“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!

“What’s with the rocks?”

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

Rock #3 red: humor

My husband traveled over Thanksgiving, so I decided the kids and I would go somewhere too. We were penny-pinchers, so I bought tickets on the cheapest airline available to visit relatives in Kansas City.

Our friend Steve offered to drive us to the airport, over an hour away. As a treat, we would stop en route for Happy Meals, since we wouldn’t be fed on the plane.

 

At pick-up time, Steve was nowhere in sight. Tension mounted while I tried to locate him. Finally he screeched into our driveway and I threw kids, suitcases, and little backpacks into the car. As we peeled out, the kids wailed that I had PROMISED them a Happy Meal.  At two, four and six, losing our flight didn’t matter, but that Happy Meal did. Steve swung into McDonald’s, grabbed three identical Happy Meals, and took off again for the airport.

 

We leaped from the car and raced to the check-in counter. Too late to check our suitcases. Almost too late to board the plane. The lady said she would phone them not to close the doors for five more minutes.

 

Of course, being the cheapy airline, our gate was the farthest one on the concourse farthest away from the check-in desk. My 7-month-pregnant tummy bumped against Rachel in the stroller holding her Happy Meal, with suitcases hung from each handle, a bag and Rachel’s little backpack over my shoulder. Danny and Karis clung to my coat one on each side, clutching their Happy Meals in their free hands, small backpacks on their backs. “Kids, we have to RUN!”

 

Our limiting factor was Karis’ four-year-old running speed. Soon we had another limiting factor: the Happy Meal Cokes were sloshing inside the quickly disintegrating cardboard containers. We stopped long enough to pile Danny’s and Karis’ Soggy Meals on top of Rachel’s in her lap. She clutched all three with the gleam in her eye of a girl with a mission.

 

Because it was a cheapy airline, when we got to the very last gate on the concourse, we had to go down two flights of stairs, out a door and across the tarmac–and then up a long flight of narrow stairs into the plane. Yeah. Two year old, four year old, six year old, stroller, suitcases, bag, backpacks, and the precious Sloshy Meals, with the flight attendant glaring at us from the top of the stairway.

 

Inside we faced a plane full of hostile faces, people disgusted with the delay of their flight. This cheapy airline had no assigned seats. The flight attendant pointed out the only seats left, scattered through the plane, but made no effort to move anyone so that we could sit together. I buckled Danny with his Squishy Meal into the first free one and Karis into the second, half way back. The seat left for Rachel and me was in the very back of the plane.

 

As I extended my seat belt to its maximum length to accommodate myself, my unborn child, and Rachel, the flight attendant began her routine.  “Welcome to Flight so-and-so nonstop to Des Moines . . .”

 

–a collective panicked intake of breath!–

 

“JUST kiiiddding; we’re going to Kansas City . . .”

 

Unbelievable.

 

After take-off, I settled Rachel in my seat with her limp French fries and ketchup, then lumbered up the aisle to help Karis rescue her Coke-drowned hamburger and on to the front to help Danny wipe off his little prize. Meanwhile Rachel spread ketchup as far as she could reach. I cleaned up as far as I could reach and settled her with crayons and a coloring book. Back up the aisle to collect the detritus of Karis’ Sloppy Meal, then Danny’s, then back to check on Rachel, just in time for seatbacks-and-tray tables-in-upright-position.  Waddle back to Karis, then Danny: check seatbelts, put away crayons and coloring books, then stumble all the way back to once again get that seatbelt around my “lap” and my daughter.

 

“Stay where you are and wait for me,” I had firmly instructed Danny and Karis, and “SIT STILL, Rachel!” While the flight attendant at the exit door tapped her foot impatiently, I reconstructed the stroller/Rachel/suitcases/bag/backpack arrangement, now mercifully minus three Squashy Meals.

 

I had just managed to pull the last item out of the overhead compartment of the now-empty plane when a voice came over the loudspeaker:

“Isn’t anyone going to help that pregnant lady with her nursery school?”

And that’s why I call this story, “Too Little, Too Late.”

“What’s with the rocks?”

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

#2 green: Lessons in trust

I commented to a friend that I didn’t want to do Christmas. It was early December and Karis had died in February. My friend replied, “I’m so disappointed in you. I thought you would be over that by now. I always thought you were a woman of faith.”

Does faith mean we don’t feel grief? The “proof text” for this idea is 1 Thessalonians 4:13. Here is my favorite translation of that verse: “Beloved brothers and sisters, we want you to be quite certain about the truth concerning those who have passed away, so that you won’t be overwhelmed with grief like many others who have no hope” (The Passion Translation). The point of comparison is between those who have hope of seeing their loved ones again, because they believe life doesn’t end at death, and those who don’t. For those who have hope, Paul says, grief will be different from what it’s like for those who don’t.

That makes sense, right? But the text doesn’t say we won’t grieve, or how long we “should” grieve, or what any individual’s grief process will be like. I went through complex grief that included PTSD (Post Traumatic Stress Disorder) flashbacks and nightmares. This was because in the intensity of caring for Karis for thirty years, I didn’t have space to process my feelings along the way as both she and I experienced one loss after another, one life-and-death crisis after another, not just the loss that came with her death.

Does this mean I didn’t have faith? No. I never lost my faith in God. It means I went through complex grief. It took a lot of time, and I couldn’t have done it by myself. I needed help. Rather than criticize or judge me, God walked through those tough months with me, slowly healing me from the traumas I had experienced.

Does that mean I wasn’t actually trusting God all along the way? Well, yes and no. There were specific moments when I didn’t know how to trust him. One of those was early on, when Karis was just a few weeks old and doctors told us it was wrong to keep her alive artificially—we should disconnect everything and let her die. God sent a pastor to me in my distress who gave me hope I could cling to. When I confessed I didn’t know how to trust God in the agony of this situation, he said “Then it’s time for the Body of Christ to have faith for you.” Tears are coming to my eyes right now as I think about that day and the comfort of his words.

Let’s back up even further, to the time when Karis was a few days old and we realized something was seriously wrong. We had friends who told us all we needed was faith. They were disappointed in us when we took Karis to the doctor, and when she went through surgeries and took medication. I recounted to my brother-in-law the tension this introduced into our relationship with these dear friends, and he told me the story of the man in the flood who refused all of the help God sent to him. When he drowned and went to heaven, he was angry with God for not hearing his prayers. God said, “I sent you a canoe, and a rowboat, and a helicopter. Why did you send them all away?”

Just so, God opened doors for Karis to have the best possible medical care. Even so, for thirty years he intervened over and over again to preserve her life when the doctors reached the end of their resources. Until he chose to take her Home. When I read Karis’s journal from the last year of her life, I learned that she pleaded with God again and again, “Please, Father, take me Home.” I think he finally said, “OK. Let’s do this.”

Karis believed absolutely that God would keep her on Earth as long as he had use for her here. That belief was bedrock for her. It meant she lived exuberantly, because she didn’t fear death. Many times, when doctors told us it was the end of the line, I became anxious. Karis was always frustrated with me for this. She wanted me to have the same faith she had, that her life was completely safe in the arms of her Father, God. But I don’t believe God condemns any mother for fearing for her child in adverse circumstances. God built into mothers concern for their children’s safety. He understands us because he made us this way.

The Saturday morning before Karis died, the head of the transplant ICU met with our family. He explained that there was nothing more to be done for her, and that when we were ready, we could make the decision to take Karis off life support. But the doctor understood how difficult this decision would be for us, and he encouraged us to take all the time we needed.

We felt so supported by that doctor. The decision was challenging for us in part because God had intervened and given Karis back to us so many times in what felt to us like similar circumstances. We agreed as a family that we would disconnect her only when each of us was ready. Three days passed while each of us tried to work it through.

But for the ICU nurses, those three days were just wrong. One day Karis’s nurse confronted me. She said we were being selfish and were more concerned about ourselves than about Karis, whom she believed to be needlessly suffering. I told her that I was certain Karis was fine, and would be fine, whenever she died. But if we did not make this decision unanimously as a family, it would crack us apart. We might never be fine again. We might never be able to repair the damage such an action would cause.

Mercifully, God took Karis just a few hours later. We never had to make the agonizing decision to take her off life support, which felt to some of us like we would be participants in her dying, after fighting for so many years against all odds for her living. I know that was a gift to us, and that not every family has the blessing of experiencing that outcome. I can see how easy it would be to judge us from the outside, especially for someone who deeply loved Karis. But I hope that out of this situation I have learned greater trust, and less need to judge. Only God understands each person’s needs and all the factors involved. I think there is seldom a right and a wrong in complicated situations like this one and like so many others that our family experienced along the way. I believe that God, in his wisdom and in his love for each of his children, is the only one who is fully trustworthy. Even when we misjudge a situation and make a “wrong” choice, we do not thereby defeat his love and his determination to bless us. Nothing, Scripture tells us, can separate us from God’s love (Romans 8:38).

“What’s with the rocks?”

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

#2 gold: miracles (this and all of the Rocks of Remembrance stories I’m posting are not in the Karis book)

One morning I said to the Lord, “We don’t have enough money to pay the rent.” A couple of hours later I picked up my mail. There was a card, and a check. The card said, “God told me to send this to you.” It was the exact amount of money that we needed.

I had not heard from that person before. I have not heard from her again.

This is only one of many surprising ways God cared for our family through the transplant years. Supporting two households (one in Pittsburgh and one in Brazil) with a daughter in college, numerous medical expenses, and Dave’s trips from Brazil to visit Karis and me every couple of months did not fit within our missionary budget.

In November, 2004, a few days into what would become 74 days in the ICU, I received a call from the hospital finance office. “Are you aware that your daughter will reach her lifetime limit on your insurance tomorrow?” No, I had no idea. “I think you better come down right now and talk to me.”

The financial officer quickly ascertained the facts of our situation, and said “We’ll have to apply to Medicaid. This means your daughter will become a ward of the state of Pennsylvania.” The woman put aside other concerns in order to help me jump through the hoops that very afternoon. Still, it was a week before Medicaid was approved, and that meant thousands of dollars of expenses flowing into Karis’s account.

I mentioned our situation on Karis’s blog, requesting prayer. A friend of Karis’s who worked at Notre Dame took it to the Vice President for Student Affairs. The first I knew of this was a call from his office requesting additional information. Next I received an email directing me to submit to the VP’s office all medical bills from that week between the end of our private insurance and the start of Medicaid. From an ND charitable fund managed by the Vice President, those bills were covered. Many thousands of dollars.

Later, from that same charitable fund, the Notre Dame VP decided to help cover Dave’s round trips from Brazil to visit Karis and me every couple of months. The next year they re-evaluated our situation and decided to include some help with our rent. And yes, they knew we aren’t even Catholic! Karis received in the mail a warm Notre Dame blanket from the President of Notre Dame, and a warm powder blue ND jacket from the Vice President, along with an even warmer note to her, which I still have. Karis wore that jacket and used the blanket for the rest of her life.

When Karis became aware of what being a ward of the state of Pennsylvania meant, she took it very seriously. On walks in her wheelchair she would say of strangers walking by, “I owe that person . . . I owe that person . . . I wonder if that person knows that I’m alive because they pay taxes?” She worried about whether people would want part of their tax money going to pay her medical bills. She tried to live as economically as possible, and tried to find way to give back, such as tutoring children through a Pittsburgh program. Her heart was warmed one day when a friend told her, “Karis, I used to gripe and complain about paying taxes. Not any more, now that I know I’m part of the great community of Pennsylvania that is supporting you. It’s a privilege, not a burden!”

A friend took me to an upscale resale shop to buy me winter clothing. Another, on her death bed, bequeathed us her car, seventeen-year-old Maxi. Maxi transported us for a year before he died and became an organ donor. When we moved into an apartment, we were inundated with gifts from people’s basements and attics: a set of dishes and flatware, pots, pans, curtains, bedding . . . A friend called after a garage sale offering a leftover double bed. Somehow, from nothing, our apartment was furnished.

A friend who lived a few blocks from the hospital offered us parking at her house so we wouldn’t have to pay the hospital parking fees. A friend treated Rachel, Valerie, and me to a Christmas high tea to give us a delightful break away from the hospital; to say to our other daughters, “I see you. You matter too.” People’s generosity came in every color and variety. It kept us afloat.

And here’s my favorite story of God’s miraculous provision for us: During the 74-day ICU nightmare, the day before our youngest daughter Valerie had to return from Pittsburgh to Brazil for school, she timidly informed me that she needed a dress for the junior-senior banquet coming up at the end of the month. She hadn’t wanted to burden me with her needs while we didn’t know from one hour to the next whether her sister would still be alive. But I was thrilled to be able to do something for Valerie. We immediately left the hospital to go shopping.

However . . . the dresses were amazingly expensive! Worse than that, we couldn’t find one that Valerie liked. Most of them were not adequate for her school’s dress code; those that were looked like “grandma dresses.” We went from one store to another, growing more and more discouraged.

Finally, I said, “Val, I hope this won’t hurt your feelings, but what keeps coming into my mind is a Salvation Army resale shop that someone recently told me about. I haven’t been there before so I don’t know . . . but would you be willing to try it?” She was, and hanging there was a dress that was the exact color Valerie wanted—a lovely dress that seemed to have been made for her. It fit her perfectly! And the extra-special bonus: its tag was the right color that day to be half off. We paid five dollars for a dress that made Valerie look like a million dollars, just as the store’s lights were being switched off for closing at the end of the day before she had to board a plane to fly away from me. Val carried in her suitcase a tangible reminder of God’s love for her, and mine as well.

It’s no wonder that like Karis, I feel that our family owes more to more people than anyone else on the planet. But especially to the Lord, who cared for us financially through some impossibly stressful years. Praise God from whom all blessings flow!