Sarah and Emily would turn 29 years old at the end of this year. I can’t believe it’s been so long. And yet I have never written down their story. For the first few years I tried to organize things in my head, but I always got too bogged down in the details and the grief. In these days of the COVID19 pandemic, I might never have told the story otherwise.
In 1988, when my 3rd son Ryan was a toddler, I began wondering if it was time to have another child. Pregnancy and childbirth had been smooth sailing for my husband Bret and me up until then, and so we assumed having children was a bit like a mail-order catalog: pray about it as a formality (OF COURSE the Lord wanted us to have more children!), wait a few months, and voila! Another little baby in our growing family. Except for the fact that we only seemed to have boys, it was pretty under control.
So I went to the temple one day to pray about having another child. The Lord speaks to me through internal “visions” where I see in my mind’s eye what the future could be like, through words in my mind, and through a settled feeling of every-day peace that what I am seeing is His will. (Although sometimes I also feel a lot of joy because the future looks so wonderful). Anyway, this time I got an answer to my prayer that I wasn’t at all expecting: “Wait.” Hmm. What was I supposed to do then? I went to graduate school instead.
In fall of 1990 we moved to Fresno when Bret accepted a job as a professor at Fresno State. After a few months we settled in and bought a house. I took my question to the Lord again, and this time got a confirmation that it was fine to have more children. Sure enough, after just a month or two I was pregnant. Our new insurance plan was Kaiser Permanente, which was so comprehensive that we didn’t even have copayments. It was a good thing, too.
The real adventure began when I went to my 12-week prenatal appointment and the doctor brought in an ultrasound machine! I’d never had an ultrasound in my life before. All three of our oldest boys were born in Iowa during Bret’s graduate school, and our bare-bones student health insurance didn’t pay for luxuries like ultrasounds (or epidurals). I’d gotten very good at diagnosing various child and adult ailments on my own in order to avoid the impossible cost of a doctor’s office visit.
It was amazing to have my first ultrasound. I had done research and looked at photos of 12-week fetuses before, but I couldn’t believe how well-formed a baby is at that stage: a whole little body with arms and legs, kicking and squirming around. But the best thing of all was, there wasn’t just one baby–there were two! They were kicking each other, two perfect little silhouettes, and I fell in love instantly. My heart filled with joy. What a blessing!
The doctor printed off a couple of photos and I drove straight to Bret’s office. I knocked on the door and handed him the photos without any explanation. He smiled and started looking at the photos, but then did a double take. “Wait,” he said. “Are there two?!?”
Unfortunately for me, I’m not the sort of person to leave well enough alone, and I immediately began doing research into twins. Only three days after the ultrasound, my initial feeling of joy was replaced by dread as I read the statistics for preterm birth, and how premies fared. Back in 1991, most babies didn’t survive until after 32 weeks of pregnancy. If the babies were born at 24 weeks they didn’t even try to save them. And without the incredible treatments used today, most early preemies went through life with permanent handicaps, even if they survived. I was really frightened, and asked Bret for the first of many blessings. The blessing was full of promises, but not the one I wanted to hear: that they would live and be normal. Somehow I knew things were going to go wrong.
I did pretty well through the next couple of months, however. It was a fairly normal pregnancy except for two things. First, I was extra sick and extremely hungry! The only thing that seemed to settle my stomach were huge, fat-filled meals, like the day I went to one of those fast food fish places for lunch and ate over 1200 calories in a single meal. I remember lying on my back a lot with my feet up on the couch, moaning. The other thing that was huge was my stomach. It was like skipping the second trimester completely and heading straight into the third.
In late October I was walking the boys to school and noticed that my belly was really swelling. I was getting so large that the tendons in my hips were stretching too far, and it hurt to walk! I kept it up, though. I’ve never been one to succumb to pain much during exercise–I’m more the type to figure out I have a blister only after it has already popped. But the discomfort was completely overshadowed by yet another ultrasound. They were both girls! I was beyond thrilled; I’d nearly given up on having any girls at all. The moment before Ryan was born I’d known he would be another boy, but instead of feeling disappointed I’d had a wonderful internal vision of a row of tall young men, dressed up like missionaries. At that moment I was overcome by love and pride for them! It was an honor to be a mother of boys. But after that I figured maybe I’d never have a girl. Anyhow, we named our twins Sarah D’On (after my Mom) and Emily Nora (after me). Later I realized that Sarah was the main character in the book, A Little Princess, which had a lot of influence on me as a child, and Emily was the name of her doll. My sister says I always named my dolls Emily when we played house.
By Thanksgiving it looked like time to stay close to home. I was 24 weeks and huge. Bret’s brother was married in St. George over Thanksgiving weekend, but he and the boys went to the wedding without me. I spent the weekend trying to sleep in a chair, because it hurt too much to lie down. All the little muscles and tendons in my ribs and hips were stretched too far, some of them torn, and my lower back hurt acutely after just a few minutes on my side. I’d read somewhere about pregnancy support girdles and decided I needed one. I called my doctor’s office to ask about them, but the nurse insisted I’d better come for a visit instead. She scheduled an appointment for the next morning.
At that appointment everything changed. I never went home at all. Their faces were serious as they hooked me up to monitors and performed yet another ultrasound. Let me just say, in passing, that doctors and nurses are horrible at keeping secrets. What, you don’t think I suspect anything when you leave the room to go get someone else to come look? Anyway, soon afterwards they walked me straight across the bridge from the doctor’s office into the hospital–who knew the buildings were connected?–and into the perinatal unit.
Secrets of hospitals: there are hidden rooms all over the place. Behind a door, right next to Labor and Delivery, is a room full of monitors, IV’s, and women who are trying very hard NOT to have their babies. Also, hospitals (at least in 1991) don’t have dental floss. They figure you won’t be there that long or something. It drove me crazy. Also, you can have as many pillows as you want. Just keep asking! I think I used 6 or 7. Also, there are little drawers all over the place filled with cookies and crackers, and fridges full of soda, juice, yogurt, and jello. There are BIG ROOMS full of snack storage. Which only helps when they are allowing you to eat. Also, it is REALLY BORING. Take all your electronics (all we had were cassette tape players back in 1991) and be prepared to watch a LOT of TV. Also, doctors aren’t magical healers after all. There are way too many things that can’t be fixed.
They put me on an IV drip of magnesium sulfate, which is basically a thirst torture device. It also stops labor. Apparently the twins were in distress and producing way too much amniotic fluid (think pee), which was why I was so huge. And my huge uterus was trying to go into labor. The trouble with mag sulfate is that it’s basically poison. Your kidneys want desperately to get rid of it, so the only way to keep your blood levels up is to deny you water. I was allowed a few chips of ice each hour, and I spent the rest of the hour thinking about water and counting the minutes until my next drink. Also, mag sulfate makes you feel extremely drunk, so you can’t really move your arms and legs or even focus your eyes. That kind of ruins TV watching.
While I was in the hospital, the doctor tried a new procedure to see if it would help Sarah and Emily. The reason I was so big was that they were stressed. Sometimes identical twins (the ones that look exactly alike) develop a problem where they grow blood vessels between them and start sharing their blood supply. Because they are never exactly the same size, even though they have the same genes, one twin starts getting a little more blood, and the other one a little less. That makes the bigger twin get even bigger, and the smaller one even smaller. It also makes both twin’s hearts start having to work too hard. Because they were stressed, they started producing too much amniotic fluid. If it goes very far, this condition (called Twin Transfusion) can cause one or both of the twins to die before they are born. It also causes the mom to go into labor too early for them to be able to breathe. Nowadays doctors treat twin transfusion by actually opening up the mother’s womb and doing surgery to fix the placenta where the babies’ circulation crosses over. But back in 1991, there were no working treatments. My doctor was a highly respected perinatologist, and he decided to try something he thought might help: removing some of the extra fluid so things could even out a little. While I was still on mag sulfate, he performed an amniocentesis (using a large needle to remove some amniotic fluid), and removed nearly 3 liters of extra fluid.
I was on mag sulfate for a couple of days–I’m not really sure how long, because the time seemed to go by so slowly. Then the nurses started a different medication, called Terbutaline, that can stop contractions. They gave me some pills and sent me home to rest.
Unfortunately, as soon as I got home my contractions began again and lasted all day and all night. By the next day I was back in the hospital to stay. My mom came from Utah to help take care of the boys, and I began a month-long hospital stint. At least they gave me a private room, which wasn’t common in those days.
It was pretty scary and difficult staying in the hospital, worrying about Sarah and Emily. I spent all my time in bed. They even put a portable potty next to my bed because they didn’t even want me to walk to the bathroom. They strapped monitors to my belly to try and hear the babies’ heartbeats, but there was so much fluid and the babies were still so small that the monitors didn’t really work. The doctor wrote in my chart that the babies weren’t viable yet, which meant that if they were born that week the hospital couldn’t save their lives and wouldn’t try. I was really uncomfortable from all the blood draws, the IV, and especially all the overstretched muscles and ligaments in my abdomen. I laid on my side but had to turn over about every 20 minutes because the pain grew too intense. And the doctor didn’t want me to take any pain meds at all, not even Tylenol, in case I got an infection from the amniocentesis needles. Every 4 days or so they would bring in an ultrasound machine and draw off 3 more liters of fluid.
I was worried and uncomfortable all the time. But I experienced many tender mercies, too, that made things a little easier. I found a couple of fun books to read, science fiction because it was too hard to concentrate on regular novels. Star Trek Next Generation was on every day at 3:00, a real blessing in that pre-video age. Once I even tried to play a recorder (instrument), but ended up gasping and nauseated after just a couple of minutes. Don’t try to learn a wind instrument in low oxygen! Bret brought me a tape recorder and a few cassettes, and I listened over and over to John Rutter’s Gloria album. There was a setting of “The Lord Is My Shepherd” that always brought me peace. A few friends came to visit, and someone brought me the Sacrament every Sunday. Most of all, however, I could really feel the many prayers that were being said for me. It felt like those prayers were a hammock made of many strings, softly and strongly supporting me and keeping me from falling into despair. Even though the priesthood blessings I received still made no promises, and even though I suspected things weren’t going to turn out the way I wanted them to, I still felt the “peace that passeth all understanding” which comes from the Holy Ghost.
One evening, in retrospect just a night or two before Sarah and Emily were born, something changed. The hours of night were endless, and I slept only very fitfully since I had to turn over every 20 minutes to relieve my hip and back pain. But this night something was different. Every time I woke up from my doze, I got the impression that someone was in the room with me. It was so comforting not to be alone! Yet, when I opened my eyes, I couldn’t see anyone. I wondered who it might be, and settled on my maternal grandmother, who was also named Nora. Maybe she was there, sitting in the rocker, just being with me. It felt wonderful.
Later I found out that Emily died in utero sometime in the 24-48 hours before Sarah was born. I wonder if my grandma came for her. Just in case you were wondering, I’m absolutely certain that babies’ spirits can come and inhabit their bodies long before they are born. I had such a strong sense of Sarah and Emily’s personalities: Sarah was peaceful and serious, and Emily was feisty and energetic. I’ve sensed the personalities of many of my babies before they were born, some early on, some later. It’s the same kind of feeling you get when you suddenly feel the presence of a loved one who has passed away: instead of remembering what they are like, all of a sudden you get the sensation of actually being with them. Usually for me I realize that my memories are a little off when compared to when they’re actually there.. Not that it’s happened to me all that often, but sometimes.
The next day (or the next) was a Sunday. It was pretty hard to keep track of days, but I know it was a Sunday because my doctor came in, ready to do another amniocentesis, and I called the church to get Bret to come hold my hand. No cell phones in 1991 either, and no texting. The missionaries dragged him out of church and he drove over to the hospital. The amniocentesis procedure had become increasingly painful as time went on–maybe I had bruises or something–and I wanted Bret there. They pushed my bed from my room to the perinatal room, and gathered the ultrasound and the other equipment. The doctor got impatient at one point because they didn’t have the right equipment. I panicked, thinking he was going to leave until the next day, and I was throwing up all my food because of the pressure on my stomach and needed more space again. But he came back.
Using the ultrasound machine, he guided the needle into my abdomen and drew off another 3 liters. But then he looked a little more closely. He told us that he couldn’t find Emily’s heartbeat, and that Sarah’s heartbeat was getting slower and slower. He would have to perform an emergency C-section, right then. It was Sunday, December 29, 1991, and they were at 27 ½ weeks gestation.
I didn’t believe him, even though he showed me the ultrasound. I just couldn’t wrap my head around it. After all, the nurses had been checking the babies’ heartbeats, right? But it was easy to hear the same one twice and think it was both of them, with all that fluid. I was so glad Bret was there. After listening to me for a minute he told the doctor that I needed to look at the ultrasound machine again. Still no heartbeat.
I don’t remember much after that until I woke up in recovery. The first thing I remember saying was, “How’s Sarah?” It was the first time I’d used their names around the health care professionals. The doctor came in a few minutes later and said they were working on Sarah, but she was alive. He said I flooded the OR with amniotic fluid, even after what he had just removed. I kept hoping someone would tell me it was all a big mistake and that Emily was alive too, but no one said anything. I don’t know where Bret was during this time. I think he was with Sarah while they tried to stabilize her.
The next thing I remember is being back in my room when they brought Sarah in so I could see her. She was in an incubator and hooked up to a ventilator and a bunch of IV’s, surrounded by about 4 or 5 doctors and nurses. They honestly just wheeled her past my bed and took her back out again. I didn’t even get a good look before they transported her to a nearby children’s hospital with a big NICU. I was in Fresno Community Hospital, and they took her to Valley Children’s. She was in a lot of trouble that first day. She weighed just 2 lbs and couldn’t breathe on her own, of course, even though they had given me steroid injections to help her lungs develop. During her first few hours she received 3 blood transfusions, experienced a number of seizures, and had the main vein in one of her legs collapse. Not a very auspicious beginning. Emily died from wrapping her umbilical cord tightly around her ankles, and when Emily’s heart stopped, Sarah bled out into Emily. So she experienced a very low blood level and low oxygen level for an extended period of time. I was still in denial, though, and didn’t think anything would go wrong with Sarah. I kind of ignored the seizures and worried mostly about whether her foot would heal from her poor circulation in that limb.
That night I remember as a haze of light. I finally had some pain killers, and I felt like I needed to keep the lights on all night. It was so much less painful to have a C-section than it was to be so big and pregnant that I felt really comfortable by contrast. I think there must have been angels there to help me, too. I don’t know if you’ve ever been in a NICU, but there is a very special feeling there that seems very similar to the feeling you get in the temple. I think it is the feeling of being surrounded by angels–spirits who are there to comfort the helpless little babies and their families. And the pure angel spirits of the babies themselves.
And it didn’t hurt that I finally had some pain killers. What did hurt was not having the babies with me. I was really grieving for Emily, and simultaneously aching to touch and hold Sarah. After a day or so I asked if I could see Emily, and spent some time holding her. I have a couple of pictures, but her skin was dark purple from having so much blood pooled in her, so she looked really terrible. The umbilical cord was still there, wrapped around her ankles. They asked what we wanted to do with the body, and I said I didn’t know. I was so confused about whether or not she had really died, or would be born again later, or what. What if her spirit had gone back to heaven to try again, but we never had any more girls? What then? Or was she all through with life after just a couple of months in the womb? Was she sealed to us? Did we have two babies or one? I couldn’t bear the thought of losing her not just for a while, but for eternity.
I still have some of those questions, but they don’t bother me anymore. The Church of Jesus Christ’s teachings about stillborn babies are pretty ambiguous, but I know a few things. First of all, it really helps that I was later able to have another daughter, Karen. If Emily had wanted/needed to spend more time on earth, she has had the chance; if not, she will have the chance later to grow up in a resurrected body, just like Sarah. I know there are two of them, because I sensed they were together when Sarah died. So, whatever happens will happen. But it bothered me for a really long time. However, after a few days I managed to work out that she really was my baby, and I called the nurses and asked that she be cremated. It seemed impossible to bury such a tiny thing in the Fresno cemetery. Anyway, we doubted we would stay in Fresno forever, and how could I leave my baby behind if we moved?
Meanwhile, I had to try to get better myself so I could get out of the hospital and be with Sarah again. Not to mention the boys! It had been hard to visit with them in the hospital, even on Christmas Day, because they were so rambunctious and I was afraid they would bump my bed, which caused additional pain. So I was really anxious to get home. However, I had a low-grade fever for a couple of days after the C-section and the doctor wouldn’t let me leave. Since I hadn’t walked for a month, it was just as well that I had a few days to try walking around the unit. At first my ankles would swell just from the gravity when I got out of bed. My legs were the thinnest they’d ever been, as thin as I’d wished they were in high school. And I only weighed 120 lbs, the same weight I was when we got married. I realized that I should appreciate having muscles a little bit more.
Finally, on the fifth day after the C-section, they released me from the hospital. I think I went straight to the children’s hospital without even going home first. The NICU there was really large: rows and rows of incubators with babies on ventilators, at least 40 of them. Sarah was among the smallest there, but not the sickest. A few times we saw babies who were about to die from preemie complications. It was a sad place, but a beautiful and peaceful place as well. There was just a special feeling there. It was on the ground floor and completely surrounded by windows, which helped. And in addition to the nurses watching carefully over each little one, there was a feeling of many, many heavenly watchers there as well.
To get in, we had to scrub up to our elbows and wear gowns and masks. But once inside, we could reach into her incubator and touch our tiny 2-lb little one. I learned to watch her monitors, to make sure her oxygen sats were ok, but they were always pretty good. Those steroids had done some good after all, and her lungs weren’t bad, although she couldn’t keep them up without the ventilator at first, probably just because she was so small and thin. She had an IV in her scalp, and her skin was dark pink and wrinkly, covered with that fine downy hair that second-trimester preemies have. I would carefully hold her hand, put my hand on her head, and sing Primary songs to her in a very quiet voice. She always calmed down when I sang to her. They had successfully restored circulation to her leg, and although her foot was blackish it eventually healed completely.
At home, I was on my own again. My mom had left after Christmas (I still can’t believe how tough she was to spend a whole month at my house, and pull off Christmas to boot), and Bret had to go back to work for the new semester. The women’s organization from church was great, though. They brought me meals and babysat the boys so often that I felt pretty guilty. I would visit the NICU once or twice each day, and sometimes I left the boys home with my oldest son Sean in charge. He was only 9 years old and I worried quite a bit about leaving them alone, but what could I do? It was only for an hour or so at a time, and luckily he was a very competent oldest brother, but I still wouldn’t recommend it. I was pumping breast milk to feed Sarah, using this industrial-looking breast pump that Kaiser had rented for me. There was enough milk to use almost exclusively for her diet, once they started actually feeding her. They kept just on IV fluids for a long time. It turns out that very early preemies often develop holes in their intestines because they can’t digest food, but I didn’t really register that at first, either. It was certainly a blessing that Sarah had breast milk, since it was easier on her tummy.
After two weeks on the ventilator they started weaning her off again, and this time succeeded. It was about then that I got to hold her for the first time, too. She was so light and tiny that it was hard to know she was even there. I sat in a big rocker in the NICU and held her, with that blue vent tube protruding, one eye on her O2 sats, my big yellow hospital gown billowing around, and this tiny face poking out of triple receiving blankets and a beanie cap. It still felt so good to finally have her in my arms. They call not being able to hold your baby after birth “aching arm syndrome,” and that’s exactly what it felt like. You feel like there is this big hollow emptiness where your baby should be.
Sarah’s next step was to tolerate a feeding tube and start gaining some weight. After 4 weeks, she was transferred back to the level 2 nursery at Fresno Community Hospital to gain weight and learn to eat. We could hold her whenever we visited, with just that little feeding tube attached. It was amazing.
However, just before her transfer, a huge bombshell hit. The doctor ordered a CT scan of her brain. I don’t know if it was just routine, or because of the seizures she had right after birth. Whatever the case, the pediatric neurologist set up an appointment with Bret and me to go over the results.
That day was possibly the worst day of my life. He sat us down and showed us the films, which didn’t make a lot of sense to me since I’d never seen anyone’s brain before. But the news he was telling us was really, really grim. He started out by showing us that her ventricles were enlarged. He then showed us the tissue around her ventricles, and on photo after photo said, “This tissue is necrotic. It’s dead. Her body is removing the dead tissue now, which is why her ventricles keep getting bigger.” Only her brain stem, or whatever the part of her brain was that kept her breathing and her heart beating, was intact. He told us she would never walk, talk, or even smile. I didn’t believe him. Again. He also told us that we should strongly consider institutionalizing her, because her care would be so difficult that it could destroy our marriage and our family. I couldn’t imagine that either.
Even 30 years later, I still feel the leaden despair and the shock of his news. I was already traumatized and grieving Emily’s loss. I was becoming accustomed to a level of psychological fear, and then pain, that would last for many years. That’s why I haven’t written down this story before. It is a beautiful story, full of tender mercies and miracles, but the shocks were so huge and devastating that I can hardly think of them, even now. It seemed so cruel, vicious even. What was the Lord thinking? How could he give me two beautiful daughters, twins, a dream come true, and then take them away again?
I guess the good thing about hitting bottom is that there is nowhere to go but up. We were pretty traumatized by now, grieving Emily’s death and the loss of our hopes for Sarah as well. But still, things started getting a little better. Day by day, Sarah got a little bigger and a little more stable, although she gained weight very slowly. I could hold her and sing to her every day, and chose as “her song” the Primary Song, “I Will Follow God’s Plan.” The text seemed perfect for her, and for me as well:
My life is a gift; my life has a plan.
My life has a purpose; in heav’n it began.
My choice was to come to this lovely home on earth
And seek for God’s light to direct me from birth.
I will follow God’s plan for me,
Holding fast to his word and his love.
I will work, and I will pray;
I will always walk in his way.
Then I will be happy on earth
And in my home above.
It was Sarah herself who actually provided the greatest comfort and healing. I can’t really explain what she was like, but she had a really special spirit about her that affected everyone around her. It wasn’t just me, either. The nurses fell in love with her, and the night nurses would carry her around in a little front pack. Everyone wanted to hold her and be with her, because of the way she made people feel. She was truly a tiny little angel, caught on earth in this strange bubble of timelessness and light.
After 10 weeks in the NICU we finally got to take her home. She was drinking (very slowly) from bottles, and weighed a whopping 4 pounds, double her birth weight. While she was still in the NICU my friends had thrown a baby shower for me, and I had the sweetest little tiny clothes to bring her home in. I still remember her clothes! I had sewn lace on her tee shirts and socks, and made tiny headbands for her hair. The nurses sent us home with little bows made of the smallest ribbon you can imagine, which I could stick in her hair with a little KY jelly. There was a little stuffed cat that had been with her in her incubator for weeks. I had decorated her whole bedroom with pale green and pink hearts, and sewn quilts, bedding, even painted the walls and stamped hearts onto them. It was a delight to have my little girl, even if her outlook was very different from what we had imagined. I kept trying to wrap my head around what the doctor had said about her development, and didn’t quite believe it still. I hoped for a little more.
Reality definitely hit, however, once we got her home. Like any baby, her sleep was disordered, only much more so. It turns out regulating your sleep/wake cycles is a learned behavior. Her brain also couldn’t perform its screening function by becoming accustomed to normal sights, sounds, or feelings, so it was extremely easy to overstimulate her. For instance, background noise plus a breeze blowing on her skin at the same time were too much. At first, the hardest task was feeding her. She would spend 90 minutes drinking about 1 ½ ounces of milk, then throw it all up just in time for her next feeding. I remember walking her down the street after midnight one evening after a long feeding, trying to get her to burp and settle down. She eventually did burp–and threw up most of her feeding. I had really high anxiety about whether or not she was getting enough to eat. After a couple of weeks the doctor switched her to an extremely expensive baby formula that was supposed to be easier to digest. I’d given up on breastfeeding, since they said she would never be able to nurse.
Most of all, I was afraid I wouldn’t be able to take care of her at home. Institutionalizing her was pretty much my worst nightmare (well, second; but I felt pretty secure in our marriage, so I wasn’t worrying too much about that one). I had the three boys to take care of as well, and felt like I had been neglecting them ever since I first went into the hospital. I don’t remember exactly how it happened, but one day I noticed a scripture in the Book of Mormon that really spoke to me. It’s in Mosiah 24, where Alma’s people are being kept as slaves by the Lamanites. The Lamanites won’t even allow them to pray out loud. They continue to pray in their hearts, however, and in verses 13-14 it says:
13 And it came to pass that the voice of the Lord came to them in their afflictions, saying: Lift up your heads and be of good comfort, for I know of the covenant which ye have made unto me; and I will covenant with my people and deliver them out of bondage.
14 And I will also ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs, even while you are in bondage; and this will I do that ye may stand as witnesses for me hereafter, and that ye may know of a surety that I, the Lord God, do visit my people in their afflictions.
When I read this scripture, I realized that the Lord could do this for me. And gradually, little by little, again things got better. We learned to just put Sarah to bed at certain times so we could sleep ourselves, regardless of what she was doing, since she wasn’t going to sleep normally no matter what we did. And after several weeks the doctors supplied us with a food pump to make feeding her easier. Anti-seizure medication kept her from throwing up so much. I got a handicapped sticker for our car so it wouldn’t be so hard to get her in and out, with all her equipment. The State of California has excellent support for the parents of handicapped children, and a few hours of respite care each week allowed me to clean the house and even made it so we could go to Sequoia National Park for a few days. Members of our ward and friends in the neighborhood trained so they could safely take care of her. And she still turned heads everywhere she went, like a beautiful little porcelain doll. She still flooded the world with her sweet, angelic spirit. I was blessed to get to talk about heaven to many, many people, since I was carrying a little bit of heaven around with me. Best of all, although later scans confirmed that Sarah’s brain was mostly gone, she had just a tiny bit of auditory cortex left. She calmed down when I picked her up, and she could hear me sing. Despite all the grief and trauma, I was surrounded by love. Despite the fact that I spent nearly all day caring for Sarah and the boys, I felt like it was going to be okay. I even felt a sense of joy in having such a wonderful purpose to my life. They said Sarah’s life expectancy was about 25 years, so I settled in for the long haul.
In July of 1992 we took a car trip to Utah to visit family, our first since Sarah was born. She cried almost the whole way there, which was tough. Her cerebral palsy kept her arching and fussing unless someone held her in a position where she was bent at the waist, and it didn’t work in her car seat. At home we pretty much held her all the time. But we made it just fine, and loved the chance to share her with our relatives. We even took her on a few hikes, which really turned some heads because she was still so tiny, about the size of a normal newborn, and trailing tubes from her pump behind her.
It was also an Olympics year, and while staying with my parents we watched the Olympics each evening on TV with Sarah in our laps. One evening, as we were watching the gymnastics competition, one of the gymnasts broke her ankle during a botched landing. Not wanting to miss out on anything, they just wrapped it and she kept right on competing, landing on one foot as much as possible. It was amazing, and I thought about how tough those girls were, to fight for what they wanted through so much pain. Then came one of those moments when the Spirit filled my heart and mind with a new set of thoughts and realizations, all at once. I was overwhelmed with how much pain Sarah had suffered just to live. All those days in the NICU with needles everywhere, struggling to breathe, nearly losing her foot. All those days since, crying when she couldn’t be held, unable to control her body, experiencing seizures and muscle spasms. I suddenly felt terribly guilty. She was here on earth just because of me, because I needed her so much and had pleaded continually with the Lord to keep her alive. It was ok with him, and ok with her, but still seemed so selfish. I went downstairs and knelt by my bed, asking for forgiveness. I promised that I would never, ever, put her through so much pain again in order to keep her alive. Only then did I realize that during her struggles, we still had hopes that she could have a normal, healthy life. It was the evening of July 31, 1992, and Sarah was 7 months old.
The next morning when we turned the baby monitor back on (we turned it off while we slept, since she cried randomly throughout the night, even though she was being fed), Sarah was quiet. It was a little unusual, but we decided to get dressed and eat breakfast during our “break.” An hour later she was still quiet, and I went to check on her. To my horror, she had wrapped her blanket tightly around her face and was covered in sweat when I unwrapped her. Her breathing was raspy, and even though her eyes were open she was completely unresponsive. We hopped in the car and rushed her to the ER, where they gave her some oxygen. She started to come around a little. Bret’s Dad, who was a family practice doc, arrived. And I remembered what I had promised the night before. I asked them not to place her back on a ventilator. Bret had given her a blessing in the car on the way there, and he said he had the impression that she was happy to be alive, and happy to be here, but I had to decide whether or not to let her go back into the ICU. “What do you want us to do, then?” asked the ER doctor. I didn’t know. It was all happening too fast. They took her back off the oxygen and sent her home with a powdered antibiotic.
Back at my folks’ house, I removed her feeding tube and gave her a dose of the antibiotic, dressed her in a new outfit I’d just picked out for her, then held her for a while. The raspy breathing had resumed. Eventually I laid her carefully under a chair and went to pray again, this time telling the Lord to let her go if it was the right time. A few minutes later she stopped breathing in Sean’s arms. His face melted.
Family came over from all around, and we sat in the living room and talked. I held her in my arms and reassured everyone that it was all right, and it was right then. When she began to be stiff and cold we finally called the mortician, and asked that she be cremated. Again, how could I leave my baby in the ground in Utah when we lived in Fresno? But I wasn’t really ready to let her go off in the mortician’s car. I tried to follow it down the street, but Bret held me back and told me it was time to let go.
That night I slept with her blanket. For days afterward, I heard phantom babies crying and wanted to go check on her. I nearly threw up when they returned her ashes to me in a plastic box, but we found a beautiful round vase with tiny pink roses on it to place her ashes in. It was so small. At her funeral some people sang songs and read scriptures and poems. There was a really lovely flower arrangement of tiny pink roses and baby’s breath that I had made over into dried flowers so I could keep it. And someone gave us a beautiful statuette of Jesus holding a couple of babies that I still treasure.
Now the really awful time began. Sarah had been such a comfort to be with, that my feelings of grief at the loss of Emily and at Sarah’s brain damage had been consoled just by holding her. Now she was gone, and I had lost my purpose in life. Worst of all, I felt horribly, horribly responsible for her death. I was sure I had killed her. There hadn’t been time to pray about what to do and come to a feeling of peace that we were choosing the right thing. What if we had kept the baby monitor on, or I hadn’t turned her feedings up, or we had waited a little while? I think every parent of a child who dies feels some guilt, but I had no idea it would be so bad.
For the next long while I was in constant psychological pain. I felt it in the pit of my stomach all the time. And the next few months were tough ones. I got in a car accident, totalled our car, and sprained my ankle. Then Bret had his tonsils removed and hemorrhaged one evening, spitting blood constantly into a cup as we borrowed a car to get him to the hospital. He lost so much blood that they had to keep him until the next morning, and even then he fainted when I tried to get him out to bring him home. I had to have surgery to correct a problem caused by the pregnancy. After a few months we tried to get pregnant again and succeeded, only to need a D&C when it turned out the pregnancy was precancerous, which meant I had to take birth control pills for a whole year.
I couldn’t even start to recover from our long ordeal until I was finally able to visit the temple again. Sometime in January or February we travelled back to Utah for another visit. There was no temple in Fresno at the time, so it was a 3 hour drive one way to Oakland to visit the temple there. Or maybe it was the Oakland temple; I remember a youth temple trip where they showed cheesy Mormon tear jerkers on the bus TV all the way there, which tore me apart. Anyhow, during the endowment session, my first in a long while, the seat next to me was empty. It felt as though someone came and sat in that seat and explained things to me, and I saw everything in a new light. I realized what it meant to live in the mortal world, and that I had been asked to sacrifice the thing I loved most by giving Sarah back to her Heavenly Father. For the first time, my guilt and pain began to ease a bit. Gradually things got better. After three years, Karen was born on December 30, 1994, right after we moved to Utah for Bret’s new job at BYU. Her birthday was just one day after Sarah and Emily’s. I had no idea I had been so terrified that something would go wrong until the moment she was born safely and I burst into uncontrollable tears.
It wasn’t until the fall of 1996 that I finally cried about Sarah and Emily. A friend of mine lost his oldest son to a car accident right after he returned from his mission, and to me it seemed similar enough to Sarah and Emily’s story that I grieved again. I still remember where I cried, outside the SWKT on BYU’s campus while Bret and I were walking to a movie there. I hadn’t been able to cry over any of it, ever, for years and years. No place seemed private enough, or safe enough. Maybe I was afraid I would fall apart and not be able to put myself back together. Finally, after a few months of additional grieving, I was able to heal from the constant pain I’d been feeling. Not that I forgot, or didn’t have moments of sorrow. But my memories changed from memories of death and suffering to memories of the beautiful things.
I now feel blessed beyond measure to have had these experiences. I learned to know the Lord through the things we suffered, by needing so badly to communicate with him. I have learned to see all the tender mercies he sent me along the way. I’m so very grateful for the seven months I spent with an angel by my side, night and day. I can never forget what that feels like. I’m also so grateful that I learned how strong I could be with the Lord’s help. Now, when things get really bad and I feel threatened by the darkness closing in, I remember that I chose the Lord, I chose faith, I was healed, and I can be healed again. And I have some angels waiting for me in heaven.