An Observation

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?

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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.

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4 thoughts on “An Observation

  1. *hugs* I think people are very hesitant to say the wrong thing so they’re first instinct is to try to encourage you. Down Syndrome is relatively common- like you’ve experienced EVERYONE seems to know SOME ONE with DS. When it’s a less common disorder, like Trisomy 18 or Alpers’ Syndrome, peoples’ response is very different. In our experience the most common(and almost laughably consistent) response is a gasp and, “Oh my God. What are you going to do?” Like surviving each day is not the only option. Because every day is different, our response to our challenges are different every day, and it’s all we can do when faced with something so overwhelming at times is to simply trust God and get through one more day.

    • I don’t think people understand that whatever we are given can be taken one day at a time. I have been told how strong I am because of the way we handled The Blessing’s hospital experience. I don’t feel strong. I am just dealing with what I have been given in the best way that I know how. I don’t know how I would have responded to your sweetie before I had The Blessing, but it sure would be different from now with some experience under my belt!

      • EXACTLY! I am told all the time, “You are so strong. I couldn’t do what you do.” They don’t seem to understand that strong is the only option even on the days I am a heap of weeping rubble inside. We do because we just DO.

  2. I am from the Moms of Many group on Rav. I sought out your profile because I was wondering how you were doing, how baby is and how you have all been. I thought you would be doing great, and you seem to be. I think I wanted to be encouraged because I had a feeling that your whole family would flourish, and I would see a beautiful family here. And I would see love. 😀

    I agree, people don’t know what to say, they are terrified to say something wrong and wound somehow…. We often hear the same thing, I’m sure you do about having a large family. People always tend to say the same thing, and we’ve long wondered why. I think truly they haven’t thought about it, and don’t really know what to say.

    Hugs,
    Rebecca

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