Sunday, October 25, 2009

being me...

U look tired…u have changed so much…u just do not seem yourself…comments that have frequented conversations lately…it is amazing to me that people have such a problem with empathy and/or understanding…I understand people not knowing what to say to a point… or how to react to me or my family…but Down Syndrome is not a disease you catch…it is not something to fear…I am tired…and I am not myself…I am tired because I have an infant child…that thinks she needs to talk in the middle of the night…I am tired because I am worried about her breathing, temperature, and just overall health…I am tired because I am carrying extra weight…I am tired because I have a daycare that keeps me on my feet all day…and I am tired because I also have a vivacious 4 year old…like any other mother…that has children…I am not myself…gone are the days… of that cannot happen to me…10 short months ago…my world changed…probably for the better…but it changed…who loves change…especially when you did not ask for it or want that change…I am not myself because I thought that I could handle anything…I am not myself because I have had to become more aware of my surroundings…who I let in to my world… I am not so eager to meet new people or keep in touch with old friends…that cannot help in my world…I realize this sounds selfish…but I have to be…I am a mother first…and a friend second…this may change as my role in this world changes…but for now I am not myself…I am searching for me…when you have a diagnosis of this magnitude…that you cannot change or fix…it humbles your entire being…I will live with a person born with Down Syndrome that I created for the rest of my life…I am frustrated that I will never fully understand what Maddox will feel and endure…I am different and I have changed…but I am better, stronger, and more clear then I have ever been…it is amazing when you are challenged this much…how stupid things no longer matter…but again I think this would be the case if I had given birth to a “normal” child…

2 comments:

  1. I can really relate to this post. For a while it seemed like everyone in my life was watching me to see how I was "holding up"... "You're not yourself"... I know I'm not. I will never be that self again. I am in love with someone that the world will never see through my eyes.. how can that not change me forever?

    It is nice to know, though, that I am not alone in this new space.

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  2. I remember very well when Gabe turned 10 months old. It was February 2006, and winter seemed to be gripping the city, and I was just coming down from the anxiety that escalated to no end from his heart surgery that took place the October before.

    When I found my footing, I realized how deeply tired I was. And I don't have other children, nor do I run a large daycare. (Only recently, I take care of a 20 month old boy.) I'm still fairly tired out, too. Gabe turns five in April.

    I just wanted to say that please make sure to take good care of YOU. Yes, you are a MOM first. Any good friend would recognize that...but it is important that you make time for yourself.♥

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