SCA7 Through My Eyes

“Let your heart be not faint, Now the journey’s begun; There is One who still beckons to you. So look upward in joy, And take hold of his hand; He will lead you to heights that are new–”  –Does the Journey Seem Long, Joseph Fielding Smith

I left off with my grandpa Paul’s story…he and his family were living in Nebraska, and he just permanently lost his voice. Going back a bit in time, before they moved to Nebraska, they were living in Alabama.

Their youngest daughter Chris was a year old. My grandma began to notice that something was not right. Chris’ physical abilities seemed to be declining. They had a baby chair that helped her to stand and walk, and she had been able to walk in this chair. Then it started to get harder for her to do it, until she couldn’t do it anymore. She also lost her ability to sit up. With these worries my grandma took Chris to the doctor. The doctor said that she was just slow developing; she was what they called a “floppy Baby.”

Shortly after this they moved to Nebraska, and my grandparents’ worries increased since Chris’ abilities were continuing to decline. They took her to a neurologist.  After examining her, the doctor told them the grim news. He said that she had a neurological disease that would cause her abilities to continue to decline until death. He said that she would hold onto life for as long as she could and then maybe die of pneumonia. This was devastating news to my grandparents.

In the hallway of the doctor’s office my grandparents held Chris tightly in their arms together and wept. They never thought something as horrible as this could happen to them. It hurt so bad!

My grandparents did not realize that Chris’ neurological disease was the same as her father’s. The symptoms seemed very different and she was so young, so no connection was make.

Chris continued to decline rapidly. She started having a hard time swallowing her food. She began to loose weight until she could no longer swallow. They put a feeding tube into her stomach, and my grandma would feed her a special formula through the tube. She began to gain weight and became stronger.

She started having seizures. One time while at the doctor’s office, she had another one of her seizures, and the doctor said that her heart had stopped for a minute. Then on another day when my grandma was feeding Chris her formula, she stiffened up and began to shake. She was having a seizure again, but this time she remained unconscious when it was over. My grandma pushed on her chest, over her heart, a couple times, and she came to.

The next day she had a seizure again, and afterwards, she again remained unconscious. My grandma began pushing on her chest, but this time she wold not come to. She rushed to the neighbor who was a nurse and called 911. The ambulance came and took them to the Air Force Base hospital. Chris never came back to life in the ambulance, and she was pronounced dead when she got to the hospital. She was a couple weeks shy of being two years old.

The neighbor had called Paul, and he met them at the hospital. My grandma told him that Chris had died. He wanted to see her. He went into the room where her body lay and sat with her. This was a very difficult time.

A viewing was held at the mortuary in Bellevue, Nebraska, and then the family flew to Salt Lake City, Utah with the casket. They had another viewing at the Wasatch Lawn funeral home. A graveside service was held, and Eldred G Smith, the patriarch of The Church of Jesus Christ of Latter-Day Saints, spoke at the service. He is my great grandpa’s cousin.

When I was in collage, I interviewed my grandma about her stories from this disease. When she told me about Chris’ death, she buried her face in her hands and just sobbed. It had been over 40 years since her death, but the pain of it was still so strong. I cried with her.

Here are some of her words, “It was really hard for me to lose Chris. The Lord really did bless me. He helped me to feel peace and to feel better about her death. He helped me to go on.”

“These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world.”

John 16:33

 

 

After Chris’ death, my grandparents had their sixth child. It was a boy! After five girls, this was a very big deal! My overjoyed grandpa called his daughters on the phone and enthusiastically told them the news. In all of the excitement, a nurse asked my grandpa if Don was their first child.”No, he is just our first boy!”

My grandpa was especially thrilled to have a son. Behind their home there was a football field. He would take Don into the backyard, and they would watch the games together. Not only was he highly adored, but he was a beautiful baby too. A friend at church told my grandma that Don was the most beautiful baby she had ever seen.  My grandma said that just like Chris, Don was such a sweet baby-a sweet little angel.

His six week check up is when my grandparents began to see his decline. After loosing Chris this was particularly poignant. And just like with Chris, they would initially not make the connection that this was the same disease. First the doctor discovered that he was blind. My grandma had noticed that there was something wrong with his eyesight because his eyes never focused on things. However, what worried the doctor the most was his heart. A valve did not shut off completely at birth. This was causing some other problems too. The doctor said that sometimes this problem corrects itself as the child grows. This was hopeful news.

Thanksgiving was coming up, and my grandparents had planned a family trip to Salt Lake City to spend the holiday with their families. As they were driving, Don started having problems breathing. He cried and cried and cried. At Colorado Springs they took him to the Air Force Academy Hospital where they stayed the night. He was having serious heart problems. The doctors there told them that the doctors in Salt Lake City were very good, so they should just keep driving.

They anxiously drove and prayed the entire time that Don would make it! They arrived, and my grandpa rushed Don to Primary Children’s Hospital. They immediately operated on his heart and fixed the valve that had not closed. By this time his heart had enlarged, since it had to do so much extra work. They kept him in the intensive care unit while he recovered. The nurses all called him “handsome.”

My grandpa had to go back to work and the girls had school, so they all went back home except for my grandma and their youngest daughter Carolyn who stayed with Don. They stayed with my grandma’s mother who lived there in town. Don was released from intensive care, but he was still not doing too well. He was in and out of the hospital. He was having a hard time breathing.  After a month, they decided it was time to go back home.  They got tickets to ride the train back to Nebraska. My grandma’s mother went with them. They worried about Don the entire trip. This must have been an especially hard and anxious time for my grandma.

Don was having problems as soon as they got home, so they rushed him to the Air Force Base Hospital. He was put on oxygen, but he continued to decline. At one point he had stopped breathing, and they had to revive him. He would never leave a hospital for the rest of his life.  On a Sunday afternoon my grandma went to be with Don while the rest of the family went to church. As she sat with him, she knew he was dying and was not getting better. She could’t even get him to respond anymore. Later, my grandpa walked into the room, and she told him this. My grandpa desperately told the nurse that Don needed more help!

They called a Doctor from the University of Omaha Hospital, and Don was transferred there. He was getting more help at this hospital, but there was little they could do. My grandparents sensed that they were losing Don, and they tried to be with him as much as possible. They had work and their girls to care for, so they couldn’t be with him as much as they would have liked.

This was an especially hard time for my grandpa. He adored his son. Despite these hard circumstances, his spirit remained bright and full of faith. He would go to visit Don on his lunch breaks. A friend had gone to the hospital during one of my grandpa’s visits. He said that he went to help and comfort my grandpa, and instead my grandpa cheered him up. Another time at church my grandpa bore a powerful testimony. Those who knew him knew he was bearing his testimony to Don. It was such a powerful testimony that their friends remembered it many years later.

Don continued to decline. They were unable to hold him because of his oxygen, so they would pat and rub his arms and head. He was not eating much. One evening after returning home from the hospital, they got a call that they needed to come back. Just after they retuned, Don passed away. He was 6 months old.

The family (along with Don’s body) flew to Salt Lake City for a viewing and graveside service. He was buried next to his sister Chris. Eldred G. Smith also spoke at Don’s service. They were buried at the Wasatch Memorial Cemetery.

Again, after my grandma told me Don’s story she wept. It was so sad to see this pain that my grandma will always carry with her.

Here are her words: “Paul and I were blessed. The Lord blessed us with a peace of mind. We always had a strong testimony of the Plan of Salvation. It was sad to lose Chris and Don, but we knew we would see them again and be with them again as a family. It strengthened our testimonies to have this happen to us. I am thankful for these experinces.”

Chris and Don definitely had a large impact on their four older sisters, although they were  young. At Don’s viewing, my mom, Cindee, cried and cried while she looked at her baby brother’s body. The faith of their parents really helped them. My grandma said that they knew Chris and Don were with their Heavenly Father and that they were wonderfully happy. With this eternal perspective, they knew everything was going to be ok.

Along with her sisters, my mom kept this eternal perspective throughout her life. It definitely helped her as she continued to face the trials of this disease. This eternal perspective was so strong in my mom, and has greatly influenced me! It has helped me to realize that it is not so much about the things that happen to us in this life than it is about preparing for the next.

I am very grateful for the knowledge that Chris and Don are wonderfully happy and they are now reunited with most of their family. I wish I could see the joyous reunion that is still to come with their oldest sister Caren and with their beloved mother! What a sight that will be!

 

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