The week of September 13^th 1993 will always stick in my mind as the week I lost Christopher.

Christopher started preschool that Monday. It was an afternoon schedule and I was concerned about him being overtired, because he still took afternoon naps. I was working at the daycare and we walked over there early so he could ride the van to headstart. I knew he would come back to daycare tired, but he would adjust. He played outside afterwards because the class was at recess when he returned. He came back the first day and proudly announced to me that he tried a hamburger and he liked it. I had never been able to convince him to try them before. He was so picky. He was playing outside and he fell and hit his head. I was right there looking, but not at him. I didn’t see if he fell from the top of the slide or just from standing underneath. He’d been at the top minutes before, and it was a pretty tall slide.  When he hit, it was hard enough to leave the imprint of the sand in his forehead. I took him inside and he took a long nap afterwards. The next day, he fell off the slide while sliding down, and then took another long nap. Thursday of that week he fell off a swing at home onto the grass. While it didn’t seem he could fall very hard, he complained of a headache when we tried to walk to daycare. We ended up having to ask a neighbor to drive us the one mile, because he couldn’t walk it. I was concerned about his headache, and kept Christopher back from school that day. He took a 3 ½ hour nap in the baby room instead. The next day he didn’t have school. I expected he’d be feeling better by then and was surprised when he complained even worse of a headache. He couldn’t walk 3 steps without crying about the pain. We had to find another ride to the daycare and he spent another long nap in the baby room.

I still had no clue how serious this could be, and by Saturday I expected Christopher to feel better and we headed off to his uncle Kamron’s football game that his dad was coaching. At the game, he was still tired and didn’t have any interest in the game, or anything else. Later that afternoon he developed a fever and started vomiting. I relaxed a little because I figured he’d simply been coming down with the flu, and I thought that explained why he was still so tired and headachy. Sunday morning, however, he still didn’t feel better and his fever was quite high. When I came home from church he was moaning every time he moved, and would say “Mom, my back hurts.” After another hour he was reduced to just saying, “Mom.”

I would stop my reading and ask him, “What?” He didn’t answer and after the third time, in frustration I said, “Don’t call me unless you are going to say something like ‘My head hurts.’ Or ‘My back hurts.’” To my deep shame, I didn’t listen when it mattered most. He never did call out again. He continued to moan every time he moved and after we had given him Tylenol and his fever rose instead of breaking, we took him to the emergency room.

The doctor looked him over and then lifted his head onto his chest. He told us it might be meningitis and they needed to tap his spine to be sure. If the fluid they drew was milky in appearance, it was meningitis. At this point I didn’t know what meningitis was, although I’d heard the word before.The fluid was milky. His first night at the hospital was touch and go, although the nurses didn’t tell me that until later. My last words to that little boy who disappeared after that night were words of scolding, when I should have been taking better care of him.

We were told Christopher would be in for ten days. I felt faint at the news and had to sit down. I had never imagined needing to stay a whole ten days in the hospital! It turned out that the predicted ten day series of antibiotics—that’s what a normal treatment for bacterial meningitis is, assuming the child has a normal case—was a bit too optimistic. We could have benefitted greatly by bringing Christopher in a day sooner, had we known his symptoms of fever and lethargy were serious. Christopher’s immune system was on its last legs trying to fight an infection that proved to be a drug-resistant strain previously unseen within the U.S. I’d sit by his bed in the ICU unit and watch his blood oxygen levels, wishing he could wake up and start life again. We watched other children come in, go out, or linger—like us. Some were there briefly, as intensive medical care resolved their needs quickly. Some stayed longer, like we did. And there was one who was not going home, as the hospital was his home, because what he had was terminal and he was in his last days. It gave me a lot to think about. Three weeks and three different series of antibiotics later Christopher was moved to the rehab unit because his infection was finally being eradicated.

At the time I was simply waiting.That first night Christopher received a priesthood blessing promising a slow recovery. The next day they had to increase Christopher’s IVs to give him more medication. They induced a coma to help him heal and they given him a blood transfusion, too. His white blood cell count was badly depleted, and his immune system was almost spent. They suspected pressure on his brain as well, but were hesitant to drill for fear of further infection. They finally decided to go in, and found his brain was under extreme pressure, so they put in an outside drain. A few days later they discovered he wasn’t improving with his current series of antibiotics so they changed to 3 new kinds. His head wasn’t draining on both sides so a second drain was required.

Christopher had been lying down for several days, so he developed fluid in his chest cavity and they had to go in and drain that off, too. By this time they were pretty certain there was brain damage. His pediatrician, Dr Havlik, warned us that we would not take the same Christopher home that we had known before. At the time, I had no idea what that meant. 

Christopher was on a ventilator through all this and it was a triumph the day he was taken off it. I had not fully understood that he’d been in an induced coma and kept thinking he would wake up soon. He did become more awake. I expected him to start talking at that time, but he didn’t. He was extremely weak, and couldn’t be up or off his bed much because of the drains, that had to be kept perfectly level with his head. After he was taken off the ventilator, Christopher was finally ready to leave the ICU and transfer to rehabilitation. This was mid October and he’d been there for three weeks.

We went over to rehab and saw other kids in various stages of their own progression. Where they were and what they could do stood as a beacon of hope while I waited for Christopher to make the same steps. After the doctors pulled his drains, they decided he needed shunts and he had surgery on Oct 11^th for a double subdural shunt insertion. The following couple of weeks, Christopher was in a state of constant agitation. I will never forget the day Christopher’s two favorite neighborhood sitters came to visit him in the hospital. It had been on one of his bad days. The infection had cleared, but he lay in bed restlessly, shifting around a lot and making a noise. He was in pain and these sweet young girls were clearly were not ready for what they found. They hugged each other and sobbed. I felt terrible for them. This was followed by three more shunt surgeries, revising the existing shunts and placing a ventricular shunt. Once they got his pressure down, he was able to relax. He then lay there quietly for days. The staff began therapy with him attempting to get him to move, eat and any other actions at all, but he was nonresponsive. Finally discouraged by his lack of progress, the staff suggested sending Christopher home for a while. I was trained on how to change the diaper of a larger than baby person, and also on how to place his n-g tube and feed him, since he didn’t eat or respond to food in his mouth. A vendor came in and sold us a wheelchair. We chose blue for the frame and had every support possible. The chair reclined and he had supports for his head and all up his sides and a butterfly harness across his chest. He was released from the hospital Dec 1^st, 1993.
In spite of this I was optimistic. I still expected him to wake up one day, back to his old self. I realized he wouldn’t be back to preschool that year, but surely next year, by kindergarten, he would be better. Kary built a rail for his bed and we placed boards under the legs at the head of the bed to tilt it slightly to make it more like the hospital bed he’s been using.

Some neighbors came over and helped Kary construct a wheelchair ramp for Christopher’s chair so we can get it in and out of the house. It doesn’t have rails, but it has a carpet so it isn’t slippery. I am so thankful for the help the neighbors and our ward have given us. They have taken turns watching Toni, giving me rides to the hospital, and now they have helped with the ramp. 

The home therapy began. A couple of therapists came by each week to work with him. I watched so I could copy their actions when they weren’t there. During the third week I asked the PT why she brushed his arms and legs; what was it for? She told me it could help his brain rediscover and reconnect with his extremities, and she taught me to do what she was doing. During this period of time the only emotion Christopher showed was to cry if we accidentally hurt him. Otherwise he placidly stared into space, occasionally focusing on something with his eyes, but only momentarily.

I began brushing Christopher’s arms, legs and torso, as well as gently compressing his joints twice a day. I stretched unused muscles to keep them flexible for later use.  I ran his feedings and cleaned up several times a day when he didn’t keep his formula down. Then I repositioned his Ng tube back into his stomach, slowed down the rate of his feeding, and started his formula again. I placed casts and braces on his hands and feet to ensure they didn’t begin to tighten and deform. And I waited.

About three weeks later, during church, something happened. Christopher started lifting his head out of the headrest in his wheelchair and holding it up for a couple of seconds at a time. A neighbor noticed and gave us an encouraging smile. His next doctor checkup was a little different. While he was still doing so little, he was a little more alert, and six weeks after I began brushing him, the doctor scheduled him to come back in for more inpatient therapy.

This was it. What I’d been waiting for. It began the second or third day as I walked toward his hospital room and from the hall I heard Christopher saying, “A A A A A B B B B B C C C C C D D D D E E E,” and then start over again. The nursing staff got him to endure his feedings better so he could take more than an ounce or two of formula over the course of an hour without vomiting it back up again. They began sitting his chair more upright and he began to build strength in his torso so he might sit up someday. Then he began to move his hands and start grabbing and holding objects.

Out insurance covered only so many days of inpatient therapy. This meant that in spite of his continued progress, Christopher had to be released a little short of three months after he went back in. The hospital staff was fantastic. They developed a program where Christopher could come in five days a week and receive the same amount of therapy he’d been receiving, but without the inpatient costs of a room and nursing services. They named this new program Day Treatment and succeeded in getting it approved by the insurance company. This allowed Christopher to continue to progress at an awesome rate. When he transitioned to Day Treatment Christopher was sitting with minimal support, scooting and rolling himself around on the floor a bit to reach toys he wanted and babbling words and phrases he heard. During the summer, as he was weaned back to regular outpatient therapy, he was crawling and transitioning to and from a sitting position at will. He had surpassed the original expectations of the hospital staff after his initial lack of progress. And we found ourselves on an unexpected journey.

As a child, my parents always started out our vacations with a prayer. They would pray for a safe trip, that we would have a good time, that everyone would get along—the  kinds of things every family hopes for on a vacation. As an adult, I have worked on continuing some of the good habits I was taught as a child, although I haven’t always been consistent. However, after my divorce I found myself leaning more and more on prayer, mostly because on my own I have ended up with cars that are older and less reliable and I have  limited resources. This is a blessing because I have developed better habits regarding prayer.

As children of God we are entitled to his help when we ask for it. We are more receptive of the help and more in a position to receive it when we are obedient to his commandments. As President Gordon B Hinkley said in his talk “You Are a Child of God:”

Never forget, my dear young friends, that you really are a child of God who has inherited something of His divine nature, one whom He loves and desires to help and bless. I pray that our Heavenly Father will bless you. May He smile with favor upon you. May you walk in His paths and follow His teachings. May you never speak the evil language that boys and girls are inclined to speak at school. May you ever be prayerful unto Him, praying always in the name of His Beloved Son, the Lord Jesus Christ. May each of us resolve to always follow Him in faith. May life be kind to you, for you are indeed a child of God, worthy and deserving of His love and blessing.

Jesse and I took a trip down to Cedar city at the end of July last year to visit my daughters and their families.  Before we left to come back home, we said the usual prayer and included a blessing on my car to get us safely home. As I was coming down the hill just north of Fillmore I felt a sudden jerking in my car accompanied by a loud popping sound. It startled me but the car smoothed out again and continued to drive without trouble, so I kept driving. At Nephi I planned to stop for gas, but as I slowed down in the exit it suddenly became very hard to steer. I fought my way to the gas station and when I was pumping the gas I also walked around the car and checked for signs of trouble. The steering problem felt much like it had years before when I developed a flat tire, but my tires were all okay. As we started to leave the gas station, Jesse watched out the side mirror and saw that my rear passenger wheel began wobbling wildly as soon as I got up to about 20 miles per hour. We limped to another gas station and I called my dad. Having done family history on my dad’s mother I was well aware that we have many relatives from Nephi, so I asked my dad if he knew anyone there were could call for help. He has two cousins about his age and he gave me both names. I tried the first, but he was on a mission and was not available. However, the second cousin was there and willing to come right over and take a look. It turns out the axle assembly for my wheel was heavily corroded and had snapped, no longer holding the wheel straight when it spins. It needed to be replaced. He had a young mechanic whom he recommended and helped me limp my car there, then he took Jesse and me to his house to wait while the necessary repairs were completed. A further blessing occurred when I had less than $500 in my checking account, but it turned out the repairs were cheap enough that I could afford them without a visit to the bank, and I even could afford a little Caesars pizza from a place across the street for  dinner before we hit the road again.

As we headed out that day I hadn’t anticipated getting an answer to that prayer; at least, not one that I would see. Usually the answers to such prayers are most marked by any absence of marks. We never see the troubles we were protected from because we were PROTECTED. We have this wonderful gift from the most powerful being in the Universe. Prayer is a gift that applies to every part of our lives. No part need be left untouched. Heavenly Father  wants to use his power to bless the lives of his children.  As Elder Richard D Scott said in his talk, “Using the Supernal Gift of Prayer:”

Prayer is a supernal gift of our Father in Heaven to every soul. Think of it: the absolute Supreme Being, the most all-knowing, all-seeing, all-powerful personage, encourages you and me, as insignificant as we are, to converse with Him as our Father. Actually, because He knows how desperately we need His guidance, He commands, “Thou shalt pray vocally as well as in thy heart; yea, before the world as well as in secret, in public as well as in private.”

I realized that the axle must have broken 55 miles south of Nephi, but I was able to make it to Nephi, a town where I had family that could help, and a mechanic who would work late and a repair bill I could afford to pay. I truly felt the answers to a prayer that day, a prayer that we had made a habit of saying before each trip. I feel truly blessed that we were able to go so far in a car that should have been undrivable as soon as the axle broke, and that it was by the power of an answered prayer that we were able to get to a place where we’d have help before it became impossible to go any further.

Another part of receiving answers to prayer is recognizing and expressing appreciation for them. My opportunity began as a thank you prayer and continues as I share my testimony with others. Sharing our testimonies is another way to show our gratitude to our Heavenly Father, as he desires us to do so. It brought me great joy to share this experience with my co-worker who is not a member of the Church of Jesus Christ of Latter Day Saints, but also has great faith in Jesus Christ and in prayer. She thanked me for this affirmation of her belief in the power of prayer. As Elder Scott said:

An important aspect of prayer is gratitude. Jesus declared, “And in nothing doth man offend God … save those who confess not his hand in all things, and obey not his commandments.” When we contemplate the incomparable gift of prayer and the limitless blessings that flow from it, honest appreciation fills our mind and heart to overflowing with thanksgiving. Should we not, therefore, continually and profoundly express to our beloved Father, as well as we are able, our unbounded gratitude for the supernal gift of prayer and for His answers that meet our needs while motivating us to grow?

As Elder D Todd Christofferson taught in an address to a group of young single adult wards , If our prayers lack the spirit, we need to start with gratitude. When we pray with gratitude for the good gifts of the Lord, for our trials, recognizing the Lord’s hand, we will have the spirit in our lives. If we live with thankfulness, he has more to give. So if our prayer feels uninspired, giving thanks will bring the spirit.

We will be blessed with more happiness and gratitude. The Lord knows each of us personally. He knows who we are, He knows what we need. No matter how long it has been since we talked to him, he knows us perfectly. And He couldn’t love you more than he already does.

Tonight I had an epiphany. Recently I decided to write my son Christopher’s story. The first reason to do so is because his story is very different from most of his peers. Another reason is because he cannot do so for himself. Finally, I have considered it because people have told me I ought to write a book about him.

Lately I have been looking at some remarkable young adults whose accomplishments I have enjoyed greatly. They created a TV show featuring clean comedy and have been wildly successful. They also participated in a Face to Face event to inspire LDS youth to remain strong in testimony and faithful to the Lord. And then I did it. I discovered that three of the cast members were born the same year as Christopher. And I compared him to them. Then I decided I need to write his story, as if to explain to the world why my son hasn’t done anything like the things these remarkable young adults have done.

This is not the first time I was guilty of comparing Christopher to his peers. There is an incident that occurred one Sunday when Christopher was eight years old. I had taken him to church, and because his behavior was like a toddler, I went to class with him. A few minutes into the lesson Christopher became bored and stood up and began to play with the lights, which was problematic because the room had no windows, so it was cast into pitch darkness when the lights were turned off. I became depressed, looking at how Christopher acted in contrast to the other boys in the class who followed the lesson and answered questions. I think this is when it finally hit me that Christopher was never going to get better. He wasn’t going to eventually catch up with his peers and life wasn’t going to get back to normal. I cried.

I think one of my problems is the feeling that what my children do, at least for the first few years of their adult lives, is a reflection on how I did as a mother. By this standard, I feel like I really don’t measure up. Other parents must have done such a better job because their children are doing so many things mine are not.


Comparing is a natural reaction to most circumstances. “Taking the temperature” of how we are doing, for example. When we set goals, we make comparisons to see if we are making progress with them. But when we are comparing our circumstances to another, we are not allowing for the fact that we are not all alike, but are in fact unique individuals, with incomparable circumstances. In this setting, comparing ourselves to others can be a failure to accept God’s will for us as individuals. We also risk failing to value our own uniqueness and abilities. As President Deiter F. Uchtdorf said in his talk “Forget Me Not,”

we spend so much time and energy comparing ourselves to others—usually comparing our weaknesses to their strengths. This drives us to create expectations for ourselves that are impossible to meet. As a result, we never celebrate our good efforts because they seem to be less than what someone else does.

Not all comparison is necessarily detrimental. I often look at others, see their accomplishments, and set myself up a goal to try to do that too. I find inspiration by seeing what can be done, often when it is something I had not previously considered.I don’t think this is the same as the comparison that can prove detrimental to our growth; it is quite the contrary. We are meant to learn from each other. Some situations, however, aren’t meant to be compared, and should not be. Why my twenty-seven year old son is not a college graduate, holding a job and maybe even starting a family is not a question that will be beneficial to him or me. Such a future was lost, when 23 years ago he fell ill with spinal meningitis. Due to circumstances beyond our control, his life simply doesn’t compare to that of his peers. But there is much he can teach us.

A little under two years ago Christopher developed trouble with a shunt he has in his head to drain excess fluid and prevent excess pressure on his brain. It seemed routine enough at the time. We went through at least half a dozen shunt surgeries when he was a child. A Priesthood blessing promised Christopher he would live and be healed. It said that his life would be spared because he still had things he needed to teach us here on earth. At the time I wondered if his uncle Kamron, who was giving the blessing, was simply being reassured about concerns he carried. But the Lord is good. He knew, as we had yet to discover, that this surgery wasn’t going to end up routinely. Christopher developed a serious infection from the staph bacteria MRSA in his brain. The location of this infection is called ventriculitis, and sent him to the ICU for several weeks of aggressive medical treatment. It also carries a mortality rate of 60%. A blessing given days before prevented me from wondering if Christopher was going to live or die. It did, however, leave him very weak, which he still is trying to recover from to this day.

Instead of comparing, I need to focus on finding joy in the little everyday things in my life. I pick up Christopher every Wednesday evening and we have dinner. My sister Melody LeBaron has been kind enough to host most of these dinners in her own home. This makes it more exciting for Christopher because his Aunt and Uncle LeBaron have been important people in his life and he loves to see them. These visits are intended to get Christopher out and visiting, something he has little ability to do on his own. Every other Sunday I take Christopher to church. When the schedule permits, I attend his meetings with him, otherwise I take him to mine. My goal was to try to help him develop a testimony of his own. At the very least, I didn’t want him on judgement day to ask me why I never tried to teach him about his Heavenly Father. I knew this was working the day he stood up and bore his testimony. It was a sweet experience, even more so because it was his idea.

My goals to raise my children in righteousness are partially realized with my sons. Even though I see other parents who seem to be doing so much better than my 50/50 track record on raising a righteous generation, I feel truly blessed to have my two boys. As President Uchtdorf said:

The lesson here is that if we spend our days waiting for fabulous roses, we could miss the beauty and wonder of the tiny forget-me-nots that are all around us.

This is not to say that we should abandon hope or temper our goals. Never stop striving for the best that is within you. Never stop hoping for all of the righteous desires of your heart. But don’t close your eyes and hearts to the simple and elegant beauties of each day’s ordinary moments that make up a rich, well-lived life.

Much of the time I am pretty happy. As long as I don’t fall into the trap of comparing and measuring my success against people whose experiences really aren’t comparable. The Lord has truly blessed me with the life I have. Thanks to Christopher I have learned so much about patience. Christopher will never be one of the young adults I compared him to. But then again, they have never experienced and survived the things Christopher has. They have an impact on people around them for good. I have seen Christopher have an amazing and sometimes surprising impact on people around him too. Always, I must remember,

God loves me because I am His child. He loves me even though at times I may feel lonely or make mistakes.

The love of God and the power of the restored gospel are redemptive and saving. If I will only allow His divine love into my life, it can dress any wound, heal any hurt, and soften any sorrow. (Uchtdorf)