This is the second of a series of posts with the goal to not only provide a brief update on Drew and our family, but also to share some of the things that I have learned along the way during our journey and ongoing battle with F.I.R.E.S.
Monday, July 2, 2018, 6:40 PM
”Seizure coming,” Drew yelled.
”Oh, you’ve got to be kidding,” I muttered. “He’s only a few minutes from taking his meds….”
Our family was 12 miles into the 13-mile drive up Little Cottonwood Canyon to the Cecret Lake trailhead at the Alta Ski Resort. As part of an extended family home evening hike with some of our friends and neighbors, we were nearly to our destination, winding along the Albion Basin Road toward the parking lot next to the campground there.
”Are you sure, Bud?” I asked as I quickly glanced at Drew who was riding shotgun in the front passenger seat of the car, his head resting back and his eyes closed.
”Yes,” he nodded. “I hear the song in my left ear.”
”What are we going to do?” His mother asked from the middle row of seats. “We’re miles from any help….”
”At this point, we’re almost to the parking lot.” I could see the parking lot about 500 yards up ahead of us. “Get his rescue medicines ready just in case. Can someone time the seizure?”
”I’m ready,” Drew’s older sister said from behind me as she leaned forward with her phone in hand.
”Did it start yet, Bud?” I asked.
”Not yet,…” he answered.
”Maybe you could tip your seat halfway back?” I asked as I navigated along the bumpy, dirt road. I worried that if he were to lose consciousness, the seat belt would not be enough to keep him from flopping forward into the dashboard.
Drew felt with his hand for the lever, and just as he reclined the seat back, Drew’s left cheek started twitching and the spasm progressively grew to include the left side of his neck and left shoulder. His head slowly rotated up and to the left. His eyes were rolled up. Saliva dripped from the left corner of his mouth and onto the headrest. His mother reached forward to help steady him as I continued on the winding road.
Once I was able to pull into the parking lot and swing into an empty space, I asked, “How long has it been?”
”About 90 seconds,” his sister reported.
I turned the car off and then turned to see the spasms starting to subside in both frequency and intensity, but his ears and lips were tinged with blue as he struggled to breathe.
”Take some deep breaths,” I said. “Come one, Bud, you need to breathe.”
At this point, the spasms had stopped and he was looking at me, but he still could not speak, and I could hear him wheezing as he tried to force his muscles to take air into his lungs.
Slowly, gradually, his body relaxed and finally he gasped. He closed his eyes again and concentrated on breathing as the normal color returned to his face.
Another moment or two passed as the storm subsided. “Do you think you can take your meds still?”
Drew nodded, still not quite able to speak, but breathing.
”Maybe Drew better not go on the hike?” His mother asked, grave concern on her face as she slowly returned the rescue medicine to her purse. “I can stay here with him.”
Drew sharply turned his head and glared at his mother, clearly not happy that she would even suggest such a boring thing.
”You think you can still go on the hike?” I asked him.
Drew nodded and hoarsely croaked, “Of course.” With that, he pulled the lever and returned his seat to upright. He then grabbed his water bottle in one hand as he reached his other hand toward me, asking for his evening meds.
”Are you sure?” His sister asked. “Maybe you better rest?”
After swallowing his handful of pills and chugging his water bottle, I helped him with his two shots in his stomach. Then, before anyone else could suggest anything different, he opened the car door and jumped out.
As he walked toward the group of neighbors and friends preparing to embark up the trailhead, he yawned several times and I could see the look of concern still on his mother’s face.
”Are you sure you’re up for this?” I asked one more time as I put my arm around his shoulders.
”Let’s go,” he said, and I had a hard time keeping up with him all the way up to the lake.
Cecret Lake — July 2, 2018
Not a day goes by when the “why” questions don’t start creeping into my thoughts. Why did this happen to Drew? Why was Drew able to survive when others have not been so fortunate? Why does he have to continue to have seizures? Why did our family have to go through this trial? Why…? Why…?
Although natural and understandable to ask, I try to push these questions out of my mind as quickly as possible. Answers to these types of questions will most likely never come in this life. We have been tasked in mortality with walking by faith and putting our trust in the Lord — no matter the outcome. The Lord has said, “My ways [are] higher than your ways, and my thoughts than your thoughts” (Isa. 55:9). As the Son’s will was “swallowed up in the will of the Father” (Mosiah 15:7), so must ours be.
Although these types of questions will come, they serve no purpose other than to distract us from the things that we can truly control. The “why” questions only lead to anxiety and sadness rather than the peace and comfort we desire. Elder Lance B. Wickham summarized this challenge wonderfully when he said, “I believe that mortality’s supreme test is to face the “why” and then let it go, trusting humbly in the Lord’s promise that “all things must come to pass in their time” (D&C 64:32).”
snowball fight in July, snow field above Cecret Lake — July 2, 2018
Thursday, September 20, 2018, 5:20 PM
”You excited?” I asked.
”Yeah, this should be fun,” Drew nodded.
We were on our way to the Taylorsville LDS Institute building on the Salt Lake Community College campus for Drew’s first night of classes.
”You feeling OK?” I asked him as we waited at a stoplight.
”Yeah, I took a nap this afternoon and I’m all caught up on my water,” he explained.
”That’s great,” I said as the light turned green. “Ugh, why didn’t we get a turn arrow? We’re going to be late.” We were headed the opposite direction of the rush hour commute, but the oncoming traffic was bumper to bumper, so I figured I would have to wait for the light to change to yellow and then I could catch a break in the line of cars.
”Come on, Dad, punch it.”
”Yeah, right,….” We both laughed. I knew he wasn’t serious, but that certainly would not have been the case when he first came home from the hospital nearly one year ago.
”Did you forget anything?”
”No,” Drew said as he grabbed his backpack from the back seat and plopped it down on his lap. He zipped open the top and peered inside. “I’ve got my laptop, some paper, pens, water bottle….”
”Seizure meds?” I asked.
“Mom put them in the cooler with some dinner.”
”Oh, that’s right,” I smiled. I knew but wanted to test his memory. “We’ll have to find a place to do your shots after your Mission Prep class is over and before you go to your choir class. We should have at least a few minutes between classes.”
“Yeah, sure,” Drew shrugged.
Drew had registered for three classes, all of which would meet every Thursday: Mission Prep, Choir, and BYUI Pathways. Because of the distance from our home to the SLCC campus, I planned to stay at the school to help him with his evening shots and to be ready with his rescue medicines in the event he had any prolonged or clustered seizures. As we neared the campus, I signaled to turn into the parking lot, which was still relatively full at this time of day.
”Oh, I nearly forgot,… what do you think you’ll do if you happen to have a seizure in class tonight?”
Drew thought for a moment, and then said, “Tell my teacher?”
”Why would you do that? He can’t really help you.” I paused a moment and then added, “but it would probably be good to warn him ahead of time so he doesn’t get worried.”
”Should I tell my classmates?”
”Same thing,” I answered. “Not much they can really do to help you, but maybe warn them ahead of time so they don’t freak out. Do you really want everyone to see you have a seizure?”
”Well, no,” he answered. “But I can’t help it when I do.”
”I know that, but what if you know a seizure’s coming and you had time? Maybe you could sit in the back of the room and step into the hallway if you feel one coming?”
”Yeah, I guess I could do that,” he nodded.
”Remember, I’ll be outside the classroom, so I can watch if you have a problem and be ready to help,” I said as I pulled into a parking stall and turned the car off. “I can time any seizures and have the rescue meds ready just in case.”
”Yeah, OK,” he said as he reached for the door handle.
”It’s 5:30, you better hustle and get in there. Why don’t you go first and see if you can find the classroom? I’ll come help in a few minutes if you have trouble.”
”Thanks, Dad.”
Drew leaped from the car, swung his backpack over his shoulder, and then jogged toward the entrance.
Happy to report that on this night, Drew’s first night of college, no seizures — just a big smile on his face all the way home.
I want so much for him to experience college without one of his parents standing watch, but we know it wouldn’t be safe to turn him completely loose yet when he continues to have 2 to 4 seizures per week. Plus with his nystagmus (bouncy eyes), I worry about him finding the classrooms and taking notes. After much debate regarding the appropriate balance between safety and freedom, we came up with a plan somewhere in the middle: I plan to stay away as much as possible, but he knows he can find me at the end of the hall when he needs help.
cooling off by the lower falls, Mount Timpanogos Trail from Aspen Grove — July 23, 2018
In the book of Daniel in the Old Testament, we read the story of three brave young men named Shadrach, Meshach, and Abednego, who were given an ominous choice: either bow down and worship King Nebuchadnezzar’s golden idol, or get tossed into a fiery furnace. Incredulously, the young men held fast to their faith in the living God as they boldly refused to worship the idol.
After Shadrach, Meshach, and Abednego were condemned to death by fire, King Nebuchadnezzar commanded that the furnace be heated to seven times its normal strength. The heat was so intense and powerful that the guards were consumed by the flames as they threw the three young men into the flames. Miraculously, Shadrach, Meshach, and Abednego were not harmed and the people marveled as the three young men emerged from the fiery furnace with not a hair of their heads singed, their coats were not burned, and they didn’t even smell like smoke.
However, to me the most amazing aspect of this story is not the furnace, but rather, what Shadrach, Meshach, and Abednego declared to King Nebuchadnezzar before being thrown into the fire. Daniel 3:17-18 reads:
“Our God whom we serve is able to deliver us from the burning fiery furnace, and he will deliver us out of thine hand, O king.
But if not, be it known unto thee, O king, that we will not serve thy gods, nor worship the golden image which thou hast set up.”
Shadrach, Meshach, and Abednego seem to be saying that even if God, for His own reasons, does not intervene to save them, they will still not question or doubt His power and goodness. Their trust in God is unequivocal. They hope for a miraculous outcome, but their faith is not dependent on the outcome of this trial — their faith will remain unshaken either way. They likely developed faith over a lifetime of prayer, study, and obedience, and their trust is based on a sure foundation. Trust like that is not easy. Faith is not the power to bend God’s will to ours, but rather the power to align our will with that of Heavenly Father.
Lesson #4 I learned from F.I.R.E.S. Is that no matter our trials, we must move forward with absolute trust in our Heavenly Father’s will, with a faith that remains unshaken regardless of the outcome, just as Shadrach, Meshach, and Abednego. We may hope and pray for relief or healing, but if not — if the outcome we desire isn’t realized — then know that God has something greater in store for us.
“Our God will deliver us from sickness and disease, but if not…. we will still trust in the Lord.”
“Our God will deliver us from death or disability, but if not…. we will still trust in the Lord.”
Our God will deliver us from seizures this day, but if not, … we will still trust in the Lord.”
Top 5 Lesson I Have Learned from F.I.R.E.S.:
Lesson #5. ***
Lesson #4. “But if not….”
Lesson #3. ***
Lesson #2. “Don’t ever lose hope.”
Lesson #1. ***
Lower Falls, Mount Timpanogos Trail from Aspen Grove — July 23, 2018
© Copyright 2018 Jeff, All rights Reserved. Written For: Jeffrey Olsen
Jeff, I enjoy reading your blog posts. My adult daughter has epilepsy which is not controlled, so I relate to the seizure stories and the need to let your son live his life, but the worry about the continued seizures. My daughter has an Empatica Embrace seizure detection smart watch. This device has given us as parents a small bit of balance between independence and safety. I am not sure if this would help Drew and your family. Just thought I would share. If you have not heard of it already, the website is Empatica.com. One night she was alone and had a seizure just after getting off Trax and about to cross the rail lines at 2100 S State St. Because of this device, we knew she was seizing and exactly where she was. By the we got there, the EMTs had arrived and we were able to provide information, support, and a ride home, saving her an expensive ambulance/ER bill. May God bless your family!