19 ~ (March 27–August 25, 2004)
The Covenant Confirmed
Note from Debbie: Since Battle and Carol Brown were intimately involved with the day-to-day living reflected in this period of time, I sent the rough draft of this installment to Carol, requesting her point of view. She wrote out some of her perspective and I am including it in italic as a “second voice,” interacting with what I have written.
My friend Pat likes to say, "God's grace precedes my need."
This experience--when I actually bump into God in a moment of desperation, or stumble into something he has done while I was totally unaware of it--always catches me off guard. As if I keep forgetting how personally God cares, even about the small things that matter to us. I get tangled up and worried in what seems a terribly difficult situation, only to discover that the solution has been crafted by God using a series of people and events that only catch up to me at my point of crisis. That doesn't necessarily mean that relief will then come quickly, in my linear way of thinking. But suddenly, there is a surprise so precious, so marvelous, so tailor-made to fit the need, that I am stunned, awed once again by the personal love of God.
Our rescue from the 7 North hospital room by Battle and Carol Brown on March 27, 2004 was that sort of magical moment.
Through the friend of a friend of my sister, Carol and I had previously exchanged one set of e-mails. I (mis)understood from Carol that they were not in a position to offer more than a couple of days of housing at a time and that, only upon prior arrangement (it was impossible to predict when a transplant call would come). I sent off a "thanks anyway," and sat at the computer with my finger poised over the delete button. (I am a compulsive deleter.)
No. These were friends of a friend of my sister--maybe we could meet them sometime? So I dropped Carol’s e-mail into my "Pittsburgh" mailbox. And forgot about it. I continued to pray that God would provide housing for Karis and me in Pittsburgh, so that we wouldn't have to stay long term at Ronald McDonald House (the six months of recuperation we had been instructed to plan for after transplant).
(Carol) February 5, 2004: “Battle—I bounced you a lengthy e-mail from Tina Lockett early this morning about a family awaiting a rare transplant. Please let’s talk after you read it. Love you . . . bye.”
Work was nuts so my telephone voicemail to hubby had to be brief. Tina’s note was a collection of back-and-forth e-mails about a young Notre Dame coed who soon would need a transplant. She and her family would need a place to stay in Pittsburgh.
For months, I had been praying about this nearly 100 year old Victorian we call home. Battle and I had known it was a God-sent gift when we married ten years ago. But with the boys grown and living on their own it seemed too much space for just the two of us. Maybe it was time to sell and downsize.
The situation with Mom had been deeply troubling as well. Following her stroke ten months earlier, my father had decided the facility where she had been receiving rehab would now become her permanent home. It was located just ten blocks from our home, so I visited pretty regularly. It soon became clear that under-staffing and too much personnel turnover resulted in some scary gaps in her care. Some well-intentioned sibs encouraged me to be less present with her. The only way for me to stay away was to MOVE away. I kept asking God for a sign.
Then we opened Tina’s e-mail.
After discussion and prayer, we wrote to Debbie on February 19th saying we’d like to help. We had already used the recently renovated third floor to put up missionaries and clergy visiting Pittsburgh. We agreed that the Kornfields would be a good fit.
When I found myself at the end of my known options in the hospital room that day after the transplant had been cancelled, while Karis slept and various people waited to be told where we would stay in Pittsburgh so that they could organize Karis's home care, I suddenly remembered this e-mail from people whose name I had forgotten. Hmm, friends of a friend of my sister's . . .
I dug through our luggage to find my computer, searched through the contents of the "Pittsburgh" mailbox (now crowded with multiple random e-mails), and found the note from Carol, hoping there might be a phone number. Nope, but there was a name: Battle Brown. Could that be right? Was it really a name?
I went to the nurse's station and requested a Pittsburgh phonebook. Sure enough, there it was: Brown, Battle. Dare I call? How could I call complete strangers, with no prior warning? "Hello, you don't know me, but could my daughter and I come and stay with you? Just for a couple of days until there is space for us at the Ronald McDonald House?" Carol listened to me try to tell my story and said hmm, give me a little time to think about this. I'll call you back.
It was actually Battle who called back, giving me directions to their house. My foggy brain could not track what he was telling me. When there was a pause, I said, "When I find a taxi, do you think you could say all of that over again to the driver?" "Oh, you don't have a car? Well then, give me a little time. We'll call you back."
The next time the phone rang, it was Carol, explaining to me the things she had scheduled to do that day and when she thought she could squeeze in a trip to the hospital to pick us up. She was to read the Scripture at the Saturday evening service and then she would skip out and come get me so that we could get back to the church before dinner. Could we hang on at the hospital until then?
I reported at the nurse's station that I now had an address they could use for the home health agency: “It's this one right here” (underlining with my finger the name and address in the phone book).
Looking at me like I was perhaps not totally in control of my faculties, or maybe had just randomly picked a name out of the phone book, she took the book, dialed the number I indicated, and asked whoever answered the phone, "Do you know someone named Debbie Kornfield?. . . I see. . . But you're willing to have her daughter stay in your home? And have medical equipment and supplies delivered there? And have your address registered as the Kornfields' home address in Pittsburgh?"
Battle and Carol had not even met us yet.
With one complication and another, being a Saturday, the home care arrangements took too long for Karis to be released from the hospital that day. But Carol did come and pick me up, as scheduled, along with the luggage that I managed to drag down to the ER entrance. We drove to her church, just a mile or so from the hospital, where folks were enjoying a gourmet dinner. Within minutes of meeting Carol, I was being warmly welcomed and fed by a whole group of new friends, who acted as if it were the most natural thing in the world for Carol to bring in someone off the street.
By the time my tummy was full, I had a hard time keeping my head out of my plate. Carol noticed and hustled me off for home, where she tucked me in to a wonderfully comfy bed. I vaguely recall her asking what we liked to eat for breakfast, and telling me that I could use Battle's car the next morning to pick up Karis from the hospital in time for church.
Church. It was so beautiful--God was so Present--that Karis and I wept through most of the service. We were sitting near the front, in Battle and Carol's normal pew, and I guess one of the pastors noticed that we were crying. At the end of the service she came to us and asked whether we would like prayer. That prayer sealed our sense that, in a very special way, we had found a family. Only later did we realize that this pray-er was Tina Lockett, the friend of my sister’s who initially had contacted the Browns.
Battle and Carol took us home, gave us a light lunch and settled us for a nap, inviting us for dinner later on. When we woke up, Karis and I took a walk, all the way to the lovely Presbyterian church in East Liberty. The fresh spring air helped blow some of the confusion of the events of the last two days from our brains. At dinner with Battle and Carol, we finally started to get to know one another.
Early the next morning, Ronald McDonald House notified me that they had room for us. I caught Battle on his way out to work to tell him—might we borrow a car to transport our things? A puzzled look came over his face as he said, "What does Ronald McDonald House have that we don't have? Don't you want to stay here?" I couldn't quite grasp what he was saying, that he and Carol had decided to let us stay on as long as we needed. While I was still trying to absorb this, he ran off to work. (Carol starts work very early in the morning so had left several hours before.) I still didn't quite understand what was happening, but called RMH and cancelled our reservation there.
That afternoon, Karis received another call for transplant! I notified David and our extended family. Carol was home from work, but had a commitment to visit her mother. She dropped us off at the hospital but then called Battle, who came to the hospital from work to keep us company until Karis went into the operating room. He was amazing. He entertained Karis with stories, read Scripture and prayed with us, and even chatted with the head surgeon, with whom he had previous acquaintance!
(CAROL) As I watched what would become countless hospital vigils that Debbie kept at Karis’s bedside, I believed God answered one of my burning questions about my mother. A failed attempt to get my sibs to support a private duty aid for Mom on the unit she must now call home deeply eroded my confidence in how I might serve. “Lord, what’s my job? Clarify my role with her. Teach me how to deal with (once close) family members who are angry about my involvement in her care.”
As I observed Debbie’s grace in the role of caregiver, God seemed to be saying to me, “Come alongside your mom in the same intimate way Debbie comes alongside Karis. Be with her in this place. Read to her. Pray with her. Be available to those who care for her.” I told Battle, “I am convinced we have heaven-sent messengers living on the third floor.” Funny, isn’t it? Watching one mother’s care for her daughter helped shape this daughter’s care for her mother. Thank you, God, for opening my eyes.
Once Karis was whisked off to the operating room about 10 p.m., Battle went home, and I settled into the empty surgical waiting room to begin my overnight vigil. Estimated surgery time was 12-14 hours. My husband David called to say he was boarding a flight in São Paulo and would arrive the next morning. My sister Shari called to say that she and her daughter Elizabeth Joy had driven from Tallahassee to Atlanta to catch a plane to Pittsburgh, and should arrive at the hospital around 1:00 a.m.
An hour or so went by, and suddenly one of the surgeons walked into the waiting room. "The surgery has been cancelled. There was a problem with the donor intestine. Karis has been taken to the recovery room and you'll be able to see her in a few minutes, but she should probably spend the rest of the night here in the hospital." Karis had been fully anesthetized, and they had already installed a second central line, an arterial line, and several peripheral IVs. Just as they were ready to make the first incision, the phone rang in the OR telling them to wait. Intense discussion with the team that had gone to "harvest" the donor organ in Louisiana led to a decision not to risk using that intestine.
My husband was en route from Brazil. My sister and niece were en route from Florida via Atlanta. And Karis was en route back to 7 North, sans transplant.
That experience strengthened our belief that the transplant could actually happen any day. Two calls within three days! In addition, a message came from a friend in Brazil: she believed God had told her that the transplant was going to happen in March. We decided to wait out the two days that were left in March and see what happened. Then we would decide what to do. Take Karis back to school at Notre Dame? Stay in Pittsburgh? Go somewhere else??
Over the next few days, Shari and EJ, who had lived in the Pittsburgh area for several years, introduced us to the city and to some of their friends. EJ's friend Emily took Karis to a meeting of a group called Three Nails, which quickly became a second family for her (if Ascension was her first Pittsburgh family). Shari and EJ's cheerful, practical support helped us recover from the shock of two cancelled transplants, and start to feel our way through the confusion of what to do next. David’s visit allowed him to meet Battle and Carol and see our living situation in Pittsburgh. (Dave and I hadn’t seen each other for almost two months.)
The last hours of March went by and April wandered in without another transplant call, proving our friend’s prediction to be nothing more than wishful thinking. But Karis was too exhausted, too sick and weary, too far behind in her classes at ND to seriously consider returning to school. Believing that another intestine could become available for her at any moment, we decided to accept the Browns' offer of hospitality and stay on in Pittsburgh—always alert for that next phone call, always trying to plan ahead. I wrote to my other kids, "The transplant could happen today, or tomorrow, then six more months for recuperation would take us to October, so Karis will go back to school in January. I guess that means we should plan to have Christmas in Pittsburgh . . .”
With Shari and EJ's visit, the Browns were initiated right away to the fact that Karis and I were attached to a large extended family. Their hospitality never wavered, not only to us but, over the next months, to a sizeable portion of our family and friends, coming to Pittsburgh from California, Colorado and Connecticut, Iowa, Illinois and Indiana, Mexico and Michigan, Bolivia and Brazil, from DC, Alabama, New Jersey, and Florida. Each one was warmly welcomed to bed and board in Battle and Carol’s three-story antique-graced Victorian home, and sent away with a blessing.
“God’s grace precedes my need . . .”
(Carol) More guests! Now we’re talking!! I had forgotten how wonderful a truly full house can be. It must have something to do with being one of twelve kids. Thank you, God, for this temporary family to fill the void. Please heal the rift between my sibs and me.
Every time I awoke in that lovely comfy bed, I gave thanks for the Browns' kindness, and prayed for God to bless them richly in return.
From the marvelous perspective of hindsight, it's easy to see that God did good things during those long days--which slowly piled into weeks, and then months--of limbo. But living through them was not easy for me. I love to have a sense of order, of making a plan and following it. In this situation, I could only prepare for a few hours at a time, knowing that even those small plans could be interrupted should a transplant call come or should Karis not feel well or should a clinic visit take longer than anticipated (they always did). I wasn't in control of much of anything.
As day followed day with no call from the transplant team, Dave and I agonized over what we should do, and how best to care for 16-year-old Valerie. Should everyone move to the US? Should Dave take a leave of absence from his work in Brazil? Since Dave traveled so much, should Valerie come to live with us in Pittsburgh? But she didn’t know anyone in Pittsburgh--what kind of life would she have there once Karis was called for transplant? Or should she live with another family in the US—maybe some of her cousins--that might give her more stability? Once Val made it clear she wanted to stay in Brazil, the next question was, who should she live with during the majority of the time that her father was either traveling for his work or visiting Karis and me in Pittsburgh? My inability to be with Valerie was one of the toughest things for me about the whole scenario. I wished I could bi-locate, like Padre Pio.
We decided that David would continue his work in Brazil, and would visit Karis and me whenever he could. This decision we reevaluated with some frequency over the next months and years, but always came out in the same place. Valerie stayed with PACA-related friends, Ted and Claudia, during the school week, and traded off between several church-related families for the weekends.
God did so many good things. Most importantly, Karis was able to rest, and take life at a pace she could handle. Within a few weeks of arrival in Pittsburgh, she was in better shape physically and, I think, emotionally, than she had been for a long time. We even started wondering whether she really needed a transplant. (Her doctors never wondered.) She was sick about half the time (not well enough to go out and do things). But that meant about half the time she was well enough to enjoy discovering the charms of Pittsburgh and exploring the lovely nearby state parks. After we bought Karis a bicycle for her 21st birthday in May, a friend loaned me one, too. Karis was able to finish the incompletes that were still pending from her fall 2003 semester at ND. She had time to develop friendships in Pittsburgh. We began to feel a genuine sense of community, which would prove of inestimable value in the months to come.
I reflected often on what a privilege it was for me to have this time with Karis, relatively free of medical crises and external stresses. Karis is such a delightful, interesting person that I could not have asked for a more pleasant fellow lady-in-waiting. At that time her care—IV's, TPN, oral meds, weekly blood work and doctor’s visits—was relatively simple.
At the end of May, when Karis spent a night in ICU with high fever and bottomed-out blood pressure, we met a Brazilian family whose two-year-old son had just had a transplant, and developed a long-term friendship with them. Over time we met other Brazilian families and were able to help each other "matar saudades" (deal with how much we all missed Brazil). I translated a good portion of the transplant training materials into Portuguese, to facilitate future communication between the hospital staff and Brazilians.
Despite all of these blessings, as days turned into weeks of waiting, I battled with confusion and frustration. Were we in the wrong place, doing the wrong things? Was God trying to teach me something that I was just too dim-witted to learn?
It seemed that God had systematically stripped away much of what I had once taken for granted: My life with my family in Brazil, in the place we had adopted as our home. My house, my "normal" roles of wife and mother, my church and friends . . . the part I had played on our mission team, in ministry, and at our children's school. The sense of knowing who I was and what I was supposed to invest in. Little things I had enjoyed, like playing the flute on the church worship team, playing soccer with a group of ladies on Thursday nights, cheering my kids and their friends at their games, concerts, and plays, watching God work miracles in people's lives through healing prayer.
I struggled to maintain my vow to bless the Lord every day. Indeed, there was so much to be thankful for, as God met our needs in Pittsburgh, but often I was merely obedient, not truly grateful. The rhythm of life demanded little of me, compared with the intensity of life in Brazil, but living graciously within its constraints was one of the hardest things I had ever done. In Pittsburgh I was but a necessary extension of Karis; that seemed to define my identity. I had to come to terms with how much I missed being "somebody" in Brazil--invited to speak at conferences and churches, sought out for counseling and teaching, leading small groups, respected as the wife of a Christian leader.
As I griped to God one morning, he answered me very specifically from Psalm 37, with what I took to be my "marching orders" for Pittsburgh. These instructions shaped and strengthened and anchored me for the duration of our time there. (Who could ever have guessed that we would be the Browns' third-floor guests for two and a half years?!!)
1. Trust in the Lord. (He's in charge. He has a purpose and plan, and will fulfill them.)
2. Do good. (Opportunities show up every day, right here around me.)
3. Dwell in the land. (Settle down, get involved, start putting down roots, stop being just a visitor. You are not displaced. You are "placed.")
4. Enjoy safe pasture. (What the Browns and Church of the Ascension and loving friends have provided through their financial help. Also, savor this "safe" time, before Karis is thrown into the risky world of transplant.)
5. Delight in the Lord. (Relish time for prayer, study, meditation; the pleasure of worship at Ascension.)
6. Commit your way to the Lord. (Let him be Lord! Listen for his voice and follow him. Consciously give up to him your compulsion to control.)
7. Be still before the Lord. (Stop resisting; accept this situation. Find him here.)
8. Wait patiently for him. (For the working out of his intentions for Karis.)
9. Do not fret. (Take “worry” out of my job description; instead, intercede. Take action wherever I can and leave the rest to him.)
10. Hope in the Lord. (For a good outcome for Karis, for Val, for David and me, for other transplant patients we’re getting to know and care about . . .)
11. Give generously. (Time, service, prayer, $$, as people have been so generous to us.)
12. Wait for the Lord and keep his way. (Discipline; faithfulness in small things.)
(Carol) Confusion and grief about Mom’s and Karis’ situations, coupled with significant changes both at work and church, attended most of Debbie and Karis’ time with us. During one of my visits with Debbie on the third floor, I spied a 12-point spiritual to-do list on the fridge. I studied it and wanted to scream, because items 7-8-9 were so out of reach! Convicted (again), I found I could pray only for God’s mercy. . . probably a good starting place.
In July, the question of where Valerie would live for the next school year became more urgent. I asked her to choose three families that she would enjoy living with in São Paulo, and contacted each one. None of the three was able to say yes. As the beginning of the new school year (August 4th) drew close, I asked God very specifically for help. A name popped into my mind, someone I had met, but didn't know very well, a young couple with a two-year-old. What sense did that make? I had assumed Val would live with one of her friends.
But my conviction grew that I should at least contact this couple. I wrote to a friend who knew how I could get in touch with them. And wouldn't you know, they had been praying that their house, too large for their small family, would be used by God to serve someone else in need of a home. We didn't imagine that Valerie would live with them (except for brief intervals when her dad was at home) for the next two years, delighting in their little Ethan, and even getting to enjoy their adoption of a darling Brazilian baby.
"You would not have called to me unless I had been calling to you," said the Lion (C.S.Lewis, The Silver Chair).
On August 14th, Karis finally received another transplant call (the first one since March 29th). But--you guessed it--we went through all of the pre-surgical rigamarole only to have that one also cancelled.
On August 23rd, I read a magazine article about a boy who had died on the operating table. My heart filled with fear, which grew to panic. I was sure that never again could I release Karis to an operating room. I couldn't sleep, worrying about what I would do when another call would come. I wanted to pull Karis out of her bed and flee the city. I wanted never to think about transplant again.
I finally dozed, fitfully, and awoke suddenly the next morning to a voice that seemed to have spoken audibly: "Get up, get dressed, and go to church." It was 7:10 a.m. I knew that Ascension had a Wednesday service at 7:00 a.m., but I had never attended. I must be going crazy, imagining things. By the time I could get there, the service will be practically over. I turned and snuggled again into my pillow. The voice came more urgently. "Get up, get dressed, and go to church." All right, OK, I heard you! (I really must be going crazy. Too much stress . . .) I threw on some clothes, scribbled a note for Karis, ran out to Battle's car (he took the bus to work so that we could use his car), and drove to church as quickly as I dared. I snuck in just in time to hear the very last line of the sermon: "Do not be afraid."
I dissolved in tears and, once again, was blessed and supported by the kindness and prayers of Ascension friends and clergy.
Three hours later, the transplant call came. For the transplant that actually happened.
As it turned out, those words "Do not be afraid" would mean a whole lot more than just, "Let Karis go into the operating room."
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