Episode 2: Becoming Olivia’s nurse overnight
July 26th, 2018: Olivia’s first visit to BCCH
Call it to fate if you will, that for as long as I can remember, I have had a fascination with science, biology, and chemistry. So naturally, when we were thrust into this new chapter of our life, I melted into the environment like butter on hot toast. I found myself at home amongst the medical professionals who cared for our daughter. It definitely helped that her medical team allowed us to be involved in her care, plus they were also very receptive when we had questions or concerns. I was a mix of curious and scared, especially at the beginning of her diagnosis. When we found out about her disease, there were less than 50 known cases, but now there are more than 100. During the length of her hospital stay, more information became available as the disease was just beginning to be studied. Families of other TANGO2 kids were connecting all over the world and sharing their stories, which, as a result, provided us with more information about what Olivia was experiencing. During the early days of her diagnosis, we joined a Facebook group of families that were also affected by the same disease. It was a bittersweet feeling of excitement and sorrow (excitement because we didn’t feel as alone, but sorrow for all of the other families who shared our curse). We found ourselves in a very unique situation because so little was know about TANGO2, but as we navigated this journey, we were learning along the way. On occasion, we would come to realize that we knew more about her disease than her medical team did, but they were just as eager to understand Olivia as we were. In the beginning, I did feel a little guilty for how excited I became as I absorbed all the information that came my way. Part of me felt that I shouldn’t feel joy when the world was crashing down around me, however, I couldn’t deny the exhilaration I felt when new information would create a positive effect on her level of care. Over time we started becoming more comfortable with the complexity of her disease, which proved helpful whenever something new would come up. It became a common theme that when a new problem would surface, her medical team would become humbled by the experience of solving it.
July 26th, 2018
After Olivia’s first visit to BCCH, we were hopeful that even though she had TANGO2, maybe her case wouldn’t be too bad. Maybe luck would shine upon us, and our daughter would only experience mild symptoms. That hope slowly shattered as her disease evolved, and we could no longer stay in denial that things would go back to normal. We needed to learn how to live all over again. The new normal became what was once the abnormal. As we adjusted to what our life was becoming, we were also surrounded by a wealth of medical knowledge. In the beginning, when the medical team spoke with us it felt as if they were speaking another language, but as time passed, their words became less foreign. Once I had accepted the fact that our daughter was going to need constant medical attention in varying degrees, I knew what I needed to do next. To me, the only option that felt right was to do everything in my power to understand her and her disease, so I could give her the best quality of life possible. I started researching all the components of her disease, and I listened closely when the doctors talked, so I could take notes. I became as involved as the team would allow me to be, and I stood up for her best interests whenever she needed me to. I participated in many conversations with the medical team, and we would often work together to navigate our way through problems that would arise. I learned how to do basic medical procedures and interventions that Olivia needed from the nurses and doctors. The spectrum of knowledge I had acquired was narrow but extremely important for our daughter.
Aug 17th, 2018: the second visit to VGH
It felt as if I had become Olivia's nurse overnight, however, it was merely the decision to become her nurse that came so quickly. The knowledge and experience came about over the 17 months of being surrounded by a medical environment, and by watching our daughter fight for her life on multiple occasions. I had also acquired a wealth of useful knowledge from the other TANGO2 families we had been in contact with. The bonds that we had formed with her medical team and the other families we met, we continue to carry with us to this day. Olivia likes to ensure that we have plenty of opportunities to learn by keeping all of us on our toes every day.
