SCA7 Through My Eyes

I am really excited to tell the story of my Aunt Carolyn and her two children, Callie and Lance. They, along with Carolyn’s husband, Scott Flake, are the neatest family I have ever known. They all had to endure such extremely heavy trials, yet their home was full of laughter and happiness. Whenever I visited them, I felt uplifted and wanted to linger. They have all had a huge influence on me. I have often looked to their examples. Their lives were so sweet and good despite having this disease. It is truly remarkable, and I am excited to try to capture it all.

Included in this family is Scott’s current wife, Sara, who graciously took care of both Callie and Lance during the end of their lives after Carolyn had passed away. Also included in the family are Scott and Sara’s two daughters, Rayni and Ella, who were Callie’s pride and joy. They are all such a wonderfully bright part of this family.

 

 

 

 

 

 

 

 

Carolyn was the fourth daughter of my grandparents Paul and Marlene. She was a happy, sweet, confident yet humble person. She had a very deep and wise perspective on life.  Chris’ and Don’s deaths along with her dad and Cathy struggling with the disease had a significant influence on her. She once wrote, “Our Heavenly Father does not want everything in life to be great and wonderful. We need trials to help us grow.”

When Carolyn started college she did not know if she had the disease or not, but her eyesight was just beginning to be affected. She met Scott at BYU-Hawaii. Carolyn had been attending Dixie Collage for over a year.  She had always wanted to attend BYU-Hawaii, so when some of her friends wanted to go there for the Spring Semester, she was eager to join them. Scott had just gotten home from his LDS 2 year mission. Some of his friends were going to BYU-Hawaii for the Spring semester too, and he decided to join them. The two met at a dance during the beginning of the semester, and their relationship began to blossom from there. They would take many long walks around the island and talk. What a beautiful place for a beautiful relationship to begin!

Carolyn told Scott about the disease in her family and of the possibility that she too could have inherited it. Scott understood, in part, about the gravity of this, and he still continued to see her and fall in love. When the semester ended, Carolyn went home to Utah and Scott to Arizona. They kept in touch through phone calls and letters. By the next month, Scott decided to take a trip to Utah to visit her.

Carolyn had just recovered from pneumonia, so she was pale looking, unlike her tan self in Hawaii. My grandpa was having to use a walker at this point and spoke with his whisper. Cathy also was very affected by the disease. When Scott arrived, He seemed to be OK with these things. They were all so good and nice to him, and he saw that their lives still seemed pretty normal. Until one time when he was sitting on the porch swing with Carolyn, and Cathy was in the bedroom upstairs with the window open having a singing lesson. It sounded awful, and he knew it was because of this disease. For Scott, this was a window into the disease and its implications, and it scared him. Sadly, he left Utah telling Carolyn that they were too different for it to work out.

Carolyn was hurt but tried to get over him. Scott also tried to get over Carolyn but was unable to do so. Later that summer Carolyn got a phone call from him saying that he was in Utah with his family at Aspen Grove. He wanted to see her. They got together and things went so well that the next day Scott told Carolyn he loved her. They were soon engaged and then married in the Jordan River temple. Before Scott married Carolyn, he was fairly certain that she had this disease. He felt that he would be lucky to have even a limited number of years with Carolyn before the disease would take her. What a great guy!

They moved to Mesa, Arizona where Scott attended college. Mesa was so hot! Carolyn detested the heat there, so she called it “piggy” Mesa. You have to know that Carolyn was a very good and pure person, so much so that the closest thing to a bad word she would ever say was “piggy.” Not long after they moved to Mesa, Carolyn lost her driver’s license because of her declining eyesight. Now they both knew for certain that she had the disease.  They went to a geneticist to talk about having children, since they knew that this disease could be passed on to future children. Not a whole lot was known about SCA7 then, but the geneticist did know that there was a 50% chance of passing it on. This made having children a big decision, so they prayed and fasted for direction from God. They received an answer to go ahead and have children. The answer was not that your children would be free of this disease, but that it was the right thing for them to go forward and have children. My uncle Scott always says that he has no regrets and is so thankful they decided to have Callie and Lance, despite both inheriting this disease. Even having the disease, they had such wonderful lives. Lance even said that if he had the choice, he would choose to have the disease because he wouldn’t want to change anything. Remarkable!

Not much time passed before Callie was born. She was a beautiful, healthy and thriving baby. A couple of years after Callie’s birth, Lance joined their family.  While the kids were young, their parents did not know they had this disease and greatly hoped that they would not! Carolyn and Scott just adored their children. They were both wonderful parents, and Carolyn was especially good at being a caring, loving and devoted mother. Her relationship with them was very special.

Callie and Lance were young while their family moved around Arizona for Scott’s schooling. They lived in Mesa, Pinetop, and Prescott Valley.  During this time the disease progressed for Carolyn. She went from being able to walk on her own, to needing help walking, and then to eventually using a wheelchair. She did not like having to use a wheelchair and just used it outside the house. Inside she scooted around on her bum. Her eyesight also declined and became very limited during this period. Due to her disabilities, she needed a lot of help from others. She was not afraid to ask others for help and did it in a kind way such that people were eager to help her. Their service blessed her life, but it also blessed them (those who served her). Through these experiences she made many good, close friends and some stayed in contact and continued to help her all her life. Like weekly trips for ice cream and so much more. It was beautiful.

While they lived in Prescott Valley, their church ward brought in meals for them regularly, in an effort to try to help. Carolyn loved the friendly church ward there, but she and Scott felt bad since Carolyn could still cook. One day Scott was getting in the car with Carolyn and the kids, and he thought it would be fun if he let Carolyn drive while he helped to steer from the passenger seat. In fact, the whole family thought this was a fun idea. While they traveled down the street with Carolyn driving, the Relief Society president saw them and did a double take when she realized Carolyn was driving with a look that said, “Have they been lying about Carolyn?” They all laughed about it. Life had its challenges, but Carolyn was a happy and fun-loving person, along with her family as you can see.

Scott got a job near Snowflake, his hometown, after finishing school, so the family excitedly moved there. Scott began to build a beautiful home in the middle of “Flakeville.” This is a neighborhood just outside of town, or out in the country, where  his parents and other family live. It was full of Flakes. Scott comes from a very large family and now they were going to live right next to many of them. Scott finished their home, and they made their final move. This was a busy yet exciting time. Carolyn loved Scott’s big family and loved all their many get togethers. They and the kind people in the small town of Snowflake, were a wonderful help to Carolyn and her family. This was the perfect place for them to live.

While Carolyn loved living by Scott’s family, she did miss her family. She talked with them often by phone and enjoyed going to visit them in Utah whenever possible. They made many trips there. She had a special relationship with her dad, Grandpa Paul. He had a hard time communicating with others, since he could only whisper. He really craved conversation with others. When visiting, she would go sit on his bed, and he would talk nonstop until he couldn’t talk anymore. Carolyn would just sit and patiently listen to him with great interest. It was very sweet. He passed away when Carolyn was living in Snowflake. Two years previous her sister Cathy passed away. She was extremely sad to say goodbye to them, while at the same time, she was happy that their suffering had ended. She knew that she was going to be with them again.

Later, when the surviving members of Carolyn’s family (Carolyn, Caren, my mom and my grandma) would get together, they would talk, laugh and cry as they reminisced. I remember when I was young and the Canfield family would get together. We cousins would be off playing and having a blast, then we would walk into the house to a scene of all the moms and grandma bawling their eyes out together. This seemed to happen every time they got together! They had some great things to talk about as half of their family was on the other side. Together, they must have had a burning knowledge that life continues after death and that there is a plan and purpose to it all.

Through it all Carolyn had an eternal perspective and a great sense of her divine worth. She knew her physical limitations; she received the service that her family and others rendered her; she knew something about the burdens her husband carried, yet she was not apologetic. She truly believed that Scott got a real bargain in marring her. This is amazing for someone who had to become dependent on others for nearly everything. In these very humbling circumstances, she saw this disease for what it truly was – a way for her loving Heavenly Father to teach her and all those within her influence to grow and become more like Him.

Scott, who was closest to Carolyn, definitely learned and grew because of this trial they had to face together. Scott’s older sister Loraine, has told me of the growth she witnessed in Scott during his marriage to Carolyn. She said, “I watched Scott bring fun and lightheartedness to what was sometimes a grim daily survival for Carolyn. I watched Carolyn’s deep goodness and faith bless Scott as she accepted his daily service. Scott allowed his faith to grow. He rebounded from occasional impatience and despair. He mellowed and deepened in character and integrity. The reach of his compassion and kindness, because of his experiences with Carolyn, continue to bless all around him.”

 

Next blog post:  Carolyn, Part 2