I lay flat on my back, just moments after giving birth to our third child, a daughter named Mandy. The intense pain of childbirth was mingled with relief that the labor and delivery were over. I wanted to rest, but first I wanted to hold my baby.
"We need to measure that head," the doctor said.
"Why?" I heard my husband, Marshall, ask. "Is something wrong?"
I couldn't hear the reply, but the doctor's voice was calm so I wasn't alarmed. He said something about "possible microcephaly," but that term was meaningless to me. I was concentrating on seeing and holding our daughter, and she looked perfect.
After several moments, Mandy was taken away; and I was wheeled to the recovery room. Marshall stayed with me for a while but then said, "It looks like you should rest; and I'd better get to the airport. Mom's due to arrive in an hour. We'll come straight back." I nodded and closed my eyes.
Before Marshall could get back from the airport, I left the recovery room and the doctor stopped by the maternity ward.
"Your daughter has a condition called microcephaly," he said. "That means she has a small brain. Normal head circumference is 35 centimeters, and hers is 31 centimeters." He went on to say that some people with microcephaly live normal lives while others have mental limitations.
My brain was still cloudy. I didn't understand what he was talking about. Small head. Was this dwarfism? I recalled being told that one of my relatives had such a small head he couldn't find hats that fit. Was that related?
But when the doctor talked about possible retardation, I began to panic. Why isn't Marshall here? There's something wrong with our baby, and he's off being a responsible son when I need him here! My husband's absence during that traumatic moment was only the first of many strains that the next two years would place on our marriage and our trust in God.
For the first few weeks, we prayed that Mandy would be "normal." But we eventually realized that her retardation was severe and profound—she would never talk, walk, sit up or use her hands. She suffered frequent seizures, and soon we were squirting three different medications down her throat.
When Mandy was three months old, her doctor discovered cataracts clouding both her eyes. She had surgery to remove them, but even with her thick glasses, we never knew if she could see. Neither did we know if she could hear. She didn't turn her head to the sound of my voice the way our other babies had. The only time we saw her respond to stimuli was when her body occasionally would relax in a warm bath.
Suddenly, our family life centered around Mandy's care. Her health was fragile—she endured a series of pneumonias and "status epilepticus" (prolonged seizures), all of which were life-threatening. Virtually every month she had to be hospitalized. After a while, we were able to smile about our lifestyle of ongoing emergencies. Trips to medical facilities happened so frequently, Marshall jokingly called them "our Club Med vacations."
But neither of us knew how to handle a life-and-death condition that doesn't end. Once we sat in an emergency room, watching nurses try four and then five times before they could get a needle into Mandy's tiny veins to administer valium and phenobarbitol to arrest another seizure.
"Usually when you face a crisis, it demands your full attention and then is resolved—happily or not," Marshall said. "But this emergency just goes on and on."
We learned of the danger this ongoing crisis posed for our marriage. Couples with a seriously handicapped child have an 80 percent divorce rate, we were told. We determined not to become one of the statistics, but we experienced enough of the tensions to recognize the danger.
The Strains of Care
Much of the conflict in our marriage arose from the different ways Marshall and I handled the strain. I threw myself into Mandy's care, monitoring and administering her medications at the proper times. Marshall took turns bathing, medicating and feeding her, but I was the one who posted the charts and consulted with the doctors to adjust dosages.
When her muscles became contracted, I took her for weekly physical therapy at a nearby Easter Seals center. I developed a whole new set of friends who were involved in caring for handicapped kids. Marshall never met them since he was working during the afternoons we went.
Mandy always had difficulty eating—sometimes it would take eight hours to get her to swallow four ounces of formula. I would keep at it. Again, Marshall would help, but he found it hard to sit for more than an hour trying to feed Mandy.
Most demanding, when she couldn't sleep at night—restlessly squirming and groaning—I would hold her, sitting in our rocker/recliner all night, eventually dozing off with Mandy in my arms. After several nights of this each week, I suffered from sleep deficit. Marshall never awoke when Mandy was squirmy; I couldn't sleep if she was restless.
If we had to make a middle-of-the-night run to the emergency room, Marshall would willingly go while I stayed home with our other two girls, but the burden of Mandy's care fell to me. While my husband was supportive, I felt lonely. One evening I was crying, overwhelmed by our baby's situation. Marshall sat quietly next to me on the couch.
"Why don't you cry? Don't you care?" I asked him.
"Yes, I care. And I don't know why the tears don't come," he said. "Sometimes I wish I could cry, but I can't."
If he really cared, why wasn't he more visibly upset? His emotional detachment bothered me. At the dinner table, I often wanted to talk about Mandy, and Marshall would listen—for a while. But then he'd change the subject to church, or an upcoming vacation, or to one of our other girls.
Once, after I'd been on the phone with a friend, weeping about Mandy's latest setback, he said, "I'm glad you can talk with Julie. She's a great listener. But do you think she ever gets tired of hearing about Mandy's problems?"
"What do you mean?" I said. "I need to talk things out. I can't just bottle them up the way you do. I have to process them, and it takes me longer than it seems to take you."
"You know what scares me even more than Mandy's seizures?" Marshall said. "I fear people will consider us lepers. If our suffering is all we talk about, even our friends may shy away from us. We need to be honest about our situation, but maybe we shouldn't dwell on it so much in conversations. Who wants to be with someone who's depressing all the time?"
I couldn't compartmentalize life like that. At times, Marshall's "coping by thinking of other things" angered me. I feared we weren't connecting emotionally.
His equilibrium, however, did have one benefit. Since Mandy had difficulty swallowing, her medications and formula often had to be administered through a tube—inserted through her nose and down her throat into her stomach. I always had trouble doing that. But Marshall learned how to lubricate and gently insert the tube. What made me squeamish seemed much easier for him. After that, I began to notice the different ways he showed his concern. He took care of Mandy's almost-daily enemas and the subsequent cleanup.
My husband provided a sense of normalcy for our other two daughters. While I focused on Mandy, Marshall coached Stacey's and Kelsey's Tee-ball teams and provided bike rides and trips to the arcade or to Dairy Queen. And he made sure our family always had a vacation planned that we could look forward to.
Also, his work was a means of providing for Mandy. I realized that without his job, Mandy's care wouldn't be paid for—and if he lost his job, she would be virtually uninsurable. What I had viewed as him being overly focused on work was actually his way of providing care for Mandy.
"Mandy makes me feel so helpless," he once admitted. "I can't do anything to change her condition." So he concentrated on the areas where he could do something.
It took us more than a year to fully understand the different roles we were playing. One day as we were discussing it, he put it this way: "Mothers often focus on their neediest child. And we've needed you to concentrate on Mandy's care. I see a dad's role as looking out for the whole family."
The Two-Minute Gift
Suddenly, into the midst of our ongoing crisis, another surprise landed. I was pregnant again, and I was thrilled when, a few months later, the doctor told me our baby-to-be was a boy. I decided to keep the news a secret because I wanted to see Marshall's face when our son was delivered.
I did tell one of my closest friends, and she rejoiced with me. "This is God's way of honoring you for your faithfulness with Mandy," she said. It felt good to feel God's smile again.
But because of Mandy's condition, we wanted to be ready in case this child also had complications. In the fifth month, our doctor recommended a Level II ultrasound. As I lay on the examining table, Dr. Silver manipulated the ultrasound, measuring the cranium and the femur and viewing the internal organs. We all watched the embryonic motions.
"Is everything okay?" Marshall asked.
"Let me complete the examination, and I'll give you a full report," the doctor said. I hoped his evasive answer was merely his standard procedure.
Moments later, Dr. Silver announced his observations in a matter-of-fact voice. "We have some problems. The fetus has a malformed heart—the aorta is attached incorrectly. There are missing portions of the cerebellum. A club foot. A cleft palate and perhaps a cleft lip. Possibly spina bifida. This is probably a case of Trisomy 13 or Trisomy 18. In either case, it is a condition incompatible with life."
Neither Marshall nor I could say anything. So Dr. Silver continued.
"It's likely the fetus will spontaneously miscarry. If the child is born, it will not survive long outside the womb. You need to decide if you want to try to carry this pregnancy to term."
We both knew what he was asking. My soul was shaken by the news, but I knew clearly what I was to do.
"God is the giver and taker of life," I said. "If the only opportunity I have to know this child is in my womb, I don't want to cut that time short. If the only world he is to know is the womb, I want that world to be as safe as I can make it."
We left the medical center that July afternoon stunned and saddened. All the way home, one thought overwhelmed me: Pregnancy is hard enough when you know you're going to leave the hospital with a baby. How can I go through the pain of childbirth knowing I won't have a child to hold?
I was shattered. When I told one friend the news, she put her arm around me and said, "Remember that God loves you."
I nodded, but inside I was screaming, "Then why doesn't he show it? This is the strangest way to express love I've ever seen!"
Summer turned to fall, and we were praying that our son would be healed. But if a long life were not God's intention for him, we prayed that he could at least experience the breath of life.
Even that request seemed in jeopardy as labor began November 22. As the contractions got more severe, signs of fetal distress caused the nurses to ask, "Should we try to deliver the baby alive?"
"Yes, if at all possible, short of surgery," I replied.
They kept repositioning me and giving me oxygen, and the fetal distress eased. And then suddenly the baby was out. The doctor cut the cord and gently placed our son on my chest. He was a healthy pink, and we saw his chest rise and fall. The breath of life. Thank you, God.
Then, almost immediately, he began to turn blue. We stroked his face and whispered words of welcome, of love, of farewell. Two minutes later, the doctor said, "He's gone."
Within moments, our pastor, our parents and our children came into the room. Together we wept, held one another and took turns holding our son. My chest ached from heaviness. Death is enormous, immense, unstoppable.
The loss was crushing, but mingled with the tears and the terrible pain was something else. At the births of my three daughters, I'd felt "the miracle of birth," that sacred moment when a new life enters the world of light and air. The breath of life fills the lungs for the first time. Now this moment was doubly intense because the miracle of birth was followed so quickly by the mystery of death.
"Do you have a name for the baby?" asked one of the nurses.
"Toby," I said, "from a name in the Bible, Tobiah, which means 'God is good.'"
Marshall and I didn't particularly feel goodness at that moment. The name was what we believed, not what we felt. It was what we wanted to feel again someday.
Four days later, we loaded Toby's tiny casket into the back of our minivan and drove 750 miles to the church cemetery near my childhood home in Kansas. We didn't know then that we'd be coming back in just a few months.
Losing a Second Child
Two weeks before her second birthday, Mandy developed a severe pneumonia. Despite our prayers and the physicians' treatments, after five days I began to fear we would never bring her home from the hospital. On Thursday afternoon, Marshall and I sat in Mandy's room, taking turns holding her. A procession of people stopped by to visit:
Marshall's boss, who said, "I don't have anything to say. I just sensed I needed to be near Mandy." He told us about the loss of a loved one several years earlier. Then he left.
A hospital volunteer, supposedly there to comfort us, who suddenly poured out the story of her own divorce, remarriage and feeling of estrangement from God. Now she had a desire to renew her relationship with him.
A nurse, who uncharacteristically broke into tears and told us of growing up in a boarding school, away from her missionary parents, and never feeling close to them (or to God). But now, after caring for Mandy, she longed to regain intimacy with both heavenly and earthly fathers.
I sat there amazed. In the presence of a dying child, a child who couldn't speak, we had a small "revival." People were coming to Mandy's room to confess sins and draw nearer to God.
At 7 p.m. Mandy left her "earthly tent" for one "not made by human hands." Amid the sorrow, we planned her funeral and drove her tiny casket the same 750 miles we had driven three months earlier to the Kansas church cemetery.
A Midnight Messenger
In that time of intense pain, Marshall and I clung together. Every day I needed to talk about Mandy—to recall the smoothness of her skin, the scent of Baby Magic shampoo in her hair, the physical ordeals she suffered with cataracts, glaucoma, surgeries, feeding tubes and other painful medical procedures.
I felt as if I had lost not only my daughter, but my identity as well. For two years, my job and my calling had been to care for her. My closest friends were those who had helped care for her—at church, at the doctors' offices, at Easter Seals. My support group had centered around Mandy—and now that center was gone. I missed those friends.
For two years, every hour had been filled by taking care of her needs. Now Stacey and Kelsey were in school, Marshall went back to work, and my hours and my house were empty. Suddenly I went from having no time to having too much time.
One well-meaning friend said, "Aren't you relieved that you're through with seizures and medications and G-tubes and the constant care Mandy demanded?"
"No!" I said. "I miss her! Caring for her was a privilege. She was a holy gift. She loved to be held, and I loved to hold her. I'm not relieved; I ache for her."
Our church family offered thoughtful support—meals and cards and phone calls assuring us of their prayers. I drew some comfort from the Bible's promise of heaven and knowing that one day I would see my children again. But in the weeks right after Mandy's death, that comfort felt hollow. Why couldn't I be with Mandy and Toby now? Were they okay?
I read every Bible reference to heaven. I devoured Christian books on what awaits us in eternity. But still the nagging question lingered: If God couldn't take better care of them on earth, how could I be sure they were okay in heaven?
As a mother, I needed to know, beyond a doubt, that my children were safe and loved. I needed something more than a pat on the arm and "Don't worry, God will provide." I needed God to touch not just my head but my soul.
I visited Mary Lou Bayly, a wise Christian woman who had seen her husband and three of her children die. I needed to talk with someone who had experienced multiple losses. I told her about my doubts.
"I didn't struggle with that same issue," she said. "I had other questions. But one thing I have learned: As the Bible says, 'You have not because you ask not.' Whatever you truly need, ask the Lord for it. But be prepared for God to answer in unexpected ways."
For the next three nights, I lay awake praying that God would give me some assurance that Toby and Mandy were okay. The third night, I was praying that prayer when I heard footsteps coming down the hall. This wasn't unusual—our daughters Stacey, 7, and Kelsey, 4, often wanted to crawl into bed with Mom and Dad. But this time the footsteps came to the door of our room, stopped, then went back down the hall to the girls' room.
The next morning, Palm Sunday, I tried to awaken Stacey, but she complained she was too sleepy to get up.
"You wouldn't happen to know anything about a midnight wanderer who came to our room last night, would you?" I asked.
Suddenly Stacey was wide awake. "Oh, yes. That was me. I came to your room to tell you that God spoke to me, but you were asleep, so I went back to bed."
"I wasn't asleep, Honey. You could have come in … Wait a minute. God spoke to you? What did he say?" I was dubious.
"He said that Mandy and Toby are very busy, that they are preparing our house, and they are guarding his throne."
"How did God say these things?"
"He spoke to my mind," Stacey replied matter-of-factly. "Then when I thought you were asleep, I came back to my bed and repeated the words over and over so I could remember to tell you. It seemed like an important message."
I didn't know what to make of it. Stacey has never, before or since, gotten such a message from God.
As I reflected on it, though, I realized my prayer for assurance had been answered. I don't know what I'd been expecting. A dream? A vision? Some new insight that would miraculously take all my cares away? But by speaking through a seven-year-old, God had done the unexpected. My worries about Mandy and Toby were gone!
They weren't just okay, they were busy. They were preparing for us. And they were together, close to Jesus.
This is all consistent with Scripture. We know heaven is not just a place of being but a place of doing, of activity to God's glory. We know places in heaven are being prepared for us. We know Jesus enjoyed having children near him. We know "the least shall be greatest," and I can't think of many people more "least" than Toby and Mandy.
No, the grief didn't vanish. I still long to see my precious little ones. Tears still well up at unexpected times. But I also know that God provided the assurance I needed that he is taking care of them. I now live with one foot in heaven and one foot on earth, and it's not a bad way to live.
Should We Try Again?
Even after that amazing answer to prayer, we had more "grief work" to do. Our whole family went to a six-week support group for those who have lost a family member. That helped us deal with our losses and gave us ways to communicate in words and symbols. (We still make sure Mandy's stuffed Winnie-the-Pooh and Toby's "little bear" are in all our family photos.)
In addition, I became part of Compassionate Friends, an ongoing support group for women who have lost children. I needed to talk through feelings, questions and struggles with other mothers who could assure me I wasn't the only one who felt this way. For almost a year, this group met that significant need.
But by far the biggest issue Marshall and I faced was whether we should try to have another child. Relatives on both sides of the family were adamantly against the idea. Even though Mandy's microcephaly and Toby's Trisomy 13 were completely unrelated—so far as any medical or genetic experts could tell us—some of our loved ones told us we would be foolish and irresponsible to risk another pregnancy.
But Marshall and I had an unmistakable sense that the story wasn't over yet. Even if our next child were to have Trisomy 13 or microcephaly, we were ready. Mandy and Toby were gifts we deeply loved. We'd be honored to accept another such child.
Just over a year after we said farewell to Mandy, we said hello to an active and healthy boy we named Bayly. He has brought joy, healing and the usual chaos into our lives.
Mandy and Toby are still members of our family—they just aren't living with us right now. We remember them daily and talk about them frequently. I'm grateful for every moment I was with them, and I long to see them again. And while our marriage and our faith were shaken, they have both emerged more unshakable than before.
Susan Shelley is director of Christian education at her church in the Chicago suburbs. Bayly, her fifth child, is now three years old.
Copyright © 1996 by Christianity Today/Marriage Partnership Magazine.