My brother Jake lived with many complications due to his diagnosis of Hydrocephalus such as being nonverbal and having the inability to walk. This condition restricted him to traveling around in a wheelchair. Seeing him not being able to walk or talk made me feel upset for him because it reminded me of how hard life was for Jake. I often wished that Jake could have lived in my shoes so he could see how I functioned as a “normal” person. Frequently throughout each day, Jake used a machine called the “suction”, which would help clear out the congestion in his lungs. Everytime I heard him go on this machine, it made me upset because of all the pain he had to go through. It broke my heart to see my brother suffer. Looking back on the years when Jake and I were growing up, I do have a deep appreciation for the dedication and sacrifices that my parents made for us. My parents provided Jake with twenty-four hours of care each day, yet they always found time for me. I am grateful for the time and love them for making all of the sacrifices they made for me. Mom and Dad would sometimes miss meals or even become sleep deprived trying to parent us. I often worried about my parents' health and wellness as sometimes they weren't able to receive the daily essentials. When Jake was dealing with hardships during his life, my mother was concerned about my mental health. She frequently asked me how I felt about Jake and our family life because she realized we were all going through a struggle. I remember feeling so stressed about if Jake would ever make it back home. I never wanted her to worry about me because I knew both she and Jake had it worse than me. Jake was my inspiration as a kid as he fought through everything in his way. Whenever I deal with an obstacle in my life, I always think about the pain that he went through during his surgeries and illnesses. This thought process always helps me to drive through challenges that I have to face in life. I remember feeling extreme stress each time Jake went to the hospital. Would I ever see him again? In the early morning hours of July 19, 2019, Jake suddenly, but peacefully, passed away in his bed. When Jake left us, my family and I grieved for a very long time and are still grieving until this day. Sometimes, I experienced feelings of guilt from gaining a lot more of my mother’s attention after Jake passed. Restrictions on our time have lifted and we are now able to enjoy activities like attending Red Sox games, going to the gym together and enjoying long summer days on the beach. While I find this time with my mother to be joyful, I would give my mom’s attention back to Jake in a heartbeat if I was able.

My brother Jake lived with many complications due to his diagnosis of Hydrocephalus such as being nonverbal and having the inability to walk. This condition restricted him to traveling around in a wheelchair. Seeing him not being able to walk or talk made me feel upset for him because it reminded me of how hard life was for Jake. I often wished that Jake could have lived in my shoes so he could see how I functioned as a “normal” person. Frequently throughout each day, Jake used a machine called the “suction”, which would help clear out the congestion in his lungs. Everytime I heard him go on this machine, it made me upset because of all the pain he had to go through. It broke my heart to see my brother suffer. Looking back on the years when Jake and I were growing up, I do have a deep appreciation for the dedication and sacrifices that my parents made for us. My parents provided Jake with twenty-four hours of care each day, yet they always found time for me. I am grateful for the time and love them for making all of the sacrifices they made for me. Mom and Dad would sometimes miss meals or even become sleep deprived trying to parent us. I often worried about my parents' health and wellness as sometimes they weren't able to receive the daily essentials. When Jake was dealing with hardships during his life, my mother was concerned about my mental health. She frequently asked me how I felt about Jake and our family life because she realized we were all going through a struggle. I remember feeling so stressed about if Jake would ever make it back home. I never wanted her to worry about me because I knew both she and Jake had it worse than me. Jake was my inspiration as a kid as he fought through everything in his way. Whenever I deal with an obstacle in my life, I always think about the pain that he went through during his surgeries and illnesses. This thought process always helps me to drive through challenges that I have to face in life. I remember feeling extreme stress each time Jake went to the hospital. Would I ever see him again? In the early morning hours of July 19, 2019, Jake suddenly, but peacefully, passed away in his bed. When Jake left us, my family and I grieved for a very long time and are still grieving until this day. Sometimes, I experienced feelings of guilt from gaining a lot more of my mother’s attention after Jake passed. Restrictions on our time have lifted and we are now able to enjoy activities like attending Red Sox games, going to the gym together and enjoying long summer days on the beach. While I find this time with my mother to be joyful, I would give my mom’s attention back to Jake in a heartbeat if I was able.