How my son’s illness made me long for heaven


Emily with her son, Beau, who has a progressive muscle-wasting disease called Duchenne muscular dystrophy.


    Giving my life to the Lord meant longing for eternity in heaven with Jesus, right? Knowing that this life on earth can’t compare to eternity in heaven meant that I would anticipate it with excitement, right? Well, as a believer in college and a young adult, why was this idea of the forever and ever bringing me such anxiety?


    In my younger years and through most of my 20s, life was easy and good, apart from the small and ordinary daily challenges. I had a wonderful upbringing and family. I went to college, met my husband, got married and had three beautiful children.


    I was living a great life, but as a believer, it bothered me that I lacked an excitement for heaven. While in college in the ‘90s, I was studying God’s Word, and I began wondering about heaven. I became overwhelmed with the idea of the forever and ever and what that looked like. I knew I was a believer and had assurance of where I was going. But I couldn’t comprehend living there and worshiping the Lord forever. I couldn’t picture it being worthy or great enough to replace the life I already had.


    This began to overwhelm me and consume my thoughts. I prayed that the Lord would give me a desire for heaven, or that this fear would stop consuming me. For the next decade, I was able to “tuck” the fear away and stay strong in my faith, even though the longing for heaven was distant.


    In 2007, my comfortable and easy life came crashing down. When our middle child, Beau, turned 2, we became concerned over his muscle weakness and low muscle tone. A neurologist told us that all arrows seemed to be pointing to a genetic, progressive muscle-wasting disease called Duchenne muscular dystrophy.  We embarked on a six-week wait for a genetic test that would prove the doctor’s suspicions.


Clockwise from top left: Amelia, Mary Addison, Paul, Beau and Emily Gregory.


    During this wait, I became extremely sick due to the intense stress. IBS symptoms, fever and wasting away for a month led me to a diagnosis of ulcerative colitis, an autoimmune disease that attacks the colon. (Five very long years later, I underwent surgery to remove my colon.)


    The day after I was diagnosed, we received Beau’s positive diagnosis. We were devastated.  During the six-week wait, I’d cried out to the Lord to take this away. It was in one of those moments that I was overcome by a firm “no” from the Lord. Not an angry “no.” The kind of “no” that said, “I’m going to love you through this, sustain you, and provide you with exactly what you need each day.” The kind of “no” that said, “I love Beau more than you do. I haven’t forgotten him, nor forsaken him.” Because of this gentle “no,” I was able to come to terms with Beau’s diagnosis more easily. I didn’t have to like it or be OK with it, but I did have to accept it.


    Instead of asking “why,” I had to shift to “what”: “What do I do now? What are You doing, Lord?” As I grappled with the “what,” the Lord began to bring back that fear of eternity that I had tucked away for all those years. But instead of it returning as a fear, it returned as a new and welcomed perspective.


    From the moment of Beau’s diagnosis, my only comfort was dreaming of the day when Beau will run into the arms of Jesus without growing weary, and will be made WHOLE in heaven. How beautiful.


    As I longed for that for Beau, I began to long for that for myself. I realized I didn’t have to understand what eternity looks like in order to desire it. I began to anticipate the day which can only take place on the other side of this earthly life — the kind of wholeness that Jesus paid the highest ransom for, so I can stand blameless and whole in eternity one day. Brothers and sisters, I cannot wait.


    “No eye has seen, nor ear has heard, nor the heart of man imagined, what God has prepared for those who love Him.”  – 1 Corinthians 2:9


Emily and her husband, Paul, live in Madison with their children: Mary Addison, 18; Beau, 15; and Amelia, 14. They are members of Madison Heights Church, PCA. You can hear more of Emily’s story on episode 70 of the “Storytellers Live” podcast.