I guess my wife and I are still pretty new to the whole Down Syndrome game(19 months) and even though we’ve settled in and look forward to our lives with Little Peanut we still wonder how people are going to react when we go to some place new like we did this past weekend. The anxiety of waiting for a reaction from people is certainly not at the top of the list when we go away, but it’s there and I wonder if that feeling is ever going to disappear.
My nephew got married this weekend in Baltimore, MD which meant that family and friends from both sides were there to enjoy the festivities. For the most part people didn’t give us a second look, but on occasion there were those uncomfortable stares. I made eye contact and stared back at those who had decided to practice this rude behavior, but guarded my tongue, something I wouldn’t have done a year and a half ago. It’s getting easier to contain myself, but a part of me still wants to go nuclear on the “enemy”. I can’t be the only one that feels this way, I hope not. Like they say misery loves company.
Families that have been touched by a child with special needs are always (I realize always is an absolute and there are those that may feel differently) talking about the glory’s and the beauty’s of their child and how wonderful life is. I certainly subscribe to that, but sometimes I feel as if I’m lying to myself. I love Amanda for who she is, with or without DS. She certainly has proved to be a pillar of love in our home and the very sight of her will put a smile on anyone that walks through our doors. We have noticed a big change with our other two children as well. Elle and James are both accepting of others without prejudice and a bit more patient with other children. James has a girl in his class with DS, the teacher told us that while the other kids in his class are less tolerant when it takes this girl a little longer to do something, James sits/stands by her until the activity is done. Because of this, the little girl has taken a liking to my son and both are good friends. I’m not quite sure if James knows that his classmate is special, we are just now talking with Elle, my oldest, about her baby sister’s special needs. I think it’s safe to assume that James realizes that something is a bit different, but he’s probably not certain of what it is, nor should it matter.
Life is difficult, it isn’t always a bed of roses, we will likely have more bumps in the road than typical families, Amanda requires a lot more attention than our other two kids, there are things that my wife and I may not be able to do as we get into our golden years, however this is our life and we will know no other. At the same time, our over all outlook of life has changed for the best, the bumps in the road over time will become our norm, the extra time we spend with Amanda is incredibly wonderful, the interactions that all three of our children have together is breathtaking, and our golden years are to far away to even think about. We have accepted and embraced our destiny lovingly and enthusiastically.