I Will Love You Forever Read online

  I felt fiercely protective, and sometimes I would spend the afternoon in the living room with her, relieving the girls of that duty, especially when she appeared to be having the most difficult time. I would work through my fear at that point by having a conversation with myself.

  “I don’t think I can do this.” Well, then what?

  “If she goes to the hospital, they’ll unwrap her blankets and take her clothing off to examine her. She’ll be surrounded by strangers. She’ll get cold, which could send her over the edge. Is that what you want?” No, it isn’t.

  “Bottom line then, what do you want?” I want her to be in my arms when she dies, held, peaceful, and loved to the very end.

  I did not have to do this, but as a friend of mine had reminded me to stay the course, “You promised to love her through this.” We were gifted with the opportunity to trust God anew, and He was going to help us do what was needed day by day.

  I could not carry Emmalynn’s physical disabilities for her, but I could carry her. Someone needed to be able to stay close when it was the hardest, to find the wherewithal to resist the urge to run, to stand by her even if they couldn’t fix anything or change the outcome. I wanted to be brave and steady, and I prayed continually, asking for that while also thanking God we could give her the “gift of presence.” She needed family to be with her more than she needed us to do things for her. I could not change the fact that she was going to die, but I was trusting that God would give me the grace and ability to mitigate her suffering when she died—and that she wouldn’t be alone.

  Mark called my sentimental devotion to Emmalynn the Steel Magnolia deal. I could sit and hold her for hours, and the tears might be streaming down my face because I was empathizing with her struggle for life, but if anyone had tried to take her away, saying she would be better off dying in a hospital crib, that person would have had a fight on their hands, and even if they had me by a hundred pounds, they still wouldn’t have been able to take her away.

  Baby Emmalynn not only brought joy to our family, she also brought spiritual comfort to those suffering grief over the death of a tiny loved one. My friend Bess and her husband, Stan, were one such couple. After years of trying unsuccessfully to get pregnant, Bess and Stan adopted children. A few months after adopting their fourth child, Bess suddenly became nauseated when she smelled smoke or bottled baby food. Sure enough, the doctor confirmed she was pregnant.

  Bess loved her adoptive children, but being pregnant was a special time in her life, and she thoroughly enjoyed carrying a child and wearing maternity clothes. All went well for a few months and Bess glowed with the pride of motherhood, but then she experienced signs of an impending miscarriage. The doctor told her to stay in bed, but despite six weeks of bed rest, she went into preterm labor. Stan rushed her to the hospital where Bess was brought into a delivery room.

  This was in the 1960s, and Stan was not allowed to follow Bess into the delivery room. He was frustrated, pacing in the waiting room with the other dads despite asking several times to be able to check on his wife. Bess was given medication during delivery, which left her groggy and disoriented, but she could see a little baby in a crib just out of her reach. The nurse kept coming in to check whether the child had a heartbeat.

  The nurse told Bess the child was a boy, and Bess attempted to sit up and reach toward the little baby, asking repeatedly to see Davey, which was the name she and Stan had picked out for a son. The nurse shook her head and moved the baby farther away from Bess, saying, “No, no, you’ll get a picture.” Bess was too weak and medicated to get out of bed on her own, and she lay back, assuming the medical staff knew what they were doing and she would at least have the picture.

  The doctor and nurses never took a photograph; they didn’t want Bess to have even a mental picture of her child, and they certainly didn’t want her to have a physical one. Bess and Stan never saw Davey. The hospital staff decided it was not a good thing for them to be able to remember how their baby looked or felt in their arms. The staff reasoned that they would be able to forget the experience more quickly if they didn’t have any memories of their dead child. Even their pastor discouraged them from having a funeral.

  In recounting the events forty years later, Bess felt that everything was wrong about the way she, Stan, and Davey were treated. She and Stan never wanted Davey to slip through their lives as though he had never existed.

  While I was working with HALO, Bess was free and even eager to talk with me about Davey. She showed me the white kimono with blue piping that she had carefully stitched for him but that he never wore. I gave her a beautifully handcrafted memory box as a keepsake for Davey, a redemptive offering though many years had transpired between the gift of her son’s birth and receiving the gift in his memory.

  Bess believed with all her heart that God had heard their heartbroken cries regarding her precious baby boy. Seeing the difference HALO made for other families experiencing the loss of a child encouraged both Bess and Stan greatly.

  Soon after we brought Emmalynn home, Bess dropped a gift by the house—the kimono outfit she had created for Davey. She trusted that I understood the value of her passing this precious memento along to our baby.

  One day late in September I put Emmalynn in the white-and-blue wrap. She looked adorable, so I took a few photos. Then I drove her to see Bess and Stan. It was important to me that they both meet her and have time to hold her without feeling pressured to make it quick or having anyone else vying for her attention.

  As I lay Emmalynn in Bess’s arms, Bess’s eyes glazed with emotion—not sadness, but anticipation—as she held Emmalynn close to her, imagining how Davey might have looked wearing the precious keepsake.

  Bess and Stan whispered in Emmalynn’s ears, asking her to say hello to their son for them when she got to heaven. It was amazing to me how Stan, who had Alzheimer’s, remembered his son who had died so many years before but during my visit repeatedly forgot who I was. He asked me a number of times, “Do you have any children?”

  I told him, “Yes, I do. I have nine—eight biological kiddos and now Baby Emmalynn.”

  He would nod and sweetly smile, then five minutes later he would ask me the same question again.

  Bess and Stan had waited more than forty years for a memory like the one they made while holding Emmalynn that fall afternoon. I also knew they had been in the habit of praying all those years that the medical community would treat parents and babies with compassion and respect so that parents could properly grieve and heal. Tears spilled down my cheeks when I realized they had been praying for me and countless other hospice caretakers and infant advocates across the country.

  Another special piece of clothing given to Baby Emmalynn was a handcrafted knit hat. It had yellow, white, pink, green, and purple stripes; a band of purple ribbon was woven around the edge. A pretty pink flower sat as the centerpiece. The cap was too large, but I rolled up the edges and put it on over the top of the blue-and-pink striped knit hat from the hospital nursery so it would fit her tiny head.

  The special gift was given to her by my friend Liz who was forty-two in August 2011. At the time she was pregnant with her eighth child, one miscarried and six live births. A 3-D ultrasound at twenty-three weeks showed the baby had no abnormalities—all measurements were perfect. She was nearly twenty-four weeks when Liz remembered having a fever, and afterward she never felt the baby move again. She believes her baby girl died during that time. Two days later she went to the doctor, and there was no fetal heartbeat.

  Liz explained the gift of the hat and all the tears and prayers that accompanied it:

  “I did an extreme amount of knitting after we lost our baby girl. I figured I knit over a hundred items, many for babies gone too soon. It was comforting to me, and my doctor told me it was probably because knitting mimics rocking. It was honestly what helped me through. Holding Baby Emmalynn was a huge step for me, and knowing she needed all the love that she could receive before she left this worl
d helped me to make that step. Also knowing she would be joining my babies soon was somewhat comforting.

  There was something special and innocent about Emmalynn. I knew her time was short, and as awful as it sounds now, I didn’t have to envy another mom who got to keep her baby when mine couldn’t stay. She helped start my journey toward healing.”

  For such a little squirt, Emmalynn brought much joy to my life and to the lives of others. I wouldn’t trade becoming disabled for anything, because then I might not have had the honor of caring for her. Our lives were destined to intersect, and they wouldn’t have if both of us had been normally and perfectly formed.

  I thought of Amie, my sister whom I miss so very much. I also asked Emmalynn to carry a message to Amie—to tell her that I love her, that I always loved her, even if she couldn’t understand that when she was alive. I wanted Amie to know that I was sorry she had died alone, but I felt as though God was enabling me to make the difference now that I could not make all those years ago.

  2

  AMIE

  I will praise my dear Redeemer, His triumphant power I’ll tell,

  how the victory He giveth over sin and death and hell.

  Sing, oh, sing of my Redeemer, with His blood He purchased me.

  On the cross He sealed my pardon, paid the debt and set me free.

  —PHILIP BLISS, “MY REDEEMER”

  In recalling my sister Amie’s life, one of the most distressing things to me is the absence of details. I have ached more at times because of what I missed in her life than what I experienced. I have heard that same ache in the voices of mothers and fathers of babies who were miscarried or stillborn. They say, “How can I love someone so much that I never met or hardly knew?” This is true for me. I hardly knew Amie, but I loved and still love her. Love doesn’t end with death. One aspect of grief misses what was, and another misses what could have been. Nearly half a century has passed, and I still miss what could have been when I think about my little sister.

  Perhaps the earliest memory I have of Amie was formed in Rock Springs, Wyoming. The late summer sun was streaming into our kitchen, and I sat at the Formica-topped table. My mom and dad took Amie, who was only a week old, and put her in the kitchen sink filled with warm water. But this wasn’t an ordinary bath. My parents kept Amie in the warm water for a few minutes to soften the cast on her left foot and leg. Amie had been born with a clubfoot, which bent ninety degrees so that it pressed against her ankle. To gently correct the malformation, doctors put on the heavy plaster cast. After the soaking, my parents painstakingly removed the white plaster. They later took Amie to the hospital to have a new cast put on. This process had to be repeated several times during the first months of her life, and to facilitate the treatments, we moved nearer the hospital in Salt Lake City.

  My next memories are snippets of Christmas Day, 1969. I was four years old. Amie was just four months old, and she was sick. Crying babies and hospital trips weren’t unusual in my world. My two-year-old brother, Rob, had inner-ear troubles, which caused multiple infections. The condition also affected his balance, and he fell often, resulting in repeated visits to the ER for stitches in his head and face. I thought Amie’s illness was just more of the same ol’ same ol’.

  No one knew just how sick she was. I have vague memories of a flurry of activity, my parents making phone calls, and the bleak darkness outside. My mom took Amie’s temperature with a glass thermometer, and the mercury filled the probe to 106. That number didn’t mean much to me. But my parents were worried enough to give her tepid baths and to make several calls, trying in vain to get in touch with the doctor on call. They found out later that the physician was too busy merrymaking on the holiday to answer the phone.

  The next day, after reaching our family pediatrician, my mom and dad took me to the home of my mom’s mom, Grandma Courtright. They dropped off Rob with my dad’s dad, Grandpa Vance. Then they took Amie to the hospital.

  The doctors quickly recognized symptoms of meningitis. The protective membranes covering her brain and spinal cord had become swollen and infected so badly that the doctor found it necessary to burr holes in her four-month-old baby skull to relieve the pressure on her brain. Unfortunately, no one on staff sought my parents’ permission before making the holes; they didn’t explain what they were going to do or why they had to do it. Perhaps it was just the way it was in 1969. They burred the holes after asking my parents to leave Amie’s room and go get some lunch.

  Mom came back to Amie’s ICU room and found that her precious baby had a number of tufts of blood-tinged cotton sticking to the dime-sized holes in her head. When the staff explained what had been done and the reason for the procedure, Mom fainted. She was completely overcome with the suffering Amie was enduring.

  Survival rates for infants with the type of bacterial meningitis my sister had contracted—meningococcal—were low. If the child survived, brain damage was almost always the outcome. During the next weeks, Amie came close to death too many times to count. Once the hospital staff gave her a blood transfusion, which she hemorrhaged right out of her rectum. After one of those near-death occasions, our family doctor sat with my mom and they cried together. He told her, “There’s going to come a day when we’re going to regret doing all of this life-saving of this little girl. There’s nothing else that we can do.”

  During the three days Amie was receiving the transfusions, my great aunt Marie and a group from her California church were praying, earnestly seeking God’s healing intervention on Amie’s behalf. The doctors had given up hope that Amie would respond to their treatments, but she rallied, and the meningitis quit actively ravaging her body.

  In February the doctors discharged Amie. The effects of the meningitis had left her brain severely damaged, causing as many as fifty seizures a day. She lost most of her hearing, her sight, and her ability to move in a coordinated fashion. Initially she wasn’t able to recognize anyone. Amie was now considered profoundly retarded, the widely accepted term in 1970. Caring for her took much of my parents’ time and attention; medical costs drained what little financial resources my parents had, and they incurred astronomical debt. There wasn’t a lot of time for asking all the whys. Three children had to be taken care of, and there was no one else who was going to become chief cook and bottle washer. Simply doing the next thing required most of my folks’ energy output. Dealing with the should’ves and could’ves was a useless expenditure. The question “If we don’t care for Amie, then what?” had no satisfactory answer, and so they did what had to be done. Their commitments forced them to push away their anger and resentment of having a child with such great needs.

  Our family valued Amie’s life and deeply loved her. And that love was rewarded. Eventually Amie came to know us in a whole new way after her hospitalization. She especially “knew” my mom, in what fashion she was able to know.

  My dad drove a truck, and it took him out on the road. Mom was Amie’s primary caregiver, and, for the most part, the only one able to comfort and calm her. For several years my mom carried Amie everywhere, as if they were joined at the hip. Amie didn’t sleep well, and consequently neither did my mom. In an effort to calm Amie and quiet her crying so the rest of us could sleep, Mom would carry Amie in her arms and walk up and down the street in front of our house. We had one sweet neighbor who would come out and walk with my mom even if it was 1:00 or 2:00 a.m. There was nothing this woman could do to relieve my sister’s suffering, but she came alongside my mom and helped share in hers.

  I would like to share a few memories of my folks.

  We have photos of Mom wearing her hair like Priscilla Presley in a beehive hairdo circa 1965, and then a couple of years later she switched to a Marlo Thomas look from the television show That Girl and wore it off to the side with a flip on the ends. She had a smile so pretty she should have been a model for Colgate toothpaste. That smile covered a lot of disappointment and pain, so it was difficult for me to understand how hard her life must have been
.

  My dad loved music. He was self-taught on the guitar, and even after Amie’s illness, he would play and teach me songs. It was a way to relieve stress, and we heartily sang “Jeremiah Was a Bullfrog” even if I wasn’t totally on key.

  For a long time I thought he had black hair because he used Brylcreem and slicked his hair back like James Dean or Elvis; he was every bit as good-looking as those guys. He also smoked Marlboro cigarettes. He would wear white T-shirts and roll up the cigarette pack in his shirtsleeve. He bought me packs of candy cigarettes, and I would do the same in my own shirtsleeve. We did not have seat belts when I was a four-year-old, and I rode in my dad’s truck, standing slightly behind his back on the right side so I didn’t interfere with his ability to shift gears. I would lay my arm around his neck and lean against him as we drove down the road. Windows down, breeze blowing through my wispy hair—Dad’s didn’t move, thanks to all that hair grease—we sang along to every song on the radio.

  Life wasn’t all sad or always chaotic.

  My mom liked the house clean and orderly. Her desire was almost laughable in light of all she had to carry, literally and figuratively, but she did her best to keep the clutter at a minimum. My brother and I were allowed to get quite creative with sheets and blankets that we used to make forts.

  Cooking, changing cloth diapers, washing laundry, and scrubbing dishes were never-ending chores, and my mother wore herself out attempting to keep up with it all. The money ran out long before the month was over. Amie cried almost constantly and would rhythmically and repeatedly bang her head against the floor or the crib rails or the wall. Keeping her from gnawing on her hands and arms, which left them bleeding and raw, was difficult to say the least. The stress level could be over the top, and Mom didn’t have any help on a consistent basis.