Since I've moved to Virginia I've had the pleasure of working for and with several families who have a child with a disability. Sometimes I wonder if their experiences are more alike or more different to my own. I have never thought that life with a sibling with Down syndrome was hard-different, but never hard. I have no idea what the "typical" siblings think or what they even understand about their brother or sister and I wonder if they'll ever have a moment where they fully understand how different their life is going to be. I think as the older sibling, whereas all the non-disabled siblings in these situations are younger, I never had an "a-ha" moment. I always knew I was responsible for him, I knew it was my job to take care of him and protect him.
One of the women I recently met who has a child with Down syndrome posted that she could not both keep her son and keep him safe (regarding age expectancy). This has been one of my greatest fears since I turned 18 and became next in line to be guardian for J should something ever happen to our parents. It was sobering and the responsibility became almost suffocating. I had just started to learn how to take care of myself, how could I take care of another human? As I get older I worry more about this. I want J to live a long, long life because I know that if he went before me I could never live through it; the pain would be too terrible. But at the same time, how could I ensure his safety and happiness if I wasn't around? Since I moved away to college I have moved progressively farther away from home and him. I am nearly terrified every couple of days that something will happen and I won't be able to make it back in time, that I will lose him before I can say goodbye. It is a little silly and I have no idea if most people would even understand it. There is a much different bond between siblings when one of them has a disability-there is a type of unconditional love that I think is rare.
As I watch these families grow and experience pain and joy I am reminded of my own family's journey with a child with a disability. I don't remember much of our early years, most of my memories are not memories I actually remember, they are memories of stories my parents told me. While these families might have more hard days than easy days, more tantrums and meltdowns than peace and quiet, and more time spent on more simple things, I hope they realize how lucky they are. Weare so lucky that weget to see the world through different eyes, yes, we might see more injustice and prejudice than most people, but we feel more love, we get more satisfaction after accomplishing milestones, and most of all, we have more hope.
