Obviously, it has been a while since the last update. I have thought a million times about adding an entry, and I started multiple drafts that sit unfinished. However, this week marks the one-year anniversary of Drew discharging home from the hospital (October 13th, 2017), so I was determined to celebrate with a list of the top 5 lessons that F.I.R.E.S. Has taught me these past 15 months or so. As I started writing, though, I quickly realized that each lesson will require their own entry to really do them justice while updating our family’s journey. Also, please forgive the protocol faux pas, but I felt the need to start with Lesson #2.
Family Hike up Ensign Peak — June 4th, 2018
Thursday, October 11th, 5:45 PM
”This place is pretty empty,” Drew says as we descend the stairs to the first floor of the Primary Children’s Outpatient Building.
”Yeah,” I reply. “Most of the clinics close by 5:00. Your doctor’s appointment finished kind of late today.”
As we reach the landing at the bottom of the stairs, the security guard behind the lobby desk nods to us as we push the button for the elevator.
”Nope,” Drew scans the lobby, “Not too many people around any more.”
“You hungry?” I ask as we wait for the elevator.
Drew shrugs. “Not too bad….”
A bell dings to announce the elevator’s arrival and the doors glide open to reveal an empty car.
”Looks like you’re going to be a little late for your first class tonight?” I tell Drew as we step into the elevator. Drew is taking three classes through the BYU-I Pathways program. Most of the work is accomplished online, but they do meet on the Salt Lake Community campus every Thursday evening, and the Missionary Prep class starts first at 5:30 PM.
Drew shrugs again as he checks the time on his phone, which shows it is nearly 6:00 PM. “Which level did we park on?”
”P-1,” I tell him and he punches the button with his finger. As the elevator doors slowly close, I add, “You should still be there for all of Choir and Pathways.”
Before he can respond, and seemingly out of nowhere, a hand is suddenly thrust into the elevator just before the doors fully shut.
”Whoa,” Drew says as he he jumps back.
The doors reverse their direction and slowly re-open. A tall, well-dressed woman steps onto the elevator. She quickly hits the button for P-5 and then steps to the back of the elevator car. From her pocket she pulls a pager and starts studying a message on the screen.
Once the doors close, the elevator finally begins to descend. I glance back and recognize this new rider as one of the Neurology doctors who helped care for Drew in the ICU. Of course, she doesn’t recognize us and I wouldn’t expect her to in a million years, but she was the doctor who first diagnosed Drew with F.I.R.E.S. And advocated to start treatment while strongly disagreeing with the ICU doctors. I couldn’t remember her name, but she was one of our favorites and will always hold a dear place in our hearts, so I have to say something.
”I don’t think she recognizes you, Drew.” I smile as the doctor looks up from her pager in surprise.
I explain to the doctor, “You helped care for Drew last year when he was in the ICU.”
”I did?” She strains to remember, but still no flicker of recognition. The elevator dings as we stop on P-1.
As the elevator doors start to open, I add one more clarification: “He has F.I.R.E.S.”
Her mouth drops open and she says, “What?” She quickly scans him from head to toe and adds, “You are doing fantastic!”
I think she remembers, but even still, as we step off the elevator and the doors start to close, I say, “Thank you again for your help.”
Drew’s First Day of College– September 20th, 2018
“The Greatest Thing in the World”
In a May, 2006, Brigham Young University–Idaho Devotional, John S. Tanner shared the following story:
“President Boyd K. Packer [President of the Quorum of Twelve Apostles in the Church of Jesus Christ of Latter-Day Saints] told me about Sister and Elder Tuttle, a former member of the Seventy [a General Authority of the Church].
”The Tuttles had stopped to eat at a restaurant owned by a Greek proprietor who was struck by Sister’s Tuttle’s seemingly Greek profile.
“He said to them, “I’ll buy you dinner if you can tell me the greatest thing in the world.”
”They thought about it and said, “love.”
”The Greek man said “No. You can live without love. The greatest thing in the world is hope. You can’t live without hope.” Knowing his immigrant background, they sensed that he spoke from personal experience.”
Lesson #2 — Don’t Ever Lose Hope.
The Apostle Paul wrote: “tribulation worketh patience, and patience, experience; and experience, hope” (Romans 5:3-4). As such, hope must not be confused for optimism — a passive, naively Pollyanna-ish outlook toward an uncertain future. Rather, “hope” is a much deeper, more resilient and active assurance that no matter the outcome, all things will ultimately work together for our good because of the rock of our Redeemer, even the Atonement of Christ. Perhaps this is why Paul also described “hope” as an anchor of the soul” (Hebrews 6:18-19), or in the words of the prophet Nephi, we must actively “press forward … having a perfect brightness of hope” (2 Nephi 31:20).
As we all struggle through this fallen world, every one of us will arrive at one time or another, at the edge of the deepest, darkest abyss from which it feels there is no return. How tempting and easy it would seem to be to just give up and jump headlong into that black chasm, which calls out to us and offers to let us numbly rest from our trials and tribulations. However, this whispered promise is merely an illusion and in reality, the mirage will only bring us continued sadness and despair. True and lasting happiness can only come through faith and hope.
As I look back over Drew’s illness, I do remember some days being so incredibly difficult to maintain any semblance of hope. Setbacks, frustration, fear, worry, and doubt were constant companions throughout our journey. Yet, when the choice had to be made not once, but three times, whether we would withdraw treatment and let nature take its course, we found that tiniest glimmer of hope. And as long as there was even a sliver of hope, that was all we needed to carry onward. Now it is Drew’s turn to learn how to hope when every day seems so very unfamiliar and unfair.
Drew’s first return to the Lagoon Amusement Park since his illness — July 27th, 2018.
Thursday, October 11th, 11:35 PM
”Help me, Dad.” Drew sat in the passenger seat of the car, his head resting against the seat, eyes closed, and he reached for me with his outstretched hand. Headlights from oncoming traffic momentarily and alternately flashed across his face, casting shadows across his already troubled countenance.
”What do you need me to do?”
”Just hold my hand, Dad.”
”Of course,” I said as I reached for him with my right hand and grabbed hold. My left hand gripped the steering wheel as we raced back to Primary Children’s Hospital, but this time to the Emergency Room.
“I though maybe you were feeling a little better just now?” I asked him.
”No, Dad, the bad thoughts keep popping into my head,” he explained as he clenched my hand tightly. These intrusive, horrible thoughts really only started about a month ago, but seem to have been building and intensifying the last several days until tonight they exploded.
“I just had a new one,” Drew continued. “I pictured myself undoing my seatbelt, opening the door, and rolling out of the moving car.”
”Don’t do it, Bud,” I said and held his hand even tighter in mine. I punched the accelerator. As the car sped up on the freeway, the engine revved and the manual transmission screamed out to be shifted to a higher gear, but there was no way I dared to let go of his Drew’s hand.
“What else can I do to help?” I asked.
”Turn on the child lock on the door,” he said.
”That door doesn’t have one,” I explained as I nonchalantly hit the button to lock the car doors while steadying the steering wheel with my knee. “I’ll just keep holding your hand, if that’s OK?”
”Sure,” Drew nodded. “Why do these bad things keep popping into my brain?”
”I don’t know, Bud,” I cried. “You just keep fighting those bad thoughts and don’t listen to them.”
”Maybe it would be better for you and Mom and everyone if I just ended ….”
“Don’t you dare,” I screamed. “Don’t you think that for one minute. None of us would be better off — none of us. We love you so much, Drew.”
Hope Reigns Supreme Through the Savior
In Matthew 14, we read that the apostles toiled through the night to cross the Sea of Galilee. As they battled the wind and the waves, likely exhausted and spent, they cried out in fear as they saw a strange figure came toward them on the water.
Matthew 14:27 –“But straightway Jesus spake unto them, saying, Be of good cheer; it is I; be not afraid.”
Similarly, we must hang on and keep battling and know that the Savior will come to our rescue and help us to overcome our fears and doubt. As gloomy and dark and difficult the path before us appears, we must never give up hope. May we count the many blessings we have already received and then press forward with an assurance that, just as He has done before, God will continue to bless us and strengthen us.
I appreciate the words of Elder Jeffrey R. Holland, who said, “Believe in miracles. I have seen so many of them come when every other indication would say that hope was lost. Hope is never lost. If those miracles do not come soon or fully or seemingly at all, remember the Savior’s own anguished example: if the bitter cup does not pass, drink it and be strong, trusting in happier days ahead.”
President George Q. Cannon once taught: “No matter how serious the trial, how deep the distress, how great the affliction, [God] will never desert us. He never has, and He never will. He cannot do it. It is not His character [to do so]. … He will [always] stand by us. We may pass through the fiery furnace; we may pass through deep waters; but we shall not be consumed nor overwhelmed. We shall emerge from all these trials and difficulties the better and purer for them.”
Family Hike to Lake Mary — June 25, 2018
I am happy to report that thanks to the kind and skilled intervention of the doctors and social work at Primary Children’s Medical Center, Drew made it through the night unharmed. Even though Drew won this battle, he still fights the war against frustration, doubt, and fear. As we cling to hope, that most critical and ‘greatest thing in the world,’ may we continue onward through all of our trials with an assurance that help will come, the Savior loves us, and a brighter day will dawn.
Stay strong, Drew, and trust that happier days lie ahead. Above all, don’t ever lose your hope.
Lesson #2 — Don’t Ever Lose Hope.
Elder Jeffrey R. Holland, from his talk: “Tomorrow the Lord Will Do Wonders Among You,” General Conference, April 2016
© Copyright 2018 Jeff, All rights Reserved. Written For: Jeffrey Olsen
You really need to write a book about this experience. Take all of your journal entries and compile them into a book. Your an amazing writer… I’m so glad Drew is continuing to progress..He and all of your family members are Super Heroes in my eyes….love and prayers to you all…xoxo Bobbi
Thank you. We have family going through some serious health trials right now. Your words have touched our hearts and provided that reminder of hope.