When my husband, Tim, and I were much younger, long before we had Casey, we moved out to Los Angeles for work. My family was in Texas. His was outside of Chicago. We both have a lot of siblings and a lot of nieces and nephews as well. We would travel from L.A. to both Chicago and Austin at least twice a year. We loved spending time with our family and friends.
After Casey was born, we were not able to travel anymore. Traveling would have been way too hard on her. We never felt comfortable being away from her. On occasion, one of us would go home for big events. But in general, we didn’t see our family much anymore. They would come out to see us, but most had small children of their own so traveling wasn’t easy for them either.
We always sent birthday and Christmas gifts. We would check in with our siblings when time allowed. Each year, we talked less and less. Shortly before Casey was 2, she was strong enough to make the move back to Texas. But once we got to Austin, we stayed put. Travel wasn't possible.
Our families were understanding, but sometimes we could tell they didn’t really understand. To them, we seemed overprotective and silly for not just packing up all of Casey’s equipment and taking a chance. I’m sure if they were around her more, they would have understood why that wasn’t an option. But that is not how it went. My family is in Texas so we did get to see them more than when we were in L.A., but even living in the same state, we didn’t see them often.
Casey was born in 2006 and passed away in the spring of 2016. In the summer of 2016, one of Tim’s brothers moved to Texas with his family. His 2 oldest girls are teenagers now, and I had never even met his then 6-year-old son. I had always been the girl’s favorite aunt. It was kind of bitter sweet having them move to Texas. I was excited to be able to see them more, but another part of me was sad that they couldn’t have come a few years earlier and had time to meet and know their cousin, Casey.
After our relatives got settled in Dallas, we drove up to spend some time with them. It didn’t take long for me to realize that I was no longer their favorite aunt. I was a total stranger. They had talked to me on the phone, but not often, and they knew of me through stories from their parents. They had seen photos from when they were younger, but they no longer knew me at all.
I would not change our decision to stay home and spend all the time with Casey that we could during her 10 years here with us. It does make me sad now to be a stranger to my own family. It makes me even sadder to think they never got to know the most important person in my world. They never got to know why I became a stranger.
I’m sure in time we will be closer than we are now, but it will never be like it once was. I really wish the entire world could have had the opportunity to know my Casey. Instead, I will have to do my best to show her to the world through my eyes and memories.
Accepting, Grieving and Adapting to Life is a supportive, and important page for all parents dealing with similar feelings to read.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.