April 1, 2013

"I don't want to have Down syndrome"


Two days ago I posted the following picture on The Ordinary Life of an Extraordinary Girl’s facebook page.



The status update- “It took 19 years, but it finally happened. 'I don't want to have Down syndrome, I want to be like normal people'. It's a huge melt down and our words dismissed. My heart is breaking.” As a result of that status, I received many wonderful comments and shows of support for me and for Alex.

Once again I was reminded of the huge circle of support we have in the down syndrome community. A huge thanks to everyone who read our status, and an unabashed request to like our page and see these wonderful comments.

I know Alex’s meltdown was directly related to her rejection from her number one college choice. In Alex’s world there is not much gray, her life comes in black and white.  Alex knows that both her sister and brother were accepted at their first choice colleges, and to her that should be her norm. She knows both her sister and her brother can do a lot of things that she can't…go away with friends, buy what they want with the money they make, etc… and to her that should be her norm. Up until now Alex has been okay with this difference in independence, in the back of her mind she knew college would equalize her, that was her white.

Alex’s black occurred as she and her Dad spent the afternoon working on the University of Cincinnati’s application. The daunting task of filling out a 17 page application (some of it I can fill out) convinced her that applications were futile, further rejections will follow because she has down syndrome. It was an epic meltdown.

Alex has made the leap, the leap I have been dreading since she was 13, almost hoping it would never happen. She has learned that she is different and to her that is not a good thing, in fact it is now the reason Alex can not do a lot of things. 

And as Alex works through her application for the University of Cincinnati, I work through the many differences that are Alex. All good. All special. And all so Alex.

12 comments:

  1. My heart just breaks for you as a fellow parent. I too dread that moment. Sometimes I wonder, would it be easier if he never understood? Which of course goes against my wishes for him to excel at whatever he undertakes... this whole parenting thing is a gray area...

    Thinking of you all and encouraged to think we will have the same support when we too reach that stage.

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    1. Thank you so much...yes I am glad she knows - them more she can explain who she is the more she can advocate for herself!

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  2. I'm sorry, Gary. I can only imagine how that must have felt for both you and Alex. Rejection hurts, no matter who is being rejected, but I suspect it hurts Alex more because of the connection with Down syndrome. I am praying that something great will come out this for Alex. I know she will be successful, she just needs to find the place that's right for her. Please keep us updated about your progress!

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    1. You are so right Stephanie - you have such a great outlook on life - I really appreciate it

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  3. Oh this is heartbreaking. I think Beth realized it around 13, 14. Right around puberty. It is so hard because you can't fix it. You can't change the fact that she has Down Syndrome. I'm so sorry you guys are hurting. There are seasons in life when you have to re-accept the Down Syndrome every. single. day. And it hurts the same as the very first day.

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  4. Thinking of and praying for you all. I know I say this all the time but thank you for sharing and showing all of us the road ahead. More educational than any book on the matter.

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    1. Thanks so much, that's my goal - hope that does not sound like I am an egotistical maniac :)

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  5. The hardest thing for me is not being able to fix my children's hurts. Hugs for both of you. But I also know I stumbled a few times (more than a few times) growing up and that's how we fall forward - I wish it weren't so hard but I've no doubt she will find the right path.

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    1. Yes, you are so right...It is so hard when our kids stumble

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  6. This has been our past year as well. Having Leukemia has brought a whole new reality for Gabriel. He raises his fists to this and Ds. We have been working on ways he can help other younger kids with both has helped him. It is so heartbreaking. So sad for you and her. Big, long hugs.

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    1. Oh Rachel - I think about Gabriel and cancer so much. I know fist raising is only symbolic - but it does show the fight your son has.

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