Tags: HopeforHH.org, hypothalamic hamartoma, Living with Hypothalamic Hamartoma
With the start of summer I begin seeing more kids playing outside in the warmer weather. It is sometimes a reminder to me of how I was never one of those kids who liked to play outside. I have heard people say that they feel as though they were robbed of their childhood. In some way I feel that the HH robbed me of my childhood. I rarely wanted to go outside and play as a child. I was sensitive to sunlight and would sometimes walk around with my hands covering my eyes. I remember being in the car with my mom and asking her to "turn down the sun". Then you add in the fact that I often wanted to avoid other kids because of the way that they teased me. I wasn't just a kid who was picked last during games; I was the one that they would argue over who had to have me on their team. In elementary school I would occasionally not finish an assignment just so I would be able to stay in from recess. To most kids missing recess was a punishment, but for me it was a get-out-of-jail-free card. During gym class I would sometimes lie to my teacher that I didn't feel well just so I could escape to the nurse's office until it was time to go back to class. To this very day I feel some anxiety when I smell pool chlorine because it triggers memories of being the only kid at pool parties who didn't know how to swim until age 11. When I was little my family vacationed a couple of times in Florida. I really never enjoyed it all that much because of the bright sun. My husband is from Anaheim, CA and when we visit his family the thing I want to do most is spend time at the beach. I wish that I could spend days hanging out at the beach when we go there. There are so many things I missed out on as a kid. Some of them I have been able to make up for and some of them I will never experience. I do my best to focus on the present and future rather than dwelling on the past. However, at times I still get flashbacks from my summers as a child.