SCA7 Through My Eyes

I have been looking forward to remembering, writing and sharing my mom’s story and her powerful example. My mom has been gone for six years now. She was and still is a great example to me. Facing this disease is scary, and my mom’s example helps me. There are so many stories and experiences from my mom’s life that teach things like gratitude, finding the good, enduring, self-worth and so much more. Ironically, my mom often felt that she was not a good person when compared to her other family members who had this disease. Although she lived a wonderful life full of good things, she really struggled with SCA7’s disabling effects. Again, I am very grateful for my mom and her example of enduring this disease, but even more so I look forward to a time without this disease! I miss her, but I don’t miss what the disease did to her at all. I ache for what could have been. My hope in the next life brings peace to imagine being with her again and having the relationship and moments with her that this disease took away from us and so much more.

At my mom’s funeral, all five of her children spoke, just like she wanted. It was moving to hear my siblings’ experiences with my mom and memories of lessons she taught them. When it was my turn, I chose to speak about what my mom taught me about faith. There wasn’t enough time, but I also wanted to speak about what she taught me about hope and charity. These three lessons are deep, significant, and life-changing. In pondering how to share my mom’s story, I realized that her life could naturally be separated into three parts: faith, hope and charity (in that order). The first part of her life’s story is a very powerful message of faith. I believe the Lord beautifully guided her in learning this most essential lesson.  With that said, here is the first part of her story.

Growing up my mom was athletic and well liked. My grandma said that when my mom was young, she was always moving. For example, she did gymnastics, and she would do cartwheels wherever there was an open space. In High School she was on the gymnastics team, flag corps, volleyball team, diving team and cheer squad. My mom was also very outgoing and pretty. She always had a date to the many high school dances, and her Junior and Senior years she had a steady boyfriend who was a star football player (not my dad). They became very close and planned to get married when he returned from his two year church mission. They even started a bank account together! He was a year ahead of her in school, so it was during  my mom’s Senior year of high school that he left on his mission to Canada.

After high school my mom attended Brigham Young University for a couple semesters. She enjoyed her time there, but in an effort to save money, she moved back home and attended LDS Business College, studying medical records. During this time, she dated, but she never met anyone that impressed her. As her missionary was coming home in less than a year and she wasn’t enjoying dating, she decided to give up on it and strictly wait for her missionary. Things were not looking good for my dad!!!

Around this same time, my dad returned home from his mission, and he started asking many different girls out on dates trying to find the right girl for him. He went on at least one date and sometimes more every week. He wasn’t having much success though and felt frustrated. One day he looked through his younger brother’s year book. He spotted my mom, and he took a mental note of her. A month or so later there was a young adult dance. My dad went but only because he was one of the young adult leaders; he does not enjoy dancing. My mom also went but only because her friends convinced her to go. Unlike my dad, my mom actually loved dancing. From the sideline at the dance, my dad spotted my mom having a good time dancing, and he remembered her from the yearbook picture. He asked her to dance a couple times and enjoyed watching her dance.  My mom didn’t think much of it, so she was surprised when a week later my dad called to ask her out on a date. He explained that they would be going water skiing. She probably would have said “no” because of her missionary, but she really loved water skiing! She said “yes!” My dad was hoping to impress my mom with his skills, but it turned out the other way around. My mom got out on the water and slalom skied on her first attempt – something not many girls can do! This really impressed my dad!!

My dad said that he just felt so comfortable when he was with my mom. They both enjoyed their time together and began steady dating. My dad invited her on many outdoor activities like hiking and fishing, and my mom kept up with him. She even out-fished him once! One time while conducting a church meeting, my dad forgot to get someone to lead the music, so from the pulpit he asked her to do it and she didn’t miss a beat. He quickly fell in love with her. On the other hand, my mom was confused because she was also falling in love with my dad, but she still cared for her missionary. My dad eventually found out about the missionary, which only further encouraged him to win my mom over. One evening after dating for several months and while walking around Temple Square, my dad asked her if she would marry him. He hadn’t planned on doing it then, but it just felt right. My mom told him that she needed a couple days to think about it. That night neither of them slept, and by morning my mom had her answer. When my dad came to pick her up for school, my mom told him “yes!”

By this time my parents where fully aware that my grandpa’s SCA7 could be passed onto his children. It was known that it was SCA7 that took Chris’ and Don’s lives (two of my mom’s younger siblings), and it was SCA7 that was now causing Cathy (a third younger sibling) to lose her eyesight and balance. It was also known by this time that SCA7 was a dominant gene, meaning there is a 50% chance of passing it on from parent to child. Knowing all this, my mom and dad felt confident and certain that my mom would not inherit this disease. My mom and Caren where the two oldest children and hadn’t shown any signs of having SCA7. Half of their siblings already had the disease, so for them to have it too just seemed very unlikely. Plus, my mom was the most athletic of them all. While dating my mom, my dad remembers  watching her do back-handsprings and flips all across her backyard. And so they went on with their life plans, not worrying about her having it.

My mom and dad were married on St. Patrick’s day in the Salt Lake City temple for time and all eternity. After their honeymoon to Jackson Hole, Wyoming, they came home and finished their final semesters of schooling respectively. My mom completed her training in medical records, and my dad finished his degrees in Mathematics and Civil Engineering. After graduation, he told my mom that he wanted to obtain a PhD in Civil Engineering. This was new news to my my mom! Five months after getting married though, they were off to Berkeley, California for my dad to start his graduate studies. In the three and a half years there, they had three children, my brothers Josh, Dan and Luke. They came much quicker than expected. Josh came nine months after marriage, a honeymoon baby. Dan came just a little over a year after Josh, and Luke was born one and a half years after Dan. Aubree (my younger sister) and I would follow not too far behind. My mom loved being a mother and always wanted a big family. She was known to say that she hoped to have eight kids. While my mom and dad didn’t plan on having all of us so quickly, it ended up being a great blessing, considering what was to come.

In Berkeley, my parents lived on humble pie, but they would say that those were happy years. After my dad graduated there, he took his first and only job as a professor at Brigham Young University (BYU) in Provo, UT, so their family could be close to family. They and my three brothers moved into their first house in Orem, Utah (10-15 minutes north of Provo). Their futures were very bright and life was good.

Around this time I was born and shortly thereafter my mom began to show signs of SCA7. This now made 5 out of 6 children in the Canfield family that had this disease. A few years before, my Mom’s younger sister Carolyn had also started to show signs of SCA7 (right before she got married). She was the fourth to show signs, and it was so hard for everyone to know that that yet another member of the family had inherited the disease! When I was a year old, Carolyn had her first baby, Callie. My grandma Canfield, Aunt Caren and Mom all made a road trip to Arizona to visit Carolyn and see her new baby. At one of the rest stops along the way, my mom hopped out of the car and did some cartwheels on the open lawn. Yes, my mother was still known to do this even as an adult! My grandma Canfield, who was all too familiar with this disease, noticed slight signs of SCA7 in the way my mom moved while doing her gymnastics. This revelation struck dread and fear into her heart! She didn’t speak a word of this to anyone.

Around this time, my mom began to notice her eyesight was getting worse. This instantly caused great fear to come over her! This could not be happening! She did not want to envision her bright future with this disabling disease. She had seen its devastating effects with her dad and siblings, and it was too awful. Their was still a chance that she just needed glasses. Please! Please just need glasses! My mom went to the eye doctor to determine if glasses could correct her vision. If not, it would mean she had SCA7. It pained her heart when she learned that glasses could not help her. She broke the news to my dad, and he felt the same things as my mom. My parents, especially my mom, knew very well what the disease could do to her life and her family’s lives. They had been so confident that my mom didn’t inherit it. 5 out of 6 children in one family far exceeded more than the 50% odds. It was so unfair! Their bright hopes for their futures were being darkened. They were terrified.

They turned to God and began to pray fervently to Him. My dad gave my mom a priesthood blessing of healing by the laying on of hands. They only shared their news with their church bishop. They all three prayed and fasted. Oh how they needed God’s help! And He did help them. My parents received an overwhelming feeling of peace and comfort. They felt and knew that it was all going to be OK. Their bishop told them that as he prayed about it, he also  received the same assurance that it was going to be OK.

At this time, my dad served as the Elders Quorum president in their church. He had two counselors, and one of his counselors had strong beliefs about being healed through faith. This counselor’s new, young wife had suffered with a terminal cancer. After giving her a priesthood blessing, she was miraculously healed. The counselor strongly felt that if a person had enough faith, miracles would follow. My dad had many conversations with him about this, since he and my mom had a miracle that they very much desired.  They knew the scripture that asks, “Have miracles ceased?” No! The scriptures also say, “Ask and ye shall receive.” He and my mom began to interpret the good feelings they and their bishop had received as meaning that through their faith my mom could be healed.

My mom and dad decided to put this last scripture to the test, believing that whatever they asked for in faith they would receive. They knew that my mom being healed was a good thing, worthy of this promise. They prayed, fasted and my mom was given many more priesthood blessings. They sincerely promised the Lord that they would do anything He wanted them to do for my mom to be healed. To verify their prayers were being answered, my mom bought an eye chart, and every morning she would test her eyes to see if they were getting better. My mom had also wanted to have another child, so they went forward in faith, knowing that the disease could be passed on. They started to tell their parents and other family. It particularly devastated my mom’s family to have yet another member inherit SCA7. It already felt like too much. Now it was more than too much. My grandma had previously figured it out, but it still stung. Grandma and Grandpa Candfield told my parents that they had always thought Cindee wouldn’t get it because she was so athletic. It was such a shock! They all combined their faith with prayer and fasting. Surely, all this united faith would work. They just knew my mom would be healed.

As the months passed, the eye chart indicated that my mom’s eye sight was not getting better. They came to realize that the answer to their plea was, “No.” My youngest sister, Aubree, was born. My mom yearned to have more children, but they decided against it knowing that she could potentially pass the disease on. My dad said that on the car ride  home from surgery to get her tubes tied that my mom just stared blankly out the window, defeated.

Why wasn’t she healed?  Did they not have enough faith? What about that undeniable feeling? My parents did not understand why their prayers to be healed were not answered. It was at this time in their lives that I feel my parents showed their greatest faith. They were filled with big questions, doubts and despair, yet they still kept going to church, serving in their callings, praying, reading their scriptures and teaching their kids the gospel. For example, I remember when I was fairly young we acted out the Plan of Salvation while my mom filmed us with our giant camcorder. I also remember that each Sunday after we got home from church, the child who was the most reverent got a full-sized candy bar. These are just two small examples of my parents teaching us the gospel and nurturing our faith despite painful disappointments and seemingly unanswered prayers. Over time though the answers did come, slowly, and some so slowing that it took many years. But they did come. And these answers are some of the most precious truths and knowledge they and we have gained as a family. I am so so grateful for the faith of my mother. How richly I am blessed because of her.

The way my mom coped with this disease was by filling her life with things she loved. For instance, my mom loved being a mother. Growing up, I felt like she never wanted to be anywhere else but at home with us, her kids. I think this is where I developed a strong desire to be a mom. I would always answer the question, “What do you want to be when you grow up?” with “A mom.” I knew my mom loved it, so I would too. This doesn’t mean we didn’t drive her nuts! I had three older brothers very close in age, and they did the craziest things. Today we sit around and laugh at the things they did. Only my mom’s great love for us could endure their shenanigans. She was so good at making us feel loved. She made holidays fun. For example, on Valentines Day she baked giant heart shaped sugar cookies, and on Easter she put together awesome egg hunts with tons of candy and a golden egg filled with money. Birthdays were also special and well celebrated activities. They included lots of presents, decorations around the house, and our favorite meals. Then when we were sick, she would pamper us with Saltine crackers and 7up. And she also would stick up for us with other adults and always seemed to be on our side in any disagreement with other kids. If we left to go on an overnighter, such as sleepovers or camp outs, my mom would cry when saying goodbye. I always knew that my mom loved me so very much! Even though this disease took away many of the typical mothering abilities, like driving, cooking and cleaning, I always felt so spoiled by her love. I know my siblings feel the same way.

Another thing my mom loved and that helped her cope with the disease was vacationing. When my parents were dating, my dad noticed how much my mom enjoyed getting out and doing adventurous things, so from the beginning, they made going on vacations a priority. Once they learned that my mom had this disease, they decided to take it up a notch and experience as many things as possible while my mom still had her health. My dad became quite skilled at planning adventurous vacations, and my mom just loved it. It gave her something exciting to look forward to and perhaps to forget her scary future with this disease. Their vacations were almost always a family affair. Often times the trips included more than immediate family; their parents, siblings and our cousins were regularly invited. This provided many opportunities for us to grow closer together. This not only enriched my mom’s life but our whole family.

Vacations really were a huge part of our life growing up; we went on MANY vacations! It seemed like nearly every weekend with good weather, we packed up our van and headed somewhere. In the five years following my mom finding out she had the disease, we went to Dinosaur Land, Yellowstone, St. George, Green River, Oregon, and Disney Land. We also went to my grandparents cabin at Bear Lake countless times and to Lake Powell many times as well. We camped at southern Utah, Moab, Bryce Canyon, Goblin Valley, and Topaz Mountain. My parents went on a float trip down the Colorado River through the Grand Canyon and a Western Caribbean cruise. Hopefully you are getting the picture that we went on a lot of vacations, and I didn’t even name them all! During these five years my mom had good health. This disease progressed relatively slowly for her since she didn’t start showing symptoms until an older age. Her eyesight continued to get worse, but she was still able to drive during this time. Also, her balance had not really been affected much up to this point. My mom just lived her life the best she could. She was thankful for the good health she had enjoyed thus far.

At the end of this five year period, we moved into a larger house not too far away, and then a couple years after that my mom’s sister Cathy reached the final stages of this disease. I remember my mom leaving and staying with her parents and Cathy for a time, so she could be with her sister at the very end of her life and assist my grandparents in planning the funeral. This was a difficult time for my mom, and she struggled seeing her sister suffer and die from this disease.

Around this same time, my mom’s dad also entered the final stage of this disease. He required constant care which demanded much if not all of my grandma’s time and energy. He not only needed physical care, but his mental health had deteriorated and at times required hospitalization. This aspect made caring for him especially heavy and challenging. Life became very difficult for him and my grandma, his sole caregiver. Years later my mom related an experience to me that she had during this time. She was alone in our hot tub in the backyard, and she had just gotten off the phone with her mom. Grandma Canfield told my mom that she was having a terrible time caring for my grandpa. He was not sleeping at night which meant neither was she. She felt utterly exhausted and unsure how much longer she could endure. My mom ached for her and felt they had been abandoned by God. Her sister had just passed away, and there was no break! She almost shook her fist toward heaven while exclaiming, “Where are you!? Are you even there, and do you love me and my family?” She retired to bed that night feeling forsaken.

The next day my mom had to go to BYU to take a final exam as part of finishing her associates degree. It was the end of the semester, and she had two finals to take that week. After all five of us kids left for school, she walked to the bus stop to catch a ride to campus (she now couldn’t drive due to blindness). She planned to take just one of her two finals that day, as she had not yet prepared for the other, a math class. After making the long bus trip to campus and walk to the testing center, she completed her test. Then, before leaving, she on a whim decided to go ahead and take her math final even though she had not studied at all. She reasoned that if she answered roughly half the questions correctly, then she could get a D on the test which would in turn lead to an overall grade “C” in the class, enough to pass. She figured this risk was worth avoiding the effort and hassle of coming again later that week. Besides, she was beginning to not even care anymore with all the hard things that were going on with her family. She sat to take the second test and had to guess on nearly every question. It was worse than what she had hoped. For better or worse, this happened to be one of those tests that was corrected immediately afterwards, so she quickly grabbed the test but didn’t dare to look at the score. She started the long walk back to the bus stop, feeling frustrated. Eventually she calmed down some and mustered the courage to look – 100%, a perfect score! That was impossible… It was a miracle! She stopped in her tracks and could almost feel the Lord say, “Cindee, I am here! And I am helping you, and I do love you.”

I love this story because it was a way for God to get my mom’s attention to tell her that He loved her.

One of the reasons I believe that my mom felt abandoned was because it appeared that God wasn’t helping her parents. However, He was there helping them during this very difficult time. I once interviewed my grandma about her story as a wife, mother and grandmother of those with this disease, and as she described this particular time of her life (when Cathy died and grandpa was so ill), I felt that one person should not have to endure so many hardships all at once. She then surprisingly said that she missed the divinity she felt during those days. She spoke of the hymn, “I Need Thee Every Hour.” She said that this was the song of her heart during this period because she so needed His help every single hour of every day! And she testified He was there all the time helping her, and she missed that closeness.

This is such an important part of faith – to know that God is a loving and caring Father and there helping us. It is very hard to trust in God if we don’t know these things for ourselves. My mom was a great example to me because she understood and exercised faith in these truths. For example, when I was in fourth grade, my dad took a year long sabbatical in Virginia (and we accompanied him). At this time my mom could no longer drive because of her poor eyesight, and she was also beginning to have balance problems. A member of our church ward in Virginia learned about my mom’s disease, so he proposed a faith-inspired idea to my mom. He suggested that the members of our congregation combine their faith in a ward fast for a healing miracle. After years of wrestling with God in prayer and fasting, my mom confidently responded that she had already received her miracle in that she had been given the strength to be OK with not being healed. She had come to understand that it was not the Lord’s will for her to be healed, but that the Lord was going to be there helping her all along the way. It was all going to be OK.

My mom’s example of faith is very special to me. I have reflected on her life and words many times in trying to understand the purpose and meaning of this disease, life and everything else. She once perfectly captured in words what it means to have faith in a talk she was asked to give at a BYU Women’s Conference, several years after we returned home from Virginia. She was asked to speak about her disease and the lessons learned from it.  Around 1,000 women were present and listening. I would like to end this post with some of her words on faith from that talk.

“Some of the things that I have learned through all this is that no matter how righteous, smart or capable we think we are, we are not in charge. The Lord is. And 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.” She went on to say, “In Job 38:7 it says that we shouted for joy {in the pre-existence} because we knew we were coming to earth. I’m sure that we knew that this earth life could be filled with hardships and trials but we shouted for joy anyway because we knew it was worth it. I hope and pray that we each can have enough faith in Christ so that we will be able to handle anything put in  our paths and when our earth lives are over we will shout for joy again because we made it.”