Category Archives: Hospitals

The Grand Mistake; The Minor Miracle (Cancer Number Four: Really???)

IMG_20191111_094530Last Saturday, I went to the mall, and as I was leaving, I bumped into a former student and her mother. They are the kindest of people, and I was wild-eyed and sad–it was just sixteen days from my father’s death by suicide and thirty-six hours before my husband’s second heart surgery in eight weeks. It was just too much, and they could tell.

“How can we help you?” the mother asked; I mumbled that I didn’t know, that there was vague talk of a fundraiser and that we had a Boston butt–I’d just eaten some for breakfast, in fact.

“We do food,” the mom said. “I’ll bring you a frozen crockpot meal later–that way, you can just pop it in whenever you want.”

I can’t even be sure I was appropriately grateful–tired and overwhelmed, I was mainly just glad to live in a town where people will feed you if you don’t even know their first names.


On Monday, Greg had his surgery/procedure–we had been told it had a 50/50 chance of working, so when I saw the cocky strut of the surgeon’s assistant, I was relieved. It took two plugs, but his heart was not going to be a problem anymore.

They moved him to a room overlooking the water, and we prepared to settle in for a quick overnight stay. I was hoping for an overdue lunch and a catnap–I had only slept two hours the night before and, worried, been unable to eat much that morning.

But then the nurse said, “And you have had ————recently?”

We were confused–and then she added something like, “For the ———- cancer?”

Met by silence and sputtering, she showed me the record. She pointed to his name and birthdate, she pointed to the name of the cancer–he had cancer in a vital organ. It had not metastasized–I remember being grateful for that. My brain jackhammered simultaneous thoughts, over and over saying, above all the others:

Cancer #4 has been here for weeks? And we hadn’t been told at all?

We have wasted so much time.

Cancer #4 is here.

Shaking, I immediately called his oral oncologist and left a message–I thought that the OSCC would have gone to his brain, not traveled south–that was my only stopping point, the only hinge holding me: I’d never read that it could go where it evidently was. I called the hospital’s patient advocate, got no answer; texted my cousin, a malpractice attorney, and even called the hospital’s attorneys–because someone needed to get in Greg’s room and answer questions.

Because it was there in print. He had cancer.

We asked for the charge nurse, and a cluster of people gathered–all appropriately concerned. My lawyer cousin called, and he made me laugh in the way that cousins do, offering colorful language and good advice, suggesting an X-ray.

Greg, still required to be immobile, lay on his bed. “I had an X-ray in October,” he said, “Can you look at that X-ray, too?”

They did. And, in it, his vital organs were intact.

There was still so much confusion–but there was enough relief that as the X-ray tech arrived, I said, “I’m going to dash down and get something to eat.”


I stepped off the elevator, my mind flying–we still had ninety minutes in the business day–a lot of time to pursue answers. Greg had told the nurses that he would have answers before he left the hospital Tuesday–we were not waiting until Wednesday and then driving back to talk to so-and-so–we were not going to be patient or polite. Cancer #4 left no time for that. I was strategizing–who would best help us? Who could sort this out?

Then, halfway to the cafeteria, I spied them–in resplendent businesswear, tags bearing credentials I liked: there was The Powerful Person (TPP), involved in conversation.

And it wasn’t rest that hit me, but there was an immediate sense that now, the puzzle would be sorted.

I took a second to calm myself, tried to remember my cotillion skills, stuck out my hand, introduced myself and said, “I’m sorry to interrupt, but I can assure you that the most important thing going on in this hospital is happening in my husband’s room right now. Can you please come there with me?”

And The Powerful Person did.

On the elevator, I gave them the litany of medical tragedies, the testimonies of Greg’s stoicism, the story of my father’s death–and I said, “We have to know if this is cancer #4.”


TPP stopped at the nurse’s desk, then went in and met Greg.

Even now, I just remember how much better I felt: there was an authority present, someone who could help. TPP said the right things, shook Greg’s hand, distributed business cards. Cared–and took control.

So, I left to go eat.


The end of the story is simply this: he didn’t have cancer. A machine or a human had erred. (We still aren’t clear which.)

As people do, our friends and family tried to figure out the why behind this happening: what were we supposed to learn? Was it so we could pray for the person who did have cancer? Why allow us to be shaken so?

I know, of course, that there does not have to be a reason, that things sometimes just happen. That this will one day be just a bad memory, a cosmic joke.

Then, I will testify that in a short 55 days in the fall of 2019, Greg had open heart surgery and complications; he had a second, chancy procedure; my father died by suicide–and, to top it all off, we were told that cancer number four had said hello.

I will remember how awful that felt–that the fear and the powerlessness were overwhelming.

And I will also remember how it felt to hand things over–to let go, to walk away, to say to someone else, “You fix it,” and feel absolutely certain they would.


Tuesday, as we left the hospital–after adding more business cards to our collection–I got a text. It was the mother, checking in–she would being dinner the next day,


I stayed home from work on Wednesday. I was still too shaken and exhausted by ourScreenshot_20191117-205144 near-miss,  and Greg was back on restrictions–couldn’t lift, couldn’t drive. I lay in bed until 11:00 AM then forced myself to do chores. Our normally tidy house was no longer so–I couldn’t do it all: work, grade, tutor, exercise, cook, and clean. I vacuumed, noting that somehow the antique marble coffee table was in the middle of the rug. I washed sheets and the duvet cover, going outside midway through the drying cycle to ensure that the duvet was not eating the sheets, not wanting to deal with that.

I tried hard–to rest and to clean. To keep a balance. I needed balance.

So, later, when I opened the dryer to find that the denim duvet had, in fact, eaten the sheets, I just brought the ball of linens in and set it on the kitchen table. I tried to unknot it, but I was getting nowhere. Greg came over to offer suggestions since he could not help pull. The knot only grew tighter–and, since all I wanted to do was crawl back into bed, and I had to have sheets to do that–I felt the frustrated tears threatening: this was all so stupid and unfair.

On top of everything else, I couldn’t even make my bed.

That instant, the doorbell rang.


The student’s parents stood on the stoop, bearing a frozen pork loin, some cranberries and green beans. Their car was running in the driveway. They smiled up at me, offering the food.

“I’m going to need you to come in here and move a table and help me with some sheets,” I said bluntly. (I hope, now, writing this, that I thanked them for the food, Please, Lord, let me have thanked them for the food.)

“A table??? Sheets???” they smiled gamely, confused. The husband went to shut off the car, and then we filed in the house, where, right after we made polite introductions, her husband helped me move the coffee table.

The sheets were still on the kitchen table. My voice quavered as I talked about them–I was still so upset–and then the wife said her husband was great with knots, and he was. Four grown adults stood there looking at sheets with such satisfaction.

As they left, I stood outside with them in the drizzle and tried to convey my thanks, the marvel of the timing–it overwhelmed me that the doorbell had rung just when it did. I ended up crying in her arms, as she murmured that it was all “too much, too much for anyone.”

I would have been embarrassed, had I not been so tired, had I not been so humbled at God’s grace and power.

He had shown me–in less than 48 hours–that he was in the Big–but he was also in the Small.

In that is my rest. In that is my strength.

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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.

 

 

 

 

 

 

 

 

 

 

 

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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Carrying Your Big Wet Dog (Thoughts on Cancer Survivorship)

 

 

June 2018

I am in a day-long staff development, never a good place for me. I have a hard time sitting still, being quiet, being professionally “appropriate.” I interject, grow restless, stand in the corner and stretch. I admire the way other teachers can sit and listen and contain their restless minds–how the elementary teachers listen patiently while the speaker discusses high school standards.

I can’t sit like that. I organize my Google drive, catch up on Poem-a-Day reading, and still hear every word. I try to self-regulate. I watch the clock, limiting my comments to one per half hour.

(Years ago, after attending a monthly series of regional staff meetings together, a teacher from another county stopped me as we were leaving. “You know,” she said, her hand on  my shoulder, “I have never in my life seen someone who looked like they weren’t paying attention at all who heard every word.“)

I do hear every word. I just can’t idly sit with my wandering mind. It might go to yesterday afternoon, when, in the back of a desk drawer, I found the inky footprint of my stillborn granddaughter. It might go to the recent death of my co-worker. The death of my best friend. The tests my husband Greg is about to have–since, fresh off of cancer #3, he couldn’t see the other day. My brain may scream, “HE COULDN’T FOCUS HIS EYES.”

I think it is better for everyone if I quietly read a poem 


During the meeting, I messaged a co-worker who was sitting in a waiting room in St. Jude’s Children’s Research Hospital where his young daughter, an ATRT survivor, was having her quarterly brain scans. He texted that she was in recovery. I replied, “I’m sorry. Every time. I’m so sorry.”

What I wanted to say, what suddenly sprang from my heart, was, “I’m so sorry you have to carry this wet dog around.”

I didn’t say that, of course. Too odd, even for me. Carrying a wet dog? 


September 2018

I’ve sat with that analogy all summer–long enough that he is today, again, at St. Jude’s awaiting his daughter’s scans. No one I’ve run it by gets it. They don’t understand when I look at them and say, “Surviving cancer is like carrying around a big wet dog.”

But . . . picture your dog lost in the woods. He has been there overnight, and you have been searching desperately, wandering down spider-webbed trails, your good shoes getting ruined by the muddy muck near the river. And, finally, there he is–you see him on the shore’s edge–he is soaked, the water running off his matted fur in rivulets. His paw is badly hurt, but you are so happy to see him that you don’t care. You elatedly scoop him up and begin to carry him home. He smells. He is sticky and panting and soaked. Your arms ache. The walk is long–through dry creek beds and briars; you dodge broken vines and stumble over tree roots. Your dog is whining–he’s tired and hungry and hurting–but you happily carry him. You whisper into the warmth of his ear: I will take you home, and all will be well.

You will rest together. He will be in his bed. You will be in yours.40862229_900181213506411_5640981768501723136_n


That’s the goal in Cancer Land. While well-meaning nurses may talk about survival in terms of children’s high school graduations and wedding days, the real goal is only this: everyone back in their proper place. Children in their beds, parents in theirs, under one roof.

When cancer causes you to miss that, even briefly, you realize that life’s treasure is simple: it is presence.

The ordered dinner table with every chair full–Dad, Mom, and offspring. Quiet chatter about boring days. Bickering about the last piece of chicken or who has to bathe first.

During a thirty-one day hospitalization, it’s all anyone craves: presence.


In understanding the treasure of presence, you truly comprehend the cost of loss.

The same hospital stay that teaches you to treasure a family dinner, a carpool ride, or a Monopoly game also allows you to survey the spectacle of death and sorrow. You are there when a grade-schooler gives a eulogy for his newly-dead father. When a groom diagnosed weeks after the wedding dies days before anniversary #1. When Val, who is young and beautiful and kind, dies anyway, and the nurses leave her name tag up by her empty room for days–until, when you can’t look at it anymore, you take it down.

(You still carry it in your wallet seventeen years later. You couldn’t throw it away in 2001. You are no closer to being able to now.)

If you are in the hospital long enough, you watch dozens of people die, sometimes two or three a day.

One weekend, five people die. Children die.

You still remember the wails.


319704_10151036722415980_65686374_nIt is a miracle that anyone escapes–that anyone walks away from their front row seats of sorrow and horror–and so much more of a miracle when it is you.

Miraculous to stand, to find some footing, to gather yourself and make your way past the travailing parents, their only daughter dead. To walk past the orphaned children, the people wailing, “All is lost!” To look at them, recognizing that, for them, all is truly, truly lost–yet you yourself are able to continue to walk.

To exit that place, to walk away from the helpless and leave them unhelped–it is, in some ways, the greatest sorrow of your life.

But you don’t care what it is you have to carry–how damaged or mangled or heavy your load–because you are walking flint-faced past scores of the barren and empty-armed.

Your arms are laden, and soon, you will rest.

 

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The Worst, Best Day

12992368_10209707986039601_374484923_nTuesday evening, the baby was not kicking. She had not kicked in about nine hours, and April was growing concerned. She tried a warm bath, a sugary drink, a cold drink, a Mountain Dew, walking, sitting still, lying down, and playing music. We called her obstetrician’s office in Savannah; the answering service attendant and I strongly disagreed over whether she needed to know precisely what medicine April took at age six. (“I cannot tell you that right now.”/”Let me just write down that you refused.”/”Please make sure you also write down that we are two hours away and the baby is not moving.”) My truculence was punished by my not getting to talk to the doctor, though the secretary did condescend to say, “He said you can go to the Waycross ER.”

The Waycross ER it was.

Like most ERs, our ER is sometimes a place where you have to consider pinching  your children to make sure they wail louder than the drug seekers. Last night, when we walked through the door, the lobby was calm, but they were training a sweet new intake clerk. If you are a waitress in training, spill a coke on me; I won’t say a word. A slow, new cashier? Count that money three times–I’ll wait. Kind and fumbly ER typist? No. I can’t.

I used my Teacher Voice to holler to a triage nurse: “How long’s it going to take to get this baby’s heartbeat seen about?” She asked if April was over twenty weeks, and then gave us the “Get Out of the Waiting Room Free” card: pregnant women over twenty weeks get to go straight to the third floor.

Three nurses greeted us quickly; it was a slow night. One patient had just given birth and was immediately moved to another wing: we then had the entire labor and delivery wing to ourselves. They set about trying to hear Stephanie Grace’s heartbeat using a fetal monitor; it seemed to be there, but faint. They weren’t sure, and wanted to do a sonogram–an expense we wanted to avoid if possible. But sitting there together on that hospital bed, not really knowing whether that was the baby’s heartbeat or an echo of April’s, we decided that one more scan might be best.

I have never seen a stiller sonogram.

I gripped April’s arm too tightly, willing the baby to wake. Once again, I was stunned by my inability to see anything baby about the sonogram. No heartbeat, no feet, no head, no arms. Just spine. It was March 16th all over again–but worse. I looked at the tech and the nurses, trying to sense weakness: who would tell us now? Did we really have to wait an hour and a half for a radiologist in Minnesota or Maine to download and read what looked instantly obvious? They formed a tight huddle, but as April went into the restroom, I pounced, hissing their names and making thumbs up and thumbs down motions with raised eyebrows. Demanding. Now.

I honor their professionalism. None cracked. But in my eighteen years teaching teens, I have learned to read split-second reactions. And although I wasn’t told, although no one’s face changed an iota, I knew.

April did, too. She swaddled herself in blankets and said, “I just don’t feel good about this. I don’t think I saw a heartbeat on the sonogram. Nothing moved.” We sat in silence, and time passed. The nurses and the tech once again entered in a huddle–they took turns speaking, so that no one person broke our hearts. There was no heartbeat.

At 46, my rage, I know is impotent. It will not pay the bills, fix the car, cure the cancer, or start my grandchild’s heart. It’s useless, really, to argue about what we are dealt--but I had continually prayed, hoped, and believed for Stephanie Grace to have a chance to enjoy a few hours on earth. To  ask April to gracefully bear this, too, seemed a most brutal injustice. 

April’s tears were hard and angry, but brief–because, as she points out, “I was given medicine.” As she dozed, I sat wondering about the unfolding day–we’d envisioned Stephanie Grace’s birthday as a summer day in a Savannah hospital with a top-notch neonatal unit. To be in small-town Waycross on a spring work day was unexpected. I knew the day would be long, but I hoped we would be able to proceed with what April wanted–very few visitors, a tight circle of love around sweet Stephanie Grace.

The first sign that the day held possibility: a message brightened my phone about 7:00 AM. “I’m working in the OB today if you need me. I love you.” A former student, Ursy, was checking in. Her firstborn also died from severe birth defects, and she and April had been planning to have lunch one day and discuss what April could expect. A room-brightener by nature, she cheered us greatly. She told us the story of her daughter’s birth; the girls discussed memorial tattoos–April wanted Stephanie Grace’s footprints and the green anencephaly ribbon. Ursy kept telling April, “Get lots of pictures. Lots and lots of pictures!”  

Pictures posed a problem: early that morning, we’d learned that the photographer we planned to use was unavailable on such short notice; others were similarly booked or not up to the task–and who could blame them, with so much unknown? It was anguishing–it was so important to us all that this day be preserved. We’d been comforted by others’ beautiful baby pictures, and April wanted her own. I kept Facebooking photographers, and finally texted another former student, “Help me find someone!” Within thirty minutes, a sweet-voiced stranger named Stacey was reassuring me, “I’m on my way,” and another piece of our day fell into place.

In all of our time enduring medical crises and hospitalizations, I have learned two things: the first is that the right person will ALWAYS show up. I was mildly curious who the day’s right person would be. For us, the Right Person is never a best friend or a favorite relative because second truth is simply emotional distance is ideal in a hospital visitor during the first throes of crisis. (Alternately: helpful acquaintances can be better than friends, who are often better than family.) This second truth seems cold, but it’s a truth we have lived. It is easy to lose yourself to sorrow when a much-loved aunt shows up, especially if her emotions are also running high. A casual friend or coworker can be a more appropriate support; they recognize your sadness,but their presence encourages equilibrium, something a 40-hour stretch without sleep can require.

At 9:35, a Facebook message came through: “I’m wrapping up things here at the church so I can be free for you the rest of the day.” And, just like that, I knew who the Lord had planned to be the day’s right person: Beth, the mother of four of my former students. I’d seen her at a restaurant a few weeks before and told her the news; she invited April to lunch and took her shopping for the baby. And she planned to attend Stephanie Grace’s sad, sweet birthday.

April dozed as the baby’s father slept in a recliner, having come straight from the night-shift. I quietly sent texts to family members, including Abby, who reported that Greg was still asleep after his midnight run to check on us in the ER. I advised her to wake him and arrive by 11:00.

By 11:17, we’d assembled–a small, slightly frightened crew. The nurses had cautioned that the baby, having died, may be discolored or disfigured; they explained privately to me that, for babies like Stephanie Grace, if the baby’s defect was thought too gruesome for the mother to see, the nurses would whisk the child out of the room and “attempt to make the baby presentable, or wrap her so that the mother can at least see the hands and feet.” We all were silently afraid of what we might see, of what the next hours held.

Abby, Beth, and Stacey waited together down the hall as April slept. We’d been told that the mothers of stillborn, preterm babies often slept, then woke abruptly and–whoosh!–gave birth before the nurse call button could even be pushed. As April slept, my prayers were frantic. My mind was frantic. I could not deliver my granddaughter, could not disentangle her from the sheets. Surely that would not be required of me.

(Author’s note: Brown text below may be difficult to read, but no harder than it was for us to live.)

And then it was time. April awoke, and the just-in-time doctor delivered sweet Stephanie Grace at 12:13–and I was overtaken.  Ninety seconds before, I doubted my ability to look at my granddaughter,  but I was now thunderstruck, mesmerized. The nurses were hastening her from the room, and I whipped behind them, literally, completely unable to take my eyes from this perfectly imperfect, tiny child.

“Don’t you want to stay and encourage April?” a sweet nurse suggested, for the defect was horrific. “No, I’m not leaving her side,” I replied, my eyes still fixed on her. Two truths: It was so awful. And she was so beautiful. They took Stephanie Grace to a nearby room and laid her on an empty hospital bed. As she lay on the blue plastic chuck, her perfect mouth open and her tiny hands clasped, I saw what will be the horror of my life–a secret the sonogram had not revealed: the baby was missing her right leg below the knee. My brain screamed and screamed and screamed at God: ALL April had come to want was a footprint tattoo, and she couldn’t even have THAT??? Two feet was too much to ask for? We were to be denied even that???

And then, that quickly, the rage was gone–I knew we would have loved her, leg or no leg. We would have played soccer, gone to therapy, visited specialists–the rage was gone and the wishing returned. I so desperately wanted a well, one-legged soccer player romping through our house. I wanted the hassle of driving to the best pediatric orthopedists.

My breath was gone; I was full of wanting. I was only all the wanting in the world. 

I started taking pictures of the baby, ungroomed, imperfect, untouched. I turned my camera into a sanctuary forever–full of true, if gruesome beauty. She had one leg, a clubbed hand, a deformed arm, and no skull–but also long fingers, a sweet face, a tiny nose, and decidedly un-toadlike eyes (how wrong the doctor had been!)–all of her, unswaddled. Pristine.

Greg came in search of me, and after begging him not to leave the baby for a second, I went to April. She was proud–radiant with pride. I went to get the photographer and Abby–who went immediately to the baby, and then to tell her sister of Stephanie Grace’s beauty. To soothe her as only a sibling can, to say, you will be able to hold and love this baby because she so very far from frightening.

April stuck her hand out, silently demanding my iPhone. She saw the baby’s hands and relaxed some. The baby’s face, her small nose. April relaxed futher, and a flick of her wrist got her more quickly to the other pictures. She brought the iPhone to her face, peering and scrutinizing. I could almost hear her saying to herself, “That’s not too bad.”

And suddenly, holding her baby became possible for her.

The nurses dressed Stephanie Grace in a tiny gown and covered her head in two caps; they wrapped her in a pink lace-trimmed blanket hand-sewn by an 83 year-old woman touched by April’s story. Stephanie Grace, snug and beautiful, was taken down the hall to her mother’s arms.

The only word: transformation. The truth of that word, of every word here–all of the Unknown that had stalked and savaged us for weeks was gone. Removed. East and West became real–the Unknown was so far away and so absurd. The room was reverent–this sounds like hyperbole and romance and overkill, but oh, I assure you, it is so true–the room was far and away and time was frozen and sound was still and there was just that baby, that sweet baby, and all of these people who loved her. 

It was so awful, so beautiful. So terrible, so holy. 

She was our shared treasure, everyone holding her and studying her, marveling at her pin-prick fingernails, and April adoring her tiny ears. Her petite mouth was a mirror of April’s. We held her hands, kissed her forehead. There was no chatter or cooing–looking back, there is so much silence, but there was no need for words. The cries of you’re here and I’m delighted and you’re here, and I’m so sorry, though unspoken, filled the room.

We took so many pictures. The compulsion: capture every instant. Store it up. True treasure. Truth and treasure. The room was filled with these two things. There was no posing, no checking for a camera, no glancing or glimpsing.I did not look at April, Abby, or Greg–I did not worry about any of them. There was no concern for anyone or anything–our time in that room was the most singular time in our lives. We were all alone, so alone with that sweet baby. Her nineteen ounces filled all space.

We held Stephanie Grace throughout the afternoon. At 3:00, the nurses suggested making a pallet for the baby on the sofa, so April could see her from her bed. I told Stephanie good-bye, once, then twice, and, in order to live, I have to know she heard my apologies as well. They are legion.

***************

There is so much that we do that is wrong and ill. We make decisions and say words that are foolish and hateful. We destroy ourselves with anger and rage and all sorts of envy. We self-destruct and immolate and blaze and blaze and blaze. There is so much wrong. There is so much wrong in all of us.

But I have seen the right, and I have seen the perfect. I have glimpsed the glory, and I will tell the tale.

***************

As she went to sleep empty-armed and aching in her hospital bed last night, April said to me through the darkness, “I know this sounds crazy, but I’d do it all again.”

As would we all.

 

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Angustia/La Cara de Sapo

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A list of things I have survived: hydrocephalus at birth; pneumonia at age six; a childhood marathon of parental alcoholism, prescription drug-addiction, and manic depression; my parents’ divorce; Bullying (note the capital B); the usual heart-breaking string of high school and college love triangles and unrequited/worthwhile loves; two miscarriages; a disrupted adoption; a second, wrenching failed adoption in which relatives showed up at the last moment to whisk the baby away; caring for 93 foster children, including—simultaneously–five under the age of two and a blind, brain-damaged, wheel-chair bound, Daddy-shaken toddler; my husband’s leukemia diagnosis; a cross-country move with two children for Greg’s subsequent bone marrow transplant; bearing witness to the deaths of 21 people–among them children and dear friends–in the Seattle hospital; a DFCS investigation; the death of my best friend from breast cancer; deaths of loved ones; parenting a special needs, autistic daughter;  parenting a profoundly gifted daughter, who insists I include her mental breakdown, incurred after 72 hours with no sleep, because she DID have one; navigating the community resistance to one daughter’s interracial dating relationship; a compound fracture of my leg followed by six bed-bound months of convalescence—a time during which my husband was diagnosed with his second cancer, caused by the treatment of the first; a cross-country flight with a broken leg—and the required groping by the TSA; and, finally, the financial ruin that is the most certain and faithful of companions to cancer. 

      A list of things I may not survive: my elder daughter’s unplanned pregnancy.

 

I wrote those words exactly two months ago, on my elder daughter’s first day in a maternity home two hours away. I was a rank amateur in Dark Days, but I didn’t know that then.

 

Today, I felt my grandchild’s kick for the first time–thrilling, lovely, and sweet.

Yesterday, we were told that this child would live only a few moments, perhaps hours.

 

In late February at our last visit, April said I could accompany her to her anatomy sonogram, when she hoped to find out the baby’s gender. At her initial sonogram, early in the pregnancy, I had gone with her–but, when they called her name in the waiting room, I found that my legs wouldn’t work. With two miscarried babies, I couldn’t bear the pain of hearing, “There is no heartbeat,” spoken to my daughter.

A second sonogram in the second trimester–the gender reveal!–was a joyous lure, a chance to begin to repair some of the rifts and rends initially caused by the surprise pregnancy. The maternity home authorized my presence, and when I arrived, several staffers remarked that my accompaniment of April was “really unusual” and “not something we usually do.” They even allowed me to drive her, since the regular driver was ill.

The drive to the hospital was short; the wait in the sonographer’s lobby was, too. A pretty brunette in yoga gear made small talk with us, drinking from her “It’s a Girl” water bottle that the office was known for distributing. She’d found out her baby’s gender the week before.  As we were called back, I thought to myself, “It can’t be good that she’s back so soon. Poor thing.

The small sonography room was well-lit, with  a large computer screen on the wall opposite the exam table and chairs. Everything about the scan was quick and high def, but I couldn’t see anything that looked familiar or right. There were lots and lots of bones. I commented that I couldn’t see anything but the spine, and the lady replied, “Bones show up brighter.” She was busy and silent. I was clueless. I searched for curves that I knew, and, finding none, watched idly as the words “stomach” and “femur” were typed upon the screen.

Sonographers, of course, are poker-faced, trained to tell patients nothing. But, finally, she said, “April, your amniotic fluid is really low,” and printed a stream of photos, heading for the nearest doctor. Ignoring the multitude of “no cell phones allowed” signs, I began googling. Oligohydramnios. No kidneys?

I was still reading when the contingent arrived with their brusque introductions. The sweet, petite doctor said, “April, I’m not sure it’s anencephaly, but the cranium isn’t completely closed over the brain.” She explained that the neonatologist downstairs had cleared a spot and would see us immediately.

Anyone with the life experiences we have had knows that when you become the building’s instant VIP, your world is about to crumble. We were whisked out a back door and somehow got downstairs, though I still couldn’t tell you if an elevator or stairs were involved.

In the waiting room, April called the maternity home on my cell phone, requesting reinforcements. I forged her signatures on multiple mercifully short forms as she wept in a plush chair. Other people averted their gazes, and we were whisked once again to the back. Away.

April climbed up on the table. The new sonographer was efficient and kind. The screen was larger, and a brutal fact became clearer: what I was seeing that looked so unfamiliar was, in all likelihood, the baby’s face. The cranium trailing behind it was distended.

The femur was measured again. (The baby has beautiful femurs.)

The doctor came in. Earlier, when our day was normal, we had unknowingly ridden alone with him on the elevator, where I’d closed the door instead of holding it for some children approaching in the distance. I’d jokingly said, “We don’t need any screaming children in this elevator. We are praying this baby isn’t a crier. We have a small house.”

Now, this stranger, with his legion of mute sidekicks, was delivering sad news. He matter-of-factly destroyed our hopes.

The first word in his arsenal was “lethal.” We didn’t wither or crack.

“Anencephaly.”

“You can see there is no forehead.”

“The uterus likely created a band restricting the head.”

“Unsurvivable.”

“Perhaps a genetic defect.”

We still were largely unfazed. April was weeping, but there were no histrionics. At some point, the maternity home’s representative appeared, coming in so unobtrusively that even the doctor was a bit rattled. She was just there. Stolid and loving. I continued peppering the doctor with questions, which were reasonably intelligent because of my exposure, via Facebook, to Layla Sky and Shane.

I guess my manner is led this doctor, who had been receiving simultaneous A+’s in Bedside Manner and The Delivering of Devastating News, to look me in the eye and ask, “Do you see the toad face?”

I nodded. In fact, I did see the large eyes. I also saw my grandchild. And my daughter’s breaking heart.

 

I have, in my younger daughter’s baby book, a medical report that noted we “refuse[d] to consider termination.” My older daughter was so swift and firm in her refusal that I imagine the medical stenographer may have typed the words in boldface for her.

 

We returned to the maternity home, where April was hugged and patted and prayed for by her surrogate family. The other pregnant girls were quiet, weeping and reassuring. The staffers discreetly packed and loaded our van. They said right things, and we headed home, where my husband and younger daughter waited. They, too, had blindly expected only the gender–a fact that the baby had refused to share with any doctor. A surprise we still await.

 

April has eighteen weeks or so to go, if she makes it to her due date. Despite the fact that the baby could die at any time, she was singing as she did her chores today, singing just as she always has.

And all the while, the baby, whose cry we may never hear, kicked along inside her.

 

 

 

 

 

 

 

 

 

 

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.

 

 

 

 

 

 

 

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.

“I Was Hers First”

I know adoptive parents with sweet adoption stories—they made cute scrapbooks and were matched with young pregnant couples; at the hospitals to cut the umbilical cords, they were also able to name their babies after family members; their babies bonded with them instantly, and the adoptions took only six weeks; their children look just like them, and everything about their adoptive families has been Parents magazine centerfold quality.

Our adoption, on the other hand, was a haphazard affair—as young twenty-somethings, we checked the box that said “foster to adopt,” as a sort of plan B in case we really liked a kid one day and wanted to be first in line. I can still recall saying innocently to Greg, “What if it turns out we can’t have kids? Wouldn’t that be funny—to have already marked “adopt”?” And then April came to us at a year and a week—her elderly foster mom was having back surgery and wouldn’t be able to lift the stocky toddler for six weeks. We were to be a sort of respite, a pit stop on her way home to New York. Six long months later, she did head there—and Baby Jessica played out in my own driveway, my 18 month-old screaming, “Mommy,” kicking as we buckled her in. We cried for months and sought solace in speaking to her birth relatives on the phone as she hollered, “Me talk!” in the background. Finally, they decided to return her to us. On one of the happiest days of our lives, April tore from the car that brought her home from NY to GA and ran through our door, shrieking her elation. Three long years later, after trials and appeals that seemed never-ending, April was ours. It was over.

But it’s never really over with an adoption. There are days that overcome you—emotions too great, things too unfair, places you know both moms and both dads should be. They include prom, graduation, and, for me at least, emergency rooms.

April’s birthmother, Susan, is never more with me than she is on a drive to the emergency room; in 2010, during April’s appendectomy, Susan’s spirit was beside me in the car, bellowing, “Drive faster!” Again, last night, when I took April’s pulse in the living room—178!—Susan was instantly there with me, a hollering apparition telling me not to mess this up. Her kid was depending on me. On the drive to the hospital, as I questioned and re-questioned April—“Can you breathe? Is your headache better? Is your vision blurred?”—Susan was right there, riding shotgun, telling me to drive quickly, but safely. And in the ER, as I reminded the staff, “She’s got great insurance, run any test you need,” insisting, “Do not release us until you know she is well—we are in no rush,” Susan was there, too. She was depending on me to do and say all the right things for our daughter.

For an adoptive parent, when an ER nurse looks at you like you are just another over-reacting mom, it is hard not to yell things like, “You will never understand who this girl is, what she cost, and what she means.” So you try to rein it in, act normally, even though you are terrified that you will have to call the other woman who loves your child as much as you do and tell her, “Um, I botched this.”

There is so much to botch. So much already botched.

If you know me, you know I have failed my daughter in a thousand different ways, and that the generic absolution “All moms fall short” doesn’t soothe me, doesn’t rectify all of my shortcomings. We adoptive moms carry around ever-present measuring sticks, and we become experts at flogging ourselves with them.

But, thankfully, last night, I measured up. In the car on the way home, we pulled into Krystal’s, and I asked April how I did. “Oh, you were good, Mom—I’d give you a 9 at least. You didn’t yell or anything.”

We got home at 1:15 AM, and I watched her eat, then text all her concerned friends, assuring them she was feeling much better. I followed her to her bedroom, checked, then double-checked to make sure she was okay and needed nothing—“How many times do I have to tell you I’m fine now?” was her final grumble of the night, followed by a murmured, “Love.”

Susan, of course, was gone by then—she’d left in the parking lot, the moment that April said, “Can we go to Krystal’s? I’m starved!” She trusts me with the day-to-day. But, on the important days, she is there—front and center, her New York accent directing most of my steps.

Tomorrow, she will call here, I’m sure. Because on January 28, 1994, she gave birth to our daughter in a hospital in Hudson, New York. And tomorrow, she’ll talk to our girl, and she’ll tell April all the things that I will never know—how she cried, what she wore, who came to see her. She will tell April their hospital story–the most important one of all—and the reason I must get all of mine right.