Tears splashed on my hands even though I wasn’t consciously aware I was crying. In a half whisper I sang a hymn and then “You Are My Sunshine.” My voice broke when I came to the line, “Please don’t take my sunshine away.”
I watched as he shuddered slightly. I whispered, “Oh, baby boy, fly away to Jesus.” The fluttering in his chest stopped and his color faded. When he was still, I called my friend Marie who was working downstairs and asked if she would come help me take a photo of this precious boy. I wanted his parents to have something tangible to take home with them. A photo would be a poor consolation when Mom’s and Dad’s arms were aching to have a baby in them, but it was something, and something in the long run might bring them comfort.
Marie came to help me with Baby Boy without flinching, even though this certainly wasn’t her area of expertise. She watched as I reverently dressed him in a small handmade kimono-style robe and then wrapped him in a blanket about the size of a washcloth. The outfit and blanket had been specially created by local church women just for babies his size. The OB nurse knocked softly on the door and poked her head in, “The parents would like to hold him now. Would you take him to them?”
I did as she asked, sighing with relief that they had chosen to hold him. The parents were going to have enough heartache, and creating a memory of their son would ease some of the pain that lay ahead. After settling Baby Boy with his family, I left the room to gather my things that I had left in the empty, hallowed space near the window.
Marie was there waiting. I had reined in my emotions while I’d had to, but now my sobs broke in spite of my best efforts to control them. “I wish I could have done something for him.” I groped about in my mind, sorting through options and discarding them just as quickly. “But his lungs—they were too young to work. Any medical procedure I could have attempted would have been futile. And it would have hurt him. I feel so helpless!”
Marie looked incredulous. “You’re kidding me, right?” she asked. “All that baby knew outside the womb was your touch and your love. What greater gift could you have given him?”
More than anything, the parents I worked with just needed someone to feel the loss of their child as deeply as they did, a compassionate and steady presence to help them as they learned to cope with their grief.
I loved what I did and the ability to make a difference for good in such tragic circumstances. It was difficult to accept closure, to acknowledge that this job was no longer mine.
As I walked down the hall, the heaviness in my gut was awful, and it had nothing to do with the physical pain I had endured in the past year. I felt weak, drained of energy and of the wherewithal to finish the task ahead of me. On the way to the HR office, one of my former bosses greeted me, and I felt pitied. His expression confirmed, in my mind, that my prayers and the prayers of countless others that I be fully restored to health had failed. What was even more bewildering was how much of my identity was wrapped up in my bereavement counselor role, and now I felt as if my identity had been lost along with my job. One of my worst fears had been to become disabled, and now I was staring it right in the face. My heart soundlessly cried, Dear God, how can this be Your will for me?
The events of the next day are proof to me that God was indeed working all things together for my good, even before I had any clue of what He was doing. Our home had passed the necessary inspection, and the initial background checks were accomplished. I had been given the go-ahead to bring Emmalynn home, and Johanna and I headed to the hospital once more, but this time we weren’t just visiting. We would load this baby up in a car seat and carry our precious new gift to the rest of the family waiting at home to meet her.
On this second trip to the hospital, we found out more about Emmalynn’s condition. Only the brain stem was present, which allowed her to breathe on her own, but she wasn’t even able to swallow, which is a basic brain stem function. Feeding her was considered a comfort measure, and I was grateful she would not have pain from being hungry. A nasogastric (NG) tube went from her nose to her stomach so she could be fed by allowing formula to gravity feed through the tube with a syringe.
Johanna had brought with her a crocheted hat that was the color of an orange Dreamsicle from her own days as a newborn, and she fitted it over the top of the hospital-issue hat Emmalynn wore. Without this double-wrap effort, hats would fall off her tiny head.
While we were being readied for discharge, we met the neonatologist of the NICU. He was much more clinical than the physician we had chatted with the evening before. He agreed that I could use our family pediatrician, Dr. T, to provide primary care for Emmalynn. Then the doctor informed me that she was in a vegetative state. She would be almost comatose, “unable to see or hear. She will respond only to painful stimuli and have no real quality of life.”
My heart rebelled at his evaluation about “quality.” In spite of her extreme brain deformity and the resulting physical limitations, Emmalynn was not a mistake, as some would call her. Her body was formed in her mother’s womb because God decided it would be so. I love the way the Bible describes it, saying babies are “fearfully and wonderfully made” (Psalm 139:14 NIV). God doesn’t make mistakes, no matter our opinion of His work.
It honestly didn’t matter one whit whether we had evidence that Emmalynn understood anything we did for her. Because she was made in the image of God, my family would be the hands and feet of Jesus and care for her as He would. This privilege of loving her even though she was too frail to reciprocate made the joy all the sweeter. God’s extraordinary love for us is not contingent on our deserving it, earning it, or even, quite frankly, wanting it.
I drove home, and Johanna sat with Emmalynn in the backseat. Because she was so young and tiny, the car seat had to be rear-facing in the back, which meant I couldn’t see Emmalynn’s face in the rearview mirror. I was glad that Johanna could monitor the baby’s breathing and alert me to pull over if she seemed to be in distress. Not that Johanna was responsible for the little baby’s life—we both knew that Emmalynn could pass away in an instant—but we both agreed that if she began to struggle, it would be best for her if someone was holding her, offering comfort and love.
Having my adult daughter with me buoyed my spirits and helped to solidify that this was a team effort because I knew that on my own I wouldn’t be able to provide the 24-7 care Emmalynn required. Johanna could also share in the joy of seeing a prayer honored. Three years earlier she and I had attended a Mark Shultz concert for her birthday and we heard his song “What It Means to Be Loved.” Mark told the audience the song was about loving a child who most likely wouldn’t live very long: “I wanna be her mom for as long as I can…. I wanna show her what it means to be loved.” I realized that the artist had put into words what had been my heart’s desire for the longest time. At that time Johanna and I had prayed for an opportunity to do just that: to be a family for a child no one else had the desire or ability to care for.
Although the dream of being able to care for babies with anomalies deemed incompatible with life outside the womb appeared to go up in smoke with the crashing of my own health, God had answered our prayers after all. We had been in survival mode for more than the past year, and my own ability to muster enthusiasm for day-to-day life was almost nonexistent. Grappling with all the loss I had experienced and feeling as if God wasn’t listening to my prayers or anyone else’s had taken a heavy toll. I was just going through the motions, one heavy step after another, but here, now, in this moment, Johanna could see and was reflecting a joy that I hadn’t seen in her eyes in a long time.
Our prayer had been resurrected in God’s timing. My husband, having once completely objected to my desire to offer palliative care in our home, was now completely on board with the plan. Our children, for the most part, were also ready and waiting to come alongside Baby Emmalynn. After a year of doubting, my heart was full of hope.
We hadn’t had a newborn in the household in years. Through a couple of email messages to fa
mily and friends and some Facebook posts, word got out that we were caring for Emmalynn. To welcome the new addition, a small gathering of friends and siblings whooped and hollered when we stepped into the house. I was surprised to see a bunch of new stuff in my home. Our network’s outpouring of support overwhelmed me. Friends had brought clothes and toys, and they were piled in the living room, which would double as Emmalynn’s bedroom. Mary’s Room, a pro-life mission organization that gives free baby supplies to their clients, also gave generously. I was looking at a just-out-of-the-box playpen covered in pink and purple flowers. We received onesies, blankets, and a gently used car seat and stroller combo.
The kids passed Emmalynn around, and everyone held her gently, some rocking her, others singing to her. I got out my phone and took photos of the event. You would have thought the president was visiting.
Andrew, my twelve-year-old, was weepy when it was his turn. “This is really sad, Mom,” he said, “but we’ll just hold her, right?”
“Yes,” I said. “Holding her is 90 percent of what she needs.”
Our eldest son, Jonathan, was very busy making a life of his own, but he came home to meet Baby Emmalynn. He normally teased and roughhoused with his sisters, but as he held our new baby girl, he showed an endearing, tender, and gentle side all of us were astonished to see.
Emily, who was almost eleven years old, remarked, “I think Jonathan loves Emmalynn as much as he loves the fridge.” I agreed. Our “Refridge-a-raider”—as was his nickname—usually came to see us only when he was hungry. But he seemed to love lavishing affection on his littlest sister. After that first meeting, he was a more frequent visitor to the house and was drawn to the baby even more than he was to the contents of our kitchen.
Our girls and their friends embraced Emmalynn—literally and figuratively—without question or reserve. All of them saw themselves as her “sisters.” Because of her seizures and poor breathing, we didn’t expect her to sleep through the night. She would need someone close by all the time. I tried for the first few nights to have her sleep in our room. Multiple times I leaped out of bed to respond to her raspy breathing. Then I realized there was no way she could lie flat to sleep but had to be propped at a forty-five-degree angle to ease her respirations. Mark put his foot down and told our daughters they were going to help pull night duty. The girls enthusiastically arranged slumber parties so they could take on that job together, sleeping on the living room couch or floor, ready to wake me if Emmalynn needed urgent attention.
That didn’t mean their work was easy. Her seizing could be unsettling and took some getting used to initially. I was proud of the way my family and our friends rallied around our fragile cherub and moved past their fears and the awkwardness of caring for a child with obvious limitations and challenges.
The day after we brought Emmalynn home, Dr. T stepped out of his station wagon in front of our house wearing shorts and a T-shirt. A stethoscope was draped around his neck, and he was carrying a black leather medical bag. He had cared for my kids for more than eight years, giving them umpteen well-child checkups, though we hadn’t needed to visit his practice for reasons other than that. Our relationship was more based on the fact that I had known him during the years I worked at the hospital as an OB nurse. I took care of his patients when they were in the newborn nursery. We trusted each other as professionals, and we had worked well together to care for the babies at the hospital, but he had never before set foot in our home. I never dreamed he would make a house call.
When Dr. T walked inside, he seemed somber, as if he expected to find me weeping and wringing my hands over a baby in a quiet, dark, subdued setting. Instead, he found a busy, vibrant place: kids everywhere, the radio playing, a baby in bright pink clothing—and me, more animated and full of hope than I had been in months.
I lay Baby Emmalynn on a fluffy padded blanket on our dining room table, and Dr. T’s mood seemed to lighten. He gave her a thorough examination. He’s marvelous with kids and was gentle with the baby. She had won him over, and he seemed on board and almost happy with the plan for her care when the examination was done. He ordered oxygen because I didn’t want her struggling for air, and soon after he left, the medical supply company dropped off the oxygen supplies, which included a tiny little mask with a penguin design on it, a nasal cannula to deliver oxygen via her nose should we want to do it that way, a tank for traveling, an oxygen condenser for the house, and plastic tubing.
I requested Dr. T contact our local hospice agency and have them come alongside too. He looked confused, “You know more than they do about this business. Why do you need them?”
I explained, “It’s more about them maybe needing us. They probably don’t have a lot of experience with a baby who is going to die at home instead of at the hospital. We can be helpful to each other.”
“Okay.” He complied with the request and also let the county coroner know Emmalynn was with us and to anticipate a call about her sometime in the future.
Before leaving, he gave me prescriptions for her meds: to mitigate the breathing issues and general pain, and for seizure control. Her brain stem fired erratically, and she began to rest more peacefully after the adjustments were made. Her tone was very low and her arms would lie limply alongside her body most of the time unless she was seizing.
The seizures didn’t bother me, but they could alarm others. When she was seizing, her tiny hands would rise and wave about in the air. During those times, I would lighten the mood by saying, “Put your hands down, little girl, they’re going to think you’re Pentecostal!” which almost invariably caused the folks hearing the comment to at least smile or maybe even laugh. Our family is Baptist, though we do have moments when a little hand raising or waving during the worship service is not unusual. A sense of humor helped put everyone around her more at ease.
We were well on our way to keeping Baby Emmalynn comfortable.
Before discharging Emmalynn, the hospital neonatologist told me she was “failure to thrive” in the hospital. He didn’t necessarily think she’d live long enough to make the drive to our home. He also made me aware that should she continue to live for any length of time and gain weight, this would present a problem. Neurologically, the brain stem wouldn’t be able to keep up with the demands of her growth. She was experiencing both nonepileptic seizure movement as well as epileptic seizures as the brain stem misfired.
Despite these challenges, I felt that Emmalynn was aware of me. She calmed when I talked to her and most definitely appreciated being held and touched. This was one way to calm the nonepileptic seizures. Holding her close would provide the “inhibition” necessary to stop the tremors in her body. Her eyes couldn’t focus or connect with ours, but they did respond to light, so she would blink with a camera flash. She might not have had a brain present to hear or understand what we were saying, but she especially responded when Mark, her new daddy, carried her with her head tucked up under his chin so she could feel the soothing vibration of his voice while he sang to her. So we set scientific diagnoses aside and treated her like a normal human being in need of a lot of love.
We didn’t bring Baby Emmalynn home to die; we brought her home to live. Because we knew her time with us would be short, my family decided to pack a whole lot of living into each day that she was alive. We hoped to make a lot of memories, and what once would have been considered ordinary activities became extraordinary because she was with us. We didn’t hesitate to take our little girl to the beach, the bank, or the bookmobile.
Emmalynn’s third-week birthday came and went, and she was still alive! I could tell she was gaining weight, but when she had prolonged seizures, her ability to breathe was disrupted. Even with the oxygen mask to help her recover, she would turn blue about the lips, nose, and eyes, and her lungs made a sound similar to a coffee percolator. Her struggle for air was distressing for her and for us. After a serious seizure, she would look haggard and pale, her eyes sunken. I was grateful that the medicines gave partial
relief to my little girl, but they weren’t completely controlling all the seizures. Mark frequently told us he hoped that she would be able to slip away peacefully when the time came. I would nod when he voiced this request but had enough medical background to know it was highly unlikely her death would be peaceful. I thought to myself, It’s not going to happen that way, but you keep praying anyway.
While we were conscientious about Emmalynn’s health, we didn’t sit around as if we were at a funeral singing dirges. Her time with us was not a deathbed vigil. In fact, since Emmalynn wasn’t disturbed by loud noises as most infants are, we could play music as loudly as ever. We Salcherts do know how to have an impromptu dance party while doing dishes. We would prop Baby Emmalynn up in her bouncy chair and work away in the kitchen, singing to her or listening to the radio or CDs. She loved to be held while someone was dancing around to songs on the radio. I remember one day in particular when “I Will Survive” was playing on the radio as sixteen-year-old Charity made supper, belting out the lyrics, while Emmalynn sat in her recliner on the kitchen counter. There were certainly moments of anguish about what was coming, but the joy in each day far outweighed any gloominess over the future.
Emmalynn went everywhere with us. The older girls and I had bought tickets to see Wynonna Judd in concert. Again I followed my new rule—“Have baby, have oxygen tank, will travel”—and I dressed up Emmalynn so she could attend with us. Even without most of her brain, she did exhibit a response to sound, but she wasn’t as sensitive to noise as a normal infant would be. It wasn’t until the very end that she got a little antsy, and I stood in the back of the concert hall, swaying back and forth to comfort her. How gratifying it was to feel her relax against my neck and chest, cuddled in my arms.
At times I felt helpless and inept and unable to do much for Emmalynn except hold her next to my heart. Was I enough? Could someone else be doing a better job of caring for her? Could someone else better anticipate her needs without feeling uncertain about whether she was having a spell, or actively dying?
I Will Love You Forever Page 2
