13 ~ (1999—2001)
A Stiff-necked People
Note: In recent years, David has been with Karis and me as often as possible, participating in her drama, fully supportive of both of us. We have treasured each day that we have together. But it hasn’t always been like this, and as I talk with other parents caring for a chronically ill child, I know that our struggle has not been unique. The divorce rate, already high in society at large, is much higher among couples dealing with these particular stresses. I would prefer to skip or gloss over this dimension of my journey, but I keep feeling called back by the thought that someone might read this who could find some encouragement in it, since that’s the way God seems to work—by his grace, bringing some good out of our messy and sometimes tragic little stories. I write this with David’s blessing. I am telling my story, not his. He has written part of his own story in a book on marriage published in Portuguese (Casamentos que se fortalecem por meio da mentoria, Editora Vida, 2006). You will notice that our marriage stresses are not “resolved” during the time period represented in this installment. Sometimes things just aren’t that simple.
It was a beautiful late afternoon in November of 1999. Our son Dan was away at college. Our younger girls had played all day in the warm waves that bathed the soft sand of this typically lovely Brazilian beach. Karis hadn’t felt well enough to swim. Tired now, Rachel and Valerie were inside playing games with Karis, and Dave invited me to go for a walk. We ran in and out of the little waves that lapped up the beach as the tide came in, and talked enthusiastically about many topics, most of them related to the ministry we both loved. Reaching a large rock formation on the far curve of the bay, we sat for a while watching the city lights begin to twinkle on as the soft colors of sunset faded into a gentle evening.
“David,” I ventured. “I’m really getting concerned about Karis. She’s not getting better, and I’m having a hard time dealing with this . . .” Glancing at David as I tried to express the fear and pressure I was feeling, I could tell I had lost him. Wherever his thoughts were, they were not focused on what I was trying to say. I stopped talking and just watched him. His far-away expression did not change, nor his gaze shift. Tentatively I touched his shoulder, and slowly he turned his attention back to me.
“Did you hear anything that I said to you, Dave?” I asked.
“No, I’m afraid not,” he said.
I didn’t know how to repeat what had been so painful to talk about. Our conversation stumbled around and a few minutes later, Dave said, “Well, time to be getting back to the girls.”
“You go ahead then,” I said. “I’m going to stay here for a little while.”
David went back to play with our daughters. I sat on the rock, too numb even to weep, confused, lonely, feeling all of the weight of that part of parenting that seemed too—what? too demanding, too threatening, too binding, too limiting, too frightening . . .??—for David to share with me. Why wouldn’t he even let me talk with him about how it felt to me to care for Karis? Why, when we had made so much progress in other areas of our marriage? Why did we always stalemate with this? Why was the rock wall that impeded our communication about Karis just as high and wide and impenetrable as always? What was I supposed to do with this burden that felt too heavy for me to go on carrying alone, but seemed unshareable?
No answers came to me that night. Eventually, I wandered slowly back to join the family. They were so involved in the game with their dad that they didn’t seem to notice when I walked in. I must be making things up, I thought. See—everything’s fine. I’m the only one who thinks there’s a problem here. Just shake it off and don’t let it spoil the weekend.
On Monday morning back home in São Paulo after our getaway beach trip, Dave flew off to northeast Brazil for a conference, the girls returned to school, and I headed to the supermarket. As I selected groceries, my mind went back to our aborted conversation at the beach, worrying away at my perplexity like a dog gnawing a well-worn slipper. How could I get rid of the knot in my stomach that accompanied every thought of Karis? Why couldn’t I develop more robust faith, live in genuine confidence and joy, STOP FRETTING?!
How about this, I said to myself: Let’s zero out the concern and worry, revise our preconceptions and choose to live in victory: Karis is fine! OK, that sounds like a more comfortable way to live. You know you tend to overreact. Just have more faith! Treat Karis just like you treat the other girls. God is the Healer. Believe in his healing. Walk in faith and victory. Smile and keep your chin up. Of course you can accept that speaking invitation, because Karis will be fine. She IS fine. Decree it, believe it, own it.
Back home, as I dragged bags of groceries out of the car, the phone rang. PACA. My self-pep talk burst and dissolved into sudden tears as the voice through the plastic receiver told me that Karis had fainted at school. “She’s having so much diarrhea . . . We think she’s dehydrated. We tried to reach you before . . . Can you come get her?”
Dumping the groceries on the kitchen counter, I ran out to the car and raced to the school. A PACA graduate who happened to be back visiting was conscripted to help carry Karis to my car. To her utter chagrin, when he picked her up, Karis bilious-vomited all over him. I took her to the ER where she was rehydrated with IVs. Watching her come back to life, I wondered idly how many times I had watched this miracle take place: the wilted flower rejuvenated, color and consciousness and energy steadily replacing drooping lethargy.
Should I take her home, or admit her to the hospital to be sure she’s stable? Funny how the hospital folks had started consulting me about what to do with her. What had happened to the illusion of security I once enjoyed, when I still regarded doctors as the next thing to God and their judgment unquestionable? And by the way, what had happened to that briefly-felt confidence I had manufactured in my self-talk about Karis just that morning? What about my attempts to pray, and trust, and cast all my burdens on God?
When David returned from his trip, did I comment on this particular incident? I don’t remember. The only part of it that was noteworthy was Karis throwing up on the PACA graduate. Otherwise, it was just one more in a long series of slightly more- or less-serious events, par for the course in Karis’s life. Dave was totally, joyfully involved in real and very productive ministry, all over Brazil. These little episodes hardly seemed worth mentioning to him.
But the more I kept to myself, not just the incidents themselves but my own reactions to them—grief, fear, growing desperation--the more we walked in separate worlds. The harder it became to bridge the gulf between us, the easier it was for me to nurture resentment. “He doesn’t care,” I told myself from time to time. “If he cared, he would ask. If he doesn’t ask, he doesn’t want to know. Well, maybe he sometimes wants to know about Karis, but he doesn’t want to know about me and how hard it is for me to deal with her illness.”
Of course, when Dave was home, he saw and experienced a certain amount of what was going on with Karis. He loved to try to chart and define her symptoms. He wanted her to keep a daily record of severity of symptoms on a 1-10 scale in five categories: pain, distension, diarrhea, vomiting, obstruction. She hated 1-10 scales but she loved her dad and tried to humor him. David would periodically gather the statistics she gave him and send them off to Dr. F in Indianapolis, hoping for some magic pronouncement or prescription that would fix her. Other than the symptom-tracking system, he and I didn’t talk much about Karis. We just tried to live life as normally as possible in, over, and around her dis-ease. If we ignored it, maybe it would get tired and go away.
We lived this way for a long time. Sometimes there were bigger crises, as when Karis almost died from a catheter infection, her fever soaring within an hour to higher than the thermometer was calibrated to measure, gasping for breath, her body purple and shaking so much it was impossible to get an IV line into her . . . But mostly it was the daily misery of pain and nausea and exhaustion, gradual loss of weight, gradually more frequent absences from school and other activities.
One bright aspect of all of this for Karis was how much her little sister Valerie loved to care for and serve her when she was sick. Since she was small, Valerie had involved herself with Karis’s illnesses. Val enthusiastically learned to manage even the most technical aspects of administering TPN and other medications, doing dressing changes, keeping Karis entertained and as comfortable as possible. We weren’t surprised when Valerie started talking about wanting to be a nurse when she grew up.
Along the way, I made a startling discovery: Karis and I were significantly different in personality! For too long, I treated Karis as I would wish to be treated if I were sick: “protecting” her from people so that she would have quiet and privacy for resting and getting well. But Karis is an extrovert: she actually gains energy from being with people! She was much happier when I finally figured out that when she didn’t feel well, she wanted visitors, and would actually get better faster if I let her friends in! Whether at home or in the hospital, I learned to expect and welcome frequent visitors.
By the time Karis was a senior in high school, it was hard to maintain a sense of normalcy. I withdrew from almost all ministry so that I could be available to her. That fall I became embroiled in a painful, head-on conflict between our beloved Dr. G in São Paulo, and Dr. F in faraway Indianapolis, USA. Dr. F thought Karis needed surgery, and didn’t want to continue giving us advice long-distance unless we would take her to Indianapolis so that he could examine her directly.
Dr. G adamantly opposed further surgery. He felt that removing any more of Karis’s intestine would only complicate her situation. His solution was that she should stop trying to eat and just depend on TPN (nutrition through a central line into her veins), a lifestyle prescription that was very tough for Karis. Doing TPN at home was a brand-new concept in Brazil, and none of the little niceties were available there, like the portable mini-pumps that can be carried in a backpack. The twelve hours per day that Karis began to spend on TPN limited her to a leash the length of the IV tubing that connected her catheter to a hospital-size pump and pole. We turned our first-floor guest room into a bedroom for her so that she wouldn’t have to climb stairs, and could more easily participate in family life. She couldn’t go out in the evenings. When she ate, she got sick. When she didn’t eat, she often got sick anyway. Sometimes she decided to eat, especially at social events, even though she knew she would be sick. In the course of her senior year of high school, Karis missed fully half of her class days.
“This is awful,” I would try to say to David. “There has to be a better way than this. But how can I reject Dr. G’s advice after he’s been so good to Karis? And how can Dr. F know what to say unless he examines her himself?” To the degree that his work pressure allowed, David would engage in the issues and problem-solving with me, but seemed incapable of feeling my pain, my anxiety, my desperation to make the “right” decision. Talking about Karis was an isolated issue for him. He always had many other things on his mind: an article to write, a conference to prepare for, a trip . . .
David worked so hard, and did such good and valuable and appreciated work. How could I burden him with my own uncertainty and anguish over what to do with the life of one little girl, when he was involved with helping hundreds of people? But, my resentful heart said, if he couldn’t care adequately for his own wife and daughter, what did the rest of it matter? What if we were to invest all the money required for the trip from Brazil to Indiana, quite a big deal to us on a missionary budget, only to be told that Dr. F couldn’t help Karis? What if Dr. G was right, and further surgery would only harm her in the long run? What if we lost what had become, to us, more than a professional relationship with Dr. G, a precious friendship? What if, what if, what if . . .
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