Episode 1: Mourning the loss of what once was
May 19th, 2018
From an early age, I had decided I wanted to be a mother. When I would imagine what my life would look like as an adult, it was always the same. I was married with 3 kids and a dog. We owned our own home, and I had a job that allowed me to make a difference in the world (as a child my dream job would change frequently, but always to something that helped people). As time passed, I gradually put together some of the pieces of my childhood dreams. Life had not turned out how I had imagined it would, but in hindsight, my greatest downfall was not having a clear picture of what I wanted or how to achieve it. I did manage to fall in love and get married, get a dog, and have a daughter. I was starting to feel like I was on my way to having that life I had always wanted. We were still renters and I hadn’t sorted out the dream job part, but I was doing work that helped other people feel happy. After our daughter Olivia was born, life began to feel like a dream… a messy but beautiful dream. By the time she was a couple of months old, we had settled into a routine life of normal baby stuff (feeding, naps, cuddles, playtime, and walks). A couple more months had passed, and we were starting to feel ready to begin the process of attempting to expand our family again. Life wasn’t easy, but we felt that we could handle anything that came our way. By the afternoon of July 18th, 2018, our confidence would be tested. That was the day that the life we had grown to know and love died, and a new one began.
July 19th, 2018
We found ourselves in a state of shock as we watched our sweet little child fight for her life in a PICU crib. With our family by our side, we held onto hope that this was merely a nightmare that we would soon wake from. In public we stayed strong not only for ourselves but for our whole family, however, in private we took turns breaking down. When one of us would fall apart, the other one would pick up the pieces. On the 20th, they discontinued her sedation, and when she was ready, they removed her breathing tube. It felt like an eternity as we waited for her to wake up. Then in an almost electric moment, we were once again blessed to hear the beautiful sound of our baby crying…. something that we had wanted badly since the 18th. Over the next couple of days, Olivia began to gradually come back to us, but we knew we were not out of the woods. By the 22nd, they had an idea of what it was so they ran genetic testing, and by the end of the week, her disease was confirmed. Her mysterious illness was actually a rare disease called TANGO2, and the episode that nearly ended her life was a metabolic crisis. The night before her first episode was the first time that Olivia had slept through the night without a midnight feed, and unfortunately, dehydration is a known trigger for a metabolic crisis. In the beginning, I blamed myself for her first crisis. I found myself thinking ‘‘if only I had woken her during the night to fed her… maybe things would have gone differently.’’ However, the truth is it might have bought us a little more time, but the result would have been the same. Hindsight bias has a way of making trauma much worse.
July 21, 2018
Since that day, the best way to describe the range of emotions we felt would be to compare our experience to a rollercoaster ride. From one moment to the next, we would feel fear, anxiety, shock, regret, loss, guilt, anger, envy, depression, confusion, hopelessness, loneliness, self-pity, hopefulness, excitement, gratefulness, love, and pride. Quite often, we would cycle through those emotions daily, however not every day would be the same. Some days were full of more hope and excitement, while others were a mix of anxiety, loss, and confusion. The intensity and inconsistency of the emotions we were feeling were proving to be both mentally and physically exhausting. During our hospital stay, we grew as a family, however, the seeds of emotions were still beneath the surface. Occasionally our feelings would bloom into an ugly mess, but over time we have learned how to face them when they surface. Given Olivas's age at the time of her hospital stay, and the complexity of her disease, I needed to stay in the room with her. During the 17 total months of her hospital visits, I was lucky enough to be able to sleep in my own bed approximately 20 times. As a result of our ever-evolving situation, we found ourselves thrust into a position of living one day at a time. Whenever we would attempt to make plans beyond a couple of days, the universe found a way of changing them for us. At first, it was upsetting, but eventually, we began to find humor in our situation. I had decided early on that I didn’t want to feel helpless or sorry for myself anymore. I started to dedicate my free time to learning about her disease and how it was affecting her. I documented everything that was going on during her hospital stay, and I paid close attention to everything that the medical team was doing to help her. I knew in my heart that one day she would come back home with us, however, that would only happen if I could prove to myself and others that I was fully capable of taking care of her without supervision. So I prepared myself for the next chapter of our lives. When we finally got to bring her home, we felt the same blend of nervous, scared, and excited emotions that we had felt when we brought Olivia home at 2 days old. We were hopeful, but also terrified.
Nov 30th, 2018
The best way I can describe what we went through in the beginning, and to a lesser extent what we continue to periodically experience, would be mourning. Mourning not for the loss of life, but instead the loss of what was once our life. I became familiar with that sinking feeling you get when you watch the life you loved slowly fade away. Then followed the crushing feeling that comes with realizing that things will never go back to the way they were. Over time we have learned how to accept the grieving process while simultaneously learning how to find the beauty in our newfound life. This experience has been one of the most difficult things we have had to endure as a family. Although we are far from where we would like to be, we have found peace in knowing that we are working every day to get there. Since July 18th, 2018, we have been able to transition from days of grieving to moments of grief. It is unclear if there will ever come a time when we no longer grieve… especially given the fact that her disease is considered palliative, but we have come to accept that. After Olivia’s diagnosis, we were asked on numerous occasions if we wanted to call it quits and hand over our daughter to foster care. It seemed outrageous to us when we were asked, but over time I have begun to understand why some people would choose to accept that offer. We are grateful that we turned down that offer every time it was asked. Instead, we chose to open ourselves up to the possibility of emotional devastation, by staying committed to unconditionally loving our beautiful little human. In her darkest days, she needed us just as much as we needed her. We may still mourn, but we do not regret our decision to stay united as a family.
