The night we were told of our two-month-old son Austin’s terminal illness was the worst night of our lives. The walls crumbled around us. Despite being in the hospital, surrounded by machinery and beeps and alarms – there was nothing else. A void of numbness. My husband and I stood at our son’s bedside and clung to each other.
Life was never going to be OK again. I could not see a world where things would not be in ruins. This was a story you read about, a sad happenstance you stumble-upon that you read about behind furrowed brows and a sympathetic yet distant gaze during your morning social media scroll. This did not happen for real. Babies do not die. It was far-away and vague and wrong.
Early the next morning, after very few minutes of sleep and once the fog of shock and disorientation had settled fully in my son’s hospital room, I stood at his bedside. Our beautiful baby boy was undeterred – he looked up at me with his big crystal-clear blue eyes. He batted at the mobile as it danced in front of him. Yes, he had a feeding tube and was breathing with the help of a CPAP machine, but he reached out at the sound of my broken lullaby in the same way he always had.
Something clicked. Austin was still Austin. He was unaffected by the events of the prior night. He knew not of the pure unadulterated anguish that swirled inside of me. I was still Mom. He still needed his Mom. I took his tiny hand in mine and spoke aloud to my husband – our boy deserves the best of us. All I want to do is wallow and be sad but he deserves happy parents who emote love and brightness and comfort – all of the things a baby needs. His life is worth more than this hospital, more than these machines, more than his illness. We are his whole existence – his mom and his dad and our home. We need to get him home and give him the best version of ourselves.
We agreed that morning that we would not wallow in front of our boy. We would set aside time in the morning, before he wakes and at night, once he’s fast asleep. Then we will mourn. But when he is awake, with us on this earth, we will be the best version of ourselves. We vowed that morning that we would prioritize his experience over our grief, and show up for him. He will know nothing of our tears and only of the joy his presence brings.
Austin lived in this world for 31 more days. 21 of them were spent at our home, surrounded by the love and adoration of his family. We sang, read, kissed, giggled and played throughout that time. His days were full of snuggles and adoration. We took so many pictures, and worked hard to ensure a world of love and contentment for our son. For the most part, we were true to our promise. Of course, there were times of sorrow. For me, the truth of the inevitable produced a low, constant hum in my psyche.. but when I looked at my son, I was usually able to be transported to the present, and reminded of the vow I had made to him. I am so thankful for the moment of clarity that allowed me to see what was necessary. I am able to look back having no regrets – I know his was a world of love and warmth, and that we did the very best that we could do. His journey in this world was short, but his impact was profound and will forever be with us.
– Karlie Conn, Austin’s mom