Birth and Naming
Independence Day, 1983. Dad had the day off. Mom was nine months pregnant with her fourth child in just under five years. The holiday called for doing something special, and Mom requested a motorcycle ride.
They took off on the Honda Trail 90 over the golden country of Birdseye, Montana, propelled by the waft of prairie earth and pine. Level ground quickly turned into downward slope; and as the motorcycle began to lose traction, Mom wisely spread and planted her feet and let the bike pass from underneath her, saving her and the babe within her from a tumble. Dad maneuvered on and was fine. Mom gave birth the following day.
The anticipation and arrival of new siblings were becoming great fun for Ian and Malia! Isaac had been born 18 months earlier. Grandpa and Grandma Harvey had come from town to stay then, too. Now another baby was on his or her way! Over the wall-mounted telephone with the extra-long cord, Dad relayed the exciting news that a baby sister had now joined the family, making two boys and two girls: boy-girl-boy-girl.
The year before, the film Annie, based on the Broadway musical, had captivated Malia; and since learning of Mom’s expectancy, Malia only talked of having a baby sister named Annie. “What if the baby isn’t a girl?” worried Mom and Dad.
Bequeathed with the names of several grand and great-grandmothers, the new baby became Mariana Engla Christensen. No one but the doctors and nurses reading her chart for the first time would ever call her anything but Annie—oh, except when she was naughty and Mom would call her “Annie Engla!” Mom and Dad didn’t dare tell Malia they’d given the baby another name (Malia says she was 12 before she knew); but all was well because Annie was another great-grandmother’s name, and Annie ended up suiting her much better than the formal Mariana Engla anyway. Later, as a toddler, in her helium soprano Annie would intone a line prompted by and rehearsed with Dad, “My name’s Mariana but my ‘priends’ call me Annie.” And, truly, nearly everyone Annie came into contact with from birth until her passing became her friend.
Annie got a lot of living into the first six years of her life before she lost the ability to walk and talk. Proportionate to her thirty-seven-and-a-half-year lifetime, her words and voluntary physical acts were few; and in retrospect, many of the things her family remembers her saying and doing seem to have been inspired in order for us to now be able to recall them with delight, to be reminded by her example, to prepare us for what was to come, or to assure us that Annie was at peace with her life mission.
She loved “all of Heavenly Father’s little ‘cweatures.’” One day, after Annie had come in from playing outside, Mom noticed Annie’s clutched fist and asked her what she was holding. Annie opened her tiny fingers to display a handful of roly-poly bugs!
Her delight ranged from quietly sweet when she rode ponies (real or otherwise), to rapturous when she insisted on riding a rodeo calf at the Sanders County Fair the summer before the onset of her disease. Bunnies, chicks, and baby goats similarly cheered her.
She loved singing Primary songs (“I Believe in Being Honest” was an early hit) and wearing boys’ clothes. The guitar thrilled her, and she prized the guitar picks musical friends and family gave her.
Her daddy indulged her with a mug of water on her nightstand at night. She loved McDonald’s Happy Meals, fish sticks, melted cheese sandwiches, pizza, grape juice, and M&Ms. She enjoyed a squirt of mouthwash (“Dad, can I have some of that hot stuff?”) after brushing her teeth.
Her soft, white, waffle, thermal blanket with the satin border helped keep her secure for many years; and she recognized and strongly protested, while she could still talk, against the less soft imitator that Mom would try to slip her when the original needed to be laundered.
Over the course of her life, she never stopped enjoying the water. Kitchen sink baths during infancy and toddler years turned into real bathtub pleasures and the absolute highlights of her week after Annie became unable to walk. Ice-cold sprinkler running tickled her as much as freezing backyard pools or a dip in a horse trough, stream, or river.
Connection with and Compassion for Others
Never shy, Annie made the rounds during Sunday church services, from charming curmudgeons to prompting a timid, not-yet-groom to pop the question to the gal he’d been sitting with for months. Annie asked people if she could go home with them and had takers several times. In hindsight, it’s clear that Annie eagerly sought making connections with and inspiring many people every opportunity she had.
On hearing a siren, with sincere concern, Annie often expressed, “I hope everybody’s okay.”
She noticed intently the poor and homeless and wanted to help them.
Months Prior to Onset of MLD
Annie enthusiastically started Kindergarten in the fall of 1988. Within a couple of weeks, however, she was unable stay on task; and, one day, to the complete exasperation of her experienced and much-loved teacher, Annie became especially emotional and uncooperative. She began feigning (or so Mom thought) that she’d forgotten how to tie her shoes and to zip her coat. The school psychologist directed that Annie stay at home one more year and that her family stop babying her so much.
Around this time, Annie sat quietly alongside Mom as she worked in the vegetable garden one day, and out of the blue she reflected in a soft voice, “Mom, everybody’s gotta die someday.”
Over the previous year Annie had sometimes sobbed at evening family prayer, “I miss my grandpas!” (Both of whose deaths had occurred before Annie was old enough to remember them.) Later she started adding, after attending a grand-aunt’s burial, “Mommy, will you go down in the hole with me?”
At Thanksgiving dinner that year, the hosting aunt asked each member of the extended family to share something they were grateful for. Adolescent cousins made trite, clever, or pressured expressions. Uncles just wanted to eat. Annie’s turn arrived. For some reason the room grew momentarily silent; and following the almost dramatic pause, Annie looked around the table and said quietly, “I’m thankful for my body.” Then she laughed a little at herself in embarrassment. Others in the room found it slightly odd, but the turn continued on to the next person.
Onset and Diagnosis of MLD
Then one Sunday evening in December, Dad found Annie dazed and mostly unresponsive. Mom quickly theorized that maybe her blood sugar was low; but when pouring fruit juice down Annie’s throat didn’t bring back her alertness, Dad and Mom rushed her to the emergency room at Pioneer Valley Hospital. A CT scan was performed, and an astute intern noticed an irregularity which resulted in a referral to Primary Children’s Hospital.
There Annie saw a neurologist, Dr. Vera “Fran” Tate, who had recently diagnosed two or three cases of a very rare genetic condition; and almost unbelievably to her, she thought she might yet again be seeing another case of Metachromatic Leukodystrophy, or MLD, wherein the patient’s body doesn’t produce a needed enzyme in order for the myelin sheath of the nervous system to form correctly. The condition is degenerative and ultimately terminal. Blood samples needed to be sent to Pennsylvania for testing. Dr. Tate received the results weeks later; and with enormous dread she asked to meet with Mom and Dad. Annie did indeed have MLD. Mom and Dad were told that Annie would likely die within the following three years.
Decline and Dolly
A special fast was held for Annie to be healed from her disease, but she continued to decline.
Over the course of the next nine months, Annie lost the ability to walk and talk. She barely maintained the ability to swallow. As her speech slowed precipitously, she insisted on the family’s following the prophet’s direction to read the Book of Mormon. As the book was pulled off the shelf and the page found, Annie would usually anticipate the reading by saying, with increasing slowness every evening, “And it came to pass.”
The new Latter-day Saint Primary Children’s Songbook was released around this time, and Annie gravitated toward a then new song about Heavenly Father’s eternal plan for His children, “I Lived in Heaven.”
Noticing Annie’s worsening condition, a family friend encouraged Mom to contact the Make-a-Wish Foundation, which grants wishes to terminally ill children. Mom was reluctant, possibly in denial or in shock about how fast the disease was progressing, but she made the phone call. A wish could take a variety of forms, but Mom and Dad posed to Annie the question, “Annie, if there’s anyone in the world you could meet, who would it be?”
Her response—“Dolly Parton or President Benson”—just about epitomized Annie: her intensity and embracing of the largeness, joy, and beauty of life, as well as her sensitivity to the things of the soul.
As it turned out, Dolly was easier to meet than President Benson, who was not in good health.
At the 1989 CMA awards, Dolly sang “He’s Alive,” a stirring praise song about the Savior’s resurrection, but Annie had already become a Dolly fan via the television variety show Dolly had hosted in recent years. Annie’s family initially attributed the attraction to Dolly’s glitzy show(woman)ship, but the following thirty years would reveal that Annie had somehow recognized Dolly as an oracle for articulating sentiments relevant to Annie and her unique mortal experience.
Annie’s wish came true in a crowded greenroom prior to a concert in Park City in 1990. Dolly entered the room, surveyed it, gave a polite general greeting to everyone, and crossed the room to spend her time with the “little cowgirl.” Dolly instinctively broke into her “Love Is Like a Butterfly,” a song that captures much of Annie’s rare purity, gentleness, and the particular way she affected people.
Annie’s body became emaciated during that second year after the disease’s onset, yet she maintained her characteristic energy, charm, and cheer. Unable to watch their happy daughter starve to death in a body that was still vibrant and healthy in so many ways, her parents opted to have a G-tube surgically inserted to allow her to be fed a liquid diet directly into her stomach. Dr. Tate cried, understanding the years of difficult repercussions, responsibilities, and decisions this current choice would entail.
Annie’s Life Mission and Contributions
The Gospel of John records Jesus and His disciples’ encounter with a blind man.
And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind? Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him.
Annie did not receive a miracle cure from her disease; yet throughout her life, the charity, serenity, and gentle gladness that she never stopped radiating reflected some of the sweetest and purest of divine attributes. Her needs called, and will continue to call, countless others to act in high ways—to ponder what really matters; to lift burdens physical, emotional, and spiritual; to find hope, peace, and joy amid turmoil; to hearken to the unheard yet real; to mourn with those that mourn; to value the gift of family; to marvel at the design and strength of the human body; to step up and do messy things even when it may at first seem awkward; to recognize that God adequately prepares each soul for his or her personalized mortal sojourn; to listen rather than advise; and to love rather than to preach.
The milestones of Annie’s life were rarely documented with announcements, invitations, gatherings, photos, or certificates. While she didn’t go to school much, to those who helped meet her needs Annie provided an education in compassion, service, and selflessness. Though she never earned a paycheck, Annie repaid many times over those who served her with unspoken yet perceptible and intense love, gratitude, insight, and inspiration. She leaves no fortune and only a handful of possessions enjoyed during her pre-diagnosis childhood, yet she passes to us a legacy of quiet perseverance, patience, obedience, sacrifice, and consecration.
A photo on the wall that hung above Annie’s headboard shows her running, as a young child, in the church “Fun Run,” but her long course with MLD was her defining feat.
Though Annie was denied participation in many celebrated life activities and achievements, she modeled beauty and strength that come from living in the world but not being of it.
As the phases of MLD advanced and ravaged Annie’s physical body, her spirit grew and became sanctified. Her family was privileged to observe this transformation, and we were all blessed to frequently sense the conduit from heaven that opened in her presence, both during the first decade of the disease when Annie spent her days in the hospital bed in the living room and during the last twenty years when she was primarily confined to her upstairs bedroom.
Another tender gift Annie was given was her soft, sweet scent. The first time she held her as a newborn, one of Mom’s closest friends commented about how particularly beautiful Annie smelled. That unique blessing continued over her life. Even with all else that broke down and suffered in Annie’s body during its final days, her hair continued to emanate that gently sublime fragrance. Showering Annie with kisses and smothering her with hugs was never difficult.
That she never grew beyond about 4’ 10” and that her soft hands and feet never grew past childhood also helped her keep her status as the loved baby of our family.
Care and Community
During Annie’s 32 years of MLD, Mom tirelessly and heroically cared for her. At times, well-meaning people questioned Annie’s quality of life. Those closest to Annie know the exquisite attention to Annie’s comfort, cleanliness, happiness, and protection from germs that Mom assured Annie early on she was committed to providing. What Mom desired for herself was always subjugated to asking what God wanted her to do for Annie and whether Annie still wanted to be here. The weight of that responsibility, the depth of love from which such devotion springs, and the breadth of sacrifice required during Mom’s 43 years of around-the-clock motherhood can surely only be fully appreciated and acknowledged by Heavenly Parents.
Annie and her family are grateful to the many individuals who have helped share the load of Metachromatic Leukodystrophy for the past 32 years. Annie’s social workers, physicians, nurses, aides, church leaders and associates, teachers, pharmacy techs, relatives, neighbors, and hospice caregivers are among that throng. And so are the friends, teachers, employers, professional colleagues, and spouses of Lemoine, Barbara, Ian, Malia, and Isaac. We have repeatedly been lifted by your support and prayers. Heaven has extended itself through you.
Annie passed away at home in West Valley City, Utah, where she had lived since 1985. Annie was preceded in death by her grandparents (Alvin Niels Christensen, Engla Hess Thomsen, Howard Walter Harvey, and Dorothy Janet Wilson); nephew (Ryan Scott Shaw); father (Lemoine Christian Christensen); and brother (Isaac Lemoine Christensen).
Annie is survived by her mother (Barbara Jean Harvey Christensen); brother (Ian Orihah Christensen); sister (Malia Rae Christensen Shaw (Scott)); aunt (Emily Christine Gibson Christensen); nieces (Willow Kate Christensen and Ruby Rae Shaw); and nephew (Corban Thomas Shaw).
Barbara, Malia, and Ian share our thankful, quiet yet firm witness by the Spirit that Annie’s spirit lives on and that the hope of resurrection and eternal life are realities. Jesus continues to be “touched with the feeling of our infirmities” and he “hath borne our griefs, and carried our sorrows.” “There is a resurrection, therefore the grave hath no victory, and the sting of death is swallowed up in Christ.” We know that “All things shall be restored to their proper order, everything to its natural frame—mortality raised to immortality, corruption to incorruption—raised to endless happiness to inherit the kingdom of God.”
No public service will be held. In lieu of flowers, Annie’s family believes she would invite you to seek out a way to share a moment with an isolated, ill, or homeless individual or to make a donation to Primary Children’s Hospital, the United Leukodystrophy Foundation, or a charity of your choice.