I Will Love You Forever

by Cori Salchert

  Initially I watched the traffic go by and rocked her with a gentle swaying of my legs. I sang silly songs to her like “The Wheels on the Bus” and “Old MacDonald Had a Farm.” I could tell that the motion and singing soothed her.

  Emmalynn was exactly seven weeks old on this Wednesday in September, but I still counted her life in days—now forty-nine—because I knew any one of them could be her last. I was thankful for each day and considered each one a near-miraculous gift given to me by God. And like Him, who counts our days and knows the number of hairs on our heads, I carefully kept track of the details surrounding Emmalynn’s life and cherished them in my heart.

  Before meeting Emmalynn my life had been shattered—my health and my dream job were gone. I had felt as if I had lost everything during the course of my extended illness. This wasn’t entirely accurate, but God had to empty my hands or there wouldn’t have been room for Emmalynn.

  Three years earlier Mark had been hesitant when I had broached the subject of taking in a terminally ill child, or one with a lethal anomaly. His main objections were my full-time job, our eight children, and our numerous other commitments. He also didn’t care to bring the grief accompanying a dying child, home to live with us. At that time our family didn’t have enough resources to care for an infant who would require round-the-clock care. Now the timing was right.

  I could not have anticipated, or wanted, the means by which my schedule was cleared so I was free to take in this sweet baby. When I had been healthy, I was busy. God knew that Emmalynn didn’t need me busy. She needed me still. Accommodating my own physical weaknesses left me strong on her behalf. I could give her my presence, which was the best gift possible. She needed someone to be with her. To hold her. To love her. To be by her side when she died.

  I was awed by acknowledging I wouldn’t have been able to care for Emmalynn without first having endured suffering on many fronts, including the pain endured during God’s silence. C. S. Lewis described the feeling as “a door slammed in your face, and a sound of bolting and double bolting on the inside. After that, silence.”2

  Until you have been there, you don’t understand how crushing it is to feel you have been forsaken by God and been left in “a terrifying darkness” like the patriarch Abraham (Genesis 15:12 NLT).

  When it was so black, I wondered why God just seemed to up and disappear, leaving me alone. Once upon a time I would have attempted to argue with someone who thought God had removed His comforting presence, but not anymore. I thought I could bear anything as long as I still had the sense of God’s presence, but He took even that away.

  I sat on my porch holding Emmalynn and wept. I was no longer shattered, but I still ached with how intensely difficult the pain had been. I know Christ was never so alone as when He was on the cross, and yet He couldn’t have been any more in the center of God’s will than He was in that moment.

  Knowing that my Savior had been touched with the grief and sorrow I had experienced was comforting, even though I didn’t have answers for why it had all been so intensely difficult.

  My phone dinged. I received a text that made me grateful that Emmalynn’s life had had such a beautiful impact on so many others. A widower had recently stopped by to hold her. He had sent a message thanking our family for letting him visit. He had grieved more deeply on the one-year anniversary of his wife’s death than he had expected to and said holding our baby girl was healing for him. He had texted: “To my friend, Emmalynn, you’re a wonderful reminder to anticipate the future and to look toward heaven.”

  The time on the porch had flown by quicker than I could have imagined, and we had places to go. I changed Emmalynn’s diaper and her clothes, choosing a pink, hooded coverall that had belonged to Emily, my youngest daughter. In the short time we’d had her, Emmalynn had become one of us.

  Before we could go anywhere, she needed to be fed. She had come to us weighing just about six pounds. She had gained two pounds-plus in a month. We weren’t overfeeding her, but because of her inactivity, she soon filled out. Using a large syringe without the plunger, I introduced some formula into her NG tube, and gravity allowed the food to reach her stomach. Her body accepted the nourishment.

  I knew that every ounce of weight she gained placed a strain on her brainstem, and the irony was not lost on me. Emmalynn would not be able to keep up with the neurological demands her growing body would make.

  After lunch was done, I gathered everything together to make our trip. I shoved ordinary stuff like baby wipes into her diaper bag, but I also included her medications, syringes, and additional feeding tube supplies. I threw the bag over my shoulder along with my purse, which contained everything but the kitchen sink. With my left hand I rolled the frame of the large green oxygen tank behind me, the long tubing coiled around the handle. With my right, I carried Emmalynn, who was nestled into her car seat. We were armed for bear to say the least!

  I had an appointment with an occupational therapist in a last-ditch effort to improve some of my health challenges. The medical office was seventy miles away, and hiring a babysitter was not an option. I always took Emmalynn with me. Because of her fragile health, I was unwilling to be far from her side. My motto had been amended to include Emmalynn’s accouterments, “Have baby—and oxygen tank—will travel.”

  The trip was not long unless you were a baby who couldn’t move to get the pressure off her bum. Sitting in her car seat for an hour to get to the hospital probably was uncomfortable for her, but she didn’t get fussy. She never did. If her diaper was full, she might whimper like a kitten mewing, but that was the extent of her demands.

  Acquaintances either oohed and aahed over Emmalynn or pulled back and away, their faces registering discomfort. The therapy staff at the medical facility knew she had a lethal condition, and they understood the need to bring her along to my appointments. Some appeared to be compassionate toward her and the role my family was playing in her life. Others probably thought I was a little nuts. I noticed some staff members ducking into empty rooms in the hallway, possibly to avoid contact with Emmalynn and her tubes and conspicuous oxygen tank.

  Emmalynn was unusually quiet and motionless during my therapy session, and it made me feel wary. It was the second day in a row she had been off. Yesterday a friend had remarked that my countenance seemed sad, and today my heart was just as heavy.

  I nuzzled her cheek and whispered, “What are you doing, sweetheart? This is uncharted territory for me.”

  After the appointment I loaded the oxygen tank, bags, and Emmalynn into the car. I stood for a moment paralyzed by indecision. I was in a quandary I had never encountered in caring for a baby. The baby’s car seat had to remain in the backseat according to child-safety guidelines. And it had to be facing the rear of the car, so I couldn’t monitor her using the rearview mirror. A friend had promised she was getting one of the infant mirrors you can hang over a rear headrest, but she wasn’t going to bring it until Sunday. How would I know today whether she was okay? Her breathing was so quiet and shallow there was no way I could listen for it above the sounds of the car engine and other highway noises. I sighed deeply and then carried on a conversation in my head, working through my fears.

  “Okay, if she stops breathing, then what?” You can pull over to the side of the highway.

  “And then what? Call 911?” Calling 911 doesn’t fit. They can’t come and just hold your hand. If you call, you’re asking them to intervene. That would be a painful disaster for all involved. You don’t want EMTs pounding on her chest and cracking her ribs.

  “No, no. I don’t want that.” Heavy sigh.

  “So then what?” If you know she’s dying, it will be tough to keep driving. You can’t concentrate when you’re bawling.

  “It would be nice to have a friend drive me so I can sit in the back with the baby. What if I called someone to bring us home?” If you call somebody, how are you going to get the extra vehicle home? You can’t leave a car unattended an hour’s drive from home.
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  “There’s no help for it then. I will drive her home alone; she might pass away on the trip. God knows that’s not how I want her to go, but I’m just going to have to deal with that possibility.”

  Once I finished talking to myself, I called out to Emmalynn, “You know what, baby girl? We have plans this evening. We are going to visit some friends. These women are excited to see you, and it would be great if you could just hang in there for a little while yet…please.” I whispered softly, more as a prayer to Jesus than a request of Emmalynn.

  Whether she understood on any level what I asked of her, I got in the car to drive.

  Knowing I would be in Milwaukee, my friend Marie and I made plans to meet for supper to celebrate my upcoming birthday. We met at a hole-in-the-wall diner to hang out more than to enjoy the food. It was important to me that she meet Emmalynn.

  During the last several years of my work as a bereavement specialist, Marie had been there to encourage me in my personal and professional life. She worked in the business office of the hospital where HALO was founded, and she had been my friend in good times and in bad, in sickness and in health. When I had wanted to give up during my extended illness, Marie had not given up hope and told me she was sure my days were not done yet. She knew I would rebound and would still be able to make a difference for babies and families who were facing death and the inevitable grief involved in the loss. Her emotional and spiritual support helped shine light into my darkest hours.

  The mood during supper wasn’t heavy. At one point I even joked, saying to Emmalynn, “Hey, little girl, just chill a moment, will ya?” as I put her in Marie’s arms so I could use the restroom. This was an unnecessary admonishment, but I said it to lighten the mood and alleviate some of Marie’s hesitation over being left to hold the baby while I was out of the room. I went out of my way to help ease tension regarding Emmalynn’s physical state when others were around. This wasn’t the first time Marie had been asked to step up to the plate and out of her comfort zone, and crazy enough, we’re still friends.

  I noted that Emmalynn still wasn’t her normal self. I fed her again, and as the formula dripped through the tubing into her stomach, a thought flitted through my mind that this might be her last meal. I said good-bye to Marie and packed up the diaper bag again and rolled the oxygen tank out to the car.

  I was happy about our plans for the evening, anticipating seeing some close friends whom I had bonded with in a grief recovery group. The women were part of the Elizabeth Ministry of St. Dominic Catholic Church. I wasn’t there to bring Emmalynn as a show-and-tell item. Many of these caring women knew of my desire to care for terminally ill children and had supported me during my own health crisis. Yet they had never met this precious little baby, the fulfillment of my dream.

  After placing Emmalynn and all her medical gear in the car once more, I headed to the meeting, which was being held at my friend Ann’s home. I would reach between the front seats, stretching my arm back so my fingers could gently caress her cheek. She felt warm enough, and I hoped my touch would bring her the same comfort it brought me.

  The sun had already set when I pulled into Ann’s driveway. I honestly didn’t know what I was going to see when I opened the door to the backseat. If Emmalynn was dead, I wouldn’t crumble. I knew God would help me deal with whatever circumstances I had to face.

  The tiny glowing bulb in the overhead lamp didn’t give off much light. I leaned across the seat and looked carefully at Emmalynn. She was still breathing, though minimally. I took a deep breath of my own and told her, “Let’s do this, girlfriend!”

  I left the medical gear in the car, taking only Emmalynn and the car seat out. I walked into the side door of my friend Ann’s home, hooking the car seat’s handle in the crook of my arm. The porch light was on, welcoming me into a place I knew was filled with love. Ann and her husband, Bill, had raised nine children in this modest two-story home.

  The twenty women of the Elizabeth Ministry were gathered in the living room. My friend Ann saw me enter and happily took charge of Emmalynn. I went back for the supplies. When I returned, I found Emmalynn had interrupted the planning meeting for the Sanctity of Human Life month. These ladies were of various ages and sizes, but all of them oohed and aahed over my little girl. I could tell that some of the women were itching to have a little baby in their embrace. Emmalynn complied, accepting the women’s kisses and hugs without a peep of complaint.

  These women knew Emmalynn embodied something sacred, something divinely ethereal that is not valued in our culture at large. The women were drawn together by a reverence for human life in any stage, and they would not dismiss Emmalynn just because of any malformations. Instead, she showed it was possible to be loved, to be known, and to be cared for in every way, even with such a bleak diagnosis. Seeing her eight-pound frame and recognizing her humanity in spite of her frail condition provided a reality check. She helped us understand in a whole new way that life—even with grand imperfections—is precious and should not only be protected but also be cherished.

  Toward the end of the meeting, I pulled Emmalynn’s little body onto my lap and turned her onto her tummy, laying her across my legs. I stroked her back with enough pressure to make it comforting and not a tickle. When I pulled her diaper down slightly to gently work my way down her spine, I could see her bum was slightly reddened from the pressure of sitting most of the day. It wasn’t an open wound, but it pained me to see the skin was pinker than usual. I gently massaged the area, and even though I didn’t cry in front of the women there, my heart was aching that she might have been uncomfortable.

  When Emmalynn and I got home from the meeting, all five children were there, and Mark arrived home from work shortly afterward. I sat in the living room and attempted to feed Emmalynn, but the formula wouldn’t slide down her nasogastric tube. This was a warning signal, and my suspicion that something was amiss was correct.

  Andrew wondered what we were going to do if she couldn’t eat.

  “I think she’s getting ready to go to heaven,” I said. “She doesn’t need to have formula if she’s getting ready to go there.”

  I flushed Emmalynn’s nighttime medications through her tube. Afterward she wasn’t showing any signs of being Pentecostal at all, but I knew it was God and not the medicines at work.

  I noticed that her arms and legs were cold and her skin was mottled. This was further evidence that her body was shutting down. I wanted to do something to help her, and I’m not sure if I even formulated a coherent prayer at that time, but it occurred to me that I could share my body heat with her much like a mother kangaroo does while her baby is in the pouch.

  I went upstairs and took off my own clothing, and put on my heavy, warm, fuzzy green bathrobe. When I got back downstairs to the dining room, Mark was singing to Emmalynn, holding her with her head tucked up under his chin. He knew I’d been told she was deaf, but he didn’t care. He still talked to her and sang “Jesus Loves Me” as though she could hear every word. The vibration of Mark’s voice through his throat soothed Emmalynn, and she was contentedly nestled in his embrace.

  By 11:30 p.m. all the children kissed Emmalynn good-night and loved on her. One at a time each drifted off to bed. They all had things to do the next morning.

  I was sitting in the chair at the dining room table, and Mark gazed at me. My normal bedtime would have been a few hours before, but he was taking my cue that things were different this night.

  “Are you going to stay with her?” he asked.

  “Yes, I am,” I said quietly, nodding. “We’ll see how it goes.”

  It was seventeen-year-old Charity’s night to watch Emmalynn and sleep on the couch. She was ready for bed, wearing a T-shirt and shorts, her brown hair pulled back in a ponytail. She settled on the bench across the table, just a couple of feet from me. Mark said good night, and Charity and I were alone with our little girl. I believed the end was near; for a brief second I contemplated calling some hospice workers so I could ha
nd Emmalynn over to professionals and have someone else shoulder the responsibility for knowing whether she was truly dying or not.

  My prayers for her all along were that she would not die in the middle of the night lying in her little chair. I wanted her in my arms, close to me. I had the hospice phone number on the fridge, but I didn’t call. I decided that this responsibility was one I wanted to bear myself.

  I had taken off all of Emmalynn’s clothing except for her tiny diaper and tucked her inside my bathrobe. She was lying on my chest, skin to skin, which is the best way to transfer heat to a baby who can’t regulate temperature well on her own. My training as a nurse in the maternity ward was standing me in good stead now.

  Emmalynn couldn’t get any closer to my heart as her head rested on my breast. Her chest and tummy, arms and legs relaxed against my rib cage and abdomen. I could feel her melt against me, able to absorb the warmth of my skin into her own body. My bathrobe covered her backside, and my arms rested under her little bum to help hold her in place. She felt soft, quiet, and warm.

  By this time, Emmalynn’s breathing was shallow and infrequent. She wasn’t in pain, the meds and my comfort measures had taken care of that. Miracle of miracles, she wasn’t seizing either. I don’t think she could have been more enveloped in love at that time.

  I listened to her breath sounds as she began to “click,” the sound a baby makes when breathing with only the top part of the lungs.

  Close to midnight, Charity got up from the table where she had been sitting with me. “I’m going to go lie down on the couch, okay? Call me if you need something.” She was seventeen years old, but she had the presence of mind of a much older woman, and this was a solace to me.

  I began to pray. Since I wasn’t able to formulate anything coherent, it was more like, “Dear Jesus. Dear Jesus. Dear Jesus.” I’m grateful God didn’t need me to spell out in an eloquent way what my needs and desires were for my child. He knew what was most beneficial in that moment. I let Jesus be my go-between that night as Emmalynn and I sat with our hearts beating together as close as humanly possible.