Evan's story, Chapter 8, Elder Faust

Elder Faust

And as Jesus passed by, he saw a man which was blind from his birth.

“And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind?

“Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him.”

John 9, 1-3

   In the Church of Jesus Christ of Latter-day Saints, we have a General Conference every six months in Salt Lake City. Church leaders preach sermons to address any concerns on their minds. In the 1980s, the Church recorded these Conference Talks and made them available on audio-cassette tapes. One of these church leaders was Elder Faust, one of the Twelve Apostles.

   A few weeks before Evan’s birth, Cindy and I went to the Temple to participate in Sealings. This is an ordinance that we perform for deceased couples. Before the Sealer started, he asked if anyone in the group needed a prayer for anything. In answer to his question, we told him that our new baby was going to be born with a crippling birth defect. One of the women told us she had been listening to a Conference Talk given by Elder Faust, in October of 1984. The subject of the talk was on children who had physical and mental disabilities. This woman gave us her tape.

   I vaguely remember he had spoken on the subject, but when he spoke, I didn’t pay much attention. This time, as we listened to Elder Faust preach about the disabled, we paid attention. His message was that they are special children of God and they needed our love. It was just what we needed to hear.

 To read the talk, click here.

   When Evan was two years old, our family went to a Regional Conference in Santa Barbara. This was a big meeting for the Latter-Day Saints in Ventura, Santa Barbara and San Luis Obispo Counties. Thousands of people crowded into the basketball arena at the University of California at Santa Barbara to hear two apostles speak to us. One of the speakers was Elder Faust. I don’t remember what he spoke about that day, but it wasn’t about disabilities. When the Closing Prayer was given, the meeting was over. Many members lined up to shake the hands of the speakers. On the other hand, we were sitting half way up the bleachers at about the half court line. That was too far away to greet them on such a personal level. Wrong.

   Soon after the Closing Prayer, I didn’t see Cindy and Evan. To my surprise, Cindy, while holding Evan, had rushed down the bleachers, maneuvered past thousands of people, and entered the line to greet the Apostles. Soon she was chatting with her favorite member of the Quorum of the Twelve Apostles.

   Cindy told him about Evan and how she had come to listen to his Conference Talk on Disabled Children. She thanked him for this message that had so much meaning to her. He responded that when they give these talks, they never know how they are going to be received. He expressed his gratitude for Cindy’s kind remarks.

   A few months later, our Bishop handed us a surprise. It was a photograph of Cindy, Evan, and Elder Faust. It is still a cherished photo.

 

Evan's Story, Chapter 7, Laughter

Laughter, the Best Medicine

A merry heart doeth good like a medicine,

Proverbs 17-22

   Evan loved to laugh. He laughed easily and he laughed out loud. It was contagious.

   The family’s favorite show to watch was America’s Favorite Home Videos, but only if Evan was watching. The slapstick comedy presented on the television may have made us smile, but Evan would burst out laughing. It was impossible not to laugh with him.

   My kids told me one day, “Dad, you won’t believe how hard Evan laughed at Dennis the Menace. We thought he was going to stop breathing.” This was the movie were Dennis defeats the bad guy. We had rented the VCR tape. Wanting to watch the movie myself, I made sure Evan was in the living room to watch the movie also. His brothers and sisters were neither kidding nor exaggerating. The final scene of this funny movie was of the mean office worker being caught in a copy machine, with hilarious pictures produced. Anyone else would have laughed out loud. Evan laughed so hard, he turned red. He couldn’t breathe. No wonder April once said, “Evan is going to die laughing.”

   As a father, I had always played with my children. They were silly games, such as chase. When Evan was born, David was eleven and too old for those games. But he watched me play with his younger brothers and sisters and was impressed with how much fun we were having. So when Evan was old enough to respond, David became the silliest big brother on the face of the planet. He would get down on the floor and play with Evan. Evan was delighted and spent many hours in laughter.  Today, both David and John are fathers that love to play with their children.

   His good humor was noted by others.  Once, Cindy had taken him to an Easter Seals program called Lekotek. Lekotek is Swedish for “Toy Library.” This toy library had toys that children with various disabilities could play with. On this day, he was standing in braces, playing with a wire controlled police car. He was laughing at the siren, flashing lights, and the quick darting motions of the toy. A local reporter was at the Lekotek center to do a story. She was, of course, totally charmed with Evan. When she wrote the news article about Lekotek, Evan was prominently featured. This was the first time Evan had his name in the newspaper. It would not be the last.

   On Evan’s third birthday, we were camping at Carpenteria State Beach. Cindy and I were cleaning up after lunch, when, to my surprise, a beautiful young woman, about twenty-five years old, dressed in beach attire and a broad smile, walked towards us. Now, I already had a beautiful woman at my side, but only because I chased her. So, understandably, I was confused by the approach of this stranger. She told us she was camping with another family and saw Evan. She introduced herself as a physical therapist and asked if she could work with Evan. I didn’t fully understand her motives until years later. Evan had attended a special camp. The camp director mentioned to us the female counselors wanted to hang around Evan, due to his cheery disposition. She told us that Evan was a “Chick Magnet.”

   When we took Evan back to UCLA for another surgery on his spinal cord, he brought with him his good humor. While he was quickly recovering, he was placed in the same room with a thirteen year old girl who was being treated for cancer. Just before we took Evan home, I overheard this girl talking on the phone to her friend. She was cheerfully describing the antics of the little boy in the next bed. I was amazed that Evan could lighten the heart of a girl in such miserable circumstances. But I really wasn’t surprised.

   As Evan has gotten older, he doesn’t laugh as much at the slapstick type of comedy, but there’s one funny thing he hasn’t out grown laughing at. Me. Yes, Evan just lives to give me a hard time.  He still loves to laugh and it is still contagious.

Evan's story, Chapter 6, Friends in the Community

Friends in the Community

Verily I say, men should be anxiously engaged in a good cause,
and do many things of their own free will, and bring to pass much righteousness.

Doctrine and Covenants 58-27

   Dr. Bravo will always have a special place in our hearts. When Evan came home as a newborn after spending 17 days in the hospital, enduring two surgeries, he was a very medically fragile baby. He had been diagnosed with a rare and life threatening kidney disease. Our pediatrician at the time just didn't seem to have a handle on things. She displayed a bad attitude when Cindy informed her Evan would be born with spina bifida and hydrocephalus. She asked if Cindy understood how serious his condition was. Reading between the lines, Cindy felt the doctor wanted her to terminate the pregnancy. It was time to find another doctor.

   Cindy asked a friend who worked as an OB nurse to recommend a pediatrician. She told her about this young doctor who had saved some babies lives. We made an appointment and Cindy brought our tiny little four week old newborn baby to see Dr. Rene Bravo.

   The first thing he told her was, "I want you to know that I admire you for having this baby!"

 Wow! A doctor who understood that Evan's life was precious to his family!! Dr. Bravo was open and honest and valued Cindy’s opinion and thoughts as a mother. On that first visit he even told her the name of Evan's kidney disease, which other doctors just dismissed as "possible premature kidneys".

   Dr. Bravo is a good Christian family man, a brilliant doctor, and to this day, Cindy, Evan, and I are proud to call him our friend. A few years after he met Evan, he will save his life.

   Around the time Evan was born, Jehovah Witness missionaries introduced us to Donna Straffordson. Her son, Adam, was three years old. He had been born with spina bifida. Donna and Adam visited with us and provided encouragement.  She introduced us to Carla and Roy Mumaw. Their daughter, D’Arcy, was about two years old. They still live in Nipomo and we still consider them friends. D’Arcy and Evan are currently on a power wheelchair soccer team. Donna and Carla were members of the Spina Bifida Association. Through this organization, we met David and Terry Gray and their daughter Jennie. All of these fine people were going through the same trials we were.

   I should say good things about the company I worked for, Pacific Gas and Electric. When Evan was diagnosed, we were in a refueling outage. I was working up to seventy hours per week. I met with the foreman I was working with, Bruce Lewis, and apprised him of my situation. The company was very supportive, allowing me to take off work as required. I was also given light assignments to lessen my stress.

   So, the baby was born. We have a support network in place. We are ready to provide the baby with our undying love and support. But we haven’t heard from Evan yet. We are in for a pleasant surprise.

Evan's story, chapter 5, A Name and a Blessing

A Name and a Blessing

Every member of the church of Christ having children is to bring them unto the elders before the church, who are to lay their hands upon them in name of Jesus Christ, and bless them in his name.

Doctrine and Covenants 20-70

   The Church of Jesus Christ of Latter-day Saints usually sets aside one Sunday of each month for a Fast and Testimony Meeting. Members abstain from food during breakfast and lunch and donate the money they save to a special account to help the needy of the church. During Fast and Testimony meeting, members are allowed to get up and share anything on their minds. This is a superb way we have of sharing our testimonies. Another thing we do is bless new born babies. This is called a christening in many other Christian churches. Fast and Testimony meetings have the potential to be very spiritual events.

   During the first Fast and Testimony Meeting with Evan, it was my privilege to give him a blessing. If done right, the Elder pronouncing the blessing should listen to the Spirit and say what he feels prompted to say. I was going to try my best. It is one thing to give a healthy baby a blessing in front of two hundred people, but it is entirely different to give a blessing to a baby with severe challenges.

   I don’t remember everything I said, but these words I will always remember. Choking back tears, I said, “Evan, you have been born with a handicap. But you have been given more than enough strength to overcome it.”

   I thought at the time, and I still think, those words were the most outrageous words I could have said. Almost twenty-five years later, those who know and love Evan agree that he has overcome spina bifida. True, he is neither running marathons nor earning doctorate degrees, but he is a joy to be around. If anyone has a right to be bitter about his situation in life, Evan does. But he is one of the happiest people I know.

   During this Fast and Testimony Meeting, I told the congregation about my prayer in the Temple and my answer. “I know how you feel,” I quoted, “I felt the same way when my Son died in agony on the cross.”  Bearing this testimony was a very hard thing for me to do. When I was returning to my seat, a flood of self doubt entered my mind. Did I really receive a direct answer from Heavenly Father? What if it was just my imagination? Should I have said what I just said to all of these people? Then these words came into my mind, “Your sins are forgiven.”  With that assurance, I knew everything I said was true.

   In spite of this great gift, I am nobody special. What God has said to me applies to all people who have ever suffered a loss or ever witnessed a love one suffering. Heavenly Father knows how you feel. He felt the same way when his beloved Son suffered on the cross.

Nevertheless, ye are blessed, for the testimony which ye have borne is recorded in heaven for the angels to look upon: and they rejoice over you, and your sins are forgiven you.

Doctrine and Covenants 62, verse 3

Evan's story, chapter 4, Delivery

Delivery

Be patient in afflictions, for thou shalt have many, but endure them, for lo, I am with thee, even unto the end of thy days.

Doctrine and Covenants 24-8

   My mother and I arrived at UCLA at 6:30 am. My brother, Richard, had just arrived. Since I was to be allowed in the operating room, I was instructed to change into the hospital surgical clothes and then wait in the waiting room until called. But at 7:38, a nurse brought me an urgent message.

   The operating team was alarmed by a sudden drop in Evan’s heart rate. The delivery was being performed immediately. They wanted me there as soon as possible. By the time I arrived, Evan was born, and at that moment, I was face to face with my concerns.

   Evan was a tiny baby, at four pounds, eight ounces. He had a full head of dark hair. His face reminded me of John, when he was a newborn. His head was slightly enlarged, the sure sign of hydrocephalus. On his lower back, there was a reddish purplish lump. Nerves were plainly visible through breaks in the skin. This lesion was immediately covered to prevent a fatal infection.

   His weak cry was heart breaking. I had been present at the births of four of my older children. Their cries always seemed to scream, “Why have I been disturbed? I don’t want to be here.” Evans whimper was different, as if to say, “I don’t understand why I’m here. But I hurt. Please help me.” At that time, I almost broke down crying, but I decided to stay strong for Cindy’s sake.

   As the doctors were showing me my newborn son, they pointed out he could move his hips. He could also move one of his ankles. The promise was there that Evan might walk someday. They then said, “Congratulations, Dad, you have a new son.”

   In the New Testament, James 5, verse 14 says, “Is any sick among you? Let him call for the elders of the church: and let them pray over him, anointing him with oil in the name of the Lord.” As an Elder in the Church of Jesus Christ of Latter-day Saints, it was my privilege to perform this ordinance for Evan. Giving a sick or hurt person a blessing is a spiritual challenge. You can’t just say what you want to say, you have to listen to the Spirit. Afterwards, self-doubt can enter into your heart. “How do you know what you just said is not the result of a frenzied mind?”

   As the nurse took Evan to the neo natal intensive care unit (NICU), I asked the nurse if I could give him a blessing. “Sure,” she replied, “We do that all the time. But please give me ten minutes.” My mother, brother and I spent those ten minutes praying.

   Richard anointed Evan with consecrated oil. I then pronounced the most important and most powerful blessing I had ever given. I commanded his body to heal well, that his recovery would be deemed to be excellent by the surgeons. I then felt prompted to say “Evan, you have a purpose to accomplish in this life. You will not be taken back until you have accomplished it.” That was my first promise that Evan was not going to die very soon. With that, my optimism and confidence was strong.

   By 11 am, my youngest son was in the operating room. The spinal cord was placed more or less where it belonged and the lesion was surgically closed. To address the hydrocephalus, a temporary system was installed to drain excess fluids. The doctors told us the surgery went well.

   For the next few days, his back healed well. The major concern was the hydrocephalus. Hydrocephalus, or water on the brain, is very serious.

   Forty years prior to Evan’s birth, medical science had developed a treatment. One end of plastic tube, called a “shunt,” is inserted into the brain. It is then inserted under the skin into the abdominal cavity. The spinal fluid is absorbed. When this works, the patient’s brain is protected. Prior to this life saving advancement, babies born with this problem always died a painful death.

   For the next few days, excess spinal fluid would be removed from a temporary reservoir on top of his head. His head would swell and he would get tense and grouchy. A nurse would insert a needle and remove the fluid. His head would shrink and he would relax, as if relieved from a pain. I watched this process several times.

   While I visited Evan in the NICU, Evan responded to my voice more than the voices of any of the nurses. We all used the same tone of voice, saying the same things, but the difference in his response was truly remarkable. I shared my observation with one of the nurses. She said, “Yes, we see that every time. The babies recognize their parents’ voices.”

   After a few days, they finally gave Evan his shunt. But after this second surgery, the poor child was hungry, but could not eat until the next day. Cindy and I managed to comfort him. I told him that the worse will be over soon. I was right. He ate very well the next morning and he seemed relaxed.

   Meanwhile, Cindy and I were exhausted. At the urging of the doctors and nurses, we returned home for a few days of rest. When we went back to UCLA, we really wanted to bring Evan back. After a few more days of ups and downs, Evan was discharged.

   However, before we left, a new group of doctors had a sobering conversation with us. They were kidney specialists. Without telling us the name of the condition, they explained that parts of the kidneys were not functioning properly. They explained that everybody’s blood has a certain amount of sodium and a certain amount of potassium. If the potassium is too low, his heart would not work well. If his potassium level was too high, his heart would go into fibrillation. If that happened, nothing could be done. Evan’s potassium level was elevated. We would have to carefully monitor this threat. That would mean frequent pokes with a needle to draw a blood sample. Later, we would learn the name, “Renal Tubular Acidosis, Type 4.” RTA type 4 is very rare. Most doctors have never heard of it.

   Never the less, it was still a joyous day when we brought Evan home.  

Mike and Evan