and nothing could console me.
My child, my long-awaited child,
My hoped-for, dreamed-for, prayed-for child,
At last had come. But she was not given a
Perfect body. She could not be what I
Hoped for, dreamed for, prayed for.
And the tears fell.
(Maria Elena Dahlquist, “My Journey” )
Kristiana Dahlquist Silver grew up in a quiet house. With four younger brothers and sisters, it wasn’t because she lacked siblings. Sometimes, though, when her cousins would come to visit, she would watch as they would drag every toy out of the closet, shouting and laughing and tumbling over each other like a litter of puppies—and she would think, “I guess my family is different.”
But most of the time, Kristiana didn’t think much about that. Having four siblings who couldn’t talk was something she was used to. All four had the same unnamed congenital birth defect, with its same manifestations: microcephaly (small head), tiny body, weakened immune system, intellectual impairments, inability to communicate with spoken words or to walk without assistance.
As newlyweds, Kristiana’s parents, David and Maria Elena Dahlquist, had dreamed of a large family that enjoyed spending time together. David, who in 1975 became choir director at Payson High School in Payson, Utah, imagined teaching his children to sing; Maria Elena, an avid violinist, had visions of a family string quartet.
The children came quickly. Kristiana, the eldest, was born on 22 October 1974, a happy and healthy baby. A year later, Maria Elena and David learned they were expecting another child. When Rebekah was born on 23 May 1976, David noticed right away that her coloring was unusual: instead of a healthy pink, her skin was almost purple. But she recovered quickly from her birth, and the Dahlquists thought they had brought another healthy child into the world.
For the first part of her young life, Rebekah seemed to progress like any other baby. At 22 months, however, she still wasn’t walking. Her head was smaller than normal, which meant her brain was not growing as it should, but the doctor assured the Dahlquists that she would continue to develop. Kristiana had also progressed slowly at first, and she was now an unusually bright little kindergartner, so her parents were not overly concerned.
Another baby, Jenny, joined the family on 4 February 1979. The following summer, three-year-old Rebekah was balancing herself against furniture, but she still wasn’t walking or talking. Finally the Dahlquists decided to have Rebekah examined by a specialist. While David was at work, Maria Elena took Rebekah to a neurologist with infant Jenny in tow.
The doctor became concerned as he examined Rebekah. He discovered that her retinas were speckled, a rare phenomenon. Then he noticed that her sister, five-month-old Jenny, seemed far too quiet. Maria Elena hadn’t been worried about the baby. “She’s just worn out from the summer heat,” she thought.
Upon further examination, it appeared that Jenny had the same symptoms Rebekah had. The doctor soberly announced his conclusions to Maria Elena: Something was seriously wrong with both little girls, but he was not aware of any similar cases, did not know if the syndrome even had a name, and could not tell Maria Elena what to expect—beyond the fact that the abilities of the two girls would be severely impaired.
Stunned by these revelations, Maria Elena, carrying a child in each arm, managed to find her way to her car. She collapsed in the front seat, clutched her two children to her, and sobbed.
And could not find the answers.
Why me? Why did this happen to me?
Doubts assailed my soul—doubts of my worthiness,
Doubts of the goodness of God, doubts of my purpose.
What did I do to deserve this?
And no one answered.
David and Maria Elena knew there was a possibility a fourth baby might inherit the same rare condition, but they could not deny the strong prompting they received that another child was to join their family. And after all, Kristiana was perfectly normal. So on 29 May 1981, their first son, Ryan, was born. “He did have a small head, but he was so alert,” says Maria Elena. “He played with toys that Rebekah and Jenny couldn’t play with.” Ryan followed the developmental charts for the first 10 months—and then his progress slowed dramatically.
“When the children were really small, we functioned like a typical family,” says Maria Elena. David agrees but adds, “You go through a grieving process with each revelation of illness, as if a child had died. Again, that’s what happened when Ryan was diagnosed.”
Ryan was 19 months old when the Dahlquists’ last child, Sean, was born—a Christmas baby they again hoped would be without problems. But again, Sean followed the pattern set by Rebekah, Jenny, and Ryan. “By the time Sean came, we were far more accepting of their conditions,” says David. “Still, we grieved.”
It took several years for the severity of the children’s conditions to become fully apparent. For the first few years the children seemed like most other toddlers. “I think I was in denial for a long time,” Maria Elena says.
Life quickly settled into a routine of spoon-feeding four little mouths, bathing, dressing, changing diapers, and more feeding. For Kristiana, helping her parents care daily for her brothers and sisters was normal. “That’s just the way it was,” she says. “I knew there was a reason my family was that way and that someday I’d learn what the reason was. But it was OK to wait; I didn’t have to know right away.”
Kristiana genuinely enjoyed growing up with her little brothers and sisters. Often she would put one or two of them in her red wagon and take them around the neighborhood. On Halloween she insisted on taking all of them trick-or-treating. One of her parents would drive the car, and at each house Kristiana would lug a costumed brother or sister to the door, yell “Trick or treat!” and ask for five pieces of candy.
Rebekah followed Kristiana into the Young Women organization. When Rebekah was healthy enough, Kristiana determined that her little sister would attend camp with her. While at camp, she fed Rebekah her meals, slept with her in the same bunk, and carried her around the campsite. Kristiana was accustomed to taking care of Rebekah—so she was surprised at the camp testimony meeting when the other young women, one after another, expressed how touched they were by Kristiana’s example. “Rebekah was my sister,” Kristiana says simply. “We went lots of places together, so I hadn’t given it much thought. That testimony meeting was the first time I was able to see the impact our family had on others.”
When Kristiana moved away from home in 1992 to attend college, members of the ward began stepping in to help. They assisted with housework or sat with the family during sacrament meeting when needed. “We’ve learned it’s OK to ask for help, even though it’s hard,” says Maria Elena.
And found sweet solace with the Spirit.
I sought to know the reason, the purpose,
To gain the strength to go on.
Line upon line, I learned to accept,
To have faith.
And my spirit grew.
“If someone had told me when I got married that I would have five children and four of them would be disabled, that I would have four in diapers for many years, I might have changed my mind about children and said, ‘No, I can’t do it,’” says Maria Elena. “But I didn’t know and thus have struggled and learned how to do what has to be done. With the help of the Lord, it was made easier.”
The Dahlquists and their physicians have yet to hear of others afflicted by the same unnamed syndrome the Dahlquist children have had. Doctors first predicted the four children would not live past age 13, so the family has considered each additional year a gift.
Each of the Dahlquist children has contributed to the family in his or her own unique way. Jenny, for example, loved to cuddle and be held. “My favorite time was early in the morning when I would get up to read my scriptures,” David once wrote. “If Jenny was awake, I would take her with me to the love seat, where she would sit quietly by my side. She snuggled and I studied. We didn’t say much, but I learned a great lesson from those experiences. How often do we take the time out of our busy lives to simply sit and commune, particularly with those we love? Jenny gave me those opportunities on a daily basis.”
In November 1995, at age 19, Rebekah passed away. Maria Elena, David, and Kristiana each turned to the gospel and the scriptures to help them cope with their loss. “After Rebekah died, a lot of the scriptures made even more sense,” says Kristiana. She found the prophet Jacob’s words to be especially comforting:
“For as death hath passed upon all men, to fulfil the merciful plan of the great Creator, there must needs be a power of resurrection. …
“… The spirit and the body is restored to itself again, and all men become incorruptible, and immortal, and they are living souls” (2 Ne. 9:6, 13).
“I think that all my years of scripture study in seminary finally came together,” Kristiana says. “I began to really understand what the Resurrection and the plan of salvation were all about.”
Two years after Rebekah died, 18-year-old Jenny had difficulty breathing and was rushed to the hospital. She lingered there for two days before passing away with her parents at her side. Then, in December of last year, Sean passed away at age 19—just two days after his Christmas birthday.
Though separated from three of their children through death, the Dahlquists feel their family bonds have only grown stronger. “There is no question that the spirit lives on after death,” says David. “We may not understand a lot about the blessings of being born in the covenant and being sealed to our parents, but there is a definite claim family members have on each other. Death is nothing to be feared, even though you don’t look forward to the separation.”
The Dahlquists have drawn strength from the Atonement. At Rebekah’s funeral, David quoted Alma 7:11–12:
“And [Christ] shall go forth, suffering pains and afflictions and temptations of every kind; and this that the word might be fulfilled which saith he will take upon him the pains and the sicknesses of his people.
“And he will take upon him death, that he may loose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to succor his people according to their infirmities.”
“The Lord knows what it’s like to no longer be able to run,” says David. “He knows the feeling of knees that bend only with pain, of a mind that no longer remembers, of a back that’s not nearly as strong—and He knows how to succor if we will but ask.”
The family understands that the days they have remaining with 21-year-old Ryan are few. His health has declined, and he is slowly losing some of his abilities. “We treasure every day we have with him,” says David. “We don’t look forward to saying good-bye, but we know it’s going to happen.” In the meantime, they cherish his sociable personality—the way he looks around in church for someone to notice and interact with him. And they savor their quiet moments at home with him and remember the memories they have shared as a family.
“We look at it as a blessing that they’ve been with us so long, even though it’s been hard,” says Kristiana, who is now married with a healthy child of her own. “My knowledge of the gospel has grown so much, and my acceptance of the Lord’s will has also grown.”
Maria Elena says her children have taught her to focus on what is truly important. Her four youngest might not have had the same kind of beauty other children have, she says, “but you love who they are. It doesn’t make a difference what they look like or sound like or walk like. You value the eternal soul of every child.”
And saw purpose to my life and their lives.
I felt the greatness of their spirits.
I learned the joy of simple things,
Of little steps, of today.
I felt the love of others who accepted, who understood,
Who loved, who taught, who shared.
And I found great joy.
“There are clearly special cases of individuals in mortality who have special limitations in life, which conditions we mortals cannot now fully fathom. … They are in the Lord’s hands, and he loves them perfectly. Indeed, some of those who have required much waiting upon in this life may be waited upon again by the rest of us in the next world—but for the highest of reasons.”
Elder Neal A. Maxwell, “Meeting the Challenges of Today,” in 1978 Devotional Speeches of the Year (1979), 153.
More on this topic: See Boyd K. Packer, “The Moving of the Water,”Ensign, May 1991, 7–9; James E. Faust, “The Works of God,”Ensign, Nov. 1984, 54–60; Pat Cowley, “Living with and Loving Our Handicapped Children,”Ensign, Sept. 1984, 44–47.