Now that I have told my family’s SCA7 stories, I will share with you my own story. My story makes a lot more sense if you read and become familiar with their stories. Though the backstories are very lengthy, our experiences are so interconnected that it gives important context and understanding. As I tell my story, many references will be made to their lives and stories, and I will assume that the previous posts have been read, eliminating the need to retell or clarify. This goes to show that no one’s life is just their own. We influence and affect each other so much!
This post is literally SCA7 through my eyes. It is my story of having SCA7 and how it affected me, including seeing and helping family members suffering from it. Before I ever personally showed or experienced any of the symptoms of this disease, it already affected my life dramatically! It changed the way I think and feel about life, death, our purpose as people, relationships, and the gospel of Jesus Christ.
When I was a child, I knew my mom had this disease, SCA7, but her symptoms were minimal. It was not really noticeable, except that she couldn’t drive. That was a real pain! While I could not see the effects easily in my mom, I could as a child clearly see it in my Grandpa Paul, Aunt Cathy, and Aunt Caroline. I also knew my Aunt Chris and Uncle Don had both died from it when they were just babies.
We often visited my grandparents growing up, and I remember Grandpa Paul and Aunt Cathy being in wheelchairs. My grandpa had permanently lost his voice due to the disease and used to whisper when he talked to me. I watched my grandma do so much to help care for him and Cathy. For example, I remember my grandma would make him shakes when eating solid foods became too difficult. She also had a chair lift installed to help Cathy go up and down the stairs at their house (where she lived). Cathy would get to the top of the stairs on the lift, and then she would scoot on her bum across the floor to get to her bedroom. I was eight years old when Aunt Cathy passed away. My mom spent a couple weeks helping my grandma when Cathy was near the very end; I recall my mom feeling very sad. At the time of Cathy’s funeral, it was actually fun for me because I was too young to understand the meaning and serious implications of death. For me as a child, this was an opportunity to see my cousins, especially Callie from Aunt Caroline’s family in Arizona. Two years later my Grandpa passed away; I was ten years old. Again, the funeral was fun for me because my family flew home to Utah from our year long sabbitical in Virginia. We saw all our extended family. I understood death a little better this time, and it was solemn to see my grandpa’s lifeless body in a casket.
Around this time my mom’s poor balance became more noticeable, and she needed help from others to walk. During this same period, I really got into gymnastics and became fairly proficient (level 4). My mom loved gymnastics when she was younger, so she wanted to come watch me practice. Each day my team practiced for three hours. One day my mom came during the middle of one of our practices to watch me. A neighbor had dropped her off, and my mom stood at the front door waiting for me to come help her to a seat. The practice gym was compact, so to get from the front door to the spectator seats, you had to walk along the vault runway and then navigate under the bars. If you came after practice had started, it required the girls practicing vault and bars to stop what they were doing. That is what happened this day, and they watched and stared at me as I awkwardly helped my mom to a seat. Since I was shorter than her, we slowly staggered down the runway and under the bars, helping her to finally sit down. In my young mind, the entire gym’s activity seemed to stop what it was doing and watch us, since it was such an unusual scene. All those eyes (of my teammates, other athletes, and coaches) watched us struggle to simply walk. To say I was embarrassed doesn’t begin to express how I felt. I will never forget that moment and how it made me feel. I was so young. Reflecting back, I believe that I struggled with feeling embarrassed, but simultaneously knowing that because I loved my mom so much that I never wanted her to think I was ever embarrassed of her. I wasn’t truly embarrassed of her down deep. This experience (along with others) began to help me to realize that I shouldn’t worry about what others think of me or those in my family with the disease.
When I was twelve years old, we learned that my cousin Lance had SCA7. The news shocked all who knew Lance and understood the consequences of having this disease. When I first heard the news, I went into a room, fell to my knees and started balling while I attempted to pray to God. It sounds dramatic, but I was so sad! I love all my cousins and the time I get to spend with them. Lance and Callie (brother and sister) were the only ones who lived far away from our home in Utah, so getting to see them was always a special treat growing up. We typically saw them during the holidays and then once or twice more during other times each year. We made trips down to Arizona, and they would come up to Utah. Callie and I would even write to keep in touch. I just adored Callie and Lance (and also Uncle Scott and Aunt Carolyn). We all did! I loved playing, pulling pranks, and laughing with Callie, my cousin Lisa, and sister Aubree. I also loved hearing Lance’s many, hilarious jokes and seeing his passion for sports. And I loved how my uncle Scott made our visits so much fun. He would sometimes pretend to drive with his eyes closed, making the kids feel lucky to be alive when we arrived at our destination safely! It was moving, too, to see Aunt Carolyn’s bright personality struggle with this disease. Her family did so much to help her, and she tried so hard to serve them in any way she could despite her disabilities. You could strongly feel how much she loved her family. I loved their family, and it hurt so badly when we all subsequently found out that Callie also had this disease. By then I was fifteen years old. Her parents said that she had already known for the previous two years, but had kept it a secret from everyone. It caused me to reflect back on all the times I had seen and been with her during that time and now realizing that she actually already known. I just cried!
Later this same year we learned that Aubree also had SCA7. I felt like my heart could not bear all these tragedies. First, it broke when finding out about Lance, and then again with Callie. With Aubree’s news, my heart shattered. The disease began to feel too heavy and burdensome! The last time my family went to Arizona to visit, it shocked me to see the progression of the disease in Carolyn and how difficult it made simple acts of life. For instance, on this trip I watched Callie help her mom in a public restroom. She wheeled her into the restroom, then lifted her out of her wheelchair, and finally helped her with everything that followed. Carolyn also stayed in bed much of the time and did not have energy to join family outings. We also observed how the disease had started negatively affecting Lance’s balance and coordination. This was all going to begin happening to my little sister, and I would have to witness it. Again, all of this was heartbreaking.
To top it all off, this was also the time when my mom first started using a wheelchair. I turned sixteen years old that year, so the responsibility of giving my mom rides now fell to me. I often took her shopping. It was a familiar scene to see me pushing my mom in her wheelchair down a corridor at the mall or an isle in the grocery store. My mom loved shopping (and so did I)! I especially loved shopping with her since it was pretty easy to get her to buy things for me! After years of my three older brothers taking her shopping, which they willing did but did not necessarily enjoy, I think she savored having a daughter who enjoyed shopping just as much as her. Generally speaking, my mom tried to be frugal in her purchases, but it would not surprise me if our family’s shopping budget went up when she and I started going out together. We often ran into my peers or acquaintances while out and about, and I would remind myself, ”It doesn’t matter what they think. I love my mom and want to help her.” Doing errands, tasks, chores, and other things from a wheelchair was so much more difficult and restrictive for my mom. It was during this time that I also started to help her a lot with meal preparation and cooking. In addition to her physical handicaps, she also struggled a lot with mental ones, especially depression. This compounded the difficulties of life. My poor mom had to deal with all of this, and then she had to put up with immature teenagers–like me. I remember one shopping trip when my mom wanted to go to “one more” store. I decided that we were done, and since we were already in the car, I simply ignored her request and started to drive home. My mom kept trying to convince me to go on the final errand to this store, but I stubbornly and selfishly just kept going home. My mom got pretty upset with me, and the only thing she could think to do to express her anger and frustration was to throw the milkshake in her hand out the window onto the busy street where we were driving. It must have been so exasperating at times for my mom to be so dependent on a teenager like me. I know that she did not like to have to be dependent on others. She often said that she felt like she was just a big burden on everyone. Seeing my mom struggle like this, thoughts began to press upon my mind that this disease was way too much, and I even felt abandoned by the Lord.
The above paragraphs paint a dismal picture (something we can all do if we only focus on the negative). However, my life during this time was not all bad; there was so much good. As those that have already read my previous blog posts may have noticed, one way that my family dealt with all this hard stuff was playing. We played with family, including extended family, and boy did we play!!! In all these adventures we also tried to find ways to include my mom as much as possible. Each year we usually took several trips to the family’s Bear Lake cabin and a trip or two to Lake Powell. We did back packing trips in the Wind River, Bob Marshall, and Uinta mountains. We did white water rafting on many rivers in our own small, family raft, but one of our most memorable trips was a guided tour down the middle fork of the Salmon River. Many of my cousins and their families went on this trip. Some other favorites were when Aubree and I went on a Caribbean cruise with all the adults, a camping trip along the Oregon Coast, a ski trip in Targhee, snowmobiling in Yellowstone, scuba and shark diving in the Bahamas, Puerto Rico, the exotic island Culebra, and an Alaskan cruise with Aubree, Callie and the adults. There is an experience that I would like to share from this last trip mentioned.
We went on the Alaskan cruise the year after we found out that both Callie and Aubree had this disease. We three girls had so much fun together. My parents and Grandma Canfield were the adult family members we accompanied. I think that the three of us (Callie, Aubree, and myself) were the only kids on the whole ship. We became famous (or at least well recognized) because we were the only young people and were constantly running from one place to the next. We were all over that ship! We probably stopped to get ice cream almost every hour of the day. One evening, we lost track of time, and my dad came looking for us. He found us soaking in a remote hot tub at the stern of the ship at approximately 2 AM. One day on the trip, my dad told us that the drink of the day was a free, non-alcoholic fruit smoothie, so we could order it. That night, while sitting in the theater waiting for the daily entertainment show to begin, we asked a server for the drink of the day. He brought us what looked like hot chocolate mugs with whip cream and chocolate shavings on top. Despite our confusion at having been given hot chocolate instead of a fruit smoothie, we started to eat the whip cream and then took our first sips of the drink. It tasted awful! And it burned our throats going down, but not because it was hot. We realized all of a sudden that it was alcohol! Immediately, we ran outside and started to gag and spit over the railing into the ocean! After recovering from the shock and burning, Callie was very upset. We all were a little upset, but Callie was mad. As part of our Church’s religious beliefs, we do not drink alcohol (or coffee or tea), as well as abstaining from tobacco products and other illegal substances. We had lived this health code our entire young lives. Not one of us had ever even tasted alcohol before this moment. It was an honest mistake, and we would not get in trouble for it, but still, Callie was mad. She marched back into the theater and found our server. She asked him what he had served us. It was some drink with rum in it! She began to chew out the guy for serving alcohol to under age kids. I think the server barely even spoke English, and I am sure he felt terrible. It was amazing to me to see a young teenager chew out an adult man. I personally was still afraid of adults. This experience struck me deeply because here was a girl watching a disease slowly take away her beloved mother’s life, seeing the same disease also progress fairly quickly in her younger brother, and now she too was having to face it. And yet she fiercely sought to keep God’s commandments. You could clearly see that it was extremely important to her. All of this occurred at a time when I personally had been feeling that this disease was too much and that God had abandoned our family. And here, Callie, who was suffering much more from this disease than I was, sincerely trusted in Him and His gospel without wavering. Her example left a deep impression upon me.
Even more impressionable than Callie’s example was my own mother’s example. This disease was also hard for her, and daily I watched her struggle with it in so many ways – small and large. In her trials, she often turned to God for help, and church was very important to her. We attended every Sunday, and she served there in various ways (e.g. youth teacher or whatever). She performed her callings to the best of her abilities, but I know it was not easy for her. She was faithful in fulfilling her ministering assignments, praying daily, and listening to the scriptures. Seeing her great faith and hope in the Lord was inspiring. I knew God gave her the strength she needed to endure this disease with an inner peace. She knew that it was all going to be OK. Sadly, many of my high school friends were members of the same church, but after graduation, they lost their faith and left the church. I easily could have been just like them, yet my faith was never really in question, largely because of my mom’s example. This was also true for my siblings. Because our mom knew it, we knew it.
Around the time that I turned 16 years old is when I requested and received a patriarchal blessing (a special, recorded blessing given once in a person’s lifetime and by the laying on of hands that we believe serves as a personal guide (or scripture from God) just to that individual. Now I freely admit that at this time in my life I was spiritually immature. My prayers and scripture study were minimal. And even though I attended Seminary daily at school and church on Sundays, I was not too engaged and more often than not was just going through the motions. When I received my blessing though, I was amazed to feel God’s overwhelming and pure love for me. My blessing indicated that I was supposedly a really amazing and spiritually strong daughter of God. The words of the blessing left me in awe, and I knew that I had a lot of growing to do.
This was also around the time when I first suspected that my parents probably knew something about me having this disease. Just after school had started, my parents decided to take Aubree and me, along with some friends, to Lake Powell for the weekend. One night when we were camping on a beach, my parents lingered in the parked boat along the shore. I went to them to ask some question, and as I drew near it was evident that they were having some serious conversation. When they saw me, they stopped talking; my mom was in tears. When I asked what was wrong, they quickly brushed it off. I sensed that they were talking about me; however, I didn’t pry and tried to let it go. I will never forget that moment though because I also sensed it was something big.
Later this same year, my brother, Josh, was thinking about proposing to his girlfriend, but he hesitated because of concerns about possibly having inherited the disease. He knew first hand the challenges this could bring to a marriage and family. What if he passed it on to his future children? My dad calmed his fears by telling him that he knew for certain that he didn’t inherit the disease, and he also stated that my other two brothers didn’t inherit it either. He had inadvertently stumbled upon this knowledge years earlier when our immediate and extended family participated in a genetic study on SCA7 at the University of Utah. We all had our blood taken, so they could determine the affected family members. This would allow them to better study how the disease passed from one generation to another. The results were supposed to be kept strictly confidential, yet somehow my dad accidentally saw the final pedigree chart revealing who inherited this disease (and who did not). He saw that Lance and Callie had inherited it, along with Aubree. This information he already knew of course. He also saw that I had inherited it! This was news to him, but he noted that no one else inherited it. My three older brothers and the rest of my Canfield cousins were in the clear. After my dad told Josh that he had seen these results, I then asked him about Aubree and me. He lied and said that he only saw my three brothers results. He didn’t see ours, so he didn’t know (I am grateful that he did not tell me the truth at that time because I wasn’t ready to carry the burden, and as my dad, I believe that he knew I wasn’t ready either). I believed him, but at the same time wondered if the reason why the doctors didn’t show him mine or Aubree’s was because we had it (especially given we already knew Aubree had it). Despite this real doubt, I chose to hope that I might not have it. At some point, I also made the connection with the Lake Powell experience and this new information from the study, but I refused to let go of my hope.
Fearing now in the back of my mind that I might have the disease, my prayers began to change as I thought about what was most important to me. I remember sincerely praying many times afterwards that if I had this disease that God would still allow me to marry and have children. I saw that family gave my mom’s life so much joy, meaning, and purpose despite having this disease. I knew the same was true for my Aunt Carolyn. It was sad and painful to think that Aubree may not have these things… Growing up my parents were constantly telling us that family and our relationships with one another were so important. That is why we spent so much time together and with extended family on vacations. The time we spent together resulted in very close relationships among our family – parents, siblings, cousins, aunts, uncles, and grandparents. These relationships meant (and mean) everything to me! So with all my heart, I wanted a family of my own.
My high school and college years were so much fun! In high school, I joined the swim team and made some really awesome, fun friends. We hung out and played together most weekends and some week nights too. We also had tons of fun at school. My friends and I enrolled in a Unified Studies class where you spent every other school day getting out and doing a variety of outdoor activities. We played and played and played; it was lots of good clean fun together. Looking back, I think I just wanted to forget about this disease and the possibility that I could have it. During my mid to late-teen years I did start dating a boy exclusively, and I held on pretty tight…since I longed for the opportunity to one day marry. I wanted to ensure that someone would want to marry me, even if I had this life-threatening and debilitating disease. Eventually, I told my boyfriend that I could have this disease, and he was OK with it. After High School, he left on a two-year mission for our church, and I planned to wait for him with the intent to get married sometime after his return. Then I started my university studies at Brigham Young University (BYU) and lived at home (a 10 minute commute at most). Almost all of my high school friends went in different directions, doing their own thing. My best friend Katie, though, also attended BYU, but she lived in the dorms on campus instead of at home with her parents. She immediately made lots of new friends through her BYU church singles congregation and her many dorm mates. I, on the other hand, was not meeting many people. It was difficult for me to make friends in my large college classes or at my home Orem church singles congregation. I began to feel lonely, so we requested special permission for me to attend Katie’s BYU singles congregation, even though I lived in a different geographic area. Permission was granted, and it was such a blessing for me! I had a blast with Katie, participating in all the many church activities with her and the other singles our age.
It was during my freshman year at BYU that my Aunt Caroline (Callie’s mom) passed away from SCA7 at 40 years of age (Callie was a senior in high school). Our Canfield family all traveled to Arizona for her funeral. It was heart-wrenching to see Uncle Scott say goodbye to his wife, my cousin Lance in a wheelchair, and Callie’s balance clearly much worse than the last time I’d seen her. Plus, children and youth shouldn’t have to say goodbye to their parents. You could see the hurt and pain on their faces. I again felt that this disease was too much for God to ask someone to endure, and I was angry with Him. My dad spoke at the funeral, and his talk was life changing for me. He spoke of this life and that our individual trials and sufferings are all part of God’s plan. My dad even called it a marvelous plan, the plan of salvation, and he stated that there is great meaning, purpose, and beauty in it all. My dad is a powerful and moving speaker, and in this talk I felt strongly that he spoke the truth and I felt God’s love for me. This talk is in the post {Carolyn’s Funeral Talk by my dad}, so you can read it for yourself. After the funeral, I felt determined to become more of that spiritual person that my patriarchal blessing described. I had made little or perhaps even negative spiritual progression during my high school years. My primary focus was on having a fun time with friends and my boyfriend. I began to strive to change, making a greater effort to establish good spiritual habits like daily prayer, scripture study, and seeking to repent fully of my sins. This was the beginning of when I feel I started to become more of the person I really was inside.
Towards the end of my first year of college is when my dad invited Callie to come study at BYU. I had already been talking to my dad about moving out into an apartment near campus with Katie. As I was trying to become more spiritually strong, I began to think about the possibility of me having this disease and pondering a possible future with it. This caused me to start having reservations about marring my missionary boyfriend. Up to this point I had strictly waited for him and had not put myself out there to be asked on dates. However, I had the impression that I would not marry my missionary boyfriend, but rather meet the person who I was to one day marry at BYU. I knew meeting a boy would likely not happen while living at home. Yes, it was costly to live away from home, and I did not have the money. It would require help from my parents. With Callie now coming to BYU, living in an apartment was a much more appealing situation for her too (vs. having her stay at our house and commute). Callie coming tipped the scales, and my parents finally decided to help me out with the expense. I did not say anything about these changes in my letters to my missionary boyfriend. I regret this. I should have been honest with him about it. I was just unsure of my future and not ready to close that door. And I didn’t want to hurt him…or me.
Around this same time, another cousin on my dad’s side of the family, Kayla, also needed a place to live in Provo as she was transferring from Utah State University (USU) to Utah Valley State College (UVSC), a college right next to BYU. With Kayla, we (Kayla, Callie, Katie and I) had enough to fill an apartment and looked forward to being roommates. We found a fun and large apartment complex called the University Villa and signed contracts to live there, starting in the Fall. That summer Kayla and I lived at my parents house and attended summer school. We sought special permission to attend the church singles congregation that we would be attending in the Fall, and an exception was granted. We started to meet and get to know many of our future neighbors. Also, guys started asking me out on dates. This calmed my worries about meeting my future husband. I even started to exclusively date a young man from Arizona. We had a real fun summer together, but by the end of that summer, we both came to realize we were not right for each other and broke up.
That September Callie came to BYU, and we moved into our apartment. It was going to be a fun year together with her, my cousin Kayla, and best friend Katie! I was especially excited to have Callie there. With her having the disease, I knew it would shorten her life significantly. And on top of a challenging future, she would now be taking college classes with limited eyesight and bad balance, making things much more difficult by the day. She was a bit nervous about it all, but I was determined to help to make it a good experience. You can read about this in the post {Callie, College Years}. That year we had so much fun together and made lots of great memories. I personally grew, learned, and was influenced so very much by getting to be Callie’s roommate. I appreciated and cherished her patience and kindness towards me. In addition, I also enjoyed growing closer to Kayla and Katie.
Dating was the other thing that excited me that school year. The prospect of marriage in the future was very important to me given I had the potential of having SCA7. Things would have to move quickly if I wanted to have kids while still healthy. As fate would have it, in the first week of moving into the University Villa, a boy named Dave came by our apartment with one of his roommates to introduce themselves to us. I immediately thought Dave was cute, and I liked him the more I learned about him. He was majoring in economics which I thought made him smart. Also, I had seen Dave a couple times in the summer from a distance. I remember him cheering for me by name at a softball game with a bunch of people from our singles ward. People started to tell me that he was a real nice guy. Now that I had officially met him, I began to have a big crush on him.
In that first month of the Fall semester, I went on a couple of dates with other young men, but I did not have any real interest in them. Then finally Dave asked me on a date to the BYU Fall Fling. I was real excited. For first part of our date we went to a BYU girl’s volleyball game, since a couple of the girls on the team attended church with us. That part of the date was just okay, but afterwards we met up with another couple to go to the on-campus Fall Fling festivities. That is when the date started to get fun. There was a big inflatable obstacle course. We decided to race each other. Dave was obviously going to win since he was a muscular, marathon runner. We agreed that I would get a 5-second head start. If I won, he would make me dinner (my way for us to get together again!). If he won, I would make him banana bread (his favorite). When it was our turn to race, Dave quickly counted to five in like half a second. He easily beat me. Afterwards, I would not commit to the banana bread, since he obviously cheated. We did lots of other fun activities together that night. Several days after the date, he did invite our whole apartment to eat a dinner that he made at his apartment. And I eventually made him some banana bread too.
I hoped Dave would ask me out again after the Fall Fling. A friend who had been in our singles congregation longer and that knew Dave better, said that Dave had taken many of the girls in our ward out but never asked them on a second date. This made me a bit nervous until that next weekend when he asked if I wanted to join him and a group of friends to climb Mt. Timpanogos. They planned to leave at 1 AM, so they could see the sunrise from the summit. Timpanogos is one of the tallest mountains in Utah, which is saying a lot since Utah has many tall mountains. There is a road that goes halfway up the mountain, and then you walk four to five hours along a trail from that point to the peak. It’s quite the feat, but it is something I had done before since this mountain was in my backyard growing up. I had just never done it in the middle of the night. I was also very used to hiking mountains from the many backpacking trips my family had done. So when Dave asked me if I would like to go, I was very willing and excited to come. Dave and I talked pretty much the whole way up and down the mountain. We really got to know each other pretty well and had a real fun time together. I think he was impressed with how the whole hike was pretty easy for me. The other girls needed lots of breaks and were struggling at the end. I also think he enjoyed hearing stories about my family and the many trips we had taken. For my part, I continued to like him the more I learned about him. After this pivotal date, we began to see each other every day and then to date exclusively.
I think I fell in love with Dave and wanted to marry him much sooner than he did. He was so kind, hardworking, ambitious, smart, and good with his money. He was also in shape and to top it all off-super good looking! But the thing I loved about him most was his spiritual strength. He had a strong testimony of the gospel of Jesus Christ, and he lived his faith. He also loved to help and serve others. These qualities were important to me, especially if I had the disease. Another thing is that he brought out the spiritual side in me that was described in my patriarchal blessing. I felt that he brought out the real me…and I loved that.
Dave met my family early on in our courtship, since BYU was so near to my home. I saw my family multiple times a week. He first met them at a BYU weekly campus-wide devotional one Tuesday morning. It had become a tradition for my parents and any family attending BYU to meet up in person at the Marriot Center (where BYU plays basketball) to listen to the selected speaker. As my mom was in a wheelchair, we sat on the ground floor (best seats in the house). Then after the devotional, my parents would take us all out to lunch. At the time I started dating Dave, it was usually my parents, my brother Luke, Callie, Kayla, and me. One Tuesday, I brought Dave along to the devotional to meet my family. When my mom first shook his hand, she greeted him and said, “Mandee tells us you are practically perfect.” This made Dave laugh, but in my eyes, he was. There were other devotionals, Sunday dinners, and events with my family after that. At Thanksgiving, Dave also joined me and my family, since his family lived in Illinois. After the feast, my Grandma Canfield stood up to express her gratitude for the Resurrection, the Lord’s Plan of Salvation, and that families can be together forever. These meant everything to her, since her husband and four of her six children had passed away from this disease. They would be with her again. Dave enjoyed seeing extended family share the same faith because his parents were converts and did not share the same faith as their immediate and extended families.
That Christmas I met Dave’s family. I was excited when he asked if I would like to come to Illinois, so I could meet his parents and younger brother Joe. I had already met two of his siblings, Carl and Grace, since they were also attending BYU at this time. That year I was more excited to fly to Dave’s home in Illinois on Christmas day than I was for presents. When I stepped off the plane in Chicago, Dave and his parents were there to meet me. I liked them, and they were very kind to me. I hoped that they liked me too. I had a good time getting to know Dave’s family better during the week I spent there, but most of all, I enjoyed being with Dave. One day we all drove to Nauvoo, a small town in Illinois that is a historic site for the Church of Jesus Christ of Latter-day Saints. I can still remember sitting in a large log cabin where a senior missionary showed us how pioneers made pottery on a spinning wheel. The missionary compared the clay being shaped by the craftsman to mortal women and men in the hands of God. If we allow Him to shape and mold us by striving to do what He wants us to do, then He makes us into something amazing and beautiful, much more so than we could ever make of ourselves. This lesson left me with a great desire that God would mold and shape me into what He knew I could become. This experience and associated feelings have always stayed with me. Later, on one of the last days of my stay with Dave’s family, he and I went on a walk together. We talked about our relationship, and Dave said that he liked the way things were going but wanted to take things slowly. That was OK with me, but I already knew that I wanted to marry him. I just needed to wait for him. I was confident it was all going to work out.
When we returned to BYU after Christmas for the winter semester, Dave and I continued to date. February marked six months of dating steady, and I wanted to have another DTR (Define The Relationship) talk. While talking to some friends about my desire, they suggested that I ask Dave about his housing plans for the coming summer. The apartment complex where we both lived was offering a discounted summer contract for those who wanted to stay in their apartment. The thought was that this subtle approach would naturally bring up our relationship plans if marriage was a possibility. We would need to try to find married housing, not single’s housing for the summer. During school, Dave and I often met up at the Hunter law library to study. This was Dave’s favorite spot because it was quiet. While sitting at a study table in the law library together, I casually asked him his housing plans for the summer. He paused to think for a bit, and then he really surprised me by responding, “Mandee, I want to marry you.” I was shocked, but a huge smile that I could not contain appeared on my face! I replied, “I would like to marry you too.” Then, like two giddy kids, we started to make plans for our future. Apparently, Dave had already decided that he wanted to marry me, and he had even talked to his parents and older brother about it. He was just starting to make plans to formally ask me, but with my housing line of questioning cover for a DTR, it came out when it did. That weekend he formally proposed using a temporary ring. He made me a romantic candle lit dinner, we danced, and then we hiked a couple miles up a local peak to a beautiful lookout of the valley. At the lookout, he knelt on one knee in the snow, extended the ring to me, and formally asked me to marry him. We were now officially engaged!
Backing up in my story a bit, a couple of important things happened before Dave formally proposed to me. First, Dave called my dad to ask him if he could marry me. My dad told him yes, but asked him to come to his office on campus to talk more about it. Second, my dad called me to ask if I would meet with him at his office that morning before his scheduled meeting with Dave. I was a little confused but agreed to meet with him anyway. That night as I thought about meeting with my dad the next morning, I knew it was going to be an important conversation. I remember walking to his office feeling very somber. When I saw my dad in his office, I could see sadness in his eyes, and it appeared that he was holding back tears. I knew what was coming; my heart was breaking. He then told me that I had the disease SCA7. Our tears started falling together. I knew it was hard for my dad to tell me this. Once he composed himself, he explained that he had known for years that I had the disease. He learned when he saw the results for my brothers. He had seen the results for all of his children at same time, learning that Aubree and I had it. He kept this knowledge from me because I hadn’t started to shows signs yet and he did not want me to bear the burden until it was necessary. Getting married and having children meant it was time; the disease could affect another generation if I didn’t know. I was grateful he did this because it is such a heavy burden. I knew that I had to tell Dave and learn if he still wanted to marry me. He would know what all this would mean having been around my mom and Callie. Plus, the disease was something we talked about during our courtship. In addition to telling me I had the disease, my dad also talked to me about our options for having children since we knew there was a 50% chance of passing the disease on to children. As such, our options included: risk passing it on, adopt, or not have kids. None of these options were appealing. We definitely wanted to have children, and adoption was OK, but it would take a lot of time and money (which we didn’t have). He then shared a fourth option that he had discovered doing some research, since he cared deeply about these things too. He had learned about a procedure called IVF/PGD. He explained that it was a way for us to have children of our own without passing on the disease to them. It was a very expensive procedure; however, he and my mom had saved up some money for us to attempt it. They knew we would need to have kids as soon as possible, so I would have time to raise them before the disease became too debilitating. We were going to be poor students and starting life together without many resources, so they had saved for us. Wow! I was so grateful for my loving and wise parents that cared for me so well. We both sat there filled with emotion as I tried to process it all. I had known that I could very likely have had the disease, but letting go of the hope that I might not have it was hard. My dad asked me to come home for dinner that night; our whole family was going to be there. We hugged, and I left to go meet with Dave who was waiting to talk to my dad next. Just outside the building, we sat on a bench together and talked. I started to cry before I could even tell him about the conversation with my dad. He knew what my tears meant though, and he reassured me. He told me that this didn’t change things; he still wanted to marry me. When he decided to marry me, he had made the decision as though I did have it. He sufficiently understood what this disease meant from seeing Callie and my mom. I had also told him all about it. He then said that marriage is eternal, but this disease is not. That it was an earthly trial that he was willing to go through with me. I was so comforted by this. I then smilingly told him, “Good luck!” as he went to talk with my dad. My dad talked to him about me having this disease, and Dave reassured him that he still desired to marry me. Dad then told him the same information and options for us to have children. I think Dave was grateful for the help and insight of my parents too. I am very grateful that I had Dave there with me.
That night I went home, and all my family was there – my parents, Josh, Dan, Luke, and Aubree. Everyone looked so sad, since my parents had already told them the news. I was touched by their concern for me. My dad and three brothers then gave me a priesthood blessing by the laying on of hands. I do not remember the words, but I will always remember the powerful feeling of love, especially the love of my family. After the blessing, they each gave me a hug. I felt awed by the overwhelming power of family love. Before I left that night to return to my apartment, I went into the office room at my parents’ to get some things. My brother Dan followed me in there and expressed his great concern for me. He worried about how hard it was going to be. This meant a lot to me, and I was again just so thankful for my family’s love and care for me.
This period of time and the months that followed were filled with gratitude and excitement for the future. I felt so thankful that the Lord had answered my prayers that if I had the disease, He would still grant me the opportunity to marry and have children. It now appeared that both of these were going to happen in the very near future. I was so excited to have found a good man to marry that I knew was the right fit for me. On top of all this, my family provided great support as I took on the burden of the disease personally and prepared for a big, personal, life transition. Even though my future was going to be darkened by this disease, I was still excited because I knew it would also be filled with many wonderfully good things. It would not be easy – niether marriage nor parenting is, but I had had many examples to look to in my large extended family. Family would be so worth it. I felt so much meaning and purpose in my life, like I had never felt before. I knew it was because I was striving, in my meager way, to follow God’s plan for me and grow closer to the Savior. Like the pottery analogy, if I let Him shape and mold my life, He could make it into something truly wonderful.
Now I had a wedding to plan, but first there was an important matter of business to address: ending things with my missionary. I needed to inform him that I was getting married to someone else. This was hard because I had been leading him to believe that I was faithfully waiting for him. I truly regret my behavior in this instance. What I had done was not only rude, but dishonest. I should had been open and honest with him from the beginning. Regardless, I wrote the “Dear John” letter and felt horrible sending it. Lesson learned: It is so important to be honest!
With that unpleasant task behind me, it was time to plan a wedding. Dave had been accepted to a summer internship program with BYU in Washington DC, so we had to decide if we would get married before or after his internship. We both liked the idea of getting married before the internship in April, and I felt like DC would be a fun adventure to start our marriage. This meant I had only two months to get everything ready. By this time my mom was pretty far progressed with the disease, so I did much of the planning on my own. However, I wanted to include her as much as possible. For example, we went wedding dress shopping together, and we picked a venue for the reception. In parallel with planning our wedding I was still taking a full load of civil engineering classes. I felt overwhelmed. Considering my situation – I had this disease, was getting married, and planned to have kids asap – resulted in a dramatic decline in my desire to finish my Civil Engineering degree. Plus, it was very unlikely that I would be able to use my degree. As a result of this logic, I decided to drop half my classes. This created the time I needed to continue planning our wedding. From that point forward, things went very smoothly. I was able to secure a wedding planner with the venue we had chosen, and a lot of friends helped out with other parts of the celebration. Some helped with flowers, another with the cake, and one did pictures. It all came together beautifully and turned out better than I could have hoped.
We were married for time and all eternity on April 20th in the Mt. Timpanogos temple (American Fork, UT). It was more than I dreamt it would be. After the ceremony, we had a luncheon with family and close friends. Very nice things were said. That evening was the first of two receptions, and many people came to celebrate with us. It was so good to see and receive the well wishes of neighbors, friends, and family. It was a really good day! We spent our honeymoon in Park City, UT and at Bear Lake on the eastern Idaho side. It was a wonderful break together, just the two of us. After our honeymoon, we returned to my parents’ house in Orem. We only had a couple days to pack before leaving to spend the summer in Washington DC. Along the way to DC we stopped at Dave’s parents’ house in Illinois for a second wedding reception with his family and friends in that area. Dave’s mom put together a lovely reception for us. Then we were off again, heading across the country to DC.
It turned out that Washington D.C. was NOT the fun adventure I thought it would be. I really struggled! The summer married housing at the BYU Center in DC was already filled by the time we decided to get married in February, so we lived at Dave’s cousin’s house in Maryland. She and her six kids lived in a beautiful house about 1-2 hours north of DC. We made our first home in her basement. We really enjoyed their company, and Angie and her kids were very good to us. The difficult part was Dave’s daily commute during rush hour. We timed his commute, and it lasted 2 hours there and 2 hours back! It meant he was gone at least 12 hours each day. To make things worse, the internship was not paid! We had to pay for gas and subway tickets at a time when our funds were very limited. We paid these expenses from wedding money gifted to us. Angie kindly let us live with her for essentially nothing (we paid a little for food each week). We felt immense gratitude for the wedding money gifted to us; it ended up supporting us through that first summer. Every time we needed money that summer, another wedding gift of money would come in the mail! Miracle after miracle. Originally, we planned for me to get a paid job. However, I applied everywhere (and then some), but nothing worked out. Most of the places I applied wanted me to work nights and weekends, and I did not want to give up that precious time with my new husband. With his long commute, I barely got to see him. On top of that his internship was with an office full of women. I figured that he spent more time with the women there than he did with me, his new bride. I admit; I was jealous. I was stuck in a basement room all day everyday with absolutely nothing to do. This was in the days before smart phones, and all I had was a small TV with a couple basic channels. Each day I would wait for Dave to come home, and we would talk on the phone during the 2nd half of his commute every day. Dave felt bad for me, but there was little he could do to improve my situation. After about a month of this routine and struggles, I was done! I wanted to go home. I wasn’t too kind to Dave about my pain. Our marriage was not off to the best start. I knew marriage would not be easy, but this was just too hard for me. Maybe I could live with my parents during his internship and get back together upon completion of his program. I called up my parents and told them my plan. They listened patiently to me, and then they told me that it was very important that I stayed with Dave in DC and stick it out. They talked to me about the importance of marriage and encouraged me to do my best to make it work. This was not what I wanted to hear. I didn’t think a temporary separation would hurt things, but my marriage was very important to me. I did not want to do anything that would hurt it. Next, I talked to Dave. I urged him to talk to the BYU-D.C. professor in charge of the program about leaving early, since it was too hard for his wife. He really did not want to do this because for months the professors had strongly discouraged students from leaving their internships early. Plus, he was having a great experience, but after begging and pleading with him, he finally spoke with the head professor. He didn’t talk to him about leaving early, but he shared him how I was really struggling. He treated Dave kindly, and he brainstormed with him on things that could help. I appreciated Dave doing this for me, and I decided to try to stay and stick it out together. I began to pray and pray for strength and help. Things did slowly start to improve. I found some short-term jobs, thanks to Angie and her connections. She even let me borrow her car to get to these odd jobs, since we only had one car (that Dave used to get to his internship). Angie was sooo good to us! And I am grateful for the relationships we made with her and her kids. I was also grateful for the extra time we found for me to spend with Dave. The professor allowed me to come in on Friday’s to the BYU center which gave me another half day plus with Dave each week. In the end, my parents were right; it was good for our marriage that I stayed. By the time we left though, I was a mess. Driving back to Utah I could not stop tears from flowing. They were tears from the struggles and also for the joy of leaving and being done with it. Poor Dave now had to deal with a wife who was unwilling to go and do whatever his very ambitious career ideas were. I had come to realize that everything would not just magically work out and that I was not as strong as I thought I was.
One reason I bring up this DC experience is because I did a special topical study on faith while stuck in the basement with nothing to do that summer. Having recently learned that I had this disease and with the personal trials I faced that summer, I needed more faith. In my opinion, I was spiritually young at this time. In the scriptures I began to read of the many stories when Jesus healed others. Also, I read many times where the Lord counseled us to: “Ask and ye shall receive, seek and ye shall find, knock and it shall be opened.” As I pondered these things, I came to the conclusion that we all (meaning all my large family) needed to unite our faith and ask for healing from this disease in a special prayer and fast. We had never done this in my lifetime. Everyone had definitely prayed and asked for this individually many times, but never all together. Surely, our combined faith through fasting and prayer would make the difference, right? I remembered the time in my parent’s marriage when they did this after my mom first learned she had the disease, but the Lord’s answer was “no” at that time. I thought if we did it again, it might now be time and the answer “yes.” I called my dad and told him my plan. He paused to answer, thinking of how to best respond. He asked, “Do you think that Callie and Lance (my cousins with SCA7) did not already have enough faith to be healed?” There was not another person I knew that had more faith than those two. Then he asked, “What about your mom and sister?” They too had great faith, more than I did. He continued, “If they all already have the faith to be healed, then why have they not been healed?” He then asserted that it was not a question of asking, because we both knew very well that they, along with a multitude of others, had already asked for that healing many times. He told me that he would also feel foolish asking them to participate in a special family fast, especially Callie and her family. He believed it might somehow suggest or imply that they must not have already displayed the faith needed to be healed. We both knew that was untrue; their family was such a bright beacon of faith. After hearing his point of view, I came to feel that the idea was foolish too. I was beginning to understand. I remembered what my mom said in a talk she’d given at a BYU Women’s Conference. In her talk, she shared what she had learned about faith and what it really meant. She said, “We have to have great faith that Christ loves and cares about us and that He will always do the right thing. Before I always thought faith was just believing hard enough that something could happen. But now I believe that faith is having complete trust in our Savior Jesus Christ.” That summer with my study on faith, conversation with my dad, and remembering my mom’s words I felt like my gospel understanding and faith in Christ began to grow stronger.
I want to end this portion of my story with one more experience that taught me about faith. When Dave and I finished our summer in DC, we returned to BYU to finish our degrees. Life began to get much better (as compared to the DC experience!). We rented a small apartment close to the University Villa apartments, so I could visit my sister and cousin often who lived there. I had a full schedule of engineering classes that semester, and both Dave and I landed security guards jobs at the BYU library. I also started the process for us to eventually have kids of which I will share all about in my next post. During that first semester, there was one class I took that I want to mention. It was a personal history class. I chose it because I felt a need to write our families’ SCA7 histories. The class taught students how to record oral histories and then transcribe them. As part of the class, I interviewed my grandma Canfield, mom, cousin Callie, and sister Aubree about their SCA7 stories. I learned so much about faith from them and their experiences. Reflecting on my struggles that summer and longing for faith, I realized that to increase my faith, I had to increase my trust in the Lord. Trust in His wisdom to not heal us from this disease, and trust in his plan for me. Still, deep down I really felt that we should be healed, and I somewhat doubted His love for me. As I recorded these interviews though, I was awed by their strong and certain trust in His wisdom and His love for them. For example, here is a snippet from the recorded interview with my sister. She said, “I feel like the Lord wants to heal us from this disease. Sometimes I think I can just ask Him and pray for a cure and be righteous. Then I kneel down and pray for it, and I feel like I am not suppose to ask for it right now. I honestly can’t say the words to ask Him. I want to ask Him for it, but at the same time I know it is not the right time. I really feel the Lord has a time for it – if it is the time, He will do it. In the meantime, He will give us strength…strength to deal with it and strength for our families. He will make things wonderful for us.” I have found a lot of strength for myself in these words from my sister. They have increased my faith.
Up to this point in my life, I had not shown any outward signs of having this disease, yet it had already had a large impact on me. My future scared me, but I believed like my sister that there would be a cure for our family in a coming day and time. I hoped like this would come before things worsened too much for me. I held onto this hope very tightly, yet I suspected my life would still be filled with trials because of this disease. I am so very thankful for the examples of my family members who have gone before me. They set an example of enduring to the end and remaining true to the faith. Over the years, through their examples and personal experiences of my own, I have come to greatly trust in our Lord’s great wisdom and infinite love!
