“Knowing yourself is the beginning of wisdom.” – Aristotle
Natalie and I had our own room at Dad’s house, complete with a crib he had borrowed. While Dad and I attached the IV pole to the crib and made sure an outlet was close by for her pump, Natalie explored her new surroundings. She toddled unsteadily up and down the hallway outside the room, giggling and stopping at the end to admire her reflection in the mirror. The only mirror in our apartment was over the bathroom sink and I do not recall any mirrors in the hospital, where she had lived for over a month. Natalie had a Fisher Price hand rattle with a small mirror on one side, but none where she could admire her whole self. She stood in front of the curious glass and touched her nose, then squealed. She put her hand on the top of her head, and giggled. Natalie was discovering her body for the first time.
My step mother Emmy Lou kept an immaculate house. My sweet little toddler left toys and books scattered here and there and of course there were diapers in the trash. I kept the bedroom door shut so the reminders that Natalie had a liver disease were out of site. That evening after Natalie was in bed and I was on my way to clean the mirror of those grimy fingerprints, Emmy Lou stopped me. “I am sure there will be more of those. Let me take care of that after you leave. You have enough to do.”
I realized that I had been living with the knowledge of Natalie’s liver disease for almost four months. Dad and Emmy Lou had only heard about the situation in letters and over the phone, not fully understanding the ramifications of Glycogen Storage Disease. They were grieving. I could tell they felt sorry for me, but I didn’t need pity. I had doctors who gave me hope and courage to help Natalie live a full life. It just required a little more vigilance.
Over the next few days Natalie and I called on friends from high school, some special people from church who were influential in my teen years and my sister came to visit. My sister and I talked for hours after everyone went to bed. She was concerned about me and wondered how my husband and I were doing. Our relationship had always been rocky, but I thought when Natalie was diagnosed it gave us a purpose to move forward together with the same goal.
I needed to stand in front of that mirror and see my situation as it really was, but I wasn’t ready. I could only see that my little girl needed me to be strong. She needed me to take care of her.
Lesson learned: “The best way to find yourself is to lose yourself in the service of others.” Mahatma Gandi , but denial is a protection from that which we are not ready. We come to know ourselves better by helping others and observing ourselves in the process with as much honesty as we are able.
I love reading all of these entries!,, this is exactly how I felt when my daughter was diagnosed. I certainly didn’t want or need pity, I needed my family and friends to support and understand, but how could anyone understand something so rare. I slowly learned to accept the realities of the disease and I am starting to learn ,to ask for help from friends and family. I know I am not alone!!
Just revisiting this post. It is time to write again soon. There are so many stories to tell. Hope you are doing well “Grimalda” and that your daughter is well.