SCA7 Through My Eyes

 

I start with this video because you can get an understanding of what this disease does to a person, and what it did to Callie in particular. A little over a year after this video was made, SCA 7 took her life. This disease is devastating, and really, only those who experience it know just how frustratingly hard it is. For me, it broke my heart to see Callie struggle through it. I know it was hard for her. I used to imagine her life without it. She would have been highly sought after by the boys, gotten married, had a bunch of kids, and had a fun time all along the way. Unfortunately, having this disease took those experiences away from her. Why did it have to be this way? Looking at Callie’s life though, she was happy, truly happy. She really was! All who knew her would assure you of this. Surprisingly, it took a lot longer than expected for her to pass away, and her family believed and said that she just loved life so much that she didn’t want to let go. How could this be!? You saw her in the video. She was blind, wheelchair bound, and had lost most of her independence. Life had dealt her a difficult and less desirable hand, yet there is much from Callie’s life and example that we can learn about finding enduring joy. In what follows I have separated her final years’ story into three parts: family, God, and people. These are the three ways that I feel Callie’s example shows us how to have a happy and full life.

Callie had a big decision to make upon returning home from her junior year of college. It was whether to return to BYU the next year or stay home. She really enjoyed the college life, and she wasn’t sure if she was ready to give it up. In the end, she chose to stay home. There was much going on at home, and she wanted to be around for it. Plus, her declining health made schooling harder. After she made this hard decision, she never looked back.  She would live seven more years. She went on to fill this time with meaningful connections with her family, God and many others.

Callie’s family was very important to her and she deeply loved them. Her family was not perfect, no one’s family is. Her mom had passed away and her brother would soon follow. Her dad had remarried and Callie would later help to welcome two new sisters into her family. She invested much of her love and attention in them. Her time and relationships with family are things she highly valued. She found much happiness in her efforts.

It was April 2006 when Callie returned home, and at that time, her brother Lance’s health was very poor. He had lost a lot of strength and was unable to eat much. Within weeks hospice came to their home to assist the family in providing care for Lance. Callie was very concerned about him. She wanted him to be comfortable and happy, and he was. To the end he remained positive and vibrant, even telling jokes to visitors during this time. Not long after the arrival of hospice though, he passed away. It was very hard for Callie to say good-bye; she was close to her brother and loved him very much.

At the time of Lance’s passing, Sara learned she was expecting. This was a miracle and tender mercy! This ended two years of infertility. Plus, this news brought the hope and promise of a new life at the very time of another beloved life departing. Callie was so excited to have a little sister! This picture captures it well. It was taken at the hospital just after Rayni was born. You can see pure love in Callie’s face. It was a wonderful time.

 

Callie gave much of her time and affection to Rayni, and there is nothing Callie would have rather done with her time. Due in part to their time together and Callie’s attention, Rayni learned to talk at a young age. Callie spent many hours teaching Rayni numbers and how to count, the names of all her cousins (she had a lot of them!), and her letters and how to read. It was such blessing for Rayni to have constant adult attention, and it was a great blessing for Callie to have someone with whom to share her time. In addition to learning-time, the two girls also shared a love of candy. Callie maintained a large candy stash under her bed. As typical of children, Rayni often got into her candy. Callie would get onto Rayni for taking her candy as though she were upset, but I think she actually enjoyed sharing it.

About 3 and a half years after Rayni’s birth, an unexpected opportunity came up for Scott and Sara to adopt a beautiful baby girl, Ella. They had been unable to have anther baby, so this was a longed for opportunity. Sara was able to be there when Ella was born. Both Rayni and Callie were elated to have a new baby sister. At this point Callie was fairly advanced with the disease, so she was not able to do as much for Ella as she did for Rayni. However, her love was no less; Callie adored these two little girls. These younger sisters had a lot of fun together, and now Rayni had a partner in crime when it came to Callie’s candy stash! Scott and Sara always got a good laugh hearing Callie get onto those two for taking her candy. In the end Callie thoroughly enjoyed watching them grow. She would give updates on them to almost everyone with whom she spoke. Her little sisters were a large blessing in her life. Think about it. She was confined or unable to get out and about due to the disease. She was also unmarried and without children. Yet in her home there was new life, energy and abounding activity and an even the opportunity to help mother these sweet little girls.

Another thing to which Callie dedicated much of her time was sports – local and collegiate. She loved attending all the high school sporting events with family and friends.She would get so excited about the Snow Flake Lobos. She even wanted to go to their away games. She loved planning trips to these games. It was a common sight to see Callie on Scott’s back as he climbed the bleachers and then set her on a pillow. He would then be heard giving Callie play by play descriptions as he was her eyes. This time together and service bonded whomever helped her at the many games she attended. Callie also enjoyed college basketball and it’s  March Madness Tournament. A huge bracket had to be taped on the living room wall each Spring with bracket guesses. Then she would host game nights at her house. Callie found a great satisfaction in being involved with sports and the connection it created with family and friends. And I think it was a way for her to continue to feel connected to Lance, even though he was gone.

Callie had a close relationship with her dad. They went through a lot together in losing both Carolyn and Lance to this disease. Also, Scott greatly depended on Callie  while growing up since Carolyn was handicapped from SCA7. Now Callie greatly depended on him. This service just increased their bonds and love for each other. Callie once told me, “My family is very loving and fun. It is hard to not love people that go through so much and people you serve all the time. I think that is why our families are so close because we serve each other so much.” Callie loved her family. Her example shows us that as we value our family relationships and strive to grow closer to each other, we will find much happiness and contentment.

Callie loved God, both her Heavenly Father and His Son Jesus Christ. Like Callie’s step-mom Sara said in the opening video, Callie’s greatest quality is that she had such a strong desire to do what is right. Being Callie’s roommate and living with her on a daily basis, I definitely saw this quality in her. I would often find her praying and reading/listening to  her scriptures, and living God’s commandments was very important to her. She loved to have fun and was a bit mischievous in her pranks, but when it came to God’s commandments, she strove with her might to keep them. She knew God loved her very much, and she loved Him too.

Service in the temple was another way that Callie spent her time after returning from BYU, and many came to know her through the selfless service she rendered there. Prior to leaving BYU, Callie’s Bishop, Bishop Freestone, had encouraged and authorized her to get her temple endowment. Then for five of the last seven years of her life, she attended the temple almost weekly. The last two years of her life it became physically too difficult to go. Usually Callie’s Grandma Flake took her since she worked in the temple, but fellow church members would help out when needed. All the temple workers and those that attended grew to know her very well. The workers developed a routine to help accommodate her blindness and inability to walk in order for her to serve there. Over time it seemed that wherever Callie went people were always coming up to and greeting her because they recognized her from the temple.  This was even true outside of Snowflake since the Snow Flake temple served the surrounding areas as well. These people were very touched by her sweet example. I know this is true because my family went to the Snowflake temple the morning before Callie’s funeral. Several people came up to us because my mom was in a wheelchair and shared the same disease as Callie. They recognized this and shared their experiences with and memories of Callie. You could see how much she meant to all of them.

Callie was asked to speak quite a bit and she was very good at it. She spoke several times in her home  ward, at firesides, and at different events and places. She had to memorize her talks since she couldn’t see to read notes. People wanted to hear about her life and convictions. They could see that she had some very large physical limitations but was happy and loved her life. People wanted to understand how this could be. When she spoke, people listened attentively. Three years before she passed, there was a large Christmas devotional for the temple workers from all the surrounding areas in Snowflake. It was a large group of people. They asked Callie to speak . She talked about how she loved doing temple work for those who could not do it for themselves. She spoke of how so many people had to help her to do things that she could not do for herself. Temple work was something she could do for others…something very valuable and eternal. She spoke of how much this meant for her, to give back in a way. It was a powerful message coming from a young woman in a wheelchair and blind, and you could hear in her voice that it was getting hard to speak. They were able to understand her message clearly.

Callie was provided other opportunities to serve in her church; she was invited to team teach a youth Sunday School class with her dad. Together they taught the 11 and 12 year olds for many years. Her dad enjoyed teaching with her because she helped the lessons to be more meaningful and powerful. Callie would come up with stories to go along with the lessons, and when she talked, those rambunctious 11 and 12 year olds were silent. Her speech was a little slurred due to the disease, so you would have to really listen to understand what she was saying. She spoke from her heart, and it was awesome. This really impacted those young kids, and as a result Scott and Callie made many connections with a lot of youth.

Callie was also provided another opportunity to serve in her church through a program previously called Visiting Teaching, now known as Ministering. She, like every member, was given a list of people to visit and watch over. Callie was faithful in her assignments, and regularly visited those on her list. Sometimes Callie was given people who were harder to visit, and she was successful in visiting them when others may not have been. It would be difficult to turn away someone in a wheelchair, knowing the effort it would have taken to visit them. She was blessed with wonderful companions that would help Callie get to these homes, in and out of her wheel chair and with any other limitations she had. On the other hand, great people were assigned to visit and minister to Callie. They were faithful in coming and spending time with her. Many meaningful connections came into Callie’s life and those around her through this service.

These are Callie’s words. “I am so thankful that we have, in the gospel, the plan of Salvation and the knowledge that we can get married and have kids after this life and live eternally. I don’t know what I would do without that knowledge. I have always had a strong testimony of the gospel. I am thankful for this with this disease.” Callie’s testimony of God was strong and so was her love for Him. Her sincere service to others was a manifestation of her deep love of God. Callie’s diligent example teaches us that we can find great happiness and peace as we love God, our Heavenly Father and His son Jesus Christ.

In addition to her time spent at home with family and in service to others at church, Callie filled her days doing things she loved with people she loved, both extended family and friends. One tool that enabled Callie to do this was a cell phone. Having a cell phone gave Callie a sense of independence. Even though she could not see, she learned how to navigate her flip phone. Through this means she stayed connected with people: family, friends, and many others. She would call these people regularly, and many of them would call her regularly. Scores of people have memories of their phone calls with Callie. For instance, she religiously called our Grandma Candfield every week, and it meant so much to her. On these calls, Callie loved to tell others all the latest news and information that interested them. Another thing having a phone allowed her to do was to plan activities.  She loved planning parties and get togethers, birthday surprises, holiday celebrations and sporting outings.  Callie used these opportunities to nurture lots of connections with people. She filled her life with keeping these connections, planning ways to make them stronger and even to make new ones. I think this is one reason why she loved life so much.

Two notable things Callie loved were shopping and eating ice cream. For several years, her Aunt Paula would take her shopping every week. Their shopping trips usually included a lunch out. Callie really enjoyed these trips and the time together with Paula. She was a lot of fun and kept Callie up to date on everything going on in the large Flake family and their small town, something Callie really enjoyed! As mentioned, another one of Callie’s loves was ice cream. Even when eating became more difficult due to the loss of coordination that accompanies this disease it did not stop her from eating ice cream. A Sister Bailey from her church congregation would take her for ice cream every Thursday. These two were Dairy Queen regulars! They would eat their ice cream while they talked and talked. Sometimes they would park in Callie’s driveway and talk for an hour or more. Callie really appreciated these weekly trips shopping and eating ice cream, and as much or more than the activities, she enjoyed spending time with these great women.

Another group of people Callie really enjoyed spending time with were her friends from High School. She had an awesome group of friends. Through the college years and even after, they continued to nurture their friendship. Most of her friends had married and were starting to have children, something Callie longed for but did not have. Regardless of their different circumstances, her friends were great at including her. Often they would pick her up to go eat lunch at a park,  go to a celebration, or do some planned activity. It meant a lot to Callie to still be included and feel close to her high school friends to the end of her life.

There are many others who I have not mentioned that were part of Callie’s life. Many extended family, friends and neighbors often reached out to her. Callie was important to them, and they were important to her. Like my sister Aubree, she kept in regular contact with Callie and came to Snowflake to visit her. I also did this along with many others.  The connections that Callie was able to make with so many, greatly enriched her life. Callie’s example shows us that as we value others and strive to have meaningful connections with them, we can find happiness and fulfillment.

Doing the things Callie loved over time became harder and harder as the effects of the disease became worse and worse. She began to tire easily and needed to rest or sleep more. Outings became harder. She did not want to give them up, but she was often too weak and tired to go. She would not admit that she did not have the energy to do outings, so more trips were planned than she could do. At a certain point, Callie was unable to continue serving in the temple, and then she could no longer do the shopping trips and away games for sports. On the shorter outings, she could still do them, but someone would have to carry and assist her. She did home high school football and basketball games until close to the end of her life. Many helped pack Callie around. She appreciated their help to get out, and she held on to these opportunities to get out until she could not do it anymore. To the end she remained very optimistic. Even when she had to miss out she always felt that next week she would have the strength to go.

Scott was very impressed by Callie’s optimism and enthusiasm. He said that she had this quote hanging on her wall:

“Be optimistic. Don’t be grumpy, when the road gets bumpy… Just smile.” This is what she truly lived. Of her enthusiasm he said, “She never ran out of enthusiasm. She ran out of energy and she ran out of life. But she never ran out of enthusiasm for it.  This is why she was so easy to be around…why she was so delightful to be around. She just was fun.”

As time progressed, Callie started to run out of life, but everyone was amazed at how long she held on for. Knowing she loved life, they said she didn’t want to let go of it. When it became too hard for Callie to leave the house, many visitors started to come to her. People became comfortable enough that they would knock on the door as they walked in and head back to her room. Domini, her best friend, came to visit a lot. She remained a faithful and loyal friend throughout her life. In fact Callie requested that Domini speak at her funeral.

Callie’s heath finally declined to a point that her family thought she would pass away very soon. Eating had become so difficult that she consumed very little, if anything at all. Doctors prescribed morphine to make her more comfortable. Surprisingly, she continued to hold on and live longer than expected. There were ups and downs. She would stop eating and only drink water. Again, the family would think she was about to pass, then she would rally back and eat something. This process went on for a couple of months. Callie was already of a very slender build physically, but during this time she became so thin that it was hard to recognize her. Scott said that she had such a big healthy heart that it took a lot for it to stop beating. Everyone was amazed at how long she held on. They kept saying that she loved life so much that she just didn’t want to let go.

At the end of Callie’s life, her good friend Domini was living in Texas where her husband (Callie’s cousin) was going to school. It turned out that they happened to be home in Snowflake during their summer break, right at the point when Callie’s heath had declined so much and was nearing the end. Domini knew that Callie wanted her to speak at her funeral, but Domini didn’t know how it would all work out since they had to go back to Texas for the next year of school. They were poor students, and Domini had all her young children to watch while her husband attended classes. She just didn’t know how it would all work out. They returned to school, and Domini stay tuned to Callie’s status with phone calls. After a couple weeks she got a phone call that Callie was probably going to pass soon. The next week Domini’s dad suddenly and unexpectedly passed away. With this devastating news, Domini’s family flew home to be with her family. Domini arrived home in the evening, and she made time to go over to see Callie too because she knew that Callie didn’t have much time. Callie hadn’t eaten for two weeks and had very little life left in her. It was a miracle that she was still alive.

Here are Domini’s words. “She was so thin. I had never seen her that way. It didn’t even look like her. I don’t even know how to describe how she looked. She just hadn’t eaten in forever. And she was barely breathing. She would take a breath in what seemed like every minute. And I was able to just talk with her and tell her things I wanted her to tell my dad. I felt like she was hanging on for me because I kind of needed that. It was such a blessing for me at that time to have her be there. She passed away just a few hours later, early Monday morning. I barely made it in time to talk to her. And I was able to talk at her funeral the same day that I talked at my dad’s funeral. She was such a true friend!”

When Callie let go of her life, she was surrounded by her family. She had completed her most beautiful mortal life. Callie’s example is what will always stand strong. She touched and influenced so many lives for good. Her funeral was very sweet. She did not have an open casket, so the night before, instead of a viewing, a large gathering of family and friends shared stories and precious memories of Callie. It was so much fun hearing all these stories.  Domini’s talk the next day at the funeral was excellent. Here is a song she shared called “The Test”:

“Tell me friend, why are you blind?

Why doesn’t he who worked the miracles, send light into your eyes.

Tell me friend if you understand.

Why doesn’t he with power to raise the dead just make you whole again?

It would be so easy for him.I watch you and in sorrow question why.

Then you my friend in perfect faith reply.

Didn’t he say he sent us to be tested?

Didn’t he say the way would not be sure?

But didn’t he say that we could live with him Forever more, well and whole,

If we but patiently endure?

After the trial we would be blessed

But this life is the test.”

Callie’s Aunt, Lorraine, also spoke and gave an excellent talk at the funeral.

The attendance and circumstances surrounding it paid a beautiful tribute to Callie and the life she lived. It was inspiring to see all the people there. In that small town the large chapel and over flow were full. And this didn’t even represent all those whom Callie touched. The day was warm and sunny, but at the burial, the weather changed and it started to pour rain very hard. So much so that people hesitated to get out of their cars. After a bit we all just braved it. It even hailed a bit during it all. People joked that the rain was Callie’s idea, but the hail was her brother Lance’s. It was sweet to think of them together again pulling pranks. As we stood around Callie’s casket, it hit me hard, and my tears began to fall as hard as the rain. I loved Callie, and I ached for what could have been without this disease. I also hated to think of her struggle. She bore it very well though, even though it was so very heavy! Despite it all she lived such a good life! I was having a hard time letting go. I began to understand how God’s way is always the best way if we look beyond this life. Really, the life I imagined for her without this disease greatly paled in comparison to the beautiful life she did live. I am confident that this life was Callie’s choice because of all the lives she touched for good and the awe inspiring example she left.

The morning I got the phone call that Callie had passed away, I was alone in my living room. I fell to my knees and just sobbed. I have always desperately held onto a hope that someday Callie, as well as my mom, sister and myself, would be healed of this horrible disease. So when she passed it hurt real bad. As I laid on the couch, with a tear stained face and thinking of Callie, I knew that she was there in the room with me. I could feel her there! As I looked to where I felt she was standing, it was like she was telling me that it was OK. It was all going to be OK! I wondered why she came to me, with everyone she could visit, why me? It was so comforting and just what I needed. She was so good like that!