It has been fascinating to me the reactions that I have gotten when I tell people that our new baby has Down syndrome.
Wait. Did I say reactions? I meant reaction. Because, thus far, there has only been one reaction. Nearly every conversation has gone something like this.
Me : So, the baby has Down syndrome.
Them: I know someone with Down syndrome.
variations : I know someone whose kid has Down syndrome; I know someone who had a baby with Down syndrome; I know someone whose sister had Down syndrome; I know someone who taught people with Down syndrome…. (you get the picture)
This is always followed by some statement to the effect of “and they were alright”.
I suppose this is meant to reassure me. If someone else can make it work, then I can too. I appreciate the attempt at encouraging conversation, I really do. And I am not saying it is wrong or bad or rude or anything like that. I just find it interesting that when I reveal that my child was born with a disability every person, without exception, tells me about a friend or acquaintance of theirs who also has that same disability.
I confess that even I, upon discovering that The Blessing had Down syndrome, remembered an old friend who had a brother with Down syndrome. It was comforting, I guess, to remember how normal that family was, how cute that baby was, and how blessed their lives were because of that child. It does help to know that there are those who have gone before and it is inspiring to see where they have prospered.
But the other side of this reaction is the lack of interest in my reaction. Everyone has told me how they are processing my daughter’s disability. Very few people have been interested in my reaction. How am I doing? Do you want to know?
Those that have asked how I am doing, have asked in a very timid way, as if they are afraid to offend me in the asking. Or perhaps they are afraid that I will break down right there and confess that I am a wreck. Whatever the reason, those that ask how we are doing do so cautiously and concernedly. I wonder if they believe me when I smile and say that we are doing great?
Because we are doing great. Having a child with Down syndrome does not devastate me. I am not emotional about her disadvantage. I am not afraid of her future.
I am overwhelmed at times, to be sure. And I do have moments when I wish it weren’t so. Sometimes I look at her face and all that I see is the shape of her eyes and the position of her ears. But those times are getting fewer as the weeks go by. Most of the time I see her, and I am filled with hope for her future.
I do not write this as a chastisement to those who have reacted this way. I am simply making an observation.