5 ~ (1984—1985)
Bricks Without Straw, Part 1
For six marvelous months, Karis thrived. Hospital days faded into a distant memory. Karis’s scars and ileostomy were the only reminders of the traumas of those first weeks of her life.
Abruptly, that magical time ended, with Karis vomiting bile on New Year’s Eve. We greeted 1984 back at Children’s Hospital in Chicago. Karis’s intestine had shut down completely, just like in her first weeks of life. She couldn’t eat, and had to go back on TPN. When Dr. R told me he didn’t think Karis was going to live, Dave was traveling in Bolivia. He aborted his trip and caught the next flight home.
Karis was eight months old when another major surgery was performed to remove her “dead” colon and another section of her ileum, and a new ileostomy was created on the opposite side of her tummy. This time, Dr. R made her intestine into a “Y,” with one branch going to her ostomy and the other to her rectum. If it worked, she would, he hoped, eventually be able to get rid of the stoma. But her intestine didn’t function at all, from either side of the “Y.” Karis recovered from the surgery, and once more thrived on TPN, but tolerated nothing orally.
It seemed we had stepped back into the dilemmas of the previous June. We were baffled. How could our miracle baby have such a complete relapse? Hadn’t God healed her? Some friends considered that our faith was being tested, and that we had to stand firm on the certainty of her healing. I understood the words, but the concept simply didn’t make sense in my head. If her intestine was healed, it would function. I couldn’t fathom God playing that kind of game with us.
Once more, the rhythm of our life became dissonant. Day followed day, with no apparent progress in any direction. Again our son Danny was shifted from house to house for day care, so that I could be at the hospital with Karis.
Believing that sick children needed their families around them, the hospital had a liberal visiting policy. One day I decided to try taking 2 ½ year old Danny with me to the hospital. If it worked, I wouldn’t have to leave him every day. We walked into her room and I settled Danny in a chair with some books while I sorted out Karis’s various lines and got her up into a stroller, all the while talking over my shoulder to Danny about the fun walk we would have to the large aquarium on another floor. When I turned around, the books were still there, but Danny was not.
I raced down the hallway, looking anxiously into each patient room. The unit was a large square, with the nursing stations and treatment rooms in the middle. As I came around the third corner, I saw Danny emerge from a patient’s room and run into an open elevator. By the time I got there, of course, the elevator was gone—and with it a curious toddler, loose to wreak havoc on any of twelve floors.
That thought made me wonder what he had been doing in the patient’s room. Danny was definitely a “hands on” kind of a guy, and when I yelled for a nurse to come and investigate, she discovered he had turned off a child’s oxygen. The nursing staff rallied to check on each one of their little patients, while I notified hospital security, then went back for Karis, who had been “abandoned” in her stroller, and set off to search the hospital. I couldn’t think of any way to do it except start at the top floor and work my way down, advising the nurses on each floor to be on the lookout for a little blondie intent on discovery.
I don’t remember how many floors Karis and I circled before we heard an announcement on the hospital PA that left me weak with relief: “A little boy named Danny says he would like to find his mommy. He is in the security station in the basement.”
Danny was having a fine time with the security officer, and didn’t seem particularly interested in finding his mommy. That was the last time I tried to take him to the hospital by myself. So much for family togetherness!
One memorable morning I walked into Karis’s hospital room to find her, now 9 months old, sitting in her crib delightedly decorating her sheets and the walls with pretty red blood spurting out of her IV line! She had managed to pull the IV apart at one of its connections, and only God knows how much she would have bled out if I hadn’t arrived when I did. I yelled for the nurse and we had just gotten everything cleaned up when Dr. R walked in. The nurse was literally shaking in her shoes. She told me later that had it been Dr. R who discovered Karis playing with her blood, she would have been fired and would never have been able to get another job in that hospital. The “wrath of Raff” was legendary.
After several weeks, some intestinal function returned through Karis’s stoma. Her nurse Donna had the idea of trying half-strength Pregestimil (a predigested formula) by slow drip through a nasogastric (NG) tube using a kangaroo pump, and that’s how we were finally able to take her home. At least she was off of the dreaded TPN, though her central line was left in place, just in case she should need it again. She had been in the hospital for almost nine weeks.
This homecoming was not the unadulterated joy that we had experienced the previous July. I sat in my living room while box after box of medical supplies were delivered by home health care, and felt totally overwhelmed. Karis was no longer an infant in a cradle. She was mobile, active, curious. She never crawled, but scooted on her bottom wherever she wanted to go. We said it was because she couldn’t stand to have her head down—she didn’t want to miss a thing. She wore out the seat of all her little overalls and sleepers.
The problem was that now she was attached by a plastic tube to a pump on a pole. She was on a leash. Karis hated the NG tube. We had to use a lot of tape on her little face to keep it in place, and even so, when she was upset, she managed to pull it out. It seemed that by pulling it out, she thought she was punishing me for whatever was making her unhappy. But then we had to go through an even worse ordeal putting it back in.
Besides managing the NG tube feedings, I had to care for her central line, even though it was capped off. In those days, when central catheters were relatively new and frightening because of their potential for easy infection straight into the blood stream, protocol called for irrigating the catheter twice a day, and changing the dressing once a day. This was a totally sterile procedure that took me about 45 minutes each morning. I had to bind Karis in a sheet, with her chest exposed, and pin her to the bed so that she couldn’t move and contaminate her line. Of course she hated this confinement, and we eventually developed a routine of fun songs that we would sing only during the dressing change.
For the whole of this procedure, I had to leave Danny locked out of the room. I would try to leave him happy with toys and Sesame Street, but it never worked. He would spend the entire 45 minutes pounding on the door and crying.
One morning, part way through the dressing change procedure, the pounding and crying ceased. Finally, I thought, he’s learned that he just has to entertain himself for a little while. When Karis and I emerged, though, Danny wasn’t playing with his toys or watching TV. A quick search of our little home came up empty. Still in my PJs and slippers, leaving a whimpering Karis behind, I ran outside and all the way around our large back yard and garage. No Danny. I ran to the end of our block and back down the other side, then started on side streets. An elderly gentleman enjoying the early-morning sun on his porch, told me that he had seen a little blond boy pedaling a red plastic car down the hill past his house.
I found Danny on the other side of a very busy street, up a little incline sitting by the train tracks in his little red car. “I just wanted to watch the train,” was his indignant explanation to my panicked scolding, as I pushed him back up the hill toward home.
In addition to the NG tube and the central line, I had to care for Karis’s ileostomy. If it started itching or irritating her, Karis would pull it off, and the mess that ensued fascinated her. It was great for smearing or finger-painting. The combination of that with the necessity of keeping her central line dressing clean was not a happy one. Nothing ever came out of her rectum.
One day when I was cleaning her up, Danny pulled up his shirt, gazed down at his tummy, and asked, “Mommy, when am I going to get my ileostomy?”
I discovered that I had little tolerance for hearing my girlfriends gripe about how much work their perfectly normal children gave them. My lifeline was Karis’s nurse Donna, who had made herself available to me by phone 24/7. When I was completely overwhelmed and exhausted, when Dave was traveling for work, when I didn’t know how to solve a technical problem or how to interpret Karis’s symptoms, when I felt isolated and alone within the small little world of surviving day to day, I could call Donna. Just knowing that I could call her, meant so much that I seldom actually did. But there were times when her cheerful, encouraging spirit was literally a lifesaver. Donna had deep faith in God, and encouraged me to trust and not give up. She helped me to decide when things were bad enough that I would have to risk the “wrath of Raff” and call the doctor. Dr. R always scolded me, always acted as if it was my fault that Karis was sick again. Almost every encounter with him, even by telephone, left me in tears.
Gradually Karis was able to eat again, and we celebrated Easter by pulling out the NG tube for good (so we thought) and sending the kangaroo pump back to the medical supply company. We made a trip to Chicago for removal of her central line. The surgeon, however, overlooked a plastic hub, which remained as a lump under the skin of Karis’s chest. On our next clinic visit with Dr. R I asked him to remove it, because it would surely bother Karis when she was older. Dr. R scoffed, “She’s not going to live long enough to care about that!” But he grudgingly called for anesthetic, scalpel, sutures . . .
We settled back into normal life.
“Normal,” however, took on a new definition for us. Over the next 2½ years Karis was hospitalized 21 times, sometimes for several weeks at a time. One day when she was discharged from the hospital, she vomited green bile in the car halfway home from Chicago. We had to turn around and re-admit her. Ronald McDonald House in Chicago became our second home. Karis had more surgeries and occasional periods back on TPN. When the doctors thought she wouldn’t make it, each time God gave her back to us.
How could we make sense out of what was happening? Well-meaning friends speculated on a range of possibilities. We had taken too much for granted and had stopped exercising our faith. We didn’t have enough faith. There was secret sin in our lives and God was punishing us. We were like Job, being tested in some cosmic drama. (I particularly resented that one, because Job’s children all died, and I certainly did not want that to be my case.) Surprisingly often, we heard people say things like, “God chose your family to care for Karis because He knew you could handle it”—as if there exists a quota of babies with birth defects to be distributed to those families deemed most “worthy.”
We were put up on a pedestal or we were judged and found wanting. We were heroes or we were villains. None of these speculations was any help or comfort to us. How could one ever know what would be “enough” faith? Of course we were sinners—for which of our sins was our little daughter being so severely punished?
And oh yes, there was this one too: the reason Karis was suffering was that we had trusted men rather than God by taking her to doctors and hospitals and permitting surgeries, tube feedings and catheters. If we had only trusted God and kept her home, he would have confirmed the healing that he had indeed accomplished when she was two months old, and she would not continue to have problems. We had failed the faith test, so whatever happened next was “our fault” not “his”—as if there existed a quota of blame that had to be handed out.
Everybody seemed to have a solution to Karis’s problems: something she should eat or drink or take, somewhere special we should take her for prayer, some prescribed way that we should increase our faith and take hold of God’s promises. We heard over and over again that someone’s friend’s child had a problem “just like Karis” and what they did was . . . (Never mind that Dr. R told us that only in the last year, with increased use of TPN, had any other babies like Karis survived long enough to be identified.)
I learned not to feel hurt by a dismissive “Don’t worry, everything will be all right” pat on the shoulder. I came to understand that it likely meant the person was carrying heavy burdens of his or her own and didn’t have resources right then to take on our concerns. I discovered there is a helpful way, and a not-helpful way, to use Scripture. It largely depends on whether the person is actually able to enter into our drama with thoughtful prayer, and actually receives from God a Scriptural passage to share with us—or, whether he or she is most interested in making him or herself feel better by passing out verses like Band-Aids: “All things work together for good,” “Be anxious for nothing,” etc.
Those who did help me, profoundly, were friends who, without judgment or advice or the need to come up with “wise” words, had the courage to just let me talk and cry over what I was feeling and struggling with. I still remember, more than twenty years later, the comfort given me by a pastor who, when I confessed that I felt I was running out of faith, said very gently, “Then it’s time for the Body to have faith for you.”
In my ongoing struggle to maintain confidence in God, I held in my mind a living illustration of trusting even without being able to understand. Too small to comprehend the reasons for the various painful interventions she had to undergo, Karis would permit the doctors and nurses to do all kinds of things to her, as long as they were honest in telling her that it would hurt, and allowed me to stay with her. She was able to find refuge in my arms, my touch, or even just my voice and presence at times when I wasn’t permitted to actually hold her.
Frequently I saw children who behaved exactly the opposite. Fighting, screaming, lashing out in anger against their parents, they had to endure the needle or knife or whatever it was without access to the support and comfort their parents could have given them. A procedure which Karis was able to handle tearfully but calmly, for those little ones became a traumatic ordeal that took much more time and effort and left everyone emotionally drained.
I realized that before God, I was like a little child, unable to understand why he would permit us to be hurt like this. I too had the daily, and sometimes hourly, choice of allowing anger, resentment, and fear to block me from the strength and comfort he offered, or of trusting and holding tight to him, finding refuge in my heavenly Father’s love.
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