Thursday, January 20, 2011

just...humans

Down Syndrome babies are not disappearing via +15 facebook link…why do I let things like this get to me…first thing…my child is not a maybe so … maybe not child -aka abortion…she is a human…and second Down Syndrome babies are people, humans…why does society get so caught up in labels and categories…why cant my child  just be a human—just a person…why cant my child just be…why does she have to be observed and assessed regularly…why is she stared at and put in a box…a box of expectations that the person that is looking at her gives her…you know the person that has preconceived ideas of what a Down Syndrome person looks like, talks like, acts like…you know…today I am tired of Down Syndrome…I am tired of having to change EVERYTHING about me to accept my daughter…I used to fly by the seat of my pants and say things that were off color…now I cannot…I cannot go back to being ignorant, selfish and foolish…I have to be knowledgeable and thick skinned…I have to educate myself on things that I never thought I could...I have to be the expert in Maddie’s growth, health, education, and all around well being…how did this happen…I was the person that read Cosmopolitan and Glamour magazines and thought camping was staying at a one star hotel…and now I am defensive and scared…hotel stays are for hospital appointments and magazines turned into the internet and reading everything I can about Ds and everything that is associated with Ds…I know I am supposed to be thankful…I know I am supposed to be over it…I have made progress HUGE progress but today is just one of those days…

5 comments:

  1. I hate those kinds of days! Life has gotten so routine around here lately that I find myself forgetting about Down syndrome. We haven't had any type of therapy in over a month and I almost remember what life was like prior to Ds....until I get a call to schedule Sutter's 1yr IFSP, then his DT calls to confirm for Friday and his PT just sent me an email to see if Monday morning was good....there goes "normal"! They are just babies and I so wish that everyone would just treat them that way, little squishy balls of goodness that laugh and cry just like any other human...no judgement, no comparisons, no labels...just babies!

    At least we have "each other", people who understand and see that these cuties are just like everyone else. Going back isn't an option...although having Sutter will not make me enjoy camping...roughing it is a hotel room not a hotel suite now that we have kids! :)

    You've come a long way in the last year...Maddie is the luckiest little girl to have you as her advocate, friend, cheerleader and most importantly her MOM!!!

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  2. WOW. My daughter is 14 years old, so it's been a long time since I felt the way you described. We've had tons of peaks and valleys in those years, and there have been times I advocated strongly and other times I had to just stop, relax, and refresh myself.

    I'm always surprised at the comment from other people, "I'm amazed at how normally you parent her." My sweetie is fiercely independent, and I like to think her dad and I had a hand in helping her be that way.

    I remember thinking I had gotten over the shock of being in "Holland" and finding I still mourned over some of the craziest things. You will have those days, but hopefully many more of the great and wonderful days.

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  3. I think that every time I look at Arina. She is a healthy baby girl! Besides being beautiful and animated. What else do you need?
    My friend just told me about her psychology textbook that has a picture of a family and says that the mom was pregnant and the baby had an extra chromosome, so they aborted her. She went on to have another, "healthy" baby. She was so appalled that was in her book. Man we still have a long ways to go!

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  4. I just came across your blog. Hope you don't mind if I leave a comment. My little girl is just over a year old and I too have those days when I would like her to be seen and looked at as other children are. for the first year of her life she has seen more doctors and had more visites than I have had in my 30 years.Her birth has definatlly changed my life and my families. We are learning quickly to listen to people who have been through what we are going through and to throw other peoples comments out the window. I have days like you have discribed and I look at my sweet girl and am getting to the point where there are times that all I see is her. Not the diagnosis not the difference and I hope that other will beable to see her the way that I do.

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  5. I hate thoses too. They just kick my butt. Most of the time I'm able just to do my thing and then I'll read something, or someone will say something and the tears will come and come. It is nice to have all of our blogging friends as none of my IRL friends will ever really understand.

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