Christmas.
I’ve been studying Isaiah with the kids off and on for the past year, as our circumstances have allowed us the opportunity. Weird choice, I know. Isaiah is full of the traits of God we would, for the most part, rather not acknowledge. We see His wrath, His jealousy, His authority, His power, His untaintable purity, there. Over and over again, grievances and shortcomings are listed. Wars are fought. Despair and corruption call out in written word, and destruction threatens to overwhelm. Just as you are convinced that there never has been or ever will be any hope for redemption, the story changes. Destruction gives way to rebuilding, corruption is redeemed by the purifying touch of Holy God, the power of God not thwarted by feeble attempts, darkness is smothered out by Light. It goes like this:
For the Lord spoke thus to me with his strong hand upon me, and warned me not to walk in the way of this people, saying: “Do not call conspiracy all that this people calls conspiracy, and do not fear what they fear, nor be in dread. But the Lord of hosts, him you shall honor as holy. Let him be your fear, and let him be your dread. And he will become a sanctuary and a stone of offense and a rock of stumbling to both houses of Israel, a trap and a snare to the inhabitants of Jerusalem. And many shall stumble on it. They shall fall and be broken; they shall be snared and taken.”
Bind up the testimony; seal the teaching among my disciples. I will wait for the Lord, who is hiding his face from the house of Jacob, and I will hope in him. Behold, I and the children whom the Lord has given me are signs and portents in Israel from the Lord of hosts, who dwells on Mount Zion. And when they say to you, “Inquire of the mediums and the necromancers who chirp and mutter,” should not a people inquire of their God? Should they inquire of the dead on behalf of the living? To the teaching and to the testimony! If they will not speak according to this word, it is because they have no dawn. They will pass through the land, greatly distressed and hungry. And when they are hungry, they will be enraged and will speak contemptuously against their king and their God, and turn their faces upward. And they will look to the earth, but behold, distress and darkness, the gloom of anguish. And they will be thrust into thick darkness.
Darkness. Blackness. Despair. Hopelessness. But then…But God…
Isaiah 9 answers:
“But there will be no gloom for her who was in anguish. In the former time he brought into contempt the land of Zebulun and the land of Naphtali, but in the latter time he has made glorious the way of the sea, the land beyond the Jordan, Galilee of the nations.
The people who walked in darkness have seen a great light; those who dwelt in a land of deep darkness, on them has light shone. You have multiplied the nation; you have increased its joy; they rejoice before you as with joy at the harvest, as they are glad when they divide the spoil. For the yoke of his burden, and the staff for his shoulder, the rod of his oppressor, you have broken as on the day of Midian. For every boot of the tramping warrior in battle tumult and every garment rolled in blood will be burned as fuel for the fire. For to us a child is born, to us a son is given; and the government shall be upon[d] his shoulder, and his name shall be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace. Of the increase of his government and of peace there will be no end, on the throne of David and over his kingdom, to establish it and to uphold it with justice and with righteousness from this time forth and forevermore. The zeal of the Lord of hosts will do this.”
When I think about Christmas, this is the portion of scripture that leaps most readily into my mind. I think about the beginning of suffering for Jesus, the beginning of a Father’s sacrifice that marks the beginning of hope for mankind. His sacrifice did not begin at the cross; it ended there. The sacrifice began at the birth, at Christmas; and, that is why we celebrate it and proclaim it a season of joy, and of hope. This is the dichotomy of Christ, the shared space of joyful hope and hopeful despair, the darkness needed to give way to glorious Light.
If your hope and joy this Christmas season is coming from looking into the peephole of someone else’s existence and counting your blessings based on the suffering you have been spared in this temporary life, then you do not have real hope, you have temporary comfort. If your joy, your satisfaction, is coming from looking left or right and finding relief in what you have and in what you do not suffer, then you do not have the joy described in scripture, you have fleeting good feelings. Real joy is born of seeing the goodness of God in whatever suffering you are called to endure, and running without relent toward Christ even while the pain lingers. Real joy does not demand fabricated smiles and made up perfection in your life. Real joy is found peering through the darkness at the always-lingering Light, knowing that, whatever you live out, the REAL living comes when this tattered frame wastes away in death. Real joy comes of knowing God is still good, still on his throne, no matter how your life shifts. And real hope? Real hope is not born of human comparison, nor of a carefully curated system of checks and balances that make you feel temporary satisfaction in your own ability to manage your lives. Real hope comes of looking on an infant born into the physical filth of a stable and the spiritual filth of humanity, an infant King sent by a loving Father to suffer the consequence of our own sin FOR us, and knowing we could never earn the grace we have been granted. Real hope comes from seeking the star in the blackness of every night of this life suffered, and finding salvation in the streaming light coming down from the heavens. Real hope is found in the God-man no longer on the cross who began his suffering as a baby in a manger. Real Hope is Jesus.
Do not tuck away your grief and pain because it is Christmas, weary sufferer. Instead, bring your darkness to the manger with you like a wise man carrying a gift of greatest worth to present to the One resting beneath the light of the star. Your suffering is not too heavy a load for the wee babe in the manger and your darkness not too black to give way to his Light.
Merriest of Christmases to you all, dear friends. May your souls seek the Hope in the hard, today and always.
Jesse, Ashley and family;
Merry CHRISTmas! Y’all are in our thoughts and prayers always. We know this is beyond difficult for y’all. We are praying for complete healing for Jesse! Have a blessed day! We lost a very, very dear friend-sister in the Lord unexpectedly this year, just two weeks ago. It is very hard!
Have a blessed day! We love y’all! Thanks for the update Ashley.
Love in Christ;
Rob and Robin Crenshaw
Thank you for being so real. I am old enough to be your Mom. I just hate this for such a young family like yours! I feel like With cancer as Christians if we experience fear and negative emotions we are “less than faithful.” That is not it at all. I was stuffing my basketful of emotions this season with a third type of cancer diagnosis and consult approaching at MD Anderson for my husband of 41 years, the love of my life. One was “the good kind” thyroid , seemingly cured for now. Second was melanoma “caught early” and now prostate which “so many have and it is curable afterall.” All surgeries have side effects and no cancer is good. Cancer is bad stuff! Allow me to be real, please, I want to say. As a spouse and caretaker it is so tough sometimes. I never doubt God is good, faithful and Holy. I do,however,become weary and tired just like you do. I have guilt because his cancer (so far )is treatable and others ate not. None of us know what tomorrow brings. None know our number of days. All are sure to die. But,above all, we Christians have hope in heaven, a place where there are no more tears and sorrow so I fix my eyes on the author and finisher of my faith,the only everlasting saving God. I pray for you to have strength and peace ! I pray for your children. I pray for your husband.
Thank you for sharing…. I’ve kept it to pray over each part💕🙏
Sent from my iPhone
This is beautiful Ashley. I’m sorry for your struggles but happy for the Joy parts! Thank you for always sharing perspective and the bigger picture.
Read it all! Tears in my eyes… Wonder if you are “filling the pulpit” some! You have an anointed way with words! Praying for you that you would all feel yoked to Jesus! Sending love as well!
May God bless you and your family. How proud I am of the courage y’all have. Praying for y’all
It has taken me years to find this joy in the right place , the right things. Such profound words from one so young, and yet suffering leads to great insights. Wishing your family a happy and blessed new year.
Your words have been used greatly by the Lord to guide me through suffering. Thank you for your faithfulness, for fighting the good fight, and pointing me back to Jesus.
Dude, I hope you never stop writing. One day I’m going to figure out the words to tell you what some of your words have done for me…but for now I’ll just say something dumb about carbs and butter, because I know you feel me 😉
Prayers for your Husband and Family