Tuesday, April 12, 2011

white lie...

I seem to blog in my head a lot...I write in my head... will have a whole post written, read and published and it will never make it to this blog...sometimes I type a "new post" and it never makes it to publish...I write it and for some reason I am not happy with it...but most likely it is because I have lied in it...I have written something that I want to be true...rather then what is true...blogs seem to go in trends...writings often are about the same topics...I like it...it makes me feel I am part of something...but recently I wrote a blog about how I was ok with Down Syndrome...it is true I am ok with Down Syndrome...but what I lied about is that I do not see it in Maddie...that is a lie...I see it in her...in fact...characteristically it is becoming more overt...but what has changed...from the diagnosis to now...is that I do not see Down Syndrome as a challenge...a set back...I see Down Syndrome for what it is...simply put...a third chromosome...nothing more...nothing less...what is more prominent now is...what stems from the Down Syndrome...most likely Maddie would not have TEF/EA (constricted esophagus) if there was not a third chromosome present...Maddie most likely would have a ASD...considering half of the population is born with this heart defect and it is unidentified because the hole closes before a problem presents itself...Maddie most likely would not have a thyroid issue...but because of the third chromosome is has become a pesky little pill we take daily...it really does not effect much...but Maddie is unable to regulate her body temperature...so we do have to be aware of that...Maddie most likely would not be on two different medications for reflux...but because of the third chromosome it three times daily everyday....Maddie most likely would not have glasses at 1 year of age...but that third chromosome...has made it more likely she will have glasses for the rest of her life…surgery not an option...this however was just a matter of time…both me and Chad have horrible eyes…darn recessive genes...and the ped has already commented to us that Max will most likely have them...not a big deal...just another accessory...because that really is the point...is Down Syndrome a big deal? NOPE...but the accessories that come with the diagnosis can be a big deal...it is the consistent doctors visits...we go to every three months...it is the yearly blood work that tells that her body is working properly...it is the daily dosages of medications...it is the daily reminders of look at how amazing my daughter is...look at how far she has come...look at everything she has before her...when I see Max I am naturally impressed with his smarts...and with Maddie I am amazed at every little thing she does...because I know how hard she has worked… I know it is building to something bigger...Maddie blows me away everyday...characteristics of Down Syndrome are just yummy...I LIKE to kiss Maddie's thick neck...play tongue war just to get a kiss...I love how her toes have large spaces between them...and webbed on others...Maddie's teeth are deliciously CRAZY and cute....but most of all I melt every time she wraps her tubby little arms and hands around my neck smiling and laughing...that is the best...Maddie truly is my best accessory…and that is not a lie




9 comments:

  1. Thank you for sharing this, and for your honesty :)

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  2. Again, a beautiful post, baring such incredible honesty and heartfelt sentiment. Maddie is a lucky little girl.

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  3. You want to know something...I do not think it is a lie but more of you coming to a beautiful spot of acceptance. Acceptance of the fact that she has Down syndrome and then going past even to that spot of a love that is beyond your most imaginable dreams. So when others give us that pity look, what they will never get is this intense love that comes from having our kiddie! One I would never ever trade. Thanks for putting your feelings out there.

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  4. I love these posts...honest and from the heart! I see the Ds in Sutter more and more, but not in a "whoa he has Ds way" more in a "oh yeah, he has Ds" not sure if that makes sense?!? Anyway I loved this!!!

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  5. Amen! Very well stated and completely from the heart. I so enjoy reading your posts :)

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  6. We have those horrible eye genes too! Mondo has glasses, Tanner just got glasses, and I'm sure Carter is next!
    Maddie is truly delicious, because she is Maddie!

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  7. I love this post! I compose blog posts in my head all the time. Some times they don't get posted because I'm a procrastinator, sometimes because I'm not ready to post what I write...

    I see Ds in Claire and it doesn't bother me. It's just HER and I love her. There are a lot of times I don't see it (phyically) and then it just hits me. I have a picture that I've been meaning to post. I haven't done it because I'm not sure what I what to say. But I love the picture BECAUSE it looks like she has Ds and that doesn't bother me!

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  8. Very lovely. I feel the same about Eslea. Except I LOVE Es's eyes. They are magical and if it wasn't for her DS she wouldn't have stars in them. Thanks for sharing and saying what we all feel too. :)
    -erin

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