My Son Is Dying, but General Conference Reminded Me to Have Hope
I have been struggling with anxiety since my son’s diagnosis, but I learned that I can still have joy.
The year 2020 is the one most people say they would never repeat, but January 2021 was when my nightmare started.
Until that point, I thought my son, Damian, was perfectly healthy—a smiley little toddler who loved story time and singing. But when he was 20 months old, my husband and I noticed his development start to regress. At first he seemed to be tired all the time and would slump in his high chair during mealtimes. Then he stopped pulling himself up to stand and stopped scooting and crawling around.
Our pediatrician ordered an initial blood test that showed elevated liver enzymes, which led to a weeklong stay in the hospital for a flurry of exams, ultrasounds, MRIs, and a biopsy. A week after our discharge, Damian had a severe grand mal seizure. Absolutely terrified, Damian and I were emergency-flown in a helicopter back to Children’s Hospital, where we stayed in the ICU for three days and remained in the hospital for an additional week afterward for a myriad of more tests. The doctors wanted to keep him in the hospital until he was back to his “baseline normal,” but we were discharged when it became clear that he would never get there.
In March, our worst fears were realized when a specialized genetics test confirmed that Damian had Niemann-Pick disease type A, an extremely rare genetic disorder often referred to as “baby Alzheimer’s.” We were told he would continue to grow steadily weaker—eventually needing a feeding tube and oxygen—and would not live past his fifth birthday.
“This doesn’t end with him getting better,” his geneticist told us. “This ends with a funeral.”
I spent the rest of the evening after the diagnosis on the floor of our apartment, sobbing.
The following six months were a blur of therapy appointments, doctors’ appointments, fundraising campaigns, and gut-wrenching fear for the future. My anxiety kept me up later and later into the nights as I furiously worked on fundraising campaigns and emails to doctors. My lifestyle clearly wasn’t sustainable, but I kept telling myself to “just keep it together through September.” That was the month a pharmaceutical company would decide if they would manufacture a drug intended to stop the neurological decline associated with Damian’s disease. Believing vital information was coming in September kept me from going down an emotional black hole.
But September came and went without the news I had been desperately longing for.
So when the October 2021 general conference began, I was the most hopeless I’d been in a long time. How could I keep going the way I was going? How could I continue working, fundraising, and caring for my terminally ill child when Damian’s care would only become more complicated? How could I stay positive when my baby was dying right in front of me?
I was anxious to hear the messages of conference, and it seemed as if in response to the inner pleadings of my soul that multiple conference speakers were inspired to share this same powerful message from President Russell M. Nelson: “The joy we feel has little to do with the circumstances of our lives and everything to do with the focus of our lives.”1
These repeated reminders led me to a powerful realization.
Until then, my focus had been on getting Damian treated and making him whole again. The thought of not achieving that was absolutely paralyzing—I couldn’t even consider it. And until we knew that he would be healed, I didn’t know how we could feel joy under these circumstances. But those words from our leaders sparked a renewed sense of hope in me—and reminded me where hope always comes from.
Hope does not come from pharmaceutical companies, nor does it come from furiously working myself into the ground. Hope comes from a tender, loving Heavenly Father whose plan is always better than our own.
I know that Damian was sent to my husband and me for a special reason. My focus needs to be on fulfilling God’s will for Damian and our family. And despite all the heartache and unknowns we are facing now, I know that “men are, that they might have joy” (2 Nephi 2:25)—even in the midst of the trials we don’t know how to face.
My determination to do as much as I possibly can to help my son remains. But after all I can do, I have to hope and rely on God to do His will. Without hope properly placed in God, there is no way my family will be able to get through this—likewise, if we are to see the great miracle of Damian being treated, it will be because of Him. And so rather than putting all our faith in mortal men alone, our focus must be on God’s loving plan of happiness for all of us—the plan that gives us hope for this life and beyond.
Contrary to what my son’s geneticist claimed, Damian’s story will not end with a funeral, as it started long before Damian was born with this devastating disease. As President Nelson explained:
“The Lord has more in mind for you than you have in mind for yourself! You have been reserved and preserved for this time and place. …
“The Lord needs you to change the world. As you accept and follow His will for you, you will find yourself accomplishing the impossible!”2
I know that our Savior does not leave us to face our earthly trials alone. As we focus on Him, He will help us bear up our burdens so that we can feel peace during the darkest of times. The precious reminders of these truths during general conference helped me shift my focus toward God and His will. And they continue to bring the light of hope to some of my darkest days.