SCA7 Through My Eyes

Carolyn was an optimistic person.  It was not in her nature to complain or feel bad for herself. As the disease progressed, she lost many abilities including her eyesight and went completely blind fairly early on. She continued to cook though for as long as she could. She would prop herself up against the kitchen counters to cook. Occasionally the family got a surprise in their dinner. They once found a measuring cup in a casserole and another time a dish rag in the spaghetti. Carolyn laughed about it with the family and did not feel embarrassed.

Carolyn was also a hard worker. She tried very hard to keep her independence for as long as she could. One example of this was seen in her efforts to do household chores. She would scoot around the house on her bum, picking up clutter and collecting the laundry. Then she would pull herself up to the washing machine and do the “sniff test” to determine if something was clean or dirty. She wore out the seat of her pants very quickly since she scooted around so much.

In their new house in Snowflake, they had enough land for Scott to have some horses. Carolyn loved being around animals. In fact throughout her life she always wanted animals, especially unusual ones. For instance, these are some of the animals she wanted: zebra, goat, guinea pig, miniature donkey, peacock and turkey. Once during a Pioneer Day celebration, her sister-in-law, Loraine,  was staying with them. Everyone had left for the activities, but Carolyn stayed behind since it was going to be too hard for her to go. As Loraine was walking out the door, she heard Carolyn calling, “Scoooootttt!” over and over. She went in to her room and said, “Scott is already gone Carolyn. Is there something I can help you with?” Carolyn said, “Oh. I just wanted to tell him that I want a miniature gerbil at the fair.” Lance used to joke that an audio recording of a barnyard would make her happy.  They once got a new dog and while everyone was around holding it, she said, “Wow, he is really soft!” Lance replied, “Mom, you are rubbing my head.” Again, she laughed along with everyone else.

Another time Scott found the coolest miniature horse named Ed. He bought it and was very excited to show it to Carolyn.  Scott sat her on the grass and told her that she would not believe how small it was. Then, he went to get Ed. As she sat there eagerly in the sun, their little wiener dog ambled over, climbing onto her lap. As she petted it she exclaimed excitedly, “Oh, it is small!” In the end, she enjoyed having these neat animals around for visitors to enjoy which promoted interaction, something she loved.

Carolyn loved holidays. She worked hard to make them special and would get very excited about them. On Christmas morning, Scott would get annoyed when Carolyn would wake up at 4 in the morning and try to wake up the kids. On St Patrick’s day she would make key lime pie. On Easter she would put candy in eggs and scoot around the house to hiding them. She would then scoot into the kids’ bedrooms and wake them up. Callie said that sometimes they would find eggs in the middle of the floor, but she said it was still so much fun. Carolyn also made their birthdays extra special. Callie and Lance really loved this about their mom.

Carolyn eventually lost her ability to keep up with the household chores. Her family began to help out where needed, but she continued to do whatever she could. Callie, at a fairly young age, began to help with the cooking as her mom gave step by step directions. Callie would also help with the grocery shopping using a list her mom made that had everything in order, row by row, at the local grocery store which Carolyn had memorized. She knew where everything was. Someone could be pushing her down an isle, and she would say, “Stop. The canned black beans are right here on the middle shelf.” It was amazing. With everyone helping out, they were able to keep up.

Carolyn’s many friends and extended family also did a lot to help take care of her. One friend watched many musicals with her, which she loved, and would narrate them to her. Another friend read her The Work and the Glory series over several years, along with other books. Many brought in meals for their family and did a lot to help make her life easier. Those who helped and associated with her took great pleasure in it.

Scott and Carolyn had a sweet relationship. Scott is very funny and would often playfully tease Carolyn. She enjoyed this attention; it made life more fun. For example, Carolyn was a very careful bargain shopper and loved getting a good deal! When shopping at the grocery store with Carolyn, Scott would occasionally say while pushing her down an aisle, “Oh wow! That is an incredible deal.” Then he would keep right on walking and pushing her. She would get all excited and then flustered that they passed by it…not knowing what it was. Scott was teasing her, of course.

Scott loved to inform Carolyn about the great deficiencies of Utah vs. Arizona. When they would travel back and forth from Snowflake, AZ to Bountiful, UT he would make a great production of feeling better or worse depending on which border they had crossed. Carolyn never let him get away with denigrating her home state though. She fiercely defended Utah, which only made him try harder to make Arizona sound glorious.

Callie remembers her dad teasing her mom about her family, the Canfields. When he would turn on the electric can opener, he would announce, “The Canfield family singers.” When teased, Carolyn would just smile, laugh and say her familiar, “Oh Scott.”

It was sweet to see Scott and Carolyn’s great love for each other. It was a familiar sight to see Scott’s head in Carolyn’s lap and her rubbing his head with her long fingers. She loved taking rides with Scott on his motorcycle. They did this up until the last couple months of her life. Scott took care of her so selflessly and with a cheerful heart. It was truly beautiful.

A great gift that Carolyn possessed was the ability to listen. This especially benefited her children. She wanted to know every detail that went on in their lives.  When they would get home from school, she would very eagerly be waiting for them and want to hear everything about their day! She listened to them with a lot of interest. One time she got very upset, right along side Callie,  at a little girl in Callie’s class that did not compliment her back after she first complimented the girl. Lance would sometimes tease her by responding with a one word response like “good” after she had asked him about his day at school, then seeing her disappointment, would gladly tell her everything. She stayed very connected and involved in their lives.

One of Carolyn’s and Scott’s greatest fears was that their children might inherit this disease. Oh how they hoped that their children would escape it! When Lance was in second grade, Scott had gone out one evening to get the mail and found a letter from the school nurse. Curious yet nervous, his heart began to race as he opened it. It said that Lance had failed the school eye exam and needed to get his eyes checked. Dread swept over him and tears began to fall. He knew that this most likely meant that Lance had inherited the disease. This was a total shift in their hopes for Lance’s future. Now, he would have to face the trials of this disease at a young age, and it was going to progress quickly. Scott took some time to recoup before he went home and privately told Carolyn. They both wept.

They decided to go ahead and get his eyes checked by a family friend that was an optometrist, since there was still a small chance that he would just need glasses. Scott and Lance drove to their family friend who checked his eyes and confirmed that glasses could not help; he was going blind. Carolyn and Callie were at home, nervously waiting for their return. Callie remembers her mom saying, “I hope so bad he doesn’t have it.” When Lance and Scott walked in the room, Callie knew the outcome by the look on her dad’s face, and she too was devastated by this news. Scott and Carolyn went for a difficult drive together to weep and talk. Lance was too young to realize what was going on, and Scott and Carolyn decided not to tell him yet. They came back with a new bike for the unsuspecting Lance. This was a very hard time.

Later on, Lance began to realize that he had the same disease as his mom. He handled this remarkably well and seemed to be more concerned about comforting his parents in their sadness. He was optimistic, and he faced the future with an attitude of, “It’s no big deal, it will be OK.” He, like his mom, also didn’t have it in him to complain or have self-pity. Their inner strength is inspiring.

Carolyn and Scott thought that Callie had escaped this disease since she was older than Lance and had not yet shown any signs. Plus the odds of them both inheriting it seemed too high. In her seventh grade year, Callie began to notice that she was having a hard time seeing the board at school. Upon realizing her eye sight was bad, she knew she had this disease. She was OK with it, but she did not tell anyone. She knew it would devastate her parents given what she experienced with Lance. She was able to keep it a secret for over two years.

At the beginning of ninth grade she wanted to try out for the basketball team, but that required a physical (including an eye test), so she didn’t try out. Then at the end of that year, she really wanted to try out for cheer, but again she knew that a physical examination would be required. She decided to do it anyways, since she couldn’t keep it a secret forever . Callie and her dad went to the doctor to get the physical. Scott said that he (and I assume Carolyn too) lived in mortal fear whenever their kids got their eyes tested. They must have been so worried while Callie was having an examination that included an eye test. The doctor did in fact test her eyes which revealed bad eyesight. The doctor told this to Scott, and again, he was filled with dread. Callie began to cry and told her dad that she had known for the past two years. He was surprised, but again the child was more concerned about the parents and how hard it was for them.

Scott came home and told Carolyn, and again they wept. Finding out that their children has this disease was so devastating and the hardest point in their lives. All parents have hope for their children and what their lives might be like. This disease completely shifted all of this. They would die much younger, facing the debilitating effects of this disease, probably not get married and so on. This was a very difficult reality to face. Yet they faced it with faith. Life went on and they tried to make it the best they could.

As Callie and Lance got older, Carolyn, especially, got excited about their dating. Whenever they got asked to a school dance or out on a date, she would get very excited. Once when Callie got home from a date, Lance was teasing her about kissing the boy. Carolyn chimed in, “I know Callie didn’t kiss him, but I wish she would have.” Towards the end of Carolyn’s life, when Callie was in High School, Carolyn had become very weak and was unable to do much. She would often be lying in bed when Callie got home. Callie would go lay next to her mom, telling her about her day and everything going on. Carolyn continued to be very interested and get so excited for the good things that happened. Callie cherished this time with her mom.

Carolyn was also a great listener whenever extended family or friends came to visit, which was often. She loved to hear all about what was going on in their lives and would ask many questions. She was good at keeping confidences when necessary, but also enjoyed sharing their good tidings, funny stories (of which the large Flake family has many!) or important news with others when appropriate. She found great joy in this. For example, a sister-in-law once intentionally told Carolyn first that she was pregnant, so that Carolyn could then be the one to share the news with everyone.

 

Carolyn did have to face depression, but it was never severe. She took Prozac for the last five to six years of her life. It really helped her, and she had no major issues with depression. What a blessing.

Eventually eating on her own became difficult. Her family had to feed her all her meals; they helped to do this for approximately four years. Fortunately, Scott had a job where he was able to come home and eat lunch with and feed Carolyn. Towards the end, her ability to eat enough food each day became very difficult, and she was so uncoordinated that she would often chew on her tongue and make it bleed. She began to lose weight and grew very weak. She spent a lot of time in bed. She eventually got down to 80 lbs.

The time came for hospice to assist since she was eating so little. The hospice nurse was a close family friend, and they had a very good experience with her there. She was with them for the last week of Carolyn’s life. During that week, the nurse gave her morphine to help with the pain. Carolyn stopped eating and drinking at this point.  When the morphine wore off, Carolyn would give a hand signal to let them know. It was a blessing for her to have this to help her be more comfortable. The nurse knew that Carolyn was at the end and informed the family, so Scott, Callie and Lance were around her as she peacefully passed away.

It was very difficult for them to say goodbye. It was such a great comfort to know that they would be with her again. Callie and Lance, as youth greatly missed their mother.

She passed away in the middle of Callie’s senior year of high School. A couple of months later, Callie was sitting in a class when they announced over the intercom the prom queen and king nominees. She thought she heard her name but was not sure so she asked around. When she found out that her name had been listed, she could not contain her emotions and asked the teacher if she could go to the bathroom. When she got there, she burst into tears because she could so clearly see her mom shouting for joy and telling everyone. Callie did win prom queen, and she knew her mom was overjoyed for her.

Scott said that Carolyn was somehow equipped with the ability to deal with this disease with the positive attitude she had. While looking back on their life together, he said, “I wouldn’t choose for her to have this disease, but I would never trade those 20 years with Carolyn. I don’t feel sorrow, I just feel happy about the time I had with her. It was a wonderful experience.”