Monday, June 11, 2012

When someone notices (and a really good article)

(NOTE: this is kind of a long post if you don't feel like reading it all if nothing else skip to the article linked at the end, it is worth it)

I know it has been a while since I updated this blog, I guess I am still trying to figure out exactly what I want to do with it and such, I have had a lot of thoughts running around in my head lately. Since we have moved to Idaho I have had my first experiences with strangers commenting on Madeline having Down Syndrome. The first time was in Wal-mart. I was checking out some clothes in the baby section and one of the employees came by and of course Madeline smiled at her. She stopped and made a face back turned to me and asked if she had Down syndrome. It really wasn't that big of a deal but it was the first time someone had commented on it that wasn't a friend or family and already knew. I said 'yes' and she said her boyfriend had a nephew with Down's who was grown but that everybody loved him, and how I must be an amazing person to have her. I said thanks and we went our separate ways.

Two days later I took James to the local library for a music and movement kid group and a woman there said she had twin nephews with Down syndrome and she knew it must be hard but that they were really amazing kids. I can't say I was offended by either of these well meaning ladies, just surprised. I am so used to Madeline the way she is that in the daily grind of things I rarely think about her having Down syndrome, and I guess I have gotten use to the way she looks because I don't look at her and think 'oh she has Down Syndrome'. There are days that for some reason a look she has or something she is wearing I notice it more and go 'Oh Yeah' and move on, but for some reason having someone else notice had an effect on me.

I think since moving it has been nice in some ways because I wasn't surrounded by people who knew Madeline had Down Syndrome, not to say I am ashamed of it, because that would be all wrong but at times people just treat you differently, and it was nice for a few weeks just to be treated like a normal Mom with two kids.  I knew that I couldn't pull it off too long and a after a few weeks in church we were having a lesson on empathy and if anyone had an experience that taught them greater empathy. I raised my hand and talked about how when Madeline was in the hospital with her heart surgery we were not only shown so much charity and love from so many people (family, friends, acquaintances, and total strangers) but we were able to meet so many families who were struggling with trials much harder than ours. We truly came out of that hospital with more love, compassion, and humility than when we went in. But at the end of the lesson I couldn't help but see the look on so many faces, of sympathy, the 'I'm so sorry' look.  It isn't like I was offended or anything but it was nice just for a little while not to be noticed.

I'm not sure if my ramblings are really leading up to any big defining point or not. I'm still trying to figure exactly how I feel about it myself.  I have been realizing that everyone has something in their life that will get them the 'I'm so sorry' look, and truly it is one of empathy and love.  Some people struggle with trials that are more visible like Down syndrome or missing both your legs from serving your country (Another story for another day) while others struggle with things that may not be as visible like depression, infertility, lack of self-confidence, but whatever it is, at sometime when someone finds out we may get that look.  I have realized that this is really only the beginning of our journey and it will be one of those things I will face again and again, and Madeline will face for her entire life, but all I can do is be grateful that somebody cares. It may not be with complete understanding and may not be what I want to hear, (because what they don't know is that there really isn't anything to be sorry about) but I know that most the time it is meant with love and concern and I am glad that the world still has some of that when everything is going wrong.

So you may wonder what go me on this kick tonight. It started with reading this article. It is the best description of what I felt when Madeline was born and it was put so beautifully. I doesn't have much to do with what I have written but after reading it I decided I needed to write down what I have been feeling the past few weeks.

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