Tag Archives: caregivers

The Land of Before: The Thirtieth Year of Marriage

December 2, 2018

Last night, I called my younger daughter, who is 1,001 miles away at college.  She said that she was in the common room with her suitemates, and they were bonding, and I was glad because I think, in general, common rooms should be used more than they are.

Somehow, they got to talking about abortion and babies and whether you would keep a baby who you knew was destined to die. Abby had to tell her new friends that, actually, that happened to her family–that we lived that two years ago.

Until Abby wrote about Stephanie Grace’s death for English 120, I didn’t how much it destroyed her. Of course, I knew April was heartbroken, lost, and bereaved, and I knew of my own helplessness, but I did not know how deeply everything–comforting her sister, shoring up her mom, all while still keeping perfect grades–had impacted Abby.


That’s the thing, the stunning thing: some of us carry tragic loads that seem too heavy to lift even once–and yet we must carry them evermore.


I am in a group of women, anencephaly mothers and grandmothers, hundreds upon hundreds of them who have lost these precious babies, who are lifting their precious loads, and who are walking on in pain.

Before Christmas, I didn’t think I could walk on any longer.

It all seems so unfair. We should have a two-year-old granddaughter romping through this house. We should be worried about keeping fragile Christmas ornaments out of reach, and instead, there’s no baby–even her mother is gone. There’s just sadness, resignation, and anger.

With losses like those we have accrued, it does not matter if you can pick yourself up–because everyone must emerge from despair. If one person remains in the pit, then the other family members find themselves staying near the edge–there is, after all, an intrinsic moral imperative: you tend to the hurt. You try to carry them out–and, if you can’t, you remain nearby. In a family, there is no TRUE moving on unless everyone is ready to walk.


I cannot believe how long my little family has lived with rage, for rage is–in some ways–the absence of love. But rage has within it an angry love–a love that says, “None of this should have happened, and it happened while you were with me, and you dared to stand beside me and endure hell and hard things. You stayed there with me, you propped me up, and I am mad that we had to endure this hell–but every single time I see you, I think of the hell.

That’s what’s no one’s really honest about. That’s what no one says: if your husband holds your hand through two miscarriages, and if he’s there during two failed adoptions, and if you’re there during his three cancer battles, and if you’re both there during your granddaughter’s devastating death, then it will not matter how many roses one of you someday summons the energy to buy. It will not matter how many candlelit dinners you eat together. It will not matter how many times you reach for his hand in the car.

The sad anger is always there.


I understand that God can do a work. What I am even more fully aware of is that God has not yet done a work, unless you consider the marvel that we are both in this house, that he is sitting beside me on the sofa as I write this. There is still a resilience despite the losses stacked like cordwood.


In this edge-of-despair, often angry world, sometimes I feel far from God. I know I feel far from my indoctrination–I joke with friends that I need reindoctrination, I need to go back to those early days of adulthood, days where anticipation was great, when there was joy in keeping a house and fulfillment in the suppertime smiles of my husband and children.


What you must never, ever say, the thought you must fight with ferocity–the one that you must always keep captive is this: I can’t believe this is my life.


When I got married, I intended to be a frugal homeschooling quiverfull mom with six children–everyone on one pew at church.  Instead, it sometimes feels like the only true harvest I have is sorrow–buckets and buckets of sorrow, and it just seems like God has forgotten us.

But I know that, despite everything I feel, God is there because Mr. Chalk told me so. As did Lou Turk. And Mrs. Mullis. I know that at the bottom of the ocean, He is there. On the top of the highest mountain, He is there–and so He has to be in my sad and angry house, but I can’t find Him here.

And so I get tired, And I want to raze the house.


Rationally, I want to destroy the house. To give up, take a cat and dog and flee–because there’s no way that God could have built this. Rationally, there’s no way the “tapestry” they talk about these Christian memes and movies can actually be something that works for me.

All I see is ugliness.

All I see is destruction.

All I know is the silence of the joyless house that I sit in for eight hours a day.


It is only natural to think, how can this be God???

I don’t know because I’m not a theologian, but I think it can be God because I think that God, in the hard times, can teach us the meaning of the word sustain.

He can teach us what it means to be held up.

He can teach us what it means to be propped when there’s just no more energy for propping. When there is absolutely nothing left that we can do for ourselves, that is where God shows up–in our weakness, in our frailty, when we can be neither kind nor patient, when we cannot be anything positive at all.

But we hear ourselves at work or the grocery store, saying, “Good morning, Sarah, that’s a pretty shirt.” “Hi, Whitney, how are you today?” starting the day’s cycle of kindness, the process of reaching out, of being God to others–in this gentle patching, we lose a little bit of the pain. A little bit of that rage. We can forget the hurt temporarily and see, instead, God–I see Him in the student giving me  the candy craft he has made–marshmallows on a stick–embarrassed at 15, but still reaching out, being Jesus to a sad, tired teacher.


Ultimately, no matter the emotional shape of our house, no matter how close we are to the edge of the pit, we are all still together.


August 10, 2021, our 30th anniversary 

Since that day in May–the day of Greg’s brain bleed, the day of the strokes, the day the woosh of the pit was the only sound I heard, when we were all, once again, engulfed in it–I have told myself, On August 10th, I am going to pull in his driveway and say, “Let’s go be glad you’re alive.”  


I thought, really, it wouldn’t happen after thirteen months of living apart.

I thought it would be too big, remembering the land of before. That land is a place we no longer know–and it’s a place few people here have ever seen us be. We have spent two decades in a land of burst and wasted balloons with little and faint music; we have only remnants of ribbon.


Tonight, my younger daughter and I were in her bathroom–she was twirling in a little black sundress and her favorite cardigan, twisting her hair into mini buns, a preparatory post-pandemic collegiate dress-up. We were prepping for one last trip to her favorite Goodwill, forty miles away. “Let’s take Dad,” she proclaimed.


Abby had collected stories for the car–the eight-year-old she tutors who hates “baby TV” (Paw Patrol), her roommate’s cactus scandal (the cleaning service threw away $250 worth of his plants), vegan adventures (recipe plans involving artificial eggs). She was opinionated and funny, just like we’d raised her, and we were already missing her, although she was right there.


On the way home, we went to Burger King–I got a real Whopper;  Abby, an Impossible Whopper, and Greg, cheese sticks.

Abby’s vegan Whopper was a little burnt, and I rolled down the windows while Greg made Dad jokes: “It’d be impossible for me to eat that Whopper.” Abby ignored us, munching happily, saying, “It makes me feel included.”


We whizzed down the highway, the sun setting pink in the distance, the sky cloudless through the pine trees. 

Abby, her mouth full, mumbled something about deer.

“Deer?” I asked.

“Did you see all the deer in that field? There were like a ton of deer. Like twelve. There were mothers and babies. So many deer.”

We hadn’t seen them. Not even one.


We told her the story together, one of the foundational stories of us, of our family in the land  before the pit:

On the night we got engaged, while driving home, I saw two deer standing in the dark at the roadside. 

April, when she came to us in foster care, had the last name of her legal father: Roe–meaning deer.

And when we found out we were pregnant with you–when I was desperately afraid–we drove the next day to the fertility doctor in Woodstock, in Town Center, and as we left the parking lot, there stood a deer in the parking lot, looking at us, then leaping away.

“Abby, it was near a highway like the one in Jacksonville. Near a mall. Lots of stores. There shouldn’t have been a deer,” Greg said.

And we marveled as we rode in silence, remembering the deer.

 

Thankful for the Good (I wouldn’t even tell me what would happen to me)

For almost twenty years, I have had a Mary Engelbreit calendar hanging in the same place in my kitchen. Tonight, as I stood washing dishes, I looked up and saw her succinct command: Give thanks.

And I thought about the fact that I do give thanks.

I know, I know, there are those of you who call me Eeyore, who wish I were a little peppier and forced some oomph into the monotone, but, in general, the Lord and I know I’m grateful.

And as I stood at the kitchen sink tonight, I thought about last Thanksgiving, when my father had been dead only a month, and my husband was still my husband–and recovering from his second heart surgery in 55 days. He was in our house, in his recliner, Andy Griffith and Barney Fife his constant companions.

And tonight, for a just second at the sink, I cracked open a door. I let myself think about how much my world has changed since last Thanksgiving.


It is the most astonishing thing–to be without your husband, to have declared null the words you spoke twenty-nine years ago on an August day, to negate them, to take every one back, especially when, for so long, you clung solely to those words. You meant them.

To have them taken away: to have your words taken away when words are everything . . . To watch them disappear and–after months, years, of crying–say, “That is fine with me,” to stand and watch yet another chasm open, knowing that if every cliff gives way, you will, in fact, survive–is a Red Sea moment.

That seems an overstatement—hyperbolic drama. A simple divorce does not compare to the parting of the Red Sea and the sparing of the Israelites. Who must I think I am?


I stood in church on Sunday night–Sunday nights in South Georgia are when the “real” worshipers attend (for those who don’t know me, the sarcasm oozes), when the facades fall off, when the congregation gets loud–and some of the adults were truly free in Jesus that night. They were, some would say, losing their minds.

And, in the back of the church, I noticed some teenagers laughing. Eyebrows raised, hands over their mouths, they whispered to one another, grinning at the fools.

And, for a minute, I admired their innocence, their complete lack of understanding of the reality that, truly, God is the only thing that matters; Jesus is the only thing that gets some of us through, that grace and mercy are truly sometimes our souls’ only sustenance.

There was so much that they had yet to endure, and I loved that.


I have a casual friend who is a sister in loss. I have never been to her home. I do not know her phone number. I cannot tell you what kind of car she drives, but we know loss, and we are sisters in faith–our bond is beyond texting and pool parties. 

When we do see one another, we tighten the knots.


We bumped into each other one day in a Walmart parking lot. One of us, I can’t remember who, had recently celebrated an anniversary, had looked at a picture of her young, naive self, hopeful on her long-ago wedding day–and posted a picture on Facebook.

We stood between shopping carts talking about that picture, about the days when we hoped for bright futures, when we thought that they were assured. And my friend looked at me and said, “You almost want to say, ‘Don’t do it.'”

You look back at the young girl you were, at all that was ahead of her, and you want to say, “Don’t walk. Don’t take that step or that one. Don’t move ahead. Because the path is one of pain and sorrow. The losses are stacked like cordwood.

But on our wedding days, so full of joy, most of us are ignorant of the sorrows to come. Like the teenagers in the church, there is so much we do not know.

On our wedding days, we anticipate unity and joy—the relational richness of Christ and The Church. 

But within marriage, we also learn this: the losses in our lives reveal to us the character of God. Behind each loss, there is an assurance of His presence. He is present in our horrors.


In the loss of my granddaughter Stephanie Grace, I have seen the hand of God more mightily than I have in any area in my life. When I stood in that hospital room and held that lifeless baby, I could not have known that her story would reach–literally–throughout the world.

We cannot see the heavenly scope of our loss; we cannot know the extent of what God has planned when our treasures are taken from us. But when much is taken, when you lose babies and jobs and houses and money and health, when it is all discarded–that is when you know that there is only God. 

There is only God. 


He is our only hope, and even as a cleansed sinner, as someone who does MUCH wrong, I can say that He is faithful, that He has restored much in my life, that He has blessed me abundantly, through every loss that I have endured. 

So, even in the loss of my marriage, in this stripping away, I trust in this: He is there.


I talk about cordwood a lot in this blog because that is how I see my losses. Stacked, heaped, piled high. 

An elderly reader who knew me in my childhood once messaged me, saying, “Even from infancy, you have not had it easy.” 

I cried that day because I had never considered it that way. I see myself as having endured much from first grade on, yes. But I had never thought: Even as an infant, even as a toddler, I was enduring. Brain surgery. Leg braces. Months-long pneumonia. 

Even as a small child, I was suffering.


My brain tells me to count up the suffering, to count up the loss, to evaluate and contemplate and think about all that I do not have. 

And I am without much. 

I rearrange the things I have lost, these logs of heavy sorrows. I pitch a fit and try to throw them. Behind them, all I find is God. 

All I find is God. 


Five years ago, Thanksgiving meant dinner at my father’s. With my husband and my daughters and twenty other people. This year, there is no one. This year, a neighbor is making me a plate. 

In the natural, it makes no sense.


As recently as seven years ago, I would have wanted to make this make sense.

But tremendous, all-engulfing loss makes it impossible to have anything other than God. Past a certain point, there is no comfort but the assurance of God’s presence and the fact that He will do good.

Lose enough, and it becomes easy to live in the day, to do that which is set before you–and on good days, you can even work with all your might. Endure enough, and it becomes twisted into your core that tomorrow is not promised, that all is dross.

You take out your scales–you weigh everything while simultaneously letting so many things go.

And it’s not trusting the process; it’s not time heals all wounds, it’s not relentless forward progress. Rather, it is simply this: You have seen everything stripped away, and you have seen what remains.

He remains. 

He is faithful through our pain, through our loss, through all our suffering.


The 21-year-old bride who stood in that church on that August day 29 years ago would, I know, be stunned to learn she’d spent two decades consumed by caregiving–and she never homeschooled–but her husband did. She would find it amazing that she was, in fact, the primary breadwinner twice. She’d be dumbfounded that she lived within a mile of her childhood home, taught for the arch-rival high school, had only one birth child–and only adopted one. The yoga would be hilarious to her. The pets, oh, what a surprise they would be.

I wouldn’t tell her about the losses. I couldn’t do that to her. I realize that, sitting here now, staring into the darkness of my yard: in the Walmart parking lot that day, my friend and I agreed: we would tell the young bride to run.

We wouldn’t tell her what would happen.

That is stunning: I wouldn’t even tell myself what would happen to me. I wouldn’t recite the litany of the things that I was going to lose. I would let myself be ignorant.

I could not say to myself: You are going to lose this man.

I could not say to myself: You are going to lose your father.

I could not say to myself: You are going to lose your granddaughter.

But I could grab that bride’s hands, clench them tight, look her in the eyes, and say, “God is going to sustain you in the days to come; He is going to be faithful, and you will stand strong in Him.”

There is so much pain in this confidence, but there is also so much confidence. Beneath the cordwood, there is this bedrock: Good will come. 

And for that (and sometimes that alone), I will always give thanks.

Photos by Magen Lindstrom

Please: Don’t Ask How I Am (When You Know)

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(Note: This is not to step on toes. This is to help me survive the grocery store. And any tragedy survivor’s inner circle should always ask–multiple times a day.)

Five weeks ago, after Greg’s open-heart surgery, when he was housebound and didn’t really feel well, I would pick him up after work and we would go sit at Ruby Tuesday’s and share an appetizer. It worked to fight cabin fever, and sometimes, sitting across the table from each other, I could feel the trauma start to slip away, could glimpse the people we once were.

One day, on the way back to the house, when I thought he had also briefly remembered, “Oh, I used to like her,” I said, “I think it would take more than a month on an island together to recover. More than a month. I’d need two weeks of just pure silence.”

And he agreed.


Of course, we did not get that. My father died by suicide days later, leaving us–once again–completely unmoored.

(If you have joined this blog for the suicide segment, but have missed the preceding anencephaly and cancer segments, you need to know this: the members of my little family are all too fatigued/wounded/calloused to comfort one another.)

Beyond encouraging one another to eat and suggesting, “Perhaps a hot shower would help?” we have little to offer in the way of assistance.

We can offer you little as well.


My father’s death has me exhausted by the simplest of questions: “How are you? I am asked this a hundred times a day by the kindest of people. It is, after all, the all-purpose American greeting.

It seems rude, then, to suggest this, but I believe that perhaps after tragedies that question should remain unasked for a while. These days, I can feel “fine” and five minutes later be weeping in my car. Everything is confusing; my emotions are ajumble–do I want to go eat with a friend, or do I want to lie in bed with my cat? Right now, I can’t decide between Mr. Pibb and Coke without crying–so I certainly can’t tell you how I am.

Saying “fine” after a tragedy is easy, but it’s a lie. Not only have I lost my father, but I’m watching my daughters and brothers struggle from hours (upon hours) away.

Saying “awful,” while more honest, necessitates a conversation that neither of us may really want to have–and it’s not entirely true because there are still bits of joy in each day.

Saying “sad” might make you pat me on the shoulder, and then, depending on the depth of affection we share, I might collapse crying in your arms at school or at Walmart.

And you know all this: you know I’m not fine. You know I am awful. You know I am sad. So, maybe just take a break from asking for a while.

Just say, “I’m glad to see you.” Then–maybe–smile.

In the days right after a tragedy, just be glad that the survivors are coming through the door at work or are seated next to you at church. Acknowledge their presence, but don’t question it. It’s one less answer they’ll have to search for, and they will be grateful.

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Time and Tiaras: On the Death of my Best Friend

222888_1018767942182_6886_nThis blog was originally a Facebook note on September 19, 2009. (Today I found myself writing part two, so I thought I would post this, part one, tonight.)

This has been a hard weekend. A teacher from Center Elementary, Delilah Thornton, passed away suddenly—and although I did not know her, I do know Suzanne Bokor, who now has lost her best friend. Who writes on her Facebook page, “I can’t sleep or stop crying . . . I don’t know what I’m gonna do without her . . . Delilah, you will ALWAYS be with me . . . My heart is broken. I love you, Delilah.” And I know the land that Suzanne is walking into, because it is one that I have been walking for almost two years, since the death of my dearest adult friend, Stephanie Saussy. 

When you are a kid, friendships are almost prescribed: your seatmate on the bus, your softball teammates, your mother’s best friend’s kid. It doesn’t matter whether you like these people or not, because you are stuck: they are going to be on that bus, at that game, on that porch, playing Monopoly under duress while your reprieved, happy mothers giggle in the next room. Make friends; make do, take what you’ve got.


Adult friendships are different; they are based more on a choice: I like this person. A lot is at stake in the buy-in—as an adult, you’ve made mistakes bigger than dropping your lunch tray, you’ve got more water under more bridges, and you think really carefully about who you are going to show those long-buried skeletons to. Then there’s the time investment—something laundry and carpooling leave too little of. For mothers, especially, I think friendships carry an added cost: you know that your daughters are going to idolize your friends, just as you did Mrs. Campbell and Mrs. Fesperman in your childhood world. So, you hope to pick someone worthy of the time and the tiaras—and in Steph, largely, I had both. 


I didn’t move back to Waycross happily—we were broke, Greg was sick–I didn’t know or care who my neighbors were. Sure, I knew that behind us was the Saussy’s house, but I didn’t know a Saussy was living there. It took about three months for Abby and C——- to discover one another through the backyard bushes, and, truly, I spent the first sixth months of our friendship apologizing for my family’s intrusion. I was a teenager again—the uncool kid, the fat chick on the periphery, star-struck by the cheerleader with the great husband, the easy pregnancy, the monogram-wearing kid, and the perfect smile. She was and had everything I would never be or have, and why on earth was I now in her kitchen? 


I know now that God put me in that kitchen, that He lined up our lives—that my time in Cancer Land, complete with a 7 month-old infant, uncannily paralleled hers. Greg and I had lived it: we had counted the minutes until the next Kytril pill; we had shaved his head, worrying about what our children would think; we had struggled through the stupid marriage stuff (“Why can’t you put the milk up?”), while simultaneously struggling through the deep stuff (“All Mommy can tell you is, I really don’t think Daddy is going to die.”) 


And so, Steph and I had common ground on which we based an uncommon friendship: 224303_1018767902181_5896_nthe teetotaler and the gal who enjoyed the glass of good merlot, the mother whose kids were bedraggled and barefoot and the mom whose kids wore matching Crocs with their every outfit. I exasperated her with my total cluelessness about the feminine world of makeup and hair: “You send that child over HERE before that dance recital. Don’t you TOUCH her hair.” Steph was my girls’ biggest fan, and the stars in their eyes were certainly those that I expected. 


Now, I am left, holding that friendship—she is gone. One of the ways in which the loss of an adult friend differs from the loss of a childhood buddy is you know so much more. You can count the cost. You know the tradition of coming over “just before lunch on Christmas” is over. That there won’t be anyone else that you can lie in bed with on a rainy afternoon and watch “The Waltons.” That it will be years before another friend, a replacement, looks you in the eye and says, “I haven’t ever told anyone this.” You know your daughters will hold onto the bracelet that’s broken, the T-shirt that’s stained, and you will not be able to fight their insistent “Miss Stephanie gave this to me.”
There’s no more giving—you’ve gotten all you will get. And the instant you realize that, your heart is broken.

The heartbreak that follows the death of your friend is totally misunderstood. You have not lost a relative. You have not lost a child. You have not gotten a divorce. You have just lost a friend. You will go to work, not missing a day. You will be kind to the busybodies who stop you at Kroger, prattling about “her tragic death,” oblivious to the fact that part of you is now, forever, gone. You will cry at night alone, after your understanding husband gives up on understanding. You will wear her earrings her family gave you, touching them just to get through the day.

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You will get through an amazing number of days, you and your broken heart. You will see a sunset, hear a song, smell her perfume—even, sometimes, hear her laugh like she’s in the room. You’ll even see her in your dreams: That is the best of all. 


And you’ll realize that an adult friendship is the best of all—it’s the hard stuff: marriage, kids, sickness, bills; the fun stuff—first birthdays, drinks in the backyard on a perfect summer night; the forever stuff: listening to music in the dark on a drive, looking at the stars, knowing all is right in the world, at least at that exact instant. You appreciate that someone with one true friend is rich indeed, even if that friend leaves for Heaven early.
You know this, because you’ve grown up.

Your Broken Pots: His Glory

71021017_2747127791987277_3629301193945120768_nToday, I spent silent hours in the car with Greg–we were going, again, to the doctor. We don’t even pretend anymore; this morning, we didn’t want to be in the car, didn’t want to be spending our day in waiting rooms. We did not buy Chick-fil-a biscuits on the way out of town, didn’t discuss going to the arboretum after the appointments–there was no attempt to make this into a fun trip.

He got into the backseat of the car–he can’t ride in the front seat near A/C with his dry eyes. He played Dig It for ninety minutes while I listened to Jason Aldean on Pandora.

We were alone, together, absolutely silent, so weary of it all.


The drive home was slightly better–he’d gotten bad news about his heart, but good news about his eyes, and, besides, the Braves were on WTBS.

Distraction is good in a crisis, and October medical setbacks are splendid, really–there’s always baseball to watch, to pretend to care about. (Faking interest in every round of Wimbledon is much more difficult, but we managed to in 2001.)

When we got home, we continued watching, and I idly scrolled through Instagram–cats and triplets cheer me up when nothing else will.  And, there, mixed in with the jumble of cheerful pics, there was a wedding picture of  Juli Wilson, pastor Jarrid Wilson’s young widow. Her husband died by suicide a month ago–it was national news.

As I looked at the sweet, hopeful wedding picture, with its 37,000 likes–pictures taken just twelve weeks ago had only 527–and I thought, “This woman didn’t want this ministry.”

Just weeks ago, she was posting pics of her young sons on the ball field, silly shots with her husband at a barbeque, the whole family piled in the pool. Thirty days later, not only has her whole world changed, but she also has 161,000 followers.

She didn’t want them. That. 

She wanted something else entirely.


That’s the whole problem, really: what we wanted is so far from what we got.

That sounds so simple that it’s almost moronic, but think about how far what you have right now is from what you wanted.

I wanted to be a stay at home wife, a homeschool mom, to have scads of children who had my eyes; I wanted to quilt and create. I cannot even confess all of the things that I wanted that I do not have because doing so gets me lost in a world of sorrow and lack.

Balancing the loss of what we wanted and the reality of what we have–and finding a bearable place to put all that pain–seems, at times, to be the bulk of adulthood’s mental work. There’s still a part of each of us that stands and screams, “This is not what I wanted!” and we have to try to silence the shouting, have to try to convince ourselves that this–though unwanted–is good.


Three weeks ago, when Greg was having his mitral valve replacement, we were told multiple times that he could die on the table, that–due to the calcification on his annulus– his heart could break in half.

My father, my brother, and friends in our inner circle offered to sit with me in the waiting room. I told them all no.

I wanted no one near.


I can’t help but think of my own desire for solitude and space when I consider Juli Wilson.

I cannot imagine my husband’s death making national news, my reeling family in the media spotlight, TV commentators dissecting his final hours, YouTube pastors and laypeople pontificating on his ultimate destiny–heaven or hell? And lost is the fact that Jarrid Wilson was a person, that there are people whom he is known to whose hearts are breaking.

And faced with this–the reality that she knew her husband, his heart, and their mission, Juli has decided to publicly walk forward on a path she did not choose.  To accept the mantle she did not want, could not have dreamed of.

And that’s what we as Christians do–it’s what we must do to make sense out of this messy and chaotic earthly life.

We must hold up our broken pots, show them to each other, say, “This is what I have over here, and this is what I have learned so far.” 

The beauty of our brokenness is that we don’t even have to create one perfect clay pot. We don’t have to have one single part of our lives together–not one single part–because we are covered by God’s grace, and people can see that light inside of us.


On Facebook this morning, after our long post about Greg’s rapid AFib and expensive eye medicine and weariness, there was a comment from an old friend: “It’s very brave for you to share your lives with us. At the risk of sounding trite and cliche “your tests are testimonies” to everyone.”

Greg and I are surprised by messages like these. We know we are deeper in the mire than we have ever been Despite this, God is using our walk.

Isn’t that amazing?


Greg and I cannot fathom how this will all end, or if it will end, ever. We are honest when we say this to each other.

Today, I told him, “What I miss most is having hope.”

And he reminded me that there is still, deep within me, light. “Aren’t you the one who says it will all work out, that it will be okay?”

“Oh, that?” I replied, “That’s faith. I have plenty of faith.”


Faith is my one clay pot, over in the corner, a little chipped but still unbroken.

I suppose Juli Wilson has a pot like mine–one she can’t put down, won’t give up, even if too many people are watching her carry it right now, even if she wants to rest.

Because once almost all of your pots are broken–once you have given up forever on finances and family and ease–you see the beauty in the few pots you still possess, and you want to show them, to share them, to say, “I can count the things I still care about, the things I am still sure of, on three fingers. But let me show you this beautiful pot that God gave me.”

Your remaining faith: His eternal glory.

 

 

 

 

 

 

 

 

 

 

 

Emptiness (is a) Testimony

70603464_431735304402275_6081406836227964928_n.pngWhen I was younger, there wasn’t anything I hated more than blow-drying my hair, and in the hot summers of South Georgia, I saw no reason to do so before bed. This distressed my grandmother with whom I lived, who was a true saint. Each night, she would beg me to dry my hair. And when Greg and I were dating, she would still continue her bath-drawing lecture.

One night, Greg heard her say, “Rachel, if you blow-dry your hair, I will give you extra money for the trip.” Something about that rubbed him wrong at the time, but it didn’t bother me, and it doesn’t bother me now. She was trying to get what she wanted, a granddaughter with dry hair, and I was trying to get what I wanted–and have wanted since the age of five–away from the blow dryer.


I was fully confident in my grandmother’s love. I knew her well, I knew the sacrifices she had made for me since my birth. I had always been told that she loved me from the moment my mother told her I existed, and I know that to be true. When I was a very ill toddler, hospitalized for hydrocephalus in Egleston Children’s Hospital in Atlanta, Grandma would drive all over Atlanta hunting for Gerber Blueberry Buckle, the only food I would eat.

She loved me with that desperate love with which you love a child who might die.

I loved her equally. But Greg, who was an outsider, viewed our interactions with a different eye, and he thought that in offering me an incentive, she was actually offering me her love.

This was not the truth, but it was the truth as he saw it.


I’ve had a lot of time lately to think about the tit-for-tat economy and the conditional nature of most daily love. Everyday love. Our earthly relationships are meant to mirror Christ and the church, the Heavenly Father and His children, but what they often mirror are Walmart transactions: you give me this and I will give you that–and if you do not give me this, I might give you something, but it’s not necessarily going to be what you want or need.

We become very accustomed to these conditional reciprocal interactions, engaging in them over and over until suddenly, one day, they have lost their appeal.

Doing something just to get something seems, finally, wrong.

It may take years, but work-based worth-proving loses all of its appeal. We simply don’t care about getting anything anymore from those people. If we have to play baseball to win our parents’ love, and we start to hate baseball, we start to hate our parents. If children have to make A’s for Grandpa to be happy, when chemistry class gets really difficult, and then geometry does too, and they’re doing the best they can but have B’s, they begin to dislike school–and feel differently about Grandpa.

I don’t know what it is about us, but we get tired of the if.

We just want love.


Most of the C.S. Lewis that I have read comes from short tweets, inspirational art, and quick glances at underlinings in my grandmother’s books. but I know that one thing he says over and over is that if we yearn for something else, then something else better must exist. And I think that if we yearn for a love that is not conditional, we are in some ways proving the existence of heaven. A loving God would not create us with such a deep desire to experience true love if it were not possible. And in giving us Jesus and freeing us from the “works mentality,” He still did not erase the longing for love.

You may, after a good day–one with blue herons and sunny lakes and icy lemonade and happy children–feel awakened and relieved. For that moment, you may feel all your burdens lift. But eventually, they will settle back upon you, and your heart will once again be weighted and grayed–and you will again feel fear and tremble.

It is in this time that the promise of heavenly love is so powerful. To know that God loves us even if we leave dishes in the sink. Even if we get every orifice pierced. Despite our tattoos, despite our sin, despite the horrifically poor decisions that we made when we were fourteen or thirty-eight. In the face of all this, His love is unchanging. To live, then, with the changing love, of our parents, partners, and children, is particularly distressing.

We want heaven, but we’re here. We want full souls and spirits, but we are here.


That longing for more, those jostles in our souls that remain even after the best of earthly days, is, then, a reassurance, a heavenly reminder that if you cannot be filled here, there must be a there. 

And so the feeling of emptiness, of disconnect, can become a glorious reminder that elsewhere, there is more.

In this way, emptiness becomes hope.

And because we know this, because we understand that knowing our emptiness means knowing His fullness, we can go forth. Without earthly understanding. Without earthly love. Without any single thing our soul thinks we need, we can go forth–even on the days we dread.

In our lack, there is His abundance.

Glory.

Things God Allows

70166908_2269409233371506_8850290329752961024_nThere is something that God does for me before a crisis–when I can see the giant, dark waves coming and feel the sand beginning to wash out beneath me. He allows me, always, a brief time with friends. The quickest of rejuvenations–not weeks on a beach, not even lingering dinners–just quick reminders: You also have this.

You have someone who smiles the second they see you. Who rearranges their schedule, welcomes you with snacks, wakes their slumbering kids, sits everyone in comfy chairs and lets you, for a moment, forget that offshore the waves are rising, and soon enough, they will be crashing.

I did that in August–sat in my favorite chair in my friend Lynn’s house, some 260 miles from mine. I petted her dog, joked with her kids, ate a donut.

Then it was time to go home.

I didn’t want to, really. Major medical crisis #4 was at home. I wanted to stay away, to wander around Atlanta, to go to Lenox Square–just as I had in college–and look idly at every single purse in Macy’s. To stand there and  feel their leather, to peer inside, looking for those with quality liners–because a cheerful purse lining is one of life’s unnoticed and unmentioned little pleasures. I wanted to eat a pretzel and people watch. To distract myself with the whorls of people and the chortling children.

I was still deciding–home or the mall?–as Lynn walked me to my car. “Go home and go to the Y–walking at the Y will be better for you than looking at purses,” she said, patting the roof of the car.

And I obeyed.


I tell Greg that I wish I knew how many times I have ridden home from Atlanta, taken I-75 to US-82. I want a count because I love that drive–a few times, I have even taken it as a 500-mile day trip, running up to visit museums. For me, those miles are full of good memories with family and friends–now, almost a half a century’s worth. There are places between Cordele and Tifton where there is big sky. There are cows on low hills. There is my favorite pond near Alapaha–at sunset, with the wading birds and cypress trees, there’s almost nowhere prettier.

Sometimes I just pull over and let myself look.


That Sunday, traffic was light. As I sang along with Jason Aldean on Pandora and drank my Dr. Pepper, I suddenly thought, “I am driving 70 MPH toward a place that I do not want to go.

But the reprieve, I knew, was over.


I teach school–I spend seven hours a day with teens who have not yet found their paths. They are still young enough to say things like, “I will never have a boss,” to think that eight dollars an hour is a lot of money, to believe that a fast car will bring them happiness.

But adulthood–especially when combined with tragedy, as most adulthoods are–will blow those illusions away. Even those we need,  the things we want to believe.

That’s amazing, isn’t it? We adults routinely do things we do not want to do, things that are so difficult. We go back to school at night; we relocate to help sick parents; we put our own dreams on hold for others; we face horrors–from bankruptcies to the deaths of children, things that are so terrible that we cannot even put them into words. 

We face things that we know are going to break and destroy us–but we keep our faces forward and we keep walking.

That is what it’s so insane to me about the Christian faith: we can continue to walk.

There’s no need to run away when we know that God is with us–when we have been assured that He is in the bottom of the ocean, on the rocky cliffs, in the low valleys–when we know to the very core of our souls that we are never alone, well, then we can walk.

(Note: I hate that some in the modern church make it seem like there is an epiphany-level of Christianity where everyone automatically feels perfect/better. Because I have never felt whole or complete, like my “God-shaped hole” (the one that the song says is “in all of us”) has been entirely filled. And the fact that I didn’t feel like holding my head high and shoulders back used to bother me–but I now see God also values the walking itself.)


There was so much blue sky that day. I love a blue sky, white cloud day, and on that drive home, I felt fed by it. Like God was saying, “Remember, I do this,” like He was painting pictures for me to remember on the long days in the hospital, letting me store up comfort for the walk I didn’t want to take.

There is, after all, nothing in us that wants to spend days 39-45 in a hospital. Greg doesn’t want to have his sternum “sawed in half” now–or again in twelve years. We don’t want to miss work. We don’t want the bills or the stress or the sorrow or the pain.

But in three days, we will be in our third hospital. The surgery will go better than expected. In ICU, he will do so well that the doctors and nurses will marvel, as they always do.  We will watch Fox News and I will make sure the nurses wash their hands and give him good pain medication and the CNAs bring him ice, and I will ask the custodians about their grandchildren and the cafeteria workers about their kids and thank the orderlies when they bring me blankets. 

When I am sad, when it is all just too much, I will go to the lobby where the exultant new mothers sit in wheelchairs cradling their sweet babies, waiting to go home. I will watch their husbands strap the tiny babies’ carseats in, then turn and carefully help their wives into the cars.

Again and again, I will watch as new families leave the hospital, and I will be so happy–because my God in his mercy allows that, too.

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The Gleam of the Now

10575320_1675980529318413_6993199641154948756_oToday, I awoke to a Facebook post. It said simply, “It’s a nice day for a white wedding,” and my heart just broke. The bride, Shelby, is young, beautiful, tough–and motherless.

Like most of the children of the Seattle bone marrow transplant patients, her life has been full of continued medical crises, financial hardship, and forced independence. The kids who ran amok in Seattle Cancer Care Alliance’s Pete Gross House in 2001 are between 16 and 24 now; most are partially orphaned, and all are fairly unjaded stoics. They left fairy tales and hopes of happy endings behind before they were out of toddlerhood. They spent hours in hospital waiting rooms, eating stale Cheetos and sipping warm Sprite while their pincushion parents, dragging bags of TPN, stared at Lake Union and mustered half-hearted hopes for better days.

For cancer patients who are also parents of young children, the goal most often mentioned is their child’s wedding day. The walk down the aisle is the holy grail, especially if they have daughters, as we do. Nurses say things like, “You are going to walk your daughter down the aisle. You’ll see” because when you are living from one misery-filled moment to the next, you can’t even see a day when food will taste right again. A happy wedding day fifteen years hence is an almost impotent goal when your crystal ball currently contains only the day’s methotrexate.  So it is the nurses who speak of future years, while the patients content themselves to survive the days.

And now, 906 miles away, Tammy’s daughter is getting married. The day the nurses conjured is now concrete: March 11, 2016–and her dad, who was on the bone marrow transplant ward with my husband, is (as predicted) fine. But his caregiver, his wife–the one who fundraised and moved the family cross country, and entertained us all from the instant she got there–succumbed herself. To cancer.

Words like ironic and cruel and phrases like twist of fate don’t do justice to such heartache, to fifteen years spent watching first one parent, then another, fight for their lives. Yes, these children gain strength and fortitude, that’s true–but they also are always waiting for the other shoe to drop. For the PET scan to find a nodule, for the biopsy to be positive, for the graft versus host to flare. They walk the cancer tightrope right behind their wary parents–and when a parent passes away, they walk again, alone. Inching forward, toes curled, lips pursed, chins set, continuing their journey.

Fortunately, children learn a lot while curled up in a hospital bed beside a sick parent. The power of a smile. The fun in a quiet game of cards. The pleasure of a Veggie Tales video shown for the fiftieth time. They learn to lie still and hold Daddy’s hand and look at the trees in the arboretum. They learn to hold the Now and move forward some. They learn that time is both slow and fast: they live through both the longest and shortest of days.

I don’t know much about Shelby’s wedding–who wore what, who toasted whom, what hors d’oeuvres were served–but I do know this: the sparkle in her eyes testifies to the happiness in her heart and the joy of the day. Surely it was bittersweet. There has been so much lost. But in her eyes, I can see the gleam of the Now, and it is beautiful.

More than most, Shelby knows that things scar and fade, batter and become. She’s seen much, but her eyes in the photo dance.

Her mother would be so proud.

 

 

 

 

 

 

 

On the Waving of the Checkered Flag

“We were laughing and living, drinking and wishing, /And thinking as that checkered flag was waving, Sure would like to stay in Talladega.” –Eric Church, Talladega

It was a late summer evening, and although it was technically too hot to, I had cooked. My younger daughter, Abby, liked the anchor of a family meal, and my older daughter April’s boyfriend liked my cooking. Long dinners were our Thing for those last several weeks before September made us into the school-year flotsam and jetsam that we so often became.
Our family dinners were a marvel to me. My alcoholic, bipolar mother had seldom cooked. Food–whether it was greasy, lukewarm roast beef or the more standard Burger King Whopper Jr.—was swallowed quickly and our back-to-bedroom escapes were made. Dad, who dubbed himself “Fate’s Whipping Boy,” ate late and alone at the Formica-topped bar in the kitchen. Whichever child chose to emerge and join him would be treated to sardonic stories of his gray day as they swiveled on the sticky faux-leather bar stools. There was nothing warm and Ingalls-y about our mealtime; no passed potatoes, no humorous stories, and very little daily minutiae was shared with nodding and clucking adults.
I exulted in the fact that my daughters expected family dinners. Our table was the first piece of furniture we bought as newlyweds; the chairs were given one by one as Christmas gifts by relatives. The twenty-four year-old chairs, saggy, scuffed, and stained, were no longer prizes; the tabletop, faded and worn from the thousands of meals we’d enjoyed, was no longer fit for the Haverty’s showroom. My now-adult brothers, on separate occasions, each reverently stroked the tabletop and said, “You can almost see the stories that were told here,” in recognition of my treasure.
On Sunday nights, I’d holler, “Who wants what next week?” and each girl knew she could count on one favorite food—Chicken Parmesan, gluten-free pizza, chocolate-chip pancakes—at the end of each weekday. April’s boyfriend, who was hundreds of miles from his mother’s home cooking, occasionally joined in, politely requesting fried okra or red velvet cake. He would smuggle the leftover slices home past his thieving roommates, who especially favored the walnut cream cheese frosting.
The days that ended at the table were days that were bookended by laughter and long talks. We would talk about Marxism, basketball, and Eric Church—one night, as if to show just how weird their mother was, April and Abby allowed me to explain why “Talladega” was the best song ever written, discussing it line by line. Everyone laughed at my sentimental tears over “the summer before the real world started.”

The girls would tell stories of broken arms and field trips, of Camp Winshape and hikes and horseback rides. I’d clear the table as they prattled on, Abby enjoying her traditional York Peppermint Patties and milk while Greg snuck a little ice cream.
So it was this customary evening. We had eaten well and laughed hard, remembering how when we’d asked young April her dolls’ names, she would cackle, “Rubbish and Trash.” We’d recounted her cross-country airplane trip alone at age six where she’d poured Sprite–quite deliberately—down the pants of her middle-aged seatmate, a woman who’d called her a chicken. Dinner was endless, and as we sat there afterwards, I heard a clear voice within me say, “You will never have this again.

I froze. I knew the voice.

In 2001, when I’d heard Greg was in the hospital after a routine doctor’s appointment revealed iffy blood test results, as I desperately said, “Not leukemia” to myself over and over, I heard the voice say, “It is leukemia, but I will perform a miracle of peace.” And these words proved true.
To hear that voice so clearly fourteen years later, clearly and certainly bringing sad news from nowhere –I can’t emphasize enough the nowhere—shook me. I looked at each of the four of them, chortling at the latest story; I took in the dishes and the lighting and the way their smiles shone. They were all so happy. There was joy in the room, hilarity even. It had been a good meal, a great time, and, evidently, the last one, ever.

As I sat there, forty-five, haggard, prematurely gray, having endured much, I can clearly recall a desperate grasping within me, an urge to fight, to say no. I wanted to resist whatever torture was ahead, and I wanted to begin immediately. Post haste. To stand and fight and claim good things–for surely, having lost so much, we deserve to enjoy good suppers. How could that be too much to ask? For a minute, I was like my former students, who now as young new mothers, are trying to perfectly order their children’s and families’ worlds. I felt myself reverting to a time when I naively thought that I could change and save things.
But I was only there a moment.
I acknowledged the voice. I told it, “Well, then, I’m going to enjoy tonight.” I refilled their glasses, grabbed dessert, and we sat long and laughed much. So much. I watched their faces, held their hands, marveled at the blessings they were.

It was a truly beautiful night: we were so rich.

There is no explaining how quickly everything has changed. A break up, an unplanned rebound pregnancy; one move, then another. We were five, and we are now three. And supper at the table is more than this remnant can bear. My husband dines on Frosted Flakes in our bedroom, seeking his solace in Barney, Andy, and Aunt Bea; my younger daughter nibbles frozen chicken nuggets while copying AP biology notes; I eat the pork loin that I made, but no one wanted, as I play online Scrabble with Charles, a stranger in Maryland. My elder daughter is living in a maternity home two hours away; her ex-boyfriend is reduced to terse texts about items I need to mail back to him. There is nothing left of the Ingalls family here.

In the kitchen cabinet, there remain several small bottles of red food coloring. I used to buy Kroger’s entire stock since in a small town, hoarding can sometimes become a necessity. I doubt, however, that I will make red velvet cakes again. They belong in a time that has left me, with people who have as well.
I only had an hour to say my farewell—an hour after dinner in which I was allowed to look, alone, at all that God had given me, to hold it close, to see its beauty, and to bid it goodbye. At the time, I didn’t know whether we would face a car wreck, a third cancer, or an unexpected death. I knew only that the pain was coming.
I thank God that He allowed me one last look at all that joy. For what joy it was.

(What Joy!
It Was.)

Present Enough

Last night, after a hectic weekend decorating for and overseeing Homecoming, Greg and I came home late from the school’s Christmas party and collapsed on the sofa. He was reading, and I was just staring at the Christmas tree, which is fake and spins—something I find splendid. Greg was insistent, “Please read and settle down,” and I said, “I am settling down. I just want to sit here and think about how happy I have been this week and a half in our marriage.” He said, “Week and a half? We have been married five hundred and twenty [pause for mental math] . . . almost a thousand weeks, not a week and a half.” To which I replied, “Yes, and I have been very happy this week and a half.” He looked at me like I was insane, and then, he thought about it. He said, “Let’s see: no miscarriages, no terminal illnesses, no family members dying recently, no denial of our constitutional rights [ala the fostering fiasco], no forced moves. Yep, it’s been a good week and a half.”

And I was wondering what it is about me that can revel in a good week and a half of marriage, celebrating it for the treasure it is; unfortunately, I think it may also be the same thing that can cause me to go into a death spiral during the bad weeks and a half, and that is the revelation that this is, like it or not, as good as it gets. It is what it is. Type your own cliché here, if need be, because there are plenty; my Grandma’s favorite was borrowed from her cook, Ellen: “That’s all in it.” Grandma would laughingly tell me so when I complained about sleepless nights or told horror stories of Toddlers Gone Wild in Cracker Barrel. And she was right—it’s all there, the good and the bad, the happy and horrific.

During our 18 years, I have memories of things that I would rather erase; some are specific: the tear-filled mornings getting ready for work in the time after April was returned to her birth family, lost to us, we thought, forever; the two babies we lost who would be teenagers now, and who are on some days obviously, painfully missing; the bone marrow biopsy in medically-primitive Georgia, a horror Greg doesn’t like to recall even now; our unplanned return to Waycross; the failed adoption of a baby girl whom we brought home from the hospital at birth, then lost to last minute legal wrangling. Others are more typical—the humdrum minutiae of everyday marriages: failed attempts to ask politely for everyone to push your chair in, how hard can it be?; the daily taking for granted of one another—he will be there for me, I know, so I do not thank him when he is. This is “in it” as Grandma would say: we all fall short; we will all have things that we regret doing, saying, or going through.

But there are other times that we will never regret sharing, times that no one but we will ever understand: when April came back (forever!) from her relatives New York, and she ran through the house, shrieking her glee; when our returning plane touched down from Seattle, Washington, and we were home again; when Abby was and is here and healthy and well; and, finally, when we read the New Yorker cartoon about the chickens with self-respect and laughed forever. We know, having lost much, what we have. Appreciation of the minutiae: these times of bored predictability—of Saturday routines involving cleaning garages rather than sitting in hospitals—that’s “in it” as well.

And so, I think, the insanity of being grateful for ten good days of marriage in a row is, all things considered, a positive: it says that I know these days for what they are—part of the ebb and the flow, the bitter and the sweet. A bad week does not a marriage ruin, nor a good week a marriage make—but having someone with you who, having endured the horrific, will now sit with you and enjoy the happy–even in the face of horrors to come–and just watch that Christmas tree spin—well, sometimes, that may just be present enough.