He was 18-months old when the doctor called and said that he was nearly having liver failure. Nobody knew what was causing his Liver Function Test to be sky-high. Many months later, and nearly thirty hospital admissions, they discovered that Parker had a very rare genetic disease called Glycogen Storage Disease VI (Hers Disease). It is difficult to tell healthcare providers or anyone unfamiliar with this super rare disease what exactly this means for our day to day or, most importantly, Parker's life. Parker is missing an enzyme that converts glucose into glycogen in his body. His liver stores glucose. Did you know that for every molecule of glucose the liver sees, it takes 350 days to rid itself of it? Which means for 18 months, his body was storing glucose from every meal. Every drop of formula. Every blueberry. Everything. That is why when the doctors told us that his liver extended from his ribcage to his pelvic bone, we were not surprised. There is not a ton of information about this specific form of the disease, and it varies wildly for each person. For Parker, this means that he must consume a mixture of cornstarch and protein powder in a milkshake like concoction, 4 times a day. He also dream-fed a similar mixture two times a night while he sleeps. The key to controlling his liver disease is glucose control. He has a home nurse with him 5 days a week ensuring that his sugar levels are maintained. It is quite common for Parker's blood sugar to drop 40 points in 20 minutes due to exercise, extreme weather, or for no reason at all. Without the watchful eyes of his nurses, I did not know where we would be. The thought of entering healthcare occurred during one of those hospital admissions. My husband, a former nurse and the team of doctors were talking about Parker's care plan. They were using words like; BID, hepatomegaly and titrate. "What were they saying?" I hated it. I wanted to be a part of the conversation and advocate for his health. I was his primary caregiver. Why wasn't I involved in this conversation? Then one day, while sitting in Children's hospital, crying, a PCT came over and held my hand and said, "You would be a good nurse." I do not know why I didn't think of it earlier, but I would be a GREAT nurse. Months later, I began the process. I got a job at a dialysis clinic as a technician. I began completing my prerequisites and after some time, I began nursing school. Nursing school is not for the weary and yet here I am. A mother of two, a second career and with a son with special needs. Being a nurse to me means so much more than providing comfort and care to my patients in the hospital. It also means being the best, Mommy Nurse to Parker.