Westmont Magazine Before Their Time
“I can’t find a heartbeat.”
These are not the words a young, pregnant mother wants to hear. In Tracey’s case, it got worse from there.
. . . At twenty-two weeks Tracey began having contractions at home. She went into the hospital and spent the night. In the morning the nurse came in to check her and announced, “Your water broke.” Hard on her heels was a doctor running in. He had a question. “Do you want us to try to save the child?”
This is one version of what has become a standard question since the early 1970s: “Do you want this child?” A strange question really. “Do you want this child?” As though one was trying to decide whether or not to buy a new car. “Do you want this car, or is it the wrong color? Do you want this child, or is it the wrong time?” The unstated assumption is that the child has no value independent of your wanting it. It is either of ultimate value or utterly worthless depending on the degree to which you desire it.
Try asking it other ways and see how it sounds. “Does the thought of this child please you?” “Is this a convenient time for you?” “Does this child fit into your schedule?” Then put your own name in the sentence and imagine someone else asking the question about you. “Do you want ________?” “Is this a convenient time for _______?” “Does _______’s life fit into your schedule?” And if the answer is no?
Tracey was stunned by the question — “Do you want us to try to save this child?” — and repeated her one word answer over and over lest there be some misunderstanding of her desires.
“Yes, yes, yes, yes, yes!” But it was a yes filled with despair. “We just started to cry because we knew he was twenty-two weeks, and there was no way he was going to make it.” They were short of the goal line. A long run, a heroic effort, but no score and the game was over.
Tracey was taken by ambulance to Abbott-Northwestern Hospital. They managed to hold off delivery for five more days through the use of drugs, but then Simon’s heart rate began to drop and the doctors decided they would have to take him out by Caesarean section.
But as they were preparing her for the C-section, Tracey announced, “It’s coming out.” And come out he did, all twenty ounces and twelve-and-one-half inches of him. The delivering doctor said, somewhat cryptically, “This shouldn’t be.”
Tracey and Eric didn’t know exactly how to act. Eric did the male thing. Or at least a male thing. He made jokes. He was acting happy, thinking that was how he was supposed to act.
Eric’s jokes made Tracey angry. “I thought, What are you doing? I was feeling grief. I wasn’t feeling any joy. I was feeling grief and pain, and here he was running around making jokes. It was very scary. I didn’t know if our baby would live another hour.”
The medical staff didn’t give them any false hopes. The delivery had come at two in the morning. They said to Tracey as she was taken to a recovery room, “We’ll call you tonight . . . if anything happens.” His chances of making it through the first night were not good.
But then the medical people didn’t factor in the prayer chains. How could they?
I call on you, 0 God, for you will answer me; give ear to me and hear my prayer. Show the wonder of your great love, you who save by your right hand. (Psalm 17:6-7)
“We had some prayer chains already prepared,” Tracey remembers, “so we called when I went into labor, and I’d say about 150 people were praying immediately.” Tracey called the three key prayer-chain people, and they called others, and within minutes many people were praying in agreement with Tracey and Eric for the life of their child. You don’t need to have figured out exactly how prayer works to know that this is a good thing.
Be joyful always; pray continually; give thanks in all circumstances. (I Thessalonians 5:16-18)
Simon changed how Eric thinks of prayer.
“I have seen prayer in action, and I believe more in . . . I don’t want to say changing God’s mind, but in pleading with him for our heart’s desire. We wanted Simon to live no matter what he might be like or not like. And we feel confidence in coming before the Lord and asking him for that, whereas before I might just pray, ’Whatever your will is God, amen.’”
Marc and Leslie made a mistake early that many parents of severely premature babies make. They assumed Blake was just a smaller version of a full-term baby. Marc remembers, “I thought he was just small. He’s little.”
At first Leslie even wondered why the last part of pregnancy was even necessary, because he looked so complete.
“I thought, What do the other four months in the womb do? Because he was a perfect little human being. He was fully developed — on the outside. I thought he was perfect but little.”
Her naiveté did not last long. “Well, then we found out what the other four months do!”
One thing they do, among many, is allow the eyes to develop. As with others, the possibility arises that the abnormal development of blood vessels in the eye will cause the retina to detach and result in blindness.
Typically, Marc didn’t think Blake would end up blind. He adopted his usual view that there was always something that could be done.
“I never thought he would be blind. I thought, Well, they have this laser surgery, and we talked to the doctor. I just never really worried about it.”
Leslie worried. She worried whether they had what it takes to raise a child with serious disabilities. How do you cope with that? What does it do to your life? What’s it like for the child?
They even found themselves mentally negotiating over what disability they would rather Blake have. Leslie recalls that blindness was the one they feared most.
“We both said we’d rather he not be able to walk than not be able to see, because at least we could take him places, let him see the beauty — even if he were in a wheelchair. We were sort of picking things.”
It didn’t take them long to realize that these things were not in their hands.
“It suddenly occurred to us that we couldn’t think this way. No one is given the choice. Besides, even if you have a perfect full-term baby, something can happen later that causes a disability. It’s totally out of your hands.”
And things got worse. At the same time the doctors were telling them that Blake was at maximum risk for blindness, he was also failing every hearing test. Blind and deaf? There are limits to what one can contemplate.
“I kept thinking, ’We can’t handle this. At least I can’t handle this. I can’t believe this is being put on us.’”
Leslie then did something very wise — she started collecting stories.
“I started talking to people. I got phone numbers from the hospital and social agency of people whose children were blind because of premature birth. I’d talk to these people — mostly mothers — and I’d hear the child playing in the background. They’d be spinning on something and laughing, and I’d get off the phone and think, Wow! They sound so good.”
Having a child like Blake introduces you to a community of people with similar experiences that you never knew existed.
Leslie found out that a woman at the large company where she worked had a seven-year-old boy who was blind for the exact reasons that threatened Blake.
“She came to Children’s while we were there, and she had her son with her. He had detached retinas because of his prematurity. One day the doctors had told them that their son’s blood vessels were bulging, and the next day they were told the vessels had burst overnight, and their baby was blind.”
This is not normally the kind of story you would want to hear while your own child is facing the possibility of a lifetime of darkness. But blindness was not the main point of the young boy’s life.
“He was an amazing little boy. For instance, he began quoting Bible verses while we were standing there in the hall — this little blind kid. He can’t see, but his hearing and memory and everything just pick up. He sat there quoting long passages of Bible verses. People were stopping and listening to him, including the janitor. It was very encouraging.”
Leslie is further encouraged when the mother tells her about the school districts, the buses that pick blind kids up and other practical details. It becomes clear that blind kids have a life, a daily life of going and doing and accomplishing. Leslie begins to visualize the possibility of putting together the seemingly contradictory concepts of disability and normalcy.
Their pastor reinforces the message on a more theological level. “Our pastor just kept saying over and over again, ‘God put Blake on this earth for a purpose. If he’s blind, if he’s deaf, if he can’t walk and talk — he’s here and he’s going to have a purpose in your life — in everybody’s lives.’”
Leslie and Marc finally experienced a peace about Blake’s potential problems, though for different reasons. Marc was at peace because he didn’t think it was going to happen, and if it did, “then there are people out there who can help us, and we can read up on it.” Leslie was at peace because, though she expected Blake would be blind, “I now felt we could handle it.”
She felt they could raise a blind child because she had talked to others who were doing so successfully.
When things go this bad, some people begin to give up or, depending on one’s point of view, get realistic.
Many people pass through the NICU: pediatricians, perinatologists, anesthesiologists, nurses, surgeons, therapists, cleaners, social workers, parents, administrators and so on. Some of them like to share their opinions, informed or otherwise.
A few had opinions about B.J. Some were opinions disguised as a question: “What are you doing this for?”
“This” could refer to any of the treatments B.J. had received, including the decision to allow him to live in the first place. The clear implication was that they were doing too much, that the treatment was too extreme, the odds too low, the best thing being to let the baby die and move on.
But then, these people didn’t know that this wasn’t just a baby, it was B.J. — Burgess Jefferson, named after his grandfather and uncle, the only son of Bennie and Alliette, the only brother of Bennal and Burgette. And they didn’t seem to fully appreciate that this was the only life B.J. was given, and that, for him, there was nothing in this world to “move on” to if treatment was withheld.
Eventually the long-dreamed-of, sometimes-feared day does arrive, and you can take your child home. At one time in the whole process you had thought that this would be a kind of ending, a resolution. Now you know it is neither an ending nor a beginning: it is a continuation, but now in a different context.
At one time Tracey grieved, maybe even resented, that the nurses seemed more a mommy to Simon than she did. Now she worried a little that those nurses wouldn’t be there all the time. She felt the same about the machines from which she had always wanted Simon freed. And after months of hating to leave Simon behind in the hospital at night, she now wondered if she would ever get a whole night’s sleep again.
Simon came home at fourteen months with a hole in his throat. His damaged lungs could not glean enough oxygen from the air. Therefore, he didn’t entirely leave behind the machines at the hospital. His tracheotomy was connected by a long plastic line to an oxygen tank.
As the months at home passed, he became more and more active, crawling to the length of his oxygen line, opening cupboards, playing with toys. He discovered he could make sounds by putting his finger in the hole in his throat, causing air to flow through his vocal cords.
This is wonderful progress. But it still isn’t normal. And normal is what Tracey longed for. Normal means no home nurses, great people though they are, coming into your house for eight to twenty-four hours at a time. Normal means not having a nurse mention that she heard Eric snoring last night. Normal means being able to take your child upstairs without worrying about the oxygen tank.
Normal means taking back your life from medical schedules. After a year at home on the oxygen, Simon was scheduled to have his tracheotomy removed. Three different times the surgery was scheduled, and three times something came up and it was delayed. Each scheduling required a major reorganization of life, and each delay brought exasperation as the possibility of normal life recedes again into the future.
Normal also means an end to the miracles.
If you have spent months praying for miracles, why would you want them to end? The answer is simple — because you want them to be no longer necessary. If you are living off of miracles, you are living on the edge.
“I’ve got all these people praying for this miracle regarding Simon’s trachea, and part of me doesn’t want another miracle. I just want it to go the way it should go, and it never has.”
The way it “should go.” That is, the way we want it to go — the way it would go if we were God.
“Part of me says, ‘I don’t want another miracle. I just want it to be normal.’ But, of course, I do want another one.” “Part of me” wants this, but “part of me” wants that. Part of me believes this, but part of me sees that. Part of me feels this way, but part of me feels the other. This is human nature, and it is especially the experience of those who love babies born too soon.
Normal also means a break from wrestling with God.
“I’m thinking, Okay Lord, you’ve given us enough! I believe you, I trust you, my faith has grown so immensely, and yet I’m just tired of . . .” Tracey never completes the sentence. Instead she quickly shifts to talking about how faithful God has been. It’s as though she is afraid that admitting frustration will anger God and therefore threaten Simon. Tracey admits to feeling a certain pressure to keep her faith up, to perform for God, even though she knows in her head that it isn’t necessary.
“I was struggling with the question, ’Does God always heal?’ And that’s a big question. Because, well, no he doesn’t. A lot of people die. But I kept seeing all the Scriptures that said he did. And then I was reading about faith and that you don’t receive anything if you don’t believe and that you shouldn’t be like waves that go back and forth — those who doubt. But then that puts pressure on you and you say to yourself, If I’m doubting, is my son going to die?” She resolves it for herself by deciding that God has told Eric and her that Simon will live, but that he doesn’t tell everyone the same thing.
But what if — three very human words — but what if Simon does die? What if after all the struggle, all the miracles, all the prayers, all the doctoring and mothering, all the tests and procedures and surgeries, all the prayer chains and prayer letters, all the grandparents and friends, all the bargaining with God, all the everything . . . Simon does die?
The broken syntax of Tracey’s answer reflects her inner struggle. “If Simon were to die, I would say that I’m at the point in my faith where I believe . . . that I hope . . . until right now I can tell you that my response would be . . . I just . . . God is greater than me.”
It is the answer of Job — God made the world, you didn’t, so quit trying to figure everything out. And as with Job, “God is greater than me” is not a glib cliché; it is rather the product of reflective suffering. It is a statement of faith, not of bitterness or even resignation. For Tracey, moreover, it is a statement of fact, of how things are. And it is somewhat contrary to her own nature, which is to be in charge.
God’s sovereignty does not, however, eliminate human questioning or, in Tracey’s case, human honesty. “If God didn’t preserve Simon’s life, I would have to trust that he just knew better. But obviously, emotionally, it would be extremely hard, and, yes, I would struggle with my faith.”
Hard is a word that appears often in Tracey’s description of life with Simon. She’s too honest to say that it isn’t hard, sometimes almost unbearable. But she always insists on the balancing, and greater, truth as reflected in the last words of her journal of Simon’s first months of life.
Simon, I love you so much. Your life has brought my faith to such heights. I will always remember these months with great joy as well as pain. You are a special, chosen one from God. Never underestimate God’s power. He can do anything.
Great joy and great pain. Both are real. Neither eliminates the other. But joy and faith get the final word. And in Simon’s case, the word to date is a very good word.
These stories also teach us something about suffering. Suffering results from the gap between how things should be and how they are. Because we are able to conceive of wholeness, we suffer from its lack. Because we can imagine a heaven, or a heaven on earth, we suffer for the world’s fallenness. Because we know what a healthy baby is, we grieve for one who needs a ventilator to breathe.
Ultimately, we suffer because we love. These children born before their time teach us to love, and because we love them we suffer, and because we suffer we love even more. If we do not care about something or someone, nothing that happens to them will hurt us. On the other hand, the more we value them, the more they can cause us pain.
The deepest kind of love, then, is suffering love. You cannot love someone without placing yourself at risk, and with risk comes the likelihood of pain. B.J. was not the only one at risk during the early months of his life. So also were Alliette and Bennie and their girls, for they took the chance of loving a son and brother who might be taken away.
This link between love and suffering strikes at something fundamental about the nature of God and of the human experience. At the center of the Christian faith is a cross, an emblem of suffering and of love, and of the mysterious joining of the two together. It was literally and symbolically the place Alliette went to when she couldn’t carry the pain of B.J.’s decline any further. Suffering love was what each of these parents felt when they held the tiny hands of their children in the isolettes.
Suffering either destroys or deepens us. It cannot leave us the same. Each of these parents would have spared their children and themselves the pain if they could have. Each of them is a more profound person because they could not.
Suffering deepens us because it strips away superficiality. It is an acid that dissolves pettiness, complacency, smugness and triviality. It is the single greatest force for reordering priorities in the world. Suffering is a great clarifier. It clarifies what is real and what is artificial, what is precious and what is worthless, what is lasting and what is passing away.
How can Tracey worry about the latest dress style when Simon is having another cardiac arrest? How can Anthony angle for a nicer office at work when Lamarre has bleeding in the brain? How can Leslie listen to petty gossip when Blake may be going blind? How can any of them value anything this world has to offer more highly than the love and prayers and practical help of family and friends?
Five stories of five families and of six children . . . some with happy endings, some with sad, but all worthy of the telling. And of the living. When reduced to its simplest, the central fact of each of their lives is that they mattered. They were and are valuable in ways beyond prediction and beyond counting and beyond comprehension. The world is better for each of them having been with us.
Daniel Taylor graduated from Westmont in 1970 and teaches English at Bethel College in Minnesota. He is the author of several books, including “The Myth of Certainty” and “Letters to My Children.”
Adapted from Before Their Time by Daniel Taylor and Ronald Hoekstra. ©2000 by Daniel Taylor and Ronald Hoekstra. To be released in July 2000. Used by permission of InterVarsity Press, P.O. Box 1400, Downers Grove, IL 660515.