My son Aidan is 11 years old and has an undiagnosed developmental disability. He is non-verbal, uses a power chair for mobility, and requires total care for tasks of daily living. As many of you moms of kids with with special powers know, disability effects the entire family. My 13 year old son Liam is a wonderful big brother and gifted writer. He recently published an article in Pediatric Nursing about living with a sibling with a disability. Below, Liam describes his experience of Aidan going to the hospital for a VEEG (video-EEG test to diagnose seizures). This is Liam's story; it's very different from my perspective and that's important for all of us to remember. His voice matters too.
This was one of the scariest times of my life. It felt like a giant hippopotamus was about to fall on me. My mom and Aidan went up to Portland for the test. It was an overnight study and they were only supposed to stay for a night. My dad went to work like normal that morning and I went to school. When I came home from school, my friend’s dad was there to pick me up. The plan was that I would go to his house and stay the night while my dad stayed at the hospital with my brother and my mom. After dinner I got a phone call from my mom saying that she loved me and that everything was going smoothly and she was having dinner. I went to sleep knowing that tomorrow when I came home everyone would be home and we would know if it was epilepsy or not.
In the morning I got up, had breakfast, put on my coat (it was January), and got in my friend’s dad’s truck to go to school. When I got home that’s when things started to go wrong. Instead of my parents being there, nobody was there. It was as quiet as a ghost. I was used to being home alone and I figured they were just running a little late. After about fifteen minutes my dad’s car pulled into the driveway. I ran out to meet him, a little nervous about what I was going to hear.
“Hi Dad, where are Mom and Aidan?” I asked.
“It turns out they need to do more tests,” he replied, “You are going to have to come up and stay the night and miss school tomorrow.”
I went into the house to pack a bag for the night; clothes, toothbrush, toothpaste; all accounted for. As we were about to leave, my friend’s dad pulled into the driveway and told us that they were able to take me for another night. When my dad offered me a choice of where to go, I instantly chose my friend’s house.
That night I was glad I chose my friend’s house because it was fondue night. The chocolate bananas tasted like heaven. I ate a little bit too much and at three in the morning I puked. Fortunately, I made it to the bathroom in time. However, I decided to stay home that day. It turns out that I didn’t need to for two reasons; one, I was better in the afternoon and out sledding, and two, school was cancelled. I didn’t find out until the next day that school was cancelled so it was all good.
My dad called later that day to say that he was going to come back home the next day and that my Mom and Aidan would have to stay for two or three more days. I went to school the next day and when I got home my dad was there. I was flooded with relief. The next two days were mostly spent waiting for any important news. My dad went up to visit on one of those days. Finally, on Sunday, Aidan and my Mom came home. I was so relieved. We still didn’t have the results though. We had to wait another few days before they came in and then it was confirmed that it was epilepsy. The diagnosis did not effect me as much the anxiety of waiting for Aidan and my Mom to come home. I knew that he would still have seizures no matter how he was diagnosed. To this day I have never liked when relatives stay at the hospital for extended periods of time.