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A Sister’s Perspective

Living with Tommy from a sister’s perspective.

Olivia with Tommy

Hello, my name is Olivia, I am 13 years old, and I am Tommy’s older sister. When I was little, it felt like Tommy was always sick, and had all of my parents’ attention. They would be up with him during the night, and they would sit with him during the day. They were constantly calling the doctor, and there were many doctors’ appointments. Tommy had to wear a mask to go outside, and there were very large air filters around the house to purify the air.  There were also many unfamiliar faces that came in and out of the house to give Tommy therapy, and check on him. My mother or my grandmother would go to school with Tommy and sit there until he was done to make sure there were no emergencies or issues. The schools were very far away. Even eating was a problem for him as he would choke and the food would go to his lungs. I felt very frustrated, confused, and scared with all of the mayhem going on throughout my house. It was also very, very hard for me to adjust to this lifestyle, and completely understand why this was happening,why Tommy was getting all the attention. Especially as a small child still developing, I would feel anger because of the fact that I was not receiving all the attention that Tommy was receiving. My parents, as well as Tommy, would also go away for very long periods of time to visit hospitals, such as the Cleveland Clinic, to learn about Tommy’s gene mutation. Sometimes, they would be gone for over a week leaving us (my older brother Andy and I) with only our babysitters, and grandmother to take care of us. They would return from these trips very tired and stressed out, with no time to “catch up”.

However, as I grew older and matured, I began to understand why Tommy was receiving the majority of my parents’ attention. In fact, I started to really help out with Tommy. For example, sometimes I take care of him so my parents can relax, and I tuck him in at night.  When we were at the same school, I would go by his classroom and check on him, and make sure he was okay in the cafeteria and playground. I know how to calm him down, stop him from biting himself, get him to request things so he practices speaking, and play with him.  He needs to eat on a schedule and always wear the right amount of clothes as he cannot stand being too hot and the cold can make him sick.  My brother and I taught him how to play subway surfer, a game on his ipad, and he is very good at it.  I know he needs help with everything and always likes a hug. Overall, living with Tommy has made me understand more about people’s differences and challenges, and that perfect comes in many different forms. -Olivia A. Dabinett (Age 13)