Hebrews 2:9  But we see Jesus, who was made lower than the angels for a little while, now crowned with glory and honor because he suffered death, so that by the grace of God he might taste death for everyone.

Last night at our Maundy Thursday service we sang one of my favorite communion songs, “Behold the Lamb.” Take a few minutes to listen and see, with the eyes of your heart; share in the Bread of Life:

https://www.youtube.com/watch?v=481xyHUrwQA

Last night we read a portion of Psalm 78. Verses 19-20 and 24-25 were poignant for Karis and me through the many years of our “wilderness,” trying to figure out how to nourish a body with a malfunctioning, non-functioning or, from November 2004 until January 2006, completely absent intestine:

Can God set a table in the wilderness?

True, he struck the rock, the waters gushed out, and the gullies overflowed;

But is he able to give bread or to provide meat for his people?

 

. . . He rained down manna upon them to eat and gave them grain from heaven.

So mortals ate the bread of angels; he provided for them food enough.

 

What is your wilderness? What is your hunger? Take it, as I will, to the cross today. See Jesus, tasting death so that we can drink life. “He drained death’s cup that all may enter in to receive the life of God. So we share in this Bread of Life, and we drink of his sacrifice, as a sign of our bonds of grace around the table of the King” (verse 2 of “Behold the Lamb”).

Taking a Holy Week break from the Stones of Remembrance.

John 2:18-22 The Jewish leaders then said to him, “What sign have you to show us for doing this?” [Chasing the merchants out of the temple].  Jesus answered them, “Destroy this temple, and in three days I will raise it up.”  The Jewish leaders then said, “It has taken forty-six years to build this temple, and will you raise it up in three days?” But he spoke of the temple of his body. When therefore he was raised from the dead, his disciples remembered that he had said this; and they believed the Scriptures and the word which Jesus had spoken.

Like me, you probably watched in horror yesterday as flames engulfed the iconic Notre Dame Cathedral. What a tragic, dramatic, incomprehensible introduction to Holy Week.

The ashes of Notre Dame Cathedral heartrendingly illustrate for us John’s record of Jesus’ words comparing his own body to the temple in Jerusalem. How ludicrous to imagine rebuilding the Cathedral in three days! Jesus’ boldness in comparing his body to Herod’s temple tells us that his resurrection is just as impossible.

His accusers later used their own version of these words to condemn Jesus before the Jewish high council and to mock him on the cross (Matthew 26:60-61, 27:40). They had no idea Who they were mocking; no understanding that the fullness of God actually indwelt this broken, beaten body they had destroyed. That death could not hold the Author of Life. That there was at work a deeper magic from before the dawn of time, to borrow from C. S. Lewis.

All four of the Gospel writers slow down the narrative when relating Jesus’s last days, and that is exactly what we are called to this week: to slow down our own frenetic lives to walk with Jesus to the cross, through the emptiness of Saturday, and then to allow the glory of Easter morning to astonish us once more. It occurs to me today that I did exactly the same thing in Karis, All I See Is Grace, paying extra attention to the details of Karis’s last days with us. And I can well imagine that for everyone who visited or worked in the Notre Dame Cathedral last week, that privilege has taken on entirely new dimensions. I can imagine each one thinking and saying, “I was there . . . I didn’t know . . . !”

This week is the time we slow down long enough to remember. To walk with Jesus. To open ourselves to new comprehension of what it all means. To identify with those who love him, around the world and through all time. To say with Karis, “All I see is grace.”

 

“What’s with the rocks?”

“Do you have a few minutes? Pick a rock and I’ll tell you a story.” 

Rock #5 green: Miracles

There was a time in my life when I could easily think about the future: imagine possibilities, make plans, dream dreams . . .

But when I found myself in survival mode not just for days or weeks, but for months that stretch into years, I found I couldn’t do that. My husband Dave would say things on the phone or by email like, “I have these goals for the next five years,” or “Next year let’s” do such and such, and I would stare blankly, as if he was speaking a foreign language. It was all I could do to imagine getting through that day. It was hard even to imagine tomorrow.

In the middle of life and death crises, which came around all too unpredictably and too often, my world narrowed down even further, to getting through this hour, or these minutes. For these minutes, Karis is still alive. God hasn’t taken her yet.

To help you understand this, let me describe a not-unusual day. Karis wakes up smiley and perky, describing to me all that she wants to do today: the friends she wants to call or visit, that new coffee shop she’s been longing to try, the birthday gift for a child in the hospital she wants to finish making, the passage from the Qur’an she wants to study and translate and compare with Scripture before she next sees her Arabic-speaking friend, what she wants to make for dinner and the shopping list it has generated . . .

By lunchtime all we’ve accomplished is getting her through her physical therapy routine, her bath, her bandage changes, her morning pills and IVs, and moved her from her bedroom to the living room couch, where she needs to rest after all the exertion of the morning. She talks to a friend on the phone, and I hear them making plans that I can’t imagine will ever take place.

Then she falls asleep, and over the next couple of hours I see her skin change from pale to flushed and damp. A hand on her forehead confirms she’s spiking a fever, but I need to measure it with a thermometer before I call her transplant coordinator. And I know what Cindy will say: bring her in; I’ll set up the admission.

On the way to the hospital I get a call from Dr. Costa: “Take Karis directly to the ICU.” “Why?” “Just do it.”

How does this man know?? By the time we reach the hospital Karis is struggling to breathe. There is already a transporter waiting for us at the emergency room, but triage takes her blood pressure: 60 over 40. They rush her away, and I follow to the ICU waiting room more slowly, knowing I will have a long wait while they stabilize her. I sit and pray. I thank God for Dr. Costa’s intuition. I thank God for nurses and doctors who know Karis well and love her. I know she’s in the best possible hands, not just medical hands, but God’s hands.

I’m not surprised when the ICU doctor emerges to tell me Karis is sedated and on a ventilator. I can go in and “see” her for a few minutes. It seems to be pneumonia, but there is suspicion of a central line infection as well. They’ve used pressors to stabilize her blood pressure, but she does seem to be septic. They’ll cover her with broad-spectrum antibiotics until they know what they’re actually treating.

I go in to “see” Karis long enough to wipe her sweaty forehead and pray for her and thank her nurses for their care. Then they need me out of the way, so I return to the waiting room to ponder whether I should call my husband in the midst of ministry in Brazil. I settle on an email, to him and to my other children. I decide to wait on posting on Karis’s prayer blog until I have something more positive to say.

I suddenly remember the friends who planned to come see Karis at home this evening, and call them to cancel. Before long my phone starts ringing: my other kids, friends who had already heard through the grapevine . . . My son, “Mom, I’ll get there as soon as I can, but you ought to phone Dad.”

The ICU nurse calls me in to go through Karis’s current medication list, which doesn’t completely match what’s in her computer. Dr. Costa comes by and I ask him, “How did you know?” “It was just a feeling,” he says, “because she spiked such a high fever so quickly.” “What are you thinking?” I ask him. “It’s too soon to tell, but I am very concerned—there’s too much going on all at once.” “She was perfectly fine this morning.” “I know—I saw her vital signs. Why don’t you go get something to eat, and then check back in. We’ll page you if we need you.”

I can’t tell you how many times this type of scenario repeated itself: going from fine to critically ill within hours. This was life with profound immunosuppression, necessary because of the mismatch between Karis’s graft and the two other immune systems present in her body. One step forward; two steps back. Stable to scary with no warning. It happened often enough that I became hypervigilant, like a child in an unpredictably abusive family. How could I make plans, or think concretely about the future?

One day at a time. One hour at a time. Holding on to God’s presence and his promises through the scary times and the more stable times. Clinging to Scriptures like Lamentations 3:20-27, which became my anchor:

I will never forget this awful time . . . yet I still dare to hope when I remember this: The faithful love of the Lord never ends! His mercies never cease. Great is his faithfulness; his mercies begin afresh each morning. I say to myself, “The Lord is my inheritance; therefore, I will hope in him!” The Lord is good to those who depend on him, to those who search for him. So it is good to wait quietly for salvation from the Lord. And it is good for people to submit at an early age to the yoke of his discipline.”

The discipline for me was this: to trust God for this day, this hour, and leave tomorrow with him. I thought a lot about the Israelites in the desert, dependent on God’s manna each morning. God gave them just enough for one day. If they gathered more than that, in anxiety over whether there would be provision for tomorrow, the extra would spoil.

God gave me just enough faith for one day, sometimes one hour at a time. It’s easy to understand the concept, but for me, it was hard to live into. I wanted more. I wanted to gather manna for tomorrow, to have margin, to have some sense of control over what might happen next. But that simply didn’t work. I had to walk and breathe and learn to relax into his provision for today, for now. His mercies new every morning.

After months and years of doing this, like any discipline, it becomes a habit—a habit I’ve found hard to break. It is easier now for me to think about and plan for the future, like making a plan for my book trips this fall. But I hold everything very loosely. God may have something different in mind; something I’m not able to see right now. Whether things run smoothly or there are unhappy surprises, I know I am dependent on my Father for his provision of what I need—one day at a time.

“What’s with the rocks?”

“Do you have a few minutes? Pick a rock and I’ll tell you a story.”

#5 gold: Miracles

Our first year in São Paulo, 1990, we lived in an apartment near our mission office. This was handy for Dave, but difficult for the rest of us. From a big house and yard in the quiet town of Port Huron, Michigan we were suddenly plunged into skyscrapers, never-ending traffic, a small living space on the ninth floor of a huge building, elevators, underground parking, and three levels of security just to enter our new home. The rent was more than we had expected, and no matter how I pinched pennies (or rather, cruzeiros, at the time), for the first time in our marriage I could not make our ends meet.

Worst of all, though, was the hour-plus bus ride to school through traffic and fumes over bumpy pot-holed streets. It was a rough kindergarten beginning for our five-year-old Rachel, who threw up on the bus almost every morning. I determined we should buy a house, to get out of paying the exorbitant rent, and that it should be a spacious house in a real neighborhood, within a ten-minute walk from PACA, our children’s school. Dave’s brother agreed to loan us money for a down payment. I figured out we could spend $39,000.

When I found a realtor and described what I wanted and how much money I had, he laughed. “Lady, what you want simply doesn’t exist. And in Brazil right now, you can’t buy a house on credit. The economy is too volatile. You’ll have to buy with cash.”

The realtor was right. The type and location of house I wanted cost at the time over $200,000. The “houses” we could afford were tiny cracker boxes that made me claustrophobic just walking into them.

The realtor didn’t believe I could only spend $39,000. We were Americans, and in the common Brazilian perception, all Americans are rich. He kept calling me, wanting to show me more houses of the $200,000 variety. Finally I said, “Don’t call me again until you have found my house—the one I described to you, close to PACA, for the money I have.”

I went back to prayer, trying to be happy with our apartment, and with always having to send extra clothes for Rachel to change into each morning when she arrived at school.

About six months later when I answered the phone, my realtor said, “I found your house. But it’s not a house; it’s a palace!” The location? A ten-minute walk from PACA. The price? They were asking $39,000, if we could pay in cash and in dollars. Dave’s brother secured a loan for us in the U.S. for the full amount, which we were able to pay off in two years with the money we no longer had to spend on rent.

We moved in on June 19, 1991, exactly one year from the day we arrived in Brazil. (That day, the electricity was out in São Paulo so we had to hand carry everything down nine flights of stairs—but that’s another story!) We lived in this miracle house with four bedrooms, four bathrooms, a dining room, an office, etc. for the rest of our time in Brazil. It was large enough to host any number of people, and our personal ties to that neighborhood are still strong. I could talk for a long time about all that God did there, but instead I’ll fast forward twenty years to Pittsburgh, where again I found myself looking for a house I was told did not exist.

 

Left: Rachel, Karis (holding her dog Buddy), and Valerie with neighbors and PopPop Kornfield in the street outside our house in São Paulo (the house is on the left). 

Middle: A neighborhood Christmas party in our living room, late 1990s.

Right: Teens in our home for Karis’s 15th birthday party, May 5, 1998.

This time we needed a house with at least one bedroom and one bathroom on the main floor. We wanted to be within fifteen minutes of Karis’s hospital, with no tunnels and no bridges to slow us down in emergencies. We had a small inheritance from Dave’s parents to use as our down payment. Based on that we figured we could spend at most $120,000. Our realtor and everyone we talked to in Pittsburgh about what we were looking for told us there was no such thing.

I went back to prayer. For a whole discouraging year I looked at houses and apartments, finding nothing that would work for us. Meanwhile, Karis was becoming more and more debilitated, and maneuvering her up and down the stairs to our flat was becoming frighteningly difficult for me. Something had to give!

I watched the multi-list like a hawk. One Monday morning while Karis was still asleep I saw a house newly posted, just a mile uphill from our apartment, in a neighborhood called Stanton Heights. I jumped in our car and drove there. The For Sale sign wasn’t even up yet. I walked around the house, thinking, hmm, this actually looks like there’s more to the ground floor than just a kitchen and living room. Boldly I walked up and rang the doorbell. “There are two bedrooms and a bath on the main floor,” the woman told me. “Thanks! I’ll call my realtor,” I yelled back to her as I ran to my car and back to Karis.

My realtor couldn’t show me the house until Wednesday afternoon. When we drove up, she informed me we had to wait for a few minutes because someone else was seeing the house. My heart sank. Someone else might buy “my” house?!

I hardly cared about seeing more than the main floor of the house, so anxious I was to get back to the realtor’s office to make an offer. They countered, but by Friday afternoon we had a signed agreement. The owners of the house were in shock—they had expected to spend the whole summer trying to sell their house.

Friends at Karis’s Garden Party, in the back yard of our house in Pittsburgh

The price for us? $117,000. Ridiculous. Much smaller houses in our new neighborhood were selling for significantly more money. The distance to the hospital? Exactly fifteen minutes most days—though at two or three or four in the morning we could do it in eleven minutes, faster than waiting for an ambulance.

I give you thanks, O Lord, with all my heart!

“What’s with the rocks?”

“Do you have a few minutes? Pick a rock and I’ll tell you a story.”

#4 green: Lessons in Trust (Sorry I posted #5 red out of order!)

“Your child has the strongest will to live of any infant I’ve ever known,” commented the veteran nurse at the children’s hospital in Chicago. She was showing me how to bathe six-week-old Karis without contaminating or dislodging the tube protruding from her nose or the central catheter coiled on her chest. A healing incision slashed her tiny abdomen both directions in a big cross, with a cherry-red stoma perched beside it.

Baby Karis smiled and gurgled, enjoying the attention and the bath. The nurse dressed her up in a pretty yellow dress, taped a matching bow to her bald head, settled her in a stroller, and took her and her IV pole around the unit with her, so Karis’s smiles could cheer up other patients.

This scene was predictive of multiple hospitalizations in years to come, when as soon as she felt well enough to get out of bed, Karis would explore whatever unit she was on to find out who else was there and how she could cheer them up. I would find her coloring pictures or reading stories or singing songs to other kids, chatting with nurses, spreading sunshine to everyone around her.

I’m an introvert, so when I’m sick I want peace and quiet. It took me a while to understand that whether she was home or in the hospital, extrovert Karis would get well faster with people around her. When she was an adolescent her hospital room was the party place, breaking all the visiting hours, indulged by the nurses whom she had already charmed. If a party didn’t come to her, Karis took her smiles and enthusiasm to others on the floor. The doctors knew she would start asking them as soon as she was strong enough after a given crisis to sit up by herself, “Can I go home today?”

I instinctively wanted to protect Karis. She instinctively wanted to push all the limits, ignore restrictions and live life. Our most frequent disagreements were over whether she was well enough to go to school on a given day: Karis—YES! Me—NO. Guess who usually won, unless she was actually too weak to get out of bed? Often on those days it was just a matter of time before the school called me to come pick her up because she was throwing up or had passed out from dehydration or was in too much pain even for her to ignore.

Karis saw no reason why she should consider not going to camp, or to a church youth retreat, or cross the city with a friend by bus to attend a concert, or stay out all night because the buses were no longer running (and, by the way, forgetting to notify her worried parents). In a city notorious for crime, my cute little blondie felt perfectly free to wander the streets, to sit outside on our front step early or late, to make friends with people wherever she went.

Trust seemed completely natural to Karis: trust in God and trust in other people. She left all the worrying to me, for whom trust was not easy. I argued and fought with God. I didn’t understand why God didn’t heal Karis and free her from the pain, the surgeries, the embarrassment of ileostomy messes, the too-frequent life and death crises. Karis had so much ambition, so many plans for her life, so much to offer . . . How did any of this make any sense? Like any mom, I would gladly have traded my good health for my daughter’s suffering. I knew God was all-powerful and could heal her with just a touch of his little finger. If he was a good Father, why didn’t he? Why didn’t he heal all the other patients for whom we prayed?

Yet he asked me to trust him.

And Karis asked me to trust him.

Karis said things like, “Mom, there’s a purpose in all this. A good purpose. It’s not about me, it’s about what God wants to do because I’m hanging out in hospitals and waiting rooms with people I wouldn’t otherwise meet.”

In later years in Pittsburgh, those people included Arabic-speakers from a variety of north African, middle-eastern and Asian countries. Not one of them, to my knowledge, ever told Karis she could not pray for them, or read Scriptures in Arabic to them, or refused an Arabic Bible as a gift. Several of them kept in touch with Karis even after they returned to their home countries. I am very curious to find out once I go to Heaven how many of Karis’s Arabic-speaking transplant friends are there with her.

I don’t have answers to a lot of my questions. God asks me to trust him anyway. Once in a while he gives me a little glimpse of his purposes, which are so much different and greater than my own. Meanwhile, he shows me in dozens of little ways that he cares, that he hears, and sees, and is involved. He’s not distant and uncaring. He is with us, and has been throughout our long journey with Karis.

Someday I’ll see with my own eyes what Karis already sees: our Lord’s loving face. One day I’ll understand whatever I am capable of understanding.

Meanwhile, I trust. Not well, but enough. And where my trust is weak and faltering and patchy, he graciously fills in the gaps. Because his good purposes will be fulfilled.

“What’s with the rocks?”

“Do you have a few minutes? Pick one, and I’ll tell you a story.”

Rock #5 red: Humor

I’ve had a soft spot for simians ever since our four-year-old Danny, watching monkeys at a zoo groom each other, said, “Look, Mom! They’re cooperationing!”

Monkeys are as common in some parts of Brazil as squirrels and chipmunks are in Pittsburgh. One day our three-year-old Valerie was eating a banana in the back seat of the car when a monkey stuck its arm through the window and grabbed it! A similar thing happened when we were vacationing at our favorite mountainous national park, eating breakfast on the hotel’s veranda.

Monkeys were a delightful feature of the Pantanal, in central-west Brazil. The Pantanal is among the most biodiverse places on our planet, with over three hundred identified mammal species. Among them are several varieties of monkeys, from tiny tamarins, colorful little night monkeys and marmosets, to medium-sized capuchins and large spider and howler monkeys.

One peaceful morning Dave and I went for a walk, threading our way with some trepidation between sleeping alligators, and were startled by a huge raucous sound reverberating off the trees. It grew and grew into a rhythm like the beating of an enormous drum. It was terrifying, in part because we had no idea what we were listening to. Back at the hotel we learned that howler monkeys communicate in this manner across long distances.

The funniest experience we had with monkeys was in the Amazon. Our family rented a small boat and its crew for three days on the river, with occasional stops at points of interest. At one of these places was a collection of interesting jungle animals. We stroked sloths, viewed enormous anacondas, admired a family of capybaras, and laughed at the monkeys. One monkey leaped onto Karis’s shoulders, wrapping its hands around her eyes and its feet around her mouth. We tried everything we could think of to get that monkey off of her, but it held on tight. Finally, when Karis was getting somewhat desperate, our son Dan grabbed her, ran down to the shore of the river and held her body out over the water. That worked! The monkey apparently didn’t want to go swimming, so it let go, ran down her body and away into the forest. Too bad we were too preoccupied with the whole situation to think of taking pictures!

 

Playing Dress-Up

Like most little girls, Karis and her sisters loved to play dress-up. Our big box of dress-up clothes gleaned from resale shops and garage sales over the years was high on their priority list to include with our shipment when we moved to Brazil and rediscovered with glee when the shipment finally arrived months after we did. Neighborhood kids joined in the fun, even the boys. When we started a children’s club in our home, everyone wanted to have a part in the dramas Karis concocted and directed, with costumes patched together from that big box that gave wings to their imaginations.

We have photos of Karis dressed up for school plays, for ballet productions, and for dances she choreographed with her sisters for their father for Christmas.

And when she had to be in the hospital, Karis pretended that the hospital gowns were just one more dress-up party that she and the other children there had been invited to. For herself and for countless children over the years, her bright smile, imagination, and humor helped turn tragedy into comedy, leaving the worry where it belonged, with the grown-ups and with her Heavenly Father.

“What’s with the rocks?”

“Do you have a few minutes? Pick a rock and I’ll tell you a story.”

Gold #4: miracles

November-December, 2005

When she died in November, 2004, our dear friend Martha, three-time kidney recipient, bequeathed to Karis her seventeen-year-old little car, dubbed Maximilian. When I took Maxi for his annual check-up, I was told he was completely rusted out and unsafe to drive. Dismayed, I took him for a second opinion. This mechanic was more emphatic. “Lady, if you value your daughter’s life, you will not even drive her home from here. There is nothing holding this chassis together.”

Maxi became an organ donor. The used car place gave us $100 for him.

Three weeks later, our scattered family would be gathering in Pittsburgh for Christmas, and we had made plans to travel two hours to a friend’s “little house in the big woods” for a special family time that we badly needed. Karis was in liver failure and the doctors counted her life expectancy in weeks, not months. There were six of us with our suitcases, plus Karis’s wheelchair and medical paraphernalia, plus a Christmas tree, food for a week . . . What were we going to do?

I consulted my husband in Brazil, and he told me exactly what we could spend for a “new” car. I started calling and visiting used car lots. The salesmen were polite, but they made it clear I would not be able to find a reliable car for the money I had. I checked Craigslist, scoured newspaper ads, prayed, and prayed some more. The days ticked away, and I still had no idea how I would pick up my children and my husband as they arrived in Pittsburgh on their various flights and how we would drive to our vacation cabin.

Finally one day I saw a “Christmas special!” ad in the paper. I called the dealer on Neville Island. Before I borrowed a car to drive out there, I wanted to be sure I wasn’t wasting time or fuel. The salesman assured me that they had three vehicles matching what I was looking for. But he wouldn’t let me pin him down on a price. “I only have this much money,” I told him. “Not any more. I sure hope you’re not trying to lure me into a scam or pressure me to spend what I don’t have. I will not buy on credit.” He assured me that I should come out, and that it would be OK.

With misgivings, I called our friend Alan, owner of the little house in the big woods, and asked him to go with me. I had zero confidence that I would be able to judge whether a car was in good mechanical shape. The salesman showed me three mini-vans, and my heart sank as I saw the prices on their windshields. Perhaps they were good deals, but they were more than double the money I had to spend. And I began to feel angry when he said, “Which one do you like?”

“You know perfectly well I can’t afford any of the three,” I yelled, holding back tears. “Why are you doing this to me?” “Ma’am,” he said quietly. “Didn’t you see in that newspaper ad the words ‘Christmas special’? You pick any one of these three, and you can have it for exactly the money you have, not one dollar more. Merry Christmas.”

I chose the green one, in honor of our daughter Valerie’s favorite color. The next day I drove Mini to the airport to pick up my husband and children. She had space for the six of us, and our luggage and food and Christmas gifts and Karis’s wheelchair and all her medical paraphernalia. And a Christmas tree. We had a marvelous, healing time together as a family in the little house in the big woods.

January 10, Karis was called for her second transplant, this time a multivisceral—five organs. The doctors told us later that without that miracle, she would have lived perhaps three weeks.

Our Christmas special mini-van served our family’s needs for the next five years.

Blessed be the Lord, who daily bears our burdens (Ps 68:19).

“What’s with the rocks?”

“Do you have a few minutes? Pick a rock and I’ll tell you a story…”

Rock #4 red–humor

“I disagree. The teacher’s wrong.”

I sighed. Karis and I were having our nth discussion about math. She was in fourth grade English math at PACA, our children’s school in São Paulo, Brazil. My parenting skills were challenged at times by this stubborn child. “I suppose the textbook is wrong too?”

“Yes. I want to do math my own way, but my teacher won’t let me. Can I home school, just for math?”

I made an appointment to talk with the elementary school principal and Karis’s math teacher. At one level we were all amused by Karis’s tenacious conviction that she knew better. The problem was that she was failing math. “Her way” did not yield the same answers as the teacher’s.

“What if we move her into the Brazilian math class?” The principal’s suggestion was one that had occurred to me as well, but I didn’t want to undercut Karis’s English math teacher. We decided to try it, on the condition that Karis would agree to cooperate with the Brazilian teacher.

That decision resulted in the dear Brazilian teacher spending long after-school sessions with Karis trying to explain to her logically why “her way” didn’t work. Having conducted those sessions myself, my sympathy was all with the teacher. After a week or two, I decided enough was enough and put my foot down. For the rest of the school year, Karis would have to submit, even if she still staunchly believed her way was correct and the rest of the world was wrong.

And Karis had to stop “contaminating” her little sister with her beliefs about math. Valerie, soon to enter kindergarten, adored Karis and tried to copy everything she did. I had no doubt that if it was my word against Karis’s, whatever Karis told Val would win.

From the time she was young, Karis loved coming up with her own way to do all kinds of things. She broke all kinds of rules, with no apparent remorse unless she discovered that what she had done actually hurt someone. Not all the time, of course, but when something mattered to her, she regarded rules and other boundaries as but suggestions to be considered. No one’s word on anything was to be automatically accepted without careful evaluation. Even then her creative mind often found a way around it.

Yes. She sometimes drove us crazy. But I have no doubt that her very stubbornness, and refusal to accept words like “there’s nothing more to be done medically to keep you alive,” were qualities God used to keep her with us as long as he did.

“What’s with the rocks?”

“Do you have a few minutes? Pick a rock and I’ll tell you a story.”

Rock #3 green: Lessons in trust

“How do you do it?”

“Do what?”

“Deal with—all this—[a gesture indicating all the medical paraphernalia] and still have a smile on your face?”

“I don’t. I can’t. It’s too much for me.”

“I don’t understand. I mean, I get upset when I have a flat tire, or the flu.”

“What do you do with that frustration?”

“I don’t know. I guess I get mad. I complain. Why are you asking me that?”

“I don’t think there’s really that much difference between what you have to deal with and what I have to deal with. In both cases it’s too much for us. We’re not meant to deal with life by ourselves.”

“What do you mean? Aren’t we supposed to be strong and spiritual and independent?”

“Well, no. I don’t think so. I certainly can’t live that way.”

“So we’re back to my first question: How do you do it?”

“When I wake up in the morning—if I’ve been able to sleep—before I even open my eyes, I tell the Lord I just can’t do this. I can’t face another day. I’m just not strong enough. I tell the Lord my particular frustrations and worries about this particular day. I ask him again to take me Home. But since he doesn’t—at least so far—[big grin] I ask him to live this day for me. I am weak but he is strong. His strength is my joy. His joy becomes my strength. Tell me what you’re dealing with today.”

I heard some variation of this conversation many times. People would come to visit Karis supposedly to cheer her up (and they did), but the focus soon shifted from her to them, to their worries and concerns. And Karis would pray for them, and help them pray for themselves. And they would leave with Karis’s smile on their own faces.

I have to tell you that Karis didn’t learn this dependence on the Lord from me. I was trained from infancy to be tough, to be strong. In my childhood home, any expression of a need was considered griping or whining, and that was simply not allowed. I didn’t learn how to admit weakness or distress or sadness. I learned to swallow or deny all that; to shut up and do my work. To keep my focus on other people’s needs and how I could serve them, because my own needs weren’t real; they didn’t matter.

I lived like that pretty much all the way through the hard years with Karis. And then, a few months after she died, after the five extra people who lived with us gradually went their ways, I fell apart. Grief swamped me, not just the grief of Karis’s death, but hundreds, thousands of big and little griefs piled up inside me that had never been mourned. I couldn’t contain them any longer. They showed up in nightmares to the point I was afraid to go to sleep. They flooded me when I was awake, three-D flashbacks that could suddenly intrude at the grocery store, or when I was driving, or having a conversation. I had what I think is a mild version of PTSD (Post Traumatic Stress Disorder).

Not by my own choice, I had to face into my own pain and losses and disappointments and trauma. I had to let myself feel. I thought I would not survive this. I had to admit my own fragility and neediness. All my life, being a wimp had seemed like the ultimate failure. I finally had to start paying attention to those overheard Karis-conversations and confess my own inability to do life in my own strength.

It took a long time to work through all that stuff. It felt like forever. When I was in the middle of it time stood still. The only way out was through. I couldn’t do it by myself. I absolutely had to rely on other people. And on the Lord.

I don’t ever want to go back there. I have to take life in small bits; deal with stuff as it happens. Deal with it by admitting my weakness, my neediness. Acknowledge to the Lord my inability actually to deal with the realities of life, with the suffering all around me in this sad and broken world. And do you know that when I’m willing to admit I can’t do it, and leave my disappointment even in this with the Lord, that’s when I find his strength. It’s the opposite of how I’ve lived most of my life.

Do you know why we sometimes gripe and fuss and whine? Why we get anxious and worried, can’t sleep, eat too much or not enough, hook into screens or shopping or chemical escape or whatever? Well, of course there are lots of reasons. But one of them is that we think we have to do life by ourselves. That we have to be strong and independent. That admitting our true needs and weaknesses and feelings is failure. We focus on complaining about the small stuff so we don’t have to face the big stuff that is too much for us.

Listen carefully to these words, not as a Band-Aid, not as a proof text or a way of judging yourself and others, but as a lifeline for your soul:

Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for what he has done. Then you will experience God’s peace, which exceeds anything we can understand. (Phil 4:6-7)

Tell God what you need . . . That’s still hard for me. It’s much easier for me to tell God what I perceive to be someone else’s needs. Mine seem small and inconsequential; not worth taking up air time. Maybe you feel that way too. The problem is that small things not cared for pile up, until they’re big enough to be difficult to handle and I’m forced to pay attention.

So one of my big lessons in trust, that I expect to be learning the rest of my life, is to let God in on even the small stuff, admitting that even in that, I need his help. The more I practice being dependent on him in ordinary life, the more I’ll train myself to look to him for strength when tougher things come.

“What’s with the rocks?”

“Do you have a few minutes? Pick a rock, and I’ll tell you a story.”

Rock #3 gold: Miracles

[Note: TPN is Total Parenteral Nutrition–feeding directly into the bloodstream with elemental nutrients, completely bypassing the digestive system.]

Just after midnight Friday night March 26^th (or rather, the first minutes of March 27^th 2004), Karis’s cell phone and mine rang simultaneously. She was on campus; I was staying with friends. Nerves taut, I listened to Karis say YES to a chance for transplant. We were told we had to arrive at the hospital in Pittsburgh by 4:00 a.m.

The only way to travel from South Bend to Pittsburgh within four hours in the middle of the night was by private jet. When we arrived, bag and baggage, at the Children’s Hospital of Pittsburgh, Karis was whisked away to a series of exams and blood tests—it seemed they sucked out about a pint of her blood while our things were locked into a storage room. Right at 5:00 a.m. as the nurses put Karis on a stretcher to take her to the operating room, the phone rang: the surgery was cancelled! The team “harvesting” the donor intestine in New Orleans was not satisfied with the condition of the organ.

Wow. Whiplash. The nurses gave Karis medications to reverse the immunosuppressants she had received, and then began organizing her discharge. Could I give them an address so they could set up delivery of Karis’s TPN?

An address . . .? We literally did not know a single person in Pittsburgh. I called the Ronald McDonald House: full. Each of the Family Houses: full. Home health would not deliver to a hotel. I had no idea what to do.

Karis, sensibly, having been up all night, went to sleep. I went to prayer and racking my brain for ideas. The nurse kept coming in to remind me insurance would not pay for Karis to stay in the hospital for no reason—she needed an address! It was Saturday and the home health care agency only worked until noon. She had to get Karis’s order in quickly to give them time to concoct her TPN. (Since Karis’s intestine wasn’t functioning, TPN is the way Karis was nourished—it’s elemental nutrition given straight into the blood.)

At some point that anxious morning as I begged God for a solution, I remembered an e-mail I had received several months before from someone in Pittsburgh saying she understood that my daughter and I might need a place to stay for a weekend. If I could give her a date, she would let me know whether her guest space might be available. I had written back thanking her but saying we could not predict when a transplant call might come, and we were actually looking for a place for six months. Hearing nothing more from her, I almost trashed her e-mail (I’m a compulsive deleter). With my finger poised over “delete” I thought, hmm, this is a friend of a friend of my sister Shari’s. Perhaps we’ll meet her some time. So I filed the e-mail under “Pittsburgh” and forgot about it—until this moment. What was the woman’s name? Carol something Italian-sounding?

I asked at the nurse’s station for help with retrieving my laptop from the storage room and connected to the hospital’s wifi. Yep, there was the e-mail! The woman’s name was indeed Carol, Carol Finelli Brown. She mentioned in the email her husband’s name was Battle. I went back to the nurses’ station to ask for a phone book. The unit clerk raised her eyebrows as I opened to the B’s—yes, there it was! Brown, Battle. “I think I may have found something,” I told the clerk. “I’ll let you know.”

Carol answered the phone, and claimed no recollection of our e-mail exchange. After listening to our plight she said, “Well, I have no idea who you are. I’ll have to discuss this with my husband. I’ll call you back.”

No other ideas came to me in the hours that passed before my phone rang. This time it was Battle, who plunged into giving me directions to their house. Ignorant of Pittsburgh, I absorbed nothing of what he said. When he stopped talking, I said, “If I can find a taxi, would you be able to explain all that to the driver?” “Oh—you don’t have a car? Then I’ll have to call you back.”

A nurse came in to say this was the last chance to order Karis’s TPN. Frustrated, I shook my head. No, I still didn’t have an address to give her.

A couple of hours later my phone rang again; Carol this time. “You’ve caught us on a very busy day. But I’ve figured out a plan. I am scheduled to read Scripture at our church’s Saturday evening service. Then, instead of listening to the sermon, I will duck out and go to the hospital to pick you up. Meet me with your things at the hospital entrance at 5:45.” Click. I didn’t know what Carol looked like or what car she would be driving, but I presumed she would recognize me, a half-dazed woman with a pile of luggage on the sidewalk outside the hospital.

Returning to the nurses’ station I pointed to the Browns’ address in the phone book. The unit clerk looked at me like I was crazy. “Do you know this person?” “Well, not exactly . . .” “What did you do, just open the phone book, close your eyes, and point? Is this a joke? Here, give me that.” She took the phone book and called the Browns’ number. “I have a woman here who thinks she is going to sleep at your house. Do you know her?” (Eyes roll.) “I see. And are you willing for home health to deliver TPN and medications for her daughter to your address?” (Eyes roll again.)

Since it was too late to order TPN that day, the nurses invented something to tell the insurance company about why Karis would stay in the hospital overnight, but exhorted me to pick her up bright and early the next morning. I said goodbye to Karis, gathered as many things from storage as would fit on a hospital cart, and took the elevator down to meet Carol.

Instead of taking me to her home, Carol drove back to her church, where an after-service dinner was in progress. She took me around the tables introducing me to dozens of people, then sat me down with a plate of food. She chattered with friends; I could hardly keep my face out of my plate. At some point she noticed. “Oh, are you tired?” She whisked me home and tucked me in to her third-floor guest bed under a huge fluffy white comforter. I was asleep before my head hit the pillow.

When I woke the next morning, I saw a note from Carol. “Here are car keys to the BMW. Pick up your daughter and then meet us at church. We’ll be sitting toward the front on the right side. You’ll need to get gas.”

I had no idea how to get back to the hospital, or from there to the church. And I was afraid to drive their BMW! I searched around until I found a phone book, which thankfully had a map of sorts. With help from a gas station attendant, I found the hospital, discharged Karis, collected the rest of her things, found the church, figured out how to park there, and located the sanctuary where the service was in progress. Karis and I tiptoed down the right side aisle all the way to the front and slid in beside Carol.

The service, it seemed, had been designed specifically for Karis and me. Every song and prayer, a sermon about trusting God in times of uncertainty . . . soon both Karis and I were weeping. Afterward Battle (whom we met for the first time through tears) and Carol, handing us Kleenex, said “We have people we need to talk to. Wait for us here.”

As Karis and I tried to compose ourselves one of the pastors approached us. “I couldn’t help noticing that the service, um . . . moved you,” she said. “May I pray for you?” Karis later told me the pastor prayed things for her that she had not told a single person were longings of her heart. When the pastor moved on, Karis said to me, “Mama, I don’t know where we’re going to live in Pittsburgh. But I think we’ve found our home.”

Yes. That church is home for us to this day.

Battle had a meeting, so Carol drove us home to the fluffy white comforter for naps. Finally, at supper that evening, we started getting to know each other: Carol, a radio announcer who left home each morning at 4:30 a.m., and Battle, an entrepreneur; both long-time active members of Church of the Ascension. Battle regaled us with stories about his mission work in Mongolia before we tucked in under the white comforter once more.

Monday morning at 6:30 my phone rang. I knew Carol had left for work hours before, but I could hear Battle downstairs. I ran down two flights calling “Battle! Battle!” just as he opened the front door to catch his bus for work. “Battle, Ronald McDonald House is on the phone telling me they now have space for us. Could l borrow your car to take Karis and our things over there?”

Battle looked at me quizzically and said “What does Ronald McDonald House have that we don’t have? Can’t talk now—gotta run or I’ll miss my bus. DON’T GO ANYWHERE—we’ll talk tonight!” And he was gone.

Puzzled, I nonetheless told the RMH person we had a place for that night, so they could go to the next person on their waiting list.

On my way back to the third floor, my phone rang again: transplant! There was another possible organ for Karis! They weren’t sure yet, so we should just sit tight, but this one looked like it might be the one.

Whiplash.

Mid-afternoon, transplant called us back instructing us to go to the hospital. I called Battle, secured permission to use his car and to leave our things in their guest room, repacked what I thought we might need for the immediate future, and drove to the hospital. Déjà vu: the same exams; drawing an unbelievable number of vials of blood from Karis’s arm . . .

At around 5:30 Battle showed up in Karis’s hospital room saying he would keep us company until she was called for surgery. He explained that he and Carol had decided we could stay in their third floor guest apartment for as long as we needed. We had no way of imagining then that this “upper room” would be our home for two and a half years!

Battle entertained Karis with a series of hilarious tales while we waited for the call from the OR. When the head surgeon walked in to tell us surgery was a go, Battle said, “Why hello, George . . .”! They had known each other for years. This was how I learned that our transplant surgeon was a committed Christian. We prayed together before Karis was whisked from the room.

Karis was anesthetized and the surgeons inserted a second central line, an arterial line, several regular IV lines, and were ready to make the first cut to remove her intestine when the phone rang in the OR. “Stop everything!! This donor intestine is flawed; we won’t be able to use it . . .”

Whiplash.

There would be two more aborted calls before the transplant actually happened five months later. With all the uncertainties of those months, and the post-transplant crises, our new church and our new home gave us stability and security we could not have experienced on our own. The church was walking distance from the hospital. Our new home was just ten minutes’ drive from the hospital and the church, and came with amazing compassion and support from our new family, Battle and Carol. Over time they hosted not just Karis and me, but Dave and our other children, and various members of our large extended family. They helped our daughter Rachel find a summer job in Pittsburgh so that she could be near us for a few weeks before returning to college. For the first time in years, at Christmas they put up a tree so that our kids could have a sense of holiday joy while their sister fought for her life in the ICU.

“God will supply all your needs” (Phil 4:19). Yes!