It was Sunday morning, January 13, 2019, and I was lying in bed between that beautiful moment of dreaming and awakening when my 3½ year-old little boy Canyon spoke to me.
“Mommy,” he said.
I opened my eyes and looked into Canyon’s face. If love was electric, my love for him could light up the entire world. He was my 5th son, my biggest surprise and most difficult pregnancy. I had paid an immense price for him, but over the last year, the light in him had dimmed. Canyon was experiencing seizures, and after several hospital stays, all tests pointed to an absolutely horrible, terminal diagnosis. If we were lucky, my little boy might live to his 5th birthday.
Perhaps this sounds like the start of a tragic story, and there were days where it was the saddest story I could ever have experienced, but if you stick with me and keep reading, you’ll see this is a story about God’s miracles, His perfect timing and how the power of pray and fasting blessed our family in the most glorious way.
Six months earlier, it was a blistering hot August day in Phoenix, Arizona. I was pregnant with our 7th child and Canyon was scheduled to have eye surgery to correct two wandering eyes. His eye doctor reassured us it was a common procedure and had nothing to do with the terrible seizure Canyon barely lived through just a month earlier, which included 5 days in the pediatric ICU. The life-threatening seizure had been a truly grueling experience. and after sleeping night after night on a hospital bench, I was certain if I was ever to get into heaven, sleeping on a hospital bench while 6-months pregnant would most likely do it. After Canyon’s eyes surgery, he was brought to me blindfolded and I carried my 35-pound little boy, draped him over my pregnant belly, waddled out of the building with the sun glaring down on us like a heat lamp, and buckled him in the car. Once home, we both fell into bed and slept most the afternoon. I was so happy that would be Canyon’s last doctor’s visit for a while.
My beautiful baby Ruby was born emergency c-section on September 25, 2018. Her birth was a miracle all on its own, and I was finally home recovering. Most nights were sleepless and I was having intense pain from a reoccurring staph infection. Ruby wouldn’t nurse, so I was left pumping breast milk and feeding her from a bottle. My hard-working husband Derek was self-employed, so taking a day off to help was not an option.
Our oldest son Chandler had recently moved to the Philippines to serve a full-time mission, and I looked forward to his emails. Because of the time difference, we communicated back and forth in the middle of the night. My younger children started school early in the morning, so the newborn wasn’t the only reason I had bags under my eyes.
Sunday November 11, 2018 was a typical night with my 6 week-old baby: up and down with feedings, and when I finally fell asleep I had a dream. In the dream, I was walking in a creek with Canyon. The water was cold, and I looked up at the magnificent cliffs all around us. I took my eyes off Canyon for just a second when he stumbled and fell deep into the dark, murky water. Frantic, I swam down, found him right away (which was such a relief) and pulled him up to safety. After I held him in my arms and patted his back, he looked at me with this huge smile, the biggest, most reassuring smile, confirming he was perfectly fine. Although I was sleep deprived, the dream was so real, it woke me up. Instinctively, I had to check on Canyon. Because of his previous seizures, I felt like I needed to know he was alright. I laid there for another minute. Ruby wasn’t awake, and it would be so easy to drift right back to sleep, but the impulse to check on Canyon pushed through me again, so I forced myself to sit up. I walked down the hallway into his sister Eden’s room where he liked to sleep and could see Eden, but where was Canyon? That’s when I saw him. He’d slipped between the wall and the bed, pinched in the corner. His eyes wide open, staring up at the ceiling. He was pale and twitching, barely breathing.
I grabbed him in my arms, pain pulsed through the incision of my c-section and screamed to my husband that Canyon was having a seizure. The other kids woke up and were crying, scared and I wondered how I could leave Ruby? Would Canyon be alright? We sped to the hospital and once in the emergency room were rushed down a hall way to a room full of doctors and nurses. Canyon was unresponsive, so they started the treatments I’d seen done to him month’s earlier, including incubation, medication to increase his heart rate, IV fluids, and anti-seizure medication, but his time they did something different. They wrapped him in a blanket that looked like tinfoil. Quickly, it started to inflate.
“This is how we treat drowning victims,” the doctor said, “to quickly bring their body temperature up.” I suddenly remembered the dream of Canyon drowning. I realized somehow, with the help of God, my little boy had found a way to communicate with me he needed help. In the dream, I had found Canyon quickly, and he had assured me he was perfectly fine with that huge, undeniable smile. I leaned into the comfort of that image, knowing there was hope he would smile like that again very soon.
It was the third day of our hospital stay and Canyon still had tubes and monitors connected to him. After evaluating the brain MRI, the doctor said “We think your son has a condition called adrenoleukodystropy, or what is sometimes called white matter disease.”
I was so naive, so unaware of the monster lurking around the corner, I immediately suspected this odd-sounding, difficult to pronounce condition was something that could be fixed with medication or another surgery. In a conversation with Derek later that night, I’d barely remembered to mention it, but he had looked it up on the internet. Derek spent the next 20 minutes filling me in on the horror of adrenoleukodystropy, how it takes a child from thriving and developing to blind, deaf, lifeless and eventually death. Derek must have had it wrong.
After Canyon fell asleep in my arms, I lay with him in that small pediatric bed, numb, pumping milk for my newborn baby who was staying with a friend, and I scrolled through my phone looking at the symptoms of adrenoleukodystropy.
Limp or difficulty walking
White matter dissolving
Most common in boys
Average age of onset age four
Canyon had every single symptom. I felt like I was going to throw up. I stared at my little boy, begging the God of the universe, “This can not be true!”
Canyon had developed a droop in his smile, slurred speech and a noticeable limp. And what about the horrible seizures? I was becoming too familiar with speeding down the freeway and running into the ER with him in my arms begging the doctors to save him. I hated that Canyon now had a pediatric neurologist who knew him by name.
There was no way. The doctor had mentioned is so casually, he couldn’t really mean it. He just meant there was a chance if everything else was ruled out. Canyon would be discharged and they were starting him on a daily seizure medication. He would be alright.
“Honey,” Derek had said to me, “adrenoleukodystropy is terminal, there’s no cure. Canyon would have maybe two years.” My husband, the strong one, so logical and consistent, so reliable, so capable, why was he crying?
When Canyon finally came home, our family was not the same. I didn’t recognize the sounds coming out of my teenage son’s mouth when we told our kids the news. It was like we were all grasping for air. It had caught us all by surprise. What about our perfect lives? Our happily ever after? What was it all about now?
Canyon had a follow up appointment the next week. Although it was November, he insisted on wearing his Halloween custom to the visit. During the exam, Canyon followed the instructions to his best ability in his little brown monkey suit. While I held my newborn close to my chest, my mom and I spoke with the doctor. I was nervous, but optimistic the he would rule out adrenoleukodystropy. He hadn’t mentioned it yet.
“We tested Canyon’s blood work in the hospital to see if he had fatty acids in his blood.”
I had no idea what fatty acids were and mentioned to the doctor the night before Canyon’s last seizure, he’d had salmon and avocado, high fat foods?
“No,” the doctor said, “foods don’t cause fatty acids. Fatty acids can take years to break down into the blood stream, and we can detect what part of the body is releasing them.”
This was the first I’d heard about such a thing. “Well, he doesn’t have them, does he?”
“He does, and according to the numbers, they are the break down of his white matter.”
I literally felt like a black hole in the ground opened up and I was falling into it. How could everything keep lining up in the wrong lane? I sobbed into my hands, sinking, barely able to hold onto my baby.
The doctor pulled up Canyon’s MRI and showed me the pattern in the back of the brain where his white matter was falling apart, dissolving like melted snow. Without the white matter, eventually, my son’s brain would stop functioning all together.
This was the day life stopped for me. My little boy was dying. It was December, a time to celebrate the birth of Jesus Christ, but Derek and I lived in a state of mourning. Every time Canyon spoke, when we couldn’t understand what he was saying, it was like the disease was mocking us. Canyon loved the park, but one day, as he was running he fell. I picked him up in my arms and cried a thousand tears. Every experience was now evidence of our little boy’s decline. A friend at the park brought a blanket and wrapped us in it while I shook and sobbed. My eyes remained swollen and my days were blurred like murky water. I would try to hide or quiet my cries, but Canyon would always find me and hold onto me while I released the pain.
Six weeks later, we were still waiting on one final test, blood work that had been taken during our November hospital stay. Adrenoleukodystropy was so rare, the genetic test that would confirm our son’s death sentence was packed in ice and sent back east to a lab at a medical university. We were told the test would take a month to conduct. I called our doctor’s office and spoke with the nurse, reminding her the results should be in. She called the lab and the week of Christmas informed us the blood work had been lost. No one knew where it had been sent, and we would need to reschedule to have Canyon’s blood drawn again. I remember staring at the Christmas tree, the lights blurred together because my vision was altered. Every Christmas carol carried a sentimental feeling, a sense of loneliness and pain that I knew only Jesus could heal someday.
In the Philippines, Chandler had been given permission to call to let us know he’d been experiencing horrible stomach pain. He was going to be taking a train to the hospital in Cabanatuan to have testing done. Chandler confessed he didn’t want us to worry, but after months of debilitating pain and weight loss, he finally told us in detail what he was going through. Until we had a definitive diagnosis, we didn’t want Chandler to know the extent of what was happening over here with Canyon. I couldn’t believe we were both keeping secrets because we didn’t want the other to worry.
I met with our stake president to discuss what we could do for Chandler and what was happening to Canyon. After our meeting and a beautiful prayer, I’ll never forget what he said to me: “Sister Lofgreen, you’ll never know the blessings your family will receive from your son’s missionary service.”
I wanted Chandler to be healed so he could stay out on his mission. I wanted Canyon to be healed from this horrible hell-on-earth disease. Our family and ward were fasting and praying, but the waiting game was impossible to win. One night, completely lost in a sea of heartache, I woke up. Derek was awake and like a pathetic choir of two, we both started sobbing these unrecognizable cries, holding onto each other in our pitch dark room. We would never function normally again. Derek was actually taking breaks at work to cry between appointments. We couldn’t live like this, but I didn’t know how to pull back from our downward spiral of grief.
I promised this would be a story of healing and the powerful reality that God hears and answers prayers. God is the beautiful orchestrator, the perfect story teller, the immaculate artist, and I would have never believed what he was about to paint into our lives.
Back to that Sunday morning, January 13, 2019 when I was lying in bed between that magical moment of dreaming and awakening, my eyes not yet swollen with tears, that moment when I’d forget I had a child who was being taken from me, Canyon said my name.
I opened my eyes and looked at my precious boy. Blonde hair, golden skin, chocolate chip brown eyes, pink lips, blushed cheeks! What was this I saw? At that moment, I noticed his skin was so bright, so healthy, the pink back in his cheeks and his eyes seemed to sparkle. Before I was even fully awake, I knew.
“Canyon, you’re better,” I said, practically tripping over my words. “Honey, you’re better.” I grabbed him in my arms and held him close to my heart, staring back at his face, examining how different he looked.
I don’t know how I knew, but I knew the disease the doctors were certain he had battling inside him was gone, healed, restored. I dared say the name, even though I’d finally learned how to say it without having to reference it on my phone.
That’s when I remembered my dream. I’d had a dream.
I ran into the kitchen, my husband was getting breakfast ready so we could leave for church on time.
“Canyon’s better! Look at him. He’s been healed!!”
Derek had no idea what I was talking about, so I told him about the dream.
“I was in our bedroom with Canyon and several of the walls had large glass windows. Outside, I noticed a picnic basket with helium balloons attached to it. The picnic basket was full of light and it started floating up into the air. I told Canyon to look at it, but as he turned around, the picnic basket floated behind the house. I looked up and noticed our ceiling was glass, so Canyon and I lay down and stared up. It was floating up towards the sky, it would just be a moment before it appeared again. Suddenly, there it was. It seemed to be on a path, intentionally going somewhere. That’s when I realized it was floating to the sun. The sun was so bright, but still, I looked at it. That’s when I saw him. It was Jesus. Jesus was in the sun. It was really Him, the almighty, powerful Savior of the world. If I didn’t wake up, I felt my spirit would go to Him.”
I was very aware I sounded completely crazy, but Derek was always supportive of my spiritual impressions. “What do you think it meant,” he asked.
I wasn’t sure. All I knew was when Canyon woke me up he looked noticeably different, and I knew he was healed. I felt lighter and a peaceful feeling resided in my heart. It all sounded impossible, but I couldn’t deny what I knew was true.
I walked back into my bedroom and sat on the edge of my bed, amazed. Canyon had been playing in the other room, but as he ran down the hallway and back into my arms, I decided to tell him about the dream as well. Again, I remembered the picnic basket, full of light floating to Jesus, and as I described this to Canyon, the spirit of the Holy Ghost ran through my body, helping me understand what it all meant.
“Honey, Jesus took your illness. It was in that picnic basket of light. Jesus took it from the earth. You’re all better. You’re going to be ok.”
From that day forward, I stopped crying. Derek had faith from the dream and he stopped crying. Our children knew Canyon was healed. Our days were completely different. I stopped looking for signs of Canyon’s illness, instead the miracles of his healing became obvious. When people asked how Canyon was doing, we said we were still praying and fasting, but we knew he was going to be alright. At times, I stopped to see if the emotional pain in my heart was still there. Could I back step into it if I tried? I literally couldn’t find the heartache. Since there was no medical proof Canyon was going to be alright, I knew I should be skeptical, but at the end of the day, I felt this overwhelming presence of peace and hope.
On February 13, 2019, we went back to the hospital to have Canyon’s blood work done again. It would be 4 weeks until we heard any news. The odds were against him, but my heart wouldn’t allow me to sink into despair. I knew he was healed. As the nurse prepared the needle, I had the thought to play a peek-a-boo game and cover Canyon’s eyes. When she poked him, he was so preoccupied, he didn’t react to the procedure.
Meanwhile, in the Philippines, Chandler’s health continued to deteriorate. He was diagnosed with h-pylori, a bacteria infection in the gut most commonly caused by contaminated drinking water or poor sanitation. If left untreated, the inflammation could result in Chromes disease, stomach ulcers or worse, cancer. The doctors tried antibiotics, but Chandler’s protruding stomach, severe pain and a suspected hernia meant he needed to come back to the United States for medical treatment. I received an email from his mission president that Chandler’s departure visa, which should have been processed, had been lost by customs in a pile of paperwork. It would take a miracle to get him home.
Our family and ward continued praying and fasting for both our boys. To feel the love, support and faith from so many around us meant everything. We came home to cookies on the porch, had help with housework and read notes of encouragement. I shared updates on social media, but more than that, I was testifying of God’s love, the power of prayer and fasting and how thankful I was for my family and Savior.
On the morning of March 4, 2019 while taking care of the baby, I missed a call from the pediatric neurologist’s office. The nurse left the most heart-warming, life-giving message. The test came back negative. Canyon did not have adrenoleukodystropy. Because of the lost blood work, we had waited 4 months for the results. The doctor was shocked and relieved. My heart burst open, my eyes filled with tears and I ran to share the news with my husband. It’s amazing when you have a young child unaware of an impending medical condition, how much that child lives in the present, uninfluenced by his or her potential life expectancy. All along, Canyon had played, skipped, sang, loved, laughed, even comforted us as we cried. It was incredible to think he had lived perfectly content.
The next day, I received an email from the mission department. Customs had found Chandler’s travel visa and approved his departure papers. Our missionary was coming home from the Philippines, not exactly how he had left, but in time, we would get him back to health. At that moment, I heard the words from my stake president, “You’ll never know the blessings your family will receive from your son’s missionary service.” I marveled that Chandler was released from his mission after we received the confirmation Canyon would be alright. I thought “What an interesting coincidence?” The spirit whispered to my heart, “The timing is not a coincidence.”
About a year later, as we continued watching Canyon heal, his speech improve, his smile slowly correcting, his energy come back, I was talking to my sister Becky about our miraculous experience. “You know why that first blood work was lost don’t you?” she said.
I hadn’t thought about it that for months, but at the time, I resented the lost blood work, confused why such an unfortunate thing would happen at such a crucial point in Canyon’s journey, but Becky had another idea.
“God was going to heal Canyon, so you were never meant to have the results from the first test.”
Such an idea gave me chills. Could it be true? We would never know the specifics of Canyon’s healing, but I did have a testimony that in God’s universe, there are no coincidences.
Canyon is now 6 years old. He has been tested for a variety of other health conditions, one panel had 80 different possible medical outcomes, but the tests continued coming back negative. He remains on a very small dose of anti-seizure medication and continues to grow in strength and healing. Every day is a miracle to celebrate the power of prayer and fasting, to dance in the light of Jesus Christ and praise the God Almighty for each precious moment.