Evan's Story, chaper 22, service in the Priesthood

Service in the Priesthood

Every elder, priest, teacher, or deacon is to be ordained according to the gifts and callings of God unto him.

Doctrine and Covenants 20-60

   In the Church of Jesus Christ of Latter-day Saints, young men may be ordained into the Aaronic Priesthood when they are twelve years of age. This priesthood takes its name from Aaron, the brother of Moses. The most visible function for these young men is to bless and pass the Sacrament. When Evan was twelve, it was his desire to be given this Priesthood. It was my privilege of ordaining him a Deacon in the Aaronic Priesthood.

    He had a rough start. His first duty was to help pass the Sacrament. The Deacon Quorum advisers and the other young men practiced with Evan and everyone thought he was ready. His task was to carry a tray of broken bread to the congregation. There is usually five boys assigned this task. Evan was supposed to take his tray to the church pews furthest from their starting point. While Evan balanced the tray on his lap, he quickly wheeled forward, but the tray tumbled from his lap, spilling the sacrament bread. One of the counselors in the Bishopric, Paul Jarvis, quietly picked up the pieces. Later, he said some kind words from the pulpit.

   Subsequently, someone would push Evan while he held on to the sacrament tray. In retrospect, I suppose it was better that way. It provided an opportunity for someone to be of service. He performed this duty faithfully for the next two years whenever his health allowed.

   At fourteen, I ordained him a Teacher. The Teacher’s duty, concerning the Sacrament, is to prepare it. That is, the trays are set out, the bread has been delivered, and the individual sacrament cups have been filled with water. To the best of his ability, he assisted the other Teachers in preparing the Sacrament.

   As a Teacher, he was also able to accompany me when I visited other members as a Home Teacher, that is, he was now my junior companion. It is the Duty of each Home Teacher to visit his assigned families at least once a month. We bring a spiritual message and see how the family is doing. Evan, being the quiet one, doesn’t usually say much during these visits, but he does bring a spirit with him. Besides, everyone loves Evan.

   When Evan was sixteen years old, I ordained him a Priest. Now he could perform other duties. A Priest can baptize new members. But since we perform baptism by immersion, this is one task Evan has not been able to perform. A Priest can say the Sacrament prayers for the bread and water. In the LDS religion, these are the symbols we use for the body and blood of Christ. Evan’s strong point is that he can read fairly well. Therefore, this was one Priesthood duty he was able to do. All we had to do was provide a card with the designated prayers and a microphone. But we provide these things for every Priest who is blessing the Sacrament.

   Evan loved blessing the Sacrament. He did this every Sunday for the next four years. He usually blessed the bread. He even had the prayer memorized.

   As Evan grew older, it was time to let other young men perform this duty. We also ordained Evan into the Melchizedek Priesthood. This Priesthood takes its name from a High Priest who lived at the same time as Abraham. As an Elder in the Melchizedek Priesthood, Evan is able to perform other duties. He can help confirm new members after baptism. He can assist in giving Priesthood blessings to sick or otherwise afflicted members. When a baby is given a name and a blessing, he can be a part of the circle. Evan has done all of these.

Mike, David, Spencer, John, and Evan on the way to Priesthood Meeting

   Usually, when a man is ordained an Elder, it is time to think about serving a full time mission. Because of his limitations, Evan is not serving a mission, or is he? Because of his spiritual influence, most of the other young men he grew up with served honorable missions. By the way, that’s our former Bishop, Bishop Nielsen’s opinion. Evan may not have an encyclopedic knowledge, but pertaining to the Gospel, he knows enough. He knows Right from Wrong and he always avoids Wrong. In the community, he’s always willing to tell people he is a Mormon.

   While attending his adult day program, Evan mentioned that he was a member to a new worker. She was a struggling single mother, a member of the LDS church, who wasn’t attending. Evan invited her back to church. Even when she didn’t start attending right away, Evan was still a shining beacon for her.

   One night, several ward members were at a beach bonfire. A girl that we didn’t know came up to Cindy and introduced herself as this woman’s daughter. Evan had invited her family to the beach bonfire, and they just needed a little more encouragement to join. Introductions were made, and soon, new friendships were formed. The family started to attend again and her son was baptized. She was very grateful for Evan’s efforts to bring her back into the fold.

Evan's Story, Chapter 21, A Lingering Threat

A Lingering Threat

Yet man is born into trouble, as the sparks fly upward.

I would seek unto God, and unto God would I commit my cause:

Job 5, verses 7-8

   Our excitement for Evan’s increased stamina was bolstered by an incredible increase in his appetite. As a young child, his appetite was poor. When he turned thirteen, he only weighed 46 pounds. There was now a complete reversal of his appetite problem. Evan was eating like a teenager.

   This excitement was tempered by a harsh reality. Evan’s kidneys were still not working well. If anything, his kidneys were degenerating. The renal tubular acidosis (RTA) was not the only problem. The Nephrocalcinosis never went away. If anything, it seemed worse. We had unpleasant questions for the nephrologists. Why are the kidneys getting worse now? Is he a candidate for a kidney transplant? Are we only putting off the inevitable? The thought of losing Evan after the extended agony of the spinal fusion operation was depressing.

   The answers didn’t help much. “No one knows why his kidneys are so bad. No, he is not, nor ever will be, a candidate for a transplant. He has far too many health issues. But we will follow Evan’s condition through blood tests and renal ultrasounds.”

   After a few years, it appeared his RTA may have been diminishing. Less medicine was being prescribed. Then another dragon reared its ugly head. Evan was having kidney stones, which would suggest something else was wrong. One possible explanation was provided by an ultrasound. The ultrasound seemed to detect a condition called “hydronephrosis.”

   Hydronephrosis, according to Wikipedia, is literally "water inside the kidney.” “It is caused by some obstruction that prevents urine from leaving the kidney. Blocking the flow of urine will commonly result in urinary tract infections which can lead to the development of additional stones, fever, and blood or pus in the urine. If complete obstruction occurs, kidney failure may follow.” 

   This threat to his life was supposed to have been eliminated by the bladder surgery when he was eighteen months old. But if the obstruction was internal to the kidney, hydronephrosis was a real threat again. By the way, Evan had a history of urinary tract infections.

   In late November of 2004, Evan submitted to another endless round of blood tests and a renal ultrasound. The results were sent to Lucille Packard Hospital’s Dr. Yorgin. In early December, Evan, Cindy, and I were in Dr. Yorgin’s office, ready to discuss all of these kidney problems.

   The first thing he told us was, “The ultrasound shows a cyst on the left kidney. It is harmless, but sometimes may be mistaken for hydronephrosis. There is no other indication of hydronephrosis.”

   “Wow,” I said, “That’s one less thing for us to worry about.”

   “That’s right,” he replied.

   At this moment, I noticed something strange. He was smiling. In seventeen years of talking with nephrologists, they never smiled. They were always delivering sobering facts. For a second, I wondered if he was being condescending to me for my remark. No, he was actually being very respectful. He was smiling because he had more good news.

   “There is no longer any indication of Nephrocalcinosis in either kidney. Also, the lab report states that there is normal kidney function.”

   I was incredulous. I read the report myself. “Normal kidney function?” No. This is Evan were talking about. He’s seventeen years old, born with a kidney disease. The phrase “normal kidney function” has NEVER appeared in any lab report with Evan’s name on it.

   At the time, Evan was taking two medications for his kidney problem. One medicine, initialed HCTZ, doubled as a treatment for high blood pressure. The other medicine, Bicitra, is a particularly disgusting liquid concoction. Rancid lemon juice may taste better.

   Dr. Yorgin continued, “It’s possible he doesn’t have RTA anymore. Let’s cut back on the Bicitra and check again. If his lab work is okay, we can stop the Bicitra altogether.”

   “By the way,” he added, “The mild urinary tract infection is just Evan. If he isn’t otherwise sick with a fever, there’s no problem.”

   Dr. Yorgin was still cheerful as the appointment came to an end. Cindy and I were in an “I can’t believe what we just heard” mood. As we were driving home, the message started to sink in. But there must be some mistake. Evan’s nephrologist is supposed to look us in the eye and state, “Elevated potassium levels are dangerous.” He or she is supposed to call and demand that we rush Evan to the hospital. We should be warned that if his heart goes into fibrillation, nothing could be done.

   Cindy updated Dr. Bravo by E-mail. This good man replied, “Wow, what great news!!! I do believe in divine miracles…Evan is one!!!”

   Evan hasn’t taken that awful Bicitra since January 2005.

   At this time, reality was changing for Cindy and me. It was growing more likely that Evan would outlive us.

Which doeth great things and unsearchable;
marvelous things without number.

Job 5-9

Evan's story, Chapter 20, Back Brace Bash

Back Brace Bash

Be glad in the Lord, and rejoice, ye righteous: and shout for joy.

Psalm 32-11

   Evan had survived a terrible ordeal and it would take him awhile to fully recover. But if we would have known at the time how much better Evan would be, our spirits would have soared.

   Two months after his homecoming, we went to the Bob Jones Bike Trail. Six months prior to this, Evan could only roll himself from the start of the trail to where it crossed San Luis Drive before he was too fatigued. On this day, Evan was able to roll himself past San Luis Drive, past the Country club complex and along the creek, and back again, without assistance. In other words, he was able to push himself four times farther than before. It was both exciting and sobering. It was a sign that Evan really did need that dreaded spinal fusion and that it was successful. 

   Evan was looking ahead. His first order of business was to throw a party he called his Back Brace Bash. This is much better than smashing a piñata. He had a back brace he wore before the surgery and one he had to wear during his recovery. Both were going to be smashed, crushed, mangled and tossed in the trash. He invited all of his friends and relatives.

   Evan looked on with delight as David smashed the braces with an axe. But they were built tough. His big brother finally used a saw to destroy the dreadful and stupid braces. In front of a cheering crowd, Evan finally tossed the braces in the trash. After all, that’s where they belonged.

Take that, stupid back brace!

 

Evan's story, chapter 19...continued

   Evan was still facing a long and painful recovery with a myriad of complications. He had bad reactions to medication, an intestinal blockage, anemia, a yeast infection in his esophagus, seizures, and an inability to eat. The latter problem required an intravenous feeding tube.

   Cindy was there almost the whole time. In her journal, dated July 28^th, she shares her thoughts with Evan.

The days blur together, sitting here in the hospital.

Why aren’t we home yet?

I wonder if we are losing you.

For the first time ever I sense discouragement in you.

I know this surgery has been hard on you, much harder than you expected.

I’m sorry I didn’t prepare you better. Would that have been possible?

Things happened that I didn’t even expect.

You are so brave, even though your physical body betrays you.

Your spirit must be so strong.

What glories lie ahead for you?

I hope I don’t hold you here longer than need be.

You have a perfect body waiting.

   Evan began to doubt he was ever going to recover. I was at his bedside one night when he told Cindy, “Thank you for giving birth to me.”  The poor child didn’t think he was going to live any longer and he was thanking his mother for not having an abortion.

   I was coming and going between home and the hospital. A couple of times, I brought Rachel and April with me. On one such visit, I told Cindy to go home.

   “No,” she objected, “I can’t leave.”

   “Go home,” I insisted. I knew she needed a break. I remembered the father of the cancer patient at UCLA gave his wife a needed break. It was my turn to give my wife a break. She cried all the way home. When she returned, she brought Katie with her. And she admitted she needed the break.

   Having all three of the girls there lifted Cindy’s and Evan’s spirits. David, Sariah and Spencer also paid a surprise visit. During this rough time, Donald Nielsen, our Home Teacher, dropped in for a visit. He was in the San Jose area on business and took the time to visit Evan. Cindy was very appreciative.

   Finally, on August 22, 2000, five days before his 13^th birthday, Evan was home. He still had a feeding tube, but that soon went away. His real recovery could now start.

   I want to close this sad chapter with my favorite line from all of scripture.

“…and even there shall not so much as a hair of their heads be lost; but everything shall be restored to its perfect frame…”

Alma 11-44

Evan's Story, chapter 19, a Terrible Untwisting

A Terrible Untwisting

But put forth thine hand now, and touch his bone and his flesh, and he will curse thee to thy face.

   Job 2-5

   July 12, 2000, was a play day. We went to the Six Flags theme park in Santa Clara. Evan especially loved the water ride. It was hot, and getting wet was fun. For a few hours, we were able to forget we were going to ruin the rest of his summer vacation. Ironically, Evan was still looking forward to throwing away his hated back brace.

   I had been dreading the next day, July 13. This was the day of Evan’s spinal fusion surgery. The surgery would be performed at Lucille Packard’s Children Hospital, a four hour drive from home. The doctors would start early in the morning. They would take twelve hours. If all went well, Evan would be home in three weeks. The day of the surgery was as bad as I feared. The recovery was much worse.

   The union representing the nurses was on strike. The hospital was staffed by a mix of nurses willing to cross the picket line and temporary nurses brought in throughout the country. Evan was going to pay a price for his audacity to require life saving surgery during their stupid labor dispute.

   We brought Evan in to the hospital very early in the morning. While he was being prepared for the surgery, Dr. Rinsky talked to us. We were instructed to stay in contact during the surgery. He would give us status updates throughout the day. Our little boy was then wheeled away from us. We were in for a long, excruciating wait.

   There weren’t many status updates. Dr. Rinsky addressed us once in the early afternoon. He bemoaned the fact that Evan’s bones were softer than normal. This was presenting challenges to the surgical team. Eventually, we were told the surgery was complete and he was being taken to the recovery room.

   Evan’s little body was so swollen, we hardly recognized him. When he regained consciousness, he said, “I’m crooked.” No, Evan, you were crooked. You are almost straight now. The doctors told us that Evan’s reaction was very common to scoliosis correction surgery. Evan spent three days in the Pediatric Intensive Care Unit and then was moved to another hospital room.

   The hospital rooms at Lucille Packard have beds for a parent to sleep in. This arrangement allows a mother or father to comfort a sick or injured child around the clock. Cindy promptly settled in for the long haul. I could stay in a nearby facility called the Ronald McDonald house.

   Monday, July 17^th, proved to be the worst of the worse. It was obvious to us the temporary nurse was unfamiliar with a very important piece of equipment. This equipment was used to administer pain medication to Evan in just the right amount to control his pain. In mid afternoon, she totally botched it. Evan’s level of pain increased, but he did NOT cry out. However, his body tensed and his blood pressure and heart rate increased dramatically. We yelled at the nurses that something was wrong. Other nurses were called to help. Evan suffered for hours before his pain was brought under control. 

   By the time I left the hospital room that night, I was livid with anger. I went to the lead Nurses Supervisor and gave her a blast. “You need to train your temporary nurses better!” I bitterly complained. I told her exactly what happened to my son. 

  When I arrived in my room, I directed my angry cries at God. My thoughts were on the promise made to me that my tears of joy would wash away my tears of grief. This was a very thin thread to hang on to. “That joy better be strong enough for this!” I complained.

   “It will be,” was the soft reply.

  

“He lives to comfort me when faint; 

He lives to hear my soul’s complaint”

Hymn 136, I Know That My Redeemer Lives.  Samuel Medley