Knocking on Heavens Door

Sitting at the edge of my bed in our third-floor, two-bedroom apartment, tears streamed down my face as I processed the news about our beloved baby boy. We had spent two weeks in the hospital, conducting every possible test. At just two months old, Jax had endured more poking and prodding than anyone I knew. After discovering his diagnosis was a leukodystrophy, we were finally allowed to go home. A leukodystrophy is a disease in the brain that affects the white matter. This disease is progressive and deadly. These precious babies will never walk, talk or even hold their heads up. New health problems continue to arise in their lives. The nightmare had seemed to be over, but it was just the beginning. We didn't realize it then how our lives had been forever changed. Our dreams and goals would never be the same, we would never be the same. Dropped in the depths of life, there was no going back and nothing to go back to.

Walking into our apartment, we were exhausted and tormented by the news we had received. The heartache, sadness, emptiness, anger, exhaustion, and confusion finally took hold. How could this happen? Later that night, as I sat on my bed feeling hopeless and abandoned by God, I questioned everything. How could this happen? God should know I could never survive this. He has betrayed me, my son, and my family. What if there wasn't a God, I asked myself. What if everything I had been taught was untrue? I imagined a world without heaven, without an afterlife, nothing, only darkness after death. I dwelled in this darkness for a while. Terrified completely, that was the darkest moment of my life, filled with complete hopelessness. What was the point of life? Would I ever see Jax again after he passes away? This thought haunted me. Sitting on my perfectly made bed with the brown striped comforter from our wedding, I started sobbing, tears ran down my face. This continued for a while. Suddenly, I felt my grandpa's presence. I looked up as if someone had sat down beside me. I smiled and said, "Hi, Grandpa." A warm, comforting feeling came over me. I smiled briefly, experiencing something more real than ever before. For a moment, I felt loved, comforted, and supported. I could truly feel his presence, knowing he was there with me to love me and support me, as if he understood my struggle. It was the realest moment of my life so far. My tears of sadness turned into tears of joy. A glimmer of hope emerged, and I thought... There must be a reason for this, and I was determined to find out!

For the next three years, I searched tirelessly for the answers I so desperately wanted. Why did this happen? Where would Jax go after this life? What was the purpose of life? These were the same existential questions most people ponder at some point in their lives, especially at a young age or when life cracks you open.

One evening, while I was preparing dinner, there was a knock at my door. It was the missionaries. I wondered who had told them about our struggles; it had to be someone. I invited them in and said, "Who sent you guys?" They looked at each other, confused, and said no one. I insisted, convinced someone had put them up to this. Those poor young missionaries had no idea what they had walked into, lol. I can still picture their faces. Little did they know how much they had helped me in a very dark time; I truly felt God had sent them that night. You never know who your teachers will be, young or old, wise or naive. We lived on the third floor, and no one climbed all those stairs unless they absolutely had to. That's what I told myself anyway. I agreed to meet with them and even returned to church for a time. I turned to prayer, scriptures, and missionary lessons, seeking anything that might ease my pain. It helped temporarily, but eventually, anger overtook me, as I never found the answers I sought. If there was a God, how could He be so unjust? Why do some of us endure so much more suffering than others? In the end, I felt exhausted and depleted, feeling once more betrayed and abandoned by God. I was angry at this point and turned away from everything I once believed.

My first son, Jaxson, was diagnosed with a rare, progressive, and fatal brain disease at three months old. This condition, known as Canavan disease, is a type of leukodystrophy that affects the white matter in the brain. We were informed that his brain would become sponge-like, and he would never be able to learn or develop a personality. Essentially, he would be in a vegetative state for his entire life, with a life expectancy of just 1-4 years, as we were initially told. All our dreams for our son vanished in one night, and our lives changed forever. We grieved for the son we thought we would have and mourned the son we would eventually lose. Driving home from the hospital, I cried out loud in anguish. It was the most excruciating pain I had ever experienced. Later that night, we laid Jax on our bed, looked down at him, and saw a happy baby kicking his feet and smiling. To us, he was perfect. We saw a soul that loved us, and we loved him.

God Why

By: Stephenie Teuscher

I look at you and can't imagine loving you anymore

The pain is always there

Thinking one day I will have to let you go

Wondering why God would do this

Seeking for answers to understand

How could you be so cruel

To someday take my baby away

I have to believe this happened for a reason

I will always search for an explanation

I wish I knew

I wish I knew in this lifetime why this had to happen

Sadly, this is a mystery

something to do with our history

I drove myself crazy searching for answers

Only thing I can do is keep living

Hoping one day this will become easier!

*For a long time, I struggled with my faith in God following my son's diagnosis. I couldn't find peace with what I had gone through and everything Jax had endured. I struggled to forgive the God I was taught to believe in. However, I still needed something or someone to help me through it; I couldn't do it alone. It wasn't until my son nearly died that I discovered a spiritual practice that resonated with me and brought me peace. If you're in that place, keep searching—you will find it one day. There is light at the end of the tunnel. You must be broken open to be reborn. Someday, you'll be thankful for the tough times; that's when you grow and learn the most. Jax has taught me so much over the years, and I am truly grateful for him. He is pure light, with nothing but love to offer. I wouldn't be who I am today without Jax. Believe me, I had to go through hell and back to reach this point, but I wouldn't change it for anything. Even though I would give my life for Jax to be whole!